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Archive for December 16th, 2010

First Published Saturday, 31st May, 2008.

AUTISM/AS AND CATATONIA

Although the co-occurrence of Catatonia and autism/AS is said to be low, it’s been increasingly recognized in adolescents and young adults on the spectrum over the last 15 years. The following article includes case studies, a book review, links for further reading/research, hopefully providing the reader with a greater understanding of what’s considered an enigmatic condition. Before we take a closer look at all aspects of this particular condition, it’s important to point out the dangers in regard medication, specifically neuroleptics. I’m familiar with autistic people who experience catatonia. They would tell you that the following information on neuroleptics cannot be emphasized enough.


Neuroleptics are a class of drugs often strongly not recommended for people with catatonia.


There is, among life-threatening reactions:

    1. Neuroleptic malignant syndrome.
    2. Tardive dyskinesia affecting the airway (through affecting swallowing or breathing).
    3. Acute dystonic reaction affecting the airway.
    4. Anaphylactic shock.

For further information on this particular class of drugs and autistic people, please refer to “APANA”:

http://www.dinahm.pwp.blueyonder.co.uk/

frozen in time

The following information was last updated April, 2008 courtesy of Research Autism.
It provides us with a fairly comprehensive yet concise overview of what precisely Catatonia is, its prevalence, its causes, effects, interventions and some excellent Research articles and reading materials for those with a specific interest in this area.
http://www.researchautism.net/asditem.ikml?t=3&ra=45&infolevel=4


Description

Catatonia is a complex disorder covering a range of abnormalities of posture, movement, speech and behaviour associated with over- as well as under-activity.

There is increasing research and clinical evidence that some individuals with autism spectrum disorders, including autism and Asperger syndrome, develop a complication characterised by catatonic and Parkinsonian features (Wing and Shah, 2000; Realmuto and August, 1991).

In individuals with autistic spectrum disorders, catatonia is shown by the onset of any of the following features:

  • increased slowness affecting movements and/or verbal responses;

  • difficulty in initiating completing and inhibiting actions;

  • increased reliance on physical or verbal prompting by others;

  • increased passivity and apparent lack of motivation.

  • other manifestations and associated behaviours include Parkinsonian features including ‘freezing’, excitement and agitation, and a marked increase in repetitive and ritualistic behaviour.

When there is deterioration or an onset of new behaviours, it is important to consider the possibility of catatonia as an underlying cause.

Prevalence

Catatonia appears to be a relatively rare problem in people with autistic spectrum disorders.

For example, In a study of referrals to Elliot House who had autistic spectrum disorders, it was found that 17% of all those aged 15 and over, when seen, had catatonic and Parkinsonian features of sufficient degree to severely limit their mobility, use of speech and carrying out daily activities.

It was more common in those with mild or severe learning disabilities (ID), but did occur in some who were high functioning.

Causes

There is little information on the cause of catatonia. In the Eliot House survey, the development of catatonia in some people, seemed to relate to stresses arising from inappropriate environments and methods of care and management. The majority of the cases had also been on various psychotropic drugs.

Effects

Catatonia can have severe effects in people with autistic spectrum disorders. For example it can be very distressing for the individual concerned and it is likely to exacerbate the difficulties with voluntary movement and cause additional behavioural disturbances.

Interventions

Scientific evidence for interventions

There is no valid and reliable scientific evidence to show which interventions are effective in treating catatonia in people with autistic spectrum disorders.

There is very little evidence about effective treatment and management of catatonia. No medical treatment was found to help those seen at Elliot House (Wing and Shah, 2000). There are isolated reports of individuals treated with anti-depressive medication and electro-convulsive therapy (ECT) (Realmuto and August, 1991; Zaw et al, 1999).

Research

If you are a UK resident you may be able to obtain full copies of some of the items listed on this page from your local public library, your college library, or the National Autistic Society’s Information Centre. You may also be able to obtain copies of items from the publishers of those items.

  • Brasic JR et al. (2000). Dyskinesias differentiate autistic disorder from catatonia. CNS Spectr, 5(12), pp. 19-22. Read Abstract
  • Bush G. et al (1996) Catatonia. I. Rating scale and standardising examination. Acta Psychiatrica Scandinavica, 93 , pp. 129-136. Read Abstract
  • Dhossche DM, Carroll BT, Carroll TD. (2006). Is there a common neuronal basis for autism and catatonia? Int Rev Neurobiol., 72, pp. 151-164. Read Abstract
  • Gillberg C. and Steffenburg S. (1987) Outcome and prognostic factors in infantile autism and similar conditions: a population based study of 46 cases followed through puberty. Journal of Autism and Developmental Disorders, 17(2), pp. 273-287. Read Abstract
  • Kakooza-Mwesige A, Wachtel LE, Dhossche DM. [Epub ahead of print]. Catatonia in autism: implications across the life span. Eur Child Adolesc Psychiatry. Read Abstract
  • Neumarker KJ. (2006). Classification matters for catatonia and autism in children. Int Rev Neurobiol, 72, pp. 3-19. Read Abstract
  • Ohta M, Kano Y, Nagai Y. (2006). Catatonia in individuals with autism spectrum disorders in adolescence and early adulthood: a long-term prospective study. Int Rev Neurobiol, 72, pp. 41-54. Read Abstract
  • Realmuto G. and August G. (1991) Catatonia in autistic disorder; a sign of comorbidity or variable expressions? Journal of Autism and Developmental Disorders, Vol. 21 (4), pp. 517-528. Read Abstract
  • Schieveld JN. (2006). Case reports with a child psychiatric exploration of catatonia, autism, and delirium. Int Rev Neurobiol., 72, pp. 195-206. Read Abstract
  • Shah A, Wing L. (2006). Psychological approaches to chronic catatonia-like deterioration in autism spectrum disorders. Int Rev Neurobiol, 72, pp. 245-264. Read Abstract
  • Stoppelbein L, Greening L, Kakooza A. (2006). The importance of catatonia and stereotypies in autistic spectrum disorders. Int Rev Neurobiol, 72, pp. 103-118. Read Abstract
  • Takaoka K, Takata T. (2007). Catatonia in high-functioning autism spectrum disorders: case report and review of literature. Psychol Rep, Dec, 101(3), pp. 961-969. Read Abstract
  • Wing L. and Shah A. (2000) Catatonia in autistic spectrum disorders. British Journal of Psychiatry, Vol. 176 , pp. 357-362. Read Abstract
  • Wing L, Shah A. (2006). A systematic examination of catatonia-like clinical pictures in autism spectrum disorders. Int Rev Neurobiol, 72, pp. 21-39. Read Abstract
  • Zaw F. K. et al (1999) Catatonia, autism and ECT. Developmental Medicine and Child Neurology, Vol. 41, pp. 843-845. Read Abstract

Reading

Publications on this issue, other than scientific trials which have been published in peer-reviewed journals:

If you are a UK resident you may be able to obtain full copies of some of the items listed on this page from your local public library, your college library, or the National Autistic Society’s Information Centre.

  • Lishman W. A. (1998) Organic psychiatry: the psychological consequences of cerebral disorder pp. 349-356. Oxford: Blackwell.
  • National Autistic Society. (200?). Mental health and Asperger syndrome. London: NAS. Read Full item
  • Rogers D. (1992) Motor disorder in psychiatry: towards a neurological psychiatry. Chichester: Wiley.
  • Shah A. and Wing L. (2006) Psychological approaches to chronic catatonia-like deterioration in autism spectrum disorders. In Dhossche D.M. et al (eds.) Catatonia in autism spectrum disorders pp. 246-260 Academic Press.


The following book review is provided courtesy of “Communication” – NAS Magazine Volume 40 Number 3 Autumn 2006.

Catatonia in Autism Spectrum Disorders

Edited by Dirk M. Dhossche, Lorna Wing, Masataka Ohta and Klaus-Jurgen Neumarker.

Published by Elsevier http://www.elsevier.com/wps/find/bookdescription.cws_home/707498/description

Autism and Catatonia

Judith Gould, Director of the Centre for Social and Communication Disorders, reviews the first-ever book published on the relationship between autistic spectrum disorders and catatonia spectrum disorders.

Autistic spectrum disorders (ASDs) and catatonia spectrum disorders (CSDs) are each associated with unusual patterns of behaviour and little is known of their underlying nature, so this book is speculative, emphasising how little is known for certain and putting forward hypotheses to stimulate future research.

Until recently, ASDs were considered to be the province of child psychiatrists and psychologists, whereas CSDs were seen in the context of psychiatric illnesses, such as schizophrenia, that affect adults but which could also occur in children. However, when all the features that can be found in ASD are compared with all those that can be found in the catatonia spectrum, the remarkable degree of overlap cannot be denied. Both sets of conditions manifest many similar peculiarities of speech, posture, movement and behaviour. The most severe form of catatonia is catatonic stupor, where the person is immobile, holds strange postures and is mute. This may alternate with periods of excitement and irrational behaviour. However, catatonic features include slow movements, tip-toe walking, difficulty crossing lines and thresholds, holding hands in odd postures, stereotyped movements, echolalia and many others very familiar in people on the autism spectrum. Catatonic stupor can occur in autism but seems to be rare. However, perhaps 10% of adolescents and adults on the autism spectrum show marked exacerbation of the catatonia-like features to an extent that interferes with everyday activities. This is referred to as ‘catatonia-like deterioration’.

The first three sections of the book concern theoretical and practical issues of classification, assessment and the underlying biology of autism and CSDs.


Further research needed

The fourth section concerns behavioural and medical treatments and tackles the controversial subject of the use of electro-convulsive therapy (ECT) in children and adolescents, which arouses strong feelings. Frank Zaw points out the safety and success of ECT in treating catatonia in adults, but acknowledges the lack of evidence for or against its use in children, and in catatonia associated with ASDs, calling for further research.

Amita Shah and Lorna Wing discuss the psychological dysfunctions that may underlie catatonia-like deterioration in people on the spectrum and suggest that an unknown number of people who, in the old mental institutions, were diagnosed as having catatonic schizophrenia, were actually on the autism spectrum. They give a detailed description of psychological methods of intervention, with emphasis on providing an organised, stress-free daily programme and the encouragement of movement through verbal or, if necessary, physical prompting and through activities enjoyed by the person concerned.

Section five suggests blueprints for the assessment, treatment and future study of catatonia in those ASDs, recommending an initial search for possible causes, such as anti-psychotic medications. Treatment choices are the psychological approach, outlined by Shah and Wing, treatment with high doses of medication, such as lorazepam, or ECT. The authors make suggestions for future research and, given the current dearth of knowledge in the area, the field is wide open.

Catatonia-like deterioration affects only a small minority of people on the autism spectrum, but it is a great burden on the person concerned and their family. Perhaps the co-occurrence of autism and catatonia will provide a new and revealing clue to the nature of both conditions and, if this book stimulates research in this field, it will have achieved its objective.
Inspiration

Lorna Wing’s contribution to the book reflects her special ability to make connections that others have not thought of. Her experience as a psychiatrist, and as the parent of a daughter with classic Kanner’s autism, brought home to her the remarkable degree of overlap between autistic and catatonic features. During her lifetime, Susie Wing was the inspiration for Lorna’s innovative ideas concerning the nature of autism and so it is appropriate that this book has been dedicated to her.

frozen in time

The following information includes news and findings from the most recent studies. We also take a look at 3 case studies, that of an adolescent male, a 35 year old man and a 9 year old boy. Shah and Wing’s invaluable contribution is duly recognized.

Source: http://www.psychiatrictimes.com/display/article/10168/51131

Catatonia

Catatonia is a complex disorder covering a range of abnormalities of posture, movement, speech and behaviour associated with over- as well as under-activity (Rogers, 1992; Bush et al, 1996; Lishman, 1998).

There is increasing research and clinical evidence that some individuals with autism spectrum disorders, including Asperger syndrome, develop a complication characterised by catatonic and Parkinsonian features (Shah and Wing, 2006; Wing and Shah, 2000; Realmuto and August, 1991).

In individuals with autistic spectrum disorders, catatonia is shown by the onset of any of the following features:

  • increased slowness affecting movements and/or verbal responses;

  • difficulty in initiating completing and inhibiting actions;

  • increased reliance on physical or verbal prompting by others;

  • increased passivity and apparent lack of motivation.

Other manifestations and associated behaviours include Parkinsonian features including freezing, excitement and agitation, and a marked increase in repetitive and ritualistic behaviour.

Behavioural and functional deterioration in adolescence is common among individuals with autistic spectrum disorders (Gillberg and Steffenburg, 1987). When there is deterioration or an onset of new behaviours, it is important to consider the possibility of catatonia as an underlying cause. Early recognition of problems and accurate diagnosis are important as it is easiest to manage and reverse the condition in the early stages. The condition of catatonia is distressing for the individual concerned and likely to exacerbate the difficulties with voluntary movement and cause additional behavioural disturbances.

There is little information on the cause or effective treatment of catatonia. In a study of referrals to Elliot House who had autistic spectrum disorders, it was found that 17% of all those aged 15 and over, when seen, had catatonic and Parkinsonian features of sufficient degree to severely limit their mobility, use of speech and carrying out daily activities. It was more common in those with mild or severe learning disabilities (ID), but did occur in some who were high functioning. The development of catatonia, in some cases, seemed to relate to stresses arising from inappropriate environments and methods of care and management. The majority of the cases had also been on various psychotropic drugs.

There is very little evidence about effective treatment and management of catatonia. No medical treatment was found to help those seen at Elliot House (Wing and Shah, 2000). There are isolated reports of individuals treated with anti-depressive medication and electro-convulsive therapy (ECT) (Realmuto and August, 1991; Zaw et al, 1999).

Given the scarcity of information in the literature and possible adverse side effects of medical treatments, it is important to recognise and diagnose catatonia as early as possible and apply environmental, cognitive and behavioural methods of the management of symptoms and underlying causes. Detailed psychological assessment of the individuals, their environment, lifestyle, circumstances, pattern of deterioration and catatonia are needed to design an individual programme of management. General management methods on which to base an individual treatment programme are discussed in Shah and Wing (2001).

daisy down

Recent studies(as reported in Psychiatric Times) September 1, 2006. Vol. 23 No. 9:

Only 2 systematic studies of catatonia in autism have been reported.3,4 They suggest that catatonia-like features are present in about 1 of 7 (12% to 17%) adolescents and young adults with autism and constitute an important source of impairment in this population. In a recent study, 17% of a large referred sample of adolescents and young adults with autism satisfied modern criteria for catatonia.3 Thirty persons with autism aged 15 years or older met criteria for catatonia. Classic autistic disorder was diagnosed in 11 persons (37%), atypical autism in 5 (17%), and Asperger disorder in 14 (47%).

None of those under the age of 15 years had full catatonic syndrome, although isolated catatonic symptoms were often observed. In the majority of cases, catatonic symptoms started between the ages of 10 and 19 years. Five individuals had brief episodes of slowness and freezing during childhood, before 10 years of age. Schizophrenia was not diagnosed in any of the patients.

In a report based on a population study, 13 (11%) of 120 autistic persons aged 17 to 40 years (mean age 25.5 years) had clinically diagnosed catatonia with severe motor initiation problems.4 Another 4 had several catatonic symptoms but not the full syndrome. Autistic disorder was diagnosed in 8 of the 13 persons with catatonia; atypical autism was diagnosed in the remaining 5. The proportion of those with autistic disorder in whom catatonia was diagnosed was 11% (8 of 73); 14% of those with atypical autism (5 of 35) had catatonia.

An increasing number of case reports and case series on catatonia in autism that satisfy DSM-IVcriteria for catatonia have been published in the past 15 years.5-15 There is considerable overlap of psychomotor symptoms between the 2 disorders (eg, muteness, echolalia, stereotypical movements, and other psychomotor peculiarities).16 The diagnosis of catatonia in published cases was based on significant worsening of these symptoms and emergence of other catatonic symptoms. Some of the authors report that patients responded to treatment with lorazepam (the benzodiazepine most often used) and/or ECT. It should be noted that none of these studies were controlled and the number of cases was very small.

Case 1: Catatonia in an autistic adolescent

A boy in whom Asperger disorder had been diagnosed showed a decline in function at the age of 15 years when he stopped speaking except to family members. His posture deteriorated. He began to slump and would complain of back pain. At school, he refused to enter classrooms and would walk slowly through corridors with his head down. He was unable to retain food in his mouth. Eventually, he required support in order to stand. He showed poor fine and gross motor skills, with difficulty in holding and using implements (such as a knife to butter bread). His speech slowed excessively at home. He would not engage in activities other than those associated with his specific interest in transport, mostly aircraft. By the age of 17 years, it was very difficult to get him to leave the family home. He required assistance washing and dressing and stopped using the toilet. The psychiatrist considered a diagnosis of catatonia but demurred because of the seemingly selective occurrence of symptoms. During medical examinations, the patient was often uncooperative and unresponsive. He refused to take the prescribed diazepam and fluoxetine.

An intensive behavioral intervention was started using the framework set out by Shah and Wing15 for the treatment of catatonia in patients with autism. On evaluation 9 months later, he showed improvement, speaking more and walking almost everywhere independently. He was able to express a wider range of emotion verbally and nonverbally. Recent testing revealed an IQ of 89. Despite the progress made, he continues to show various motility problems across all circumstances, mainly slowness of movement, clumsiness, inability to control movement, poor coordination, freezing of movement, and awkward posture. The parents are pursuing other treatments for his condition.

Diagnostic considerations

A diagnosis of catatonia in this patient is likely. An algorithm for the assessment of catatonia in autism is shown in Figure 1.17 From the age of 15, the patient showed various catatonic symptoms, including mutism, stupor, and posturing, that have remained present although his level of function has recently improved. His symptoms satisfy criteria for catatonia in autism shown in the Table.17

TABLE

Diagnostic criteria for catatonia in autism

Criterion A
Immobility, drastically decreased speech, or stupor of at least 1 day’s duration, associated with at least 1 of the following: catalepsy, automatic obedience, or posturing
Criterion B
In the absence of from baseline, for slowness of movement prompted, freezing stereotypy, echophenomena, ambitendency

The severity of catatonia should be determined by assessing the degree to which activities of daily living, occupational activities, and physiologic necessities (eating, drinking, and excretion) are affected. Definitions of mild, moderate, and severe catatonia can be found elsewhere.17 The level of impairment should guide the need for services and staffing levels, as well as the choice of available anticatatonic treatments. At his worst, the patient described above seemed to have severe catatonia–stupor, immobility for most of the day, and need of assistance with food intake–constituting a medical emergency. Patients with features of malignant catatonia (fever, altered consciousness, stupor, and autonomic instability as evidenced by lability of blood pressure, tachycardia, vasoconstriction, and diaphoresis) also fall in this category. Severe and malignant catatonia are indications for administration of lorazepam and ECT.

Does catatonia in autism respond to treatment?

An algorithm for the treatment of moderate catatonia in autism, as in the patient presented in the first case vignette, is shown in Figure 2.17 The proposed schedule relies on the recommendations of some catatonia researchers18,19 and some published case reports and case series.5-15 The psychological approach to treatment outlined below should be available for use in combination with medication or alone if medication fails.

Case 2: Lorazepam treatment

Severe psychomotor retardation developed over the last year in a 35-year-old man who was living in a residential treatment facility. His diagnoses included atypical autism, moderate ID, and seizure disorder. He stood motionless for hours, often in odd postures. His speech had decreased considerably, and he required assistance in daily living activities. The psychiatric examination did not reveal hallucinations or delusions. His medications included an antiepileptic agent for long-standing grand mal seizures and an atypical antipsychotic for a tentative diagnosis of psychosis not otherwise specified. Trials of antipsychotic medications have had no effect on his motor symptoms.

At this point, catatonia was diagnosed and a trial of lorazepam was started with the dosage titrated over the course of 2 weeks to 4 mg twice a day. The hospital administrators expressed concern that the patient might become dependent on benzodiazepines, but the psychiatrist assured them that lorazepam at the prescribed high dose is an accepted treatment for catatonia. The patient responded well to treatment, with decreased psychomotor slowness, fewer freezing episodes, and increased socialization. Three months after the start of lorazepam, catatonia had resolved. The patient functioned at baseline level again, and he had resumed work at a sheltered workshop. His medications include an antipsychotic, an antiepileptic, and lorazepam (4 mg twice a day). Lorazepam will be tapered and stopped if the patient continues to do well over the next 3 months.

Novel psychological treatment

A new addition to the anticatatonic armamentarium is the psychological method developed by Shah and Wing.15 In brief, the treatment involves keeping the person active, doing what he or she enjoys, using verbal or gentle physical prompts to overcome movement difficulties, and maintaining a predictable structure and routine for each day. The importance of educating caregivers to understand catatonic behavior and to realize that it is not under the control of the patient is paramount. Management techniques for specific issues such as incontinence, freezing in postures, eating problems, and episodes of excitement are specified. This approach can be used in conjunction with medical treatments or when medical treatments fail.

Case 3: Pediatric ECT

A 9-year-old boy with apparently normal development but high familial loading of psychosis was admitted for agitation, anxiety, perplexity, negativism, and psychomotor slowing. Stupor, mutism, fever, and facial flushing developed over the next 2 weeks. Results of extensive medical and psychiatric workups were negative. EEG recordings consistently showed overall slowing but no epileptic spikes. The symptoms satisfied criteria for CDD, which is characterized by massive regression after the age of 2 years but before the age 10 of years, followed by autistic symptoms. In the absence of recommended treatments for CDD, other medical and psychiatric diagnoses– including encephalitis and malignant catatonia–were considered. After failed trials with anticonvulsants, antiviral medications, and high-dose benzodiazepines, expert opinions regarding an ECT trial were sought; ECT consent was obtained from the caregiver. Stupor, muteness, and refusal to eat and drink improved rapidly during the first course of 7 treatments, but agitation, stereotypies, repetitive speech, and poor level of function remained.

Despite the widely different developmental and recent history, the symptoms of this patient were similar to those of other children with autism and conformed to the differential diagnosis of CDD. A second ECT course was given because the patient relapsed into stupor and immobility. Again, the most severe catatonic symptoms dissipated, but the patient remained impaired. The patient was discharged and continued with outpatient ECT (once every week or biweekly) for the next 5 months. During that time, the boy slowly returned to baseline function and now attends school and lives at home. There have been no relapses during the past 3 years.

Are autistic and catatonic regression related?

This case illustrates the importance of diagnosing catatonia amidst severe regression of unknown cause in prepubertal children in order to select effective therapies. CDD is considered rare, with a pooled estimate across 4 surveys of 1.7 per 100,000 subjects (95% confidence interval, 0.6-3.8 per 100,000).20 However, it is also likely that an unknown number of cases are not reported because neurologists and other pediatric specialists who are not familiar with the psychiatric classification of CDD label this condition differently (eg, as encephalitis). Textbooks describe CDD as sometimes being associated with known medical conditions, but usually no clear cause is found. Deterioration occurs over the course of weeks or months. Residual symptoms include impaired social interaction, restricted language output, and repetitive behaviors. Follow-up studies have suggested that older age at onset of autistic symptoms, as in CDD, may be associated with worse outcome.21 There is no recommended treatment.

Catatonia has also been reported infrequently in children,22,23 although no systematic studies in this age group have been done. The oldest description of catatonic symptoms (in a 3-year-old child) comes from de Sanctis (1908-1909).24 Lorazepam and ECT were reported to be effective in 2 more recently published reports.22,23

CDD and childhood catatonia are both poorly studied and probably poorly recognized. Catatonia should be studied systematically in children, adolescents, and young adults with psychiatric, neurologic, and developmental disorders–especially autism and Prader-Willi syndrome.25,26 The symptom overlap between autistic regression in CDD and catatonia should be further assessed, and the presence of catatonic symptoms should be assessed during regression in children with autism.27 Most important, catatonia in children seems to respond to the same treatments as in adults.

Recent accounts provide empirical evidence that catatonia is diagnosable in 7% to 17% of acute psychiatric inpatients and is treatable.18 This contradicts earlier comments that catatonia may have disappeared in adult psychiatry.28 Given these conflicting views and the ambiguous nosologic status of catatonia in DSM-IV,one could argue that catatonia has become like the elephant and the blind men. Many aspects of catatonia are described but the syndromal diagnosis is often not made, possibly leading to suboptimal therapy. The emerging evidence that a similar proportion of autistic adolescents and adults also meet criteria for autism has 2 major clinical implications.

First, catatonia should be considered in any autistic patient of any age when there is an obvious and marked deterioration in movement, pattern of activities, self-care, and practical skills. An outline for diagnostic evaluation in such cases is shown in Figure 1 and the Table. Researchers should seek further evidence that catatonia in autism responds to accepted anticatatonic treatments. Treatment responsiveness is key in clarifying the nature of the beast. Clinicians may find the proposed treatment algorithms for catatonia in autism, as in Figure 2, helpful in the treatment of the disorder in these challenging patients.

Second, autism should be considered as the underlying condition in patients presenting with catatonia, especially in those with histories of developmental problems. Psychiatrists working with adults are usually much more familiar with schizophrenia and other psychotic disorders than autism. Therefore, catatonia may be misdiagnosed as a feature of schizophrenia, and any underlying diagnosis of autism may be missed, leading to possible suboptimal treatment of both catatonia and autism.

Limitations

The lack of controlled studies and the very small number of published cases to date must be emphasized. It is not clear from the available evidence whether treatment with lorazepam and/ or ECT is helpful in all cases of autism in which catatonic features become exacerbated or only in those with very severe forms of catatonia. Another consideration is the likelihood that only examples of successful treatments will be published. These problems emphasize the necessity for more research in this field. Cooperation between centers would be particularly valuable because each clinician is likely to see only a few cases.

Evidence-based References

  • Dhossche D, Wing L, Ohta M, Neumarker K-J, eds. Catatonia in Autism Spectrum Disorders. International Review of Neurobiology, No. 72. San Diego: Elsevier Academic Press; 2006.Wing L, Shah A.

  • Catatonia in autistic spectrum disorders. Br J Psychiatry. 2000;176:357-362.

References
1. Scattone D, Knight KR. Current trends in behavioral interventions for children with autism. Int Rev Neurobiol.2006;72:181-193.
2. Buitelaar JK. Why have drug treatments been so disappointing? Novartis Found Symp. 2003;251: 235-244.
3. Wing L, Shah A. Catatonia in autistic spectrum disorders. Br J Psychiatry. 2000;176:357-362.
4. Billstedt E, Gillberg C, Gillberg C. Autism after adolescence: population-based 13-to 22-year follow-up study of 120 individuals with autism diagnosed in childhood. J Autism Dev Disord. 2005;35:351-360.
5. Realmuto GM, August GJ. Catatonia in autistic disorder: a sign of comorbidity or variable expression? J Autism Dev Disord. 1991;21:517-528.
6. Dhossche D. Brief report: catatonia in autistic disorders. J Autism Dev Disord. 1998;28:329-331.
7. Zaw FK, Bates GD, Murali V, Bentham P. Catatonia, autism, and ECT. Dev Med Child Neurol. 1999;41: 843-845. <8. Brasic JR, Zagzag D, Kowalik S, et al. Progressive catatonia. Psychol Rep. 1999;84:239-246.
9. Hare DJ, Malone C. Catatonia and autistic spectrum disorders. Autism. 2004;8:183-195.
10. Ghaziuddin M, Quinlan P, Ghaziuddin N. Catatonia in autism: a distinct subtype? J Intellect Disabil Res. 2005;49:102-105.
11. Ohta M, Kano Y, Nagai Y. Catatonia in individuals with autism spectrum disorders in adolescence and early adulthood: a long-term prospective study. Int Rev Neurobiol. 2006;72:41-54.
12. Cohen D. Towards a valid nosography and psychopathology of catatonia in children and adolescents. Int Rev Neurobiol. 2006;72:131-147.
13. Schieveld JN. Case reports with a child psychiatric exploration of catatonia, autism, and delirium. Int Rev Neurobiol. 2006;72:195-206.
14. Fink M, Taylor MA, Ghaziuddin N. Catatonia in autistic spectrum disorders: a medical treatment algorithm. Int Rev Neurobiol. 2006;72:233-244.
15. Shah A, Wing L. Psychological approaches to chronic catatonia-like deterioration in autism spectrum disorders. Int Rev Neurobiol. 2006;72:245-264.
16. Stoppelbein L, Greening L, Kakooza A. The importance of catatonia and stereotypies in autistic spectrum disorders. Int Rev Neurobiol. 2006;72: 103-118.
17. Dhossche DM, Shah A, Wing L. Blueprints for the assessment, treatment, and future study of catatonia in autism spectrum disorders. Int Rev Neurobiol. 2006;72: 267-284.
18. Fink M, Taylor MA. Catatonia: A clinician’s guide to diagnosis and treatment. Cambridge: Cambridge University Press; 2003.
19. Caroff SN, Mann SC, Francis A, Fricchione GL, eds. Catatonia: From Psychopathology to Neurobiology. Washington, DC: American Psychiatric Publishing; 2004.
20. Fombonne E. Prevalence of childhood disintegrative disorder. Autism. 2002;6:149-157.
21. Volkmar FR, Cohen DJ. Disintegrative disorder or “late onset” autism. J Child Psychol Psychiatry. 1989;30: 717-724.
22. Dhossche DM, Bouman NH. Catatonia in an adolescent with Prader-Willi syndrome. Ann Clin Psychiatry. 1997;9:247-253.
23. Dhossche D, Bouman N. Catatonia in children and adolescents. J Am Acad Child Adolesc Psychiatry. 1997; 36:870-871.
24. Neumarker KJ. Classification matters for catatonia and autism in children. Int Rev Neurobiol. 2006;72: 3-19.
25. Dhossche DM, Song Y, Liu Y. Is there a connection between autism, Prader-Willi syndrome, catatonia, and GABA? Int Rev Neurobiol. 2005;71:189-216.
26. Verhoeven WM, Tuinier S. Prader-Willi syndrome: atypical psychoses and motor dysfunctions. Int Rev Neurobiol. 2006;72:119-130.
27. Dhossche DM, Rout U. Are autistic and catatonic regression related? A few working hypotheses involving gaba, Purkinje cell survival, neurogenesis, and ECT. Int Rev Neurobiol. 2006;72:55-79.
28. Mahendra B. Where have all the catatonics gone? Psychol Med. 1981;11:669-671.

News Reports

11 April 2008  “Catatonia in childhood schizophrenia explored”:
http://www.inpsychiatry.com/news/article.aspx?id=74252

19 May 2008 “ECT:  Doctors don’t know how it works, so why use it?”:
http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2008/05/19/hect119.xml

Further Reading Material:

“Catatonia  From Psychopathology to Neurobiology”

http://www.appi.org/book.cfm?id=62085
“It’s Ok, Eli by Carol Surber”

http://aspie-editorial.blog-city.com/book__its_ok_eli_by_carol_surber.htm
“Catatonia in Autism Spectrum Disorders”

http://www.abebooks.co.uk/servlet/BookDetailsPL?bi=992065488&isbn=0123668735
“eMedicine – Catatonia: Article Excerpt by James Robert Brasic”:

http://www.emedicine.com/neuro/byname/catatonia.htm
“Jessica Kingsley Publishers” – For a wide range of publications on or including information relating to Catatonia:

http://books.google.com/books/jkp?hl=en&q=catatonia&btnG=Search+Books

rose frozen in time

1. carol left…

Saturday, 2 May 2009 12:06 am

My son, born with Downs syndrome, was diagnosed at the Ohio State University before age three as autistic. He attended early childhood education classes there for nearly 6 years. By age 16, he experienced a trauma at a new educational setting, unknown trauma, then developed severe, life threatening catatonia. He was mute, posturing, staring and stayed this way for nearly 8 months until….a catatonic specialist intervened and saved him. His name is Dr Brendan Carroll, and at the time, was working at the Neuropsychiatric part of the Ohio State University hospital. His work with catatonia is featured in the book, Catatonia-From Psychopathology to Neurobiology. He worked near 2 years to combine medications to keep Eli in the world..at a functioning level. Eli is now 32, and Dr Carroll stays active in his care. He has episodes of catatonia each day, but they last only minutes. The behavioral episodes of catatonia stay ever present. I kept journals from the time of my son’s birth, through 22 years of his life. Unknowing, I recorded all the pre-symptoms of the catatonia as it emerged and took Eli to another world. I also noted each treatment, medication and side effects. I published the unedited journal , Feb 2008. Titled– It’s Ok Eli– Autism and catatonia is more recognizable in Downs syndrome now…and possibly my book will help explain, accept and find treatment for those afflicted. At age 32, Eli has not regained the speech he lost at age two, his autistic rituals control his days, but he still functions at work, living with his autistic roommate for the past 6 years, and living his life! Love and sunshine to all, Carol and Eli http://stores.lulu.com/store.php?fAcctID=912333



First Published Wednesday, 28th May, 2008.

Fla. kid ‘voted out’ of class has autism

Published: May 28, 2008 at 12:40 PM


PORT ST. LUCIE, Fla., May 28 (UPI) — A Florida family says their 5-year-old son, who was drummed out of his elementary school class, has been diagnosed with autism.

The Palm Beach (Fla.) Post said Wednesday that Alex Barton was found to be autistic by a psychiatrist on Tuesday, about a week after he was allegedly stood up in front of the room at Morningside Elementary School in Port St. Lucie, Fla., and forced to listen to his classmates tick off a list of things they didn’t like about him.


The class then reportedly voted 14-2 to send Alex packing.


“That anyone would do that to a child, it’s just sickening,” Alex’s mother, Melissa Barton, told the newspaper.


The Bartons were angry enough that they filed a police report. The teacher in question has been reassigned outside the classroom, the newspaper said.


The head of the district’s special education department told the Post that teachers generally aren’t given training on dealing with autistic students until one of their students had been officially diagnosed.



Source:  http://www.upi.com/NewsTrack/Top_News/2008/05/28/fla_kid_voted_out_of_class_has_autism/2940/

Further Report:

Mom Outraged After Son, 5, Voted From Class

Mother Wants Teacher Fired


POSTED: 11:12 am EDT May 28, 2008
UPDATED: 11:49 am EDT May 28, 2008

A South Florida mother wants her son’s teacher fired after his classmates voted him out of their kindergarten class.Alex Barton, 5, was instructed by his teacher last week to stand in front of the class at Morningside Elementary in Port St. Lucie and listen as his classmates described what they disliked about him, according to a police report.The boy’s teacher, Wendy Portillo, then had the class vote on whether Alex should be kicked out of the class, authorities said.



Alex’s mother, Melissa Barton, said she was shocked to hear what had happened when her son came home last Wednesday, WPBF-TV in Palm Beach Gardens reported.”He came to me and said, ‘Mommy, 14 kids voted me out of my class,'” Barton said.Barton, who said her son has been diagnosed with autism, said she then went to her son’s teacher for answers.”She basically told me that she put him in front of his entire class and asked each child to say what they don’t like about Alex, and they voted him out of his class,” Barton said.Barton said her son’s teacher and the principal at the school knew Alex had been tested for autism. WPBF was unable to reach them for comment.St. Lucie County School District Superintendent Michael Lannon said he has received nearly 300 e-mails from all over the world about the case.Lannon said Tuesday that the school district is investigating and is expected to release their findings sometime in the next two or three weeks.”We will not push things under the rug, and we will not stick our heads under the sand. We will deal with it,” Lannon said.Alex’s mother said she wants Portillo fired, but Lannon said that there is a certain process the district must follow in cases like this.



Source:  http://www.nbc4.com/education/16413083/detail.html

1. Denise left…

Thursday, 29 May 2008 1:47 am :: http://www.myspace.com/moto110

Yesterday was a huge day for my Son Michael. He finally graduated. This was not a normal thing like most children in this world. Alot of people just dont understand what this child or I guess I should say Man has been through.

First of all he has the highest level of ADHD that you can have. Growing up for Michael was not a easy task by no means either. I was 17 when he was born and it was not a easy road for a long time. He dealt with me and his father getting a divorce. He dealt with watching his father battle a drug problem. He lost a Step-Dad that truly cared for him… He has always looked for that solid Father figure that was going to be there for him when Michael needed them not when they needed Michael. His Poppy is the only sure man that Michael has had since birth.

School life for Michael was always tough. Fighting ADHD on a daily basis was always his toughest task. The schools even had special meetings that if he couldnt be still that he had permission to go outside and run around the school to get rid of the energy busting out of him. He had very little control over ADHD. He would say out loud “Self please chill out”. He hated taking medicine cause of the zombie side effects. So we just dealt with it. The teachers were always at wits end with Michael. They just didnt get it. I would go talk to them and their exact words is “I want to hug him and at the same time I want to pinch his head off”. Michael loves everyone, and everyone loves Michael…… His grades wernt the greatest and I was just happy that he even had a grade.

His Junior year started and here was our first meeting of how we are going to deal with Michaels ADHD this year. They made him a stand up desk so he could wiggle around freely in the back of the room. And before the meeting was over Mrs. Gilpatrick stood up and looked Michael straight in the face and said “Why dont you just quit? Your almost 18 now.. Go get your G.E.D.” It took everything that I had in my power not to just get up and go off. I bursted out in tears and did throw a little bit of a fit. His head just dropped and he had that look of failure all over his face. He told her that he wasnt proud of the ADHD but he wanted to stay in school. I politely told her in a stern voice that she needed to keep her opinion to her self. All the way to work that day I cried my eyes out for fear that he would quit school. I told him over and over we made it this far lets keep going.

After that teacher spoke those words to Michael he always felt as if he wasnt wanted at school looking for the perfect reason to give up. He is constantly looking for the place where he fits in. He is constantly on the go. If yu want to punish Michael to the worst level just make him sit in a chair for a hour. He cant do it, the energy is bursting out of him.

Junior year was finally over and he was finally going to be a Senior. I was so excited that he was finally going to make it. He turned 18. We went and bought him a new jeep. He was so high on life. He now had a new ride that the top come off and he could just go and go. 23 days later he was hit head on by a man that was drunk, had no drivers licence, no insurance, no tags and it wasnt even his car. It hurt Michael so badly that he had to be flown to Earlanger in Chattanooga. His jeep was totalled. His face was so bad that his nose was within a 1/4 inch of being ripped off and nearly lost his eye. His chin was cut so bad that his tongue was coming out of it. He was so determined to make me calm down that he made me kiss him and he tried to assure me that he was ok. I could have lost him on that day so easily.

Senior year was finally here and he was only going to school two hours a day and then he was on the Co-Op program where you got a credit for working. So he was out of the teachers hair and they were basically rid of him. They seemed pleased. So I get a phone call from Michael in December that they are going to MAKE him graduate early. I would have never had time to get there for that. It was going to happen within the hour. NO NOTICE NO NOTHING! I called and demanded that he get to walk the line in May cause it was them that wanted the early graduation not me or Michael for that matter.

May finally came and last night I got to see My SON walk that line. All day long I teared up so many times. I honestly thought that he would give up before this day ever came. What people think of Michael means so much to him. He is definatly the light of the party. He is so much fun to be around. To see him shake that mans hand and take that diploma with his other all I could do is yell “You finally did it Michael” I was never so proud in all my entire life. I was so high in the clouds that I had to look down to see everyone. I cried so hard that I couldnt even stop. now is the kicker……..

Michael was next to the last in the line. I didnt care where he was as long as he was in that line. The last boy to graduate was wheelchair bound and he has severe cerebal palsy when he got that diploma he was so happy that he started shaking uncontrollably and everyone stood up and clapped and watching the tear roll down that boys face cause he was so happy cause he finally made it too. No matter whats wrong with you, if your in a wheelchair or if you are fighting ADHD everyone deserves the opportunity to be treated equal. I am so proud of Michael and the boy in the wheelchair, they both beat the odds. They both found the final result. They may not have had the highest GPA but they left that building that night with their heads held higher than anyone there cause they struggled more than anyone for that piece of paper.

Ok sorry I bored you all to death with this but I just wanted to get this off my chest. I have thought about it all day and I am a proud mother of a graduate of Livingston Academy 2008 class.

2. Julie left…

Thursday, 29 May 2008 1:49 pm

Denise, thank you so much for sharing this. It’s made my week! Firstly, my most sincere “Congratulations!” to Michael upon his graduation. What a moment for you both! You have both been through so much and your story, your words, are truly inspiring.

I wish you and Michael a future with far fewer struggles, and far greater happiness than you’ve previously known. I’ll be including your blog site among my favourites here. It’s an absolute pleasure to know of you both.

Again, “Congratulations!”

Julie



First Published Tuesday, 27th May, 2008.

*At the request of the Tseglin Family, the Autistic Self Advocacy Network
sent the following letter yesterday for use in a court hearing to determine
the future of Nate Tseglin. If you are as of yet unfamiliar with Nate’s
case, please visit
**http://www.getnatehome.com/faq.html*<http://www.getnatehome.com/faq.html>
* for details. Please feel free to distribute.*

To Whom It May Concern:

The Autistic Self Advocacy Network (ASAN) is an international organization
of adults and youth on the autism spectrum, including Asperger’s Syndrome,
working to promote the interests of the autistic self-advocate community
through public policy and social change advocacy. We are writing as friends
of the court to express our concern about the treatment of Nate Tseglin, a
young adult with a diagnosis of Asperger’s Syndrome who has been taken away
from his family and placed in an institution under heavy psychotropic
medication.

The right of individuals with disabilities to live in the community has been
well established by the United States Supreme Court under the landmark
Olmstead v. L.C. decision. The ruling requires states to shift funding from
institutional placements to community living supports. Given the clear
evidence that institutional settings and the indiscriminate use of
psychotropic medication negatively impact the quality of life of autistic
adults and youth, we are concerned by Nate’s continued placement under
restraint in a residential facility where he is isolated from his family,
his community, and any meaningful educational or social opportunities. The
overwhelming consensus of the scientific community indicates that such a
placement is inappropriate, unnecessary, and counterproductive.

Scientific studies have not found that autistic persons are more likely to
commit violent acts or violent crimes than non-autistic persons despite some
media sensationalism of isolated cases of violence (Murrie, Warren,
Kristiannsson, & Dietz, 2002; Barry-Walsh & Mullen, 2004). Autistic persons
are, however, more likely to experience depression, anxiety, and low
self-esteem, for which cognitive-behavior therapy (CBT) and one-on-one talk
counseling are the recommended interventions (Stewart, Barnard, Pearson,
Hasan, & O’Brien, 2006; Sofronoff, Attwood, & Hinton, 2005). Autistic
persons also require positive support systems, frequent encouragement and
praise, and living and learning environments that are compatible with their
cognitive strengths, challenges, and preferences in order to achieve success
in their life pursuits and gain a high quality of life (Renty & Roeyers,
2006; Plimley, 2007). Psychotropic medications should always be used with
extreme caution with autistic persons as typically these medications are not
specifically tested on this population in clinical studies, and psychotropic
medications may cause substantial harm if used in an indiscriminate fashion.

Nate’s current placement does not meet his needs and is likely to result in
long-term physical and emotional damage. We urge the Court to recommend that
Nate be removed from the Fairview Developmental Center and returned to the
community.

Regards,

Ari Ne’eman
The Autistic Self Advocacy Network,
President
1101 15th Street, NW Suite 1212
Washington, DC 20005
aneeman@autisticadvocacy.org
(732) 763-5530

Scott Michael Robertson
The Autistic Self Advocacy Network,
Vice President
srobertson@autisticadvocacy.org
(973) 464-6315

References:

Barry-Walsh, J. B., & Mullen, P. E. (2004). Forensic Aspects of Asperger’s
Syndrome. The Journal of Forensic Psychiatry & Psychology, 15(1),
96-107.Murrie, D. C.,

Warren, J. I., Kristiannsson, M., & Dietz, P. E. (2002). Asperger’s Syndrome
in Forensic Settings. International Journal of Forensic Mental Health, 1(1),
59-70.

Plimley, L. A. (2007). A Review Of Quality Of Life Issues And People With
Autism Spectrum Disorders. British Journal of Learning Disabilities, 35(4),
205-213.

Renty, J. O., & Roeyers, H. (2006). Quality of life in high-functioning
adults with autism spectrum disorder: The predictive Value of Disability And
Support Characteristics. Autism, 10(5), 511-524.

Sofronoff, K., Attwood, T., & Hinton, S. (2005) A randomised controlled
trial of a CBT intervention for anxiety in children with Asperger syndrome,
Journal of Child Psychology and Psychiatry 46 (11) , 1152–1160

Stewart, M. E., Barnard, L., Pearson, J., Hasan R., & O’Brien, G. (2006)
Presentation of depression in autism and Asperger syndrome: A review,
Autism, 10 (1), 103-116



First Published Tuesday, 27th May, 2008.

Locked Out

By CARA FITZPATRICK

Palm Beach Post Staff Writer

Tuesday, May 27, 2008


PORT ST. LUCIE ­ A teacher, who last week asked her kindergarten students to
vote on whether a fellow classmate could stay in the class, has been removed
from contact with students while district officials conduct an investigation
into her behavior.


Wendy Portillo, a teacher at Morningside Elementary for nine years, brought
a 5-year-old boy to the front of the classroom last Wednesday, instructed
her students to tell him why they didn’t like him, and then asked them to
vote on whether they wanted him to stay in the room, according to a police
report.


The students voted 14-2 to have him leave.


Portillo has been reassigned to the St. Lucie County School District offices
during the investigation.



Source:  http://www.palmbeachpost.com/treasurecoast/content/tcoast/epaper/2008/05/27/0527slteacher.html



First Published Sunday, 25th May, 2008.

Alex

“St. Lucie teacher has students vote on whether 5-year-old can stay in class”
http://www.tcpalm.com/news/2008/may/23/st-lucie-teacher-has-class-vote-whether-5-year-old/



Our children’s teachers are meant to be role models.  They are meant to guide, to teach, to instill values, consideration and care for fellow classmates.  To read your story Alex, was so very difficult, having been there with my own two sons once not so very long ago.  I sincerely hope that you continue on in your life with the appropriate supports and guidance firmly in place, with role models worthy of the title “teacher”.   I expect you to have an enormously bright future – those eyes speak volumes…  Perhaps you are are not aware of just how many people stand behind you and your family on this matter, but behind you, we are, wholeheartedly.


I sincerely hope that justice is done, that for the sake of all children, this teacher is not permitted to work in such an influential position with those so very vulnerable, again.   In respect of the damage already done, I would hope that schools take heed, lessons be learned, guidelines clarified and tightened, quality staff and high standards maintained to the highest order as should have been the case for Alex.


Julie


“The secret of education lies in respecting the student”  Ralph Waldo Emerson


Hello,

As some of you may already be aware from news
articles<http://www.tcpalm. com/news/ 2008/may/ 23/st-lucie- teacher-has- class-vote- whether-5- year-old/>and
blog <http://www.autismvo x.com/5-year- old-boy-voted- out-of-his- class/>
posts<http://aspergersqua re8.blogspot. com/2008/ 05/not-special- support-alex- barton.html>on
the topic, last week a Morningside Elementary Kindergarten teacher had
students “vote out” of the class a 5-year old autistic student named Alex
Barton. According to the news article, the teacher had each of Alex’s
classmates, including his sole friend in the class, state publicly what they
disliked about him and then announced that they would take a vote to remove
him from the class. Alex has not been back to school since and has suffered
significant emotional trauma as a result of this incident. Regardless of who
you are or what your connection to the autistic and autism communities might
be, I think we can all agree that this is unacceptable.

We need to band together to prevent future such abuses from occurring, to
ensure that this teacher is properly disciplined and to encourage this
school to adopt both a strong bullying prevention policy and training on
respect for all forms of diversity aimed at both teachers and students. As
such, we’ve provided contact information below for you to write to
communicate your outrage. Please be polite yet firm in your comments,
pointing out the unacceptability of such actions when aimed at any student,
as well as the need for this school to adopt policies to prevent this from
happening in the future. This is an opportunity to drive home the message
that we will not stand by while one of our own is abused. We ask that you
please cc: info@autisticadvoca cy.org in your e-mails to the school district
so we can keep track of the strength and sources of this response. Remember:
abusive messages hurt our cause – please be respectful in your comments.

Contact info:

*Morningside Elementary School Principal:*
Mrs. Marcia Cully
cullym@stlucie. k12.fl.us
(772) 337-6730

*St. Lucie County Schools Superintendent: *
Michael J. Lannon
4204 Okeechobee Road
Ft. Pierce 34947-5414
Phone: 772/429-3925
FAX: 772/429-3916
e-mail: lannonm@stlucie. k12.fl.us

*St. Lucie County School Board Chair:*
Carol Hilson
772-519-0397
HilsonC@stlucie. k12.fl.us

*Vice Chair:*
Judith Miller
772-528-4545
MillerJ@stlucie. k12.fl.us

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
http://www.autistic advocacy. org
732.763.553

Responses from Various Members of the Community:



http://ballastexist enz.autistics. org/?p=538

http://joyofautism. blogspot. com/2008/ 05/autistic- kindergarten- student-gets. html

http://maternal- instincts. blogspot. com/2008/ 05/alex-barton- deserves- better.html

http://whittererona utism.com/ 2008/05/alex- barton/

http://leftbrainrig htbrain.co. uk/?p=834

http://actionforaut ism.co.uk/ 2008/05/24/ alex-is-cool/


http://drivemomcrazy.com/?p=379

http://autisticbfh. blogspot. com/2008/ 05/st-lucie- county-schools- vote-wendy. html

http://joeyandymom. blogspot. com/2008/ 05/alex-barton. html

http://www.alongthe spectrum. com/2008/ 05/my-two- new-heroes/

http://rettdevil. blogspot. com/2008/ 05/yes-alex- you-are-special- good-kind. html

http://stopthinkaut ism.blogspot. com/2008/ 05/im-not- special.html

http://bigwhitehat. com/?p=420


A further response, from Michelle A. Sarabia M.A.


Dear ladies and gentlemen:

As I am sure you are aware by now, the story regarding Alex Barton is starting to get attention across the country. I became aware of Wendy Portillo’s actions through postings made on certain web groups I belong to.

Regardless of the child’s behaviors or personality, causing any child to experience such rejection and hostility is terribly wrong and abusive. Even if the child was at that point undiagnosed, the RTI group (whatever you call your child study teams) should have been more than aware of Aspergers-like behavior in him, and have helped this teacher with appropriate interventions until the formal medical diagnosis could be received. We have a 3rd grader in my school who is so clearly PDD-NOS or HF classic Autistic that it only takes about 10 seconds around him to know it, whose parent as of now refuses to diagnose him. We have him in SPED under DD and SLI, and while we wait for a real diagnosis through our state educational- diagonsis team, we give him and the regular ed teachers the autism-intervention supports they need to succeed in supporting his academic and social learning. How can this not be happening in your district?

I am a special education teacher holding a Master’s degree and 12 years of classroom experience, as well as a parent of two children, one falling within “norm” expectations, and one with a variety of labels including Aspergers. I am also “mildly” Aspergers/NVLD myself.

Yes, it causes problems with mistakes in communication, frustration, etc. Properly managed, and with educated friends, family, and colleagues, the strengths that come with autism spectrum can be celebrated.. . loyalty, honesty, preseverance in knowledge and in action, analytical skills, ability to create detailed structure, etc. These things should be looked for in all Spectrum people.

By every code of ethics I have ever seen for the teaching profession, Ms. Portillo’s actions are inexcusable. That teacher should be dismissed and her license revoked, and the district should bring in counseling services for both the AS child and his classmates; one to help the AS child with the anxiety resulting from such severe bullying from an authority figure, and the others to counteract the intolerance instruction they have received from their so-called teacher who was so deeply unable to manage having a child with differences in her classroom.

There should be supports available in your district to teachers who are at their wit’s end from a child’s behavior, whether because that behavior does not respond to effective routine classroom management, the teacher’s inexperience, and/or from teacher burn-out. Especially in this young man’s case, there are tons of resources and trainings now nationally for those dealing with autism-spectrum students. What she did was totally unprofessional; including her inability to tap into your district’s resources (if you have them), as well as online, journal, and other resources to support her when she reached the limits of her own skills.

Also, if that teacher is new to teaching, the college that “educated” her should be audited for course content, especially their classroom management, introduction to special education, and multicultural classes.

As educators, our jobs include preparing ALL students to the greatest extent possible for the adult community and workforce, NOT teaching kids in the “norm” to despise and reject those who are different, and teaching those outside the “norm” that they are worthless and impossible.

That little guy’s behaviors can be remediated using structure, routine, and direct guidance, as all of you I’m sure (or at least fervently hope) are very aware. There are many research-based tools now available that educators did not have even 20 years ago… and which make what happened a terrible blotch on our profession.

Please act to ensure that your teachers and community are properly educated and brought into the 21st century.

Michelle A. Sarabia, M.A.
Elementary Resource and Enrichment SPED teacher
Parent of a child with AS, OCD, ADD, SLD



1. Karen left…

Monday, 26 May 2008 2:52 am

Oh please he has NOT been diagnosed yet and he has a behavior problem. He was sent to the office once already that day – he was being voted back to the principals office because of his behavior. I think everyone should step back and feel sorry for the rest of the class that has lost countless hours of quality instruction because of this unruly child!

2. Julie left…

Monday, 26 May 2008 2:07 pm

Hi Karen,

If countless hours of quality instruction were lost because of an unruly child, and I were responsible for teaching/guiding that class, I would feel I’d let this child and their peers down. It would be an opportunity lost. I seek to understand behaviour and nothing brings greater joy than watching positive outcomes for all, when competent role models/educators are at the helm and everyone involved is appropriately supported.

Diagnosis is irrelevant. I have worked for the past 20 years with children presenting challenging behaviours, many minus labels/diagnoses, in both schools and childcare settings where I and others have promoted inclusion, rather than exclusion. I myself presented with disruptive behaviour(non-aggressive, but nonetheless terribly disruptive) at 5 years of age, as did my 2 sons. Both Alex and his peers were done a grave disservice by an incompetent teacher. A competent teacher, who has the best interests of ALL her students in mind, will view challenges that arise as opportunities to assist those struggling, behaviourally or otherwise. A competent teacher will encourage and assist those under her instruction, toward tolerance and greater understanding for peers who may be struggling.

Harmony in the classroom can be restored if staff are adequately trained and supported, disruptive behaviour appropriately managed, and a positive and respectful attitude toward all children maintained.

Wendy Portillo’s actions were abusive and bullying toward Alex, beyond measure. Her methods are in no way representative of quality staff who seek to provide a supportive and positive learning environment for the benefit of all.

3. A local grandparent left…

Tuesday, 27 May 2008 4:31 pm

Ms Portillo should be spared the indignity of being a role model for internet harassment. I’ve enough experience in the classroom to address a complex issue that troubles many instructors, particularly those teaching in the pre-school classroom environments. These instructors are rarely qualified to be surrogate parents to the 100s of children they represent, but they are very skilled classroom leaders and they provide a service well worth the tuition each child brings to the system. The pseudo science and modern day divinery that has created “disabilties of learning” as discrete medical entities offers only more elaborate plans of care for struggling kids, or encourages drug use at an age most assured to damage the brain’s plasticity and involve kids in their parents’ struggle to motivate them toward living an exceptional life. Regarding instructors that are affected by classroom disruption, we can plainly see from petitions such as this, the supporters of any means to reduce school discipline to the status of barbarism feel that teachers (and I suppose by extension, that jobs, friends, and whole host of netizens) are easily obtained — not made — and can be shucked aside whenever one wishes to make a point. Shame on the Bartons, for not coming to the aid of the school at an early stage, I’ll stand corrected if it is made public that the school invited the boy’s family to counseling as these many disruptions came to light over what I perceive to be a lengthy time in Ms Portillo’s classroom or in pre-pre-school.

4. Denise left…

Thursday, 29 May 2008 2:55 am :: http://www.myspace.com/moto110

As a Mother of a child that grew up with the highest level of ADHD. I know how Alex’s mother feels and just recently blogged about it on my Myspace page. He struggled all through life in school and the constant answer was to send him to the office. Instead of trying to educate the teachers with the answers to people with disabilities. I am going to include my blog at the end of this comment. It may not help at all. These kids dont want to be bad trust me. Do you think people with Terrets (spelling??) want to burst out and curse in the middle of church…. The difference is the same.

KAREN… I give you my sincere prayers. Alex is the one that is suffering.

My Blog: Yesterday was a huge day for my Son Michael. He finally graduated. This was not a normal thing like most children in this world. Alot of people just dont understand what this child or I guess I should say Man has been through.

First of all he has the highest level of ADHD that you can have. Growing up for Michael was not a easy task by no means either. I was 17 when he was born and it was not a easy road for a long time. He dealt with me and his father getting a divorce. He dealt with watching his father battle a drug problem. He lost a Step-Dad that truly cared for him… He has always looked for that solid Father figure that was going to be there for him when Michael needed them not when they needed Michael. His Poppy is the only sure man that Michael has had since birth.

School life for Michael was always tough. Fighting ADHD on a daily basis was always his toughest task. The schools even had special meetings that if he couldnt be still that he had permission to go outside and run around the school to get rid of the energy busting out of him. He had very little control over ADHD. He would say out loud “Self please chill out”. He hated taking medicine cause of the zombie side effects. So we just dealt with it. The teachers were always at wits end with Michael. They just didnt get it. I would go talk to them and their exact words is “I want to hug him and at the same time I want to pinch his head off”. Michael loves everyone, and everyone loves Michael…… His grades wernt the greatest and I was just happy that he even had a grade.

His Junior year started and here was our first meeting of how we are going to deal with Michaels ADHD this year. They made him a stand up desk so he could wiggle around freely in the back of the room. And before the meeting was over Mrs. Gilpatrick stood up and looked Michael straight in the face and said “Why dont you just quit? Your almost 18 now.. Go get your G.E.D.” It took everything that I had in my power not to just get up and go off. I bursted out in tears and did throw a little bit of a fit. His head just dropped and he had that look of failure all over his face. He told her that he wasnt proud of the ADHD but he wanted to stay in school. I politely told her in a stern voice that she needed to keep her opinion to her self. All the way to work that day I cried my eyes out for fear that he would quit school. I told him over and over we made it this far lets keep going.

After that teacher spoke those words to Michael he always felt as if he wasnt wanted at school looking for the perfect reason to give up. He is constantly looking for the place where he fits in. He is constantly on the go. If yu want to punish Michael to the worst level just make him sit in a chair for a hour. He cant do it, the energy is bursting out of him.

Junior year was finally over and he was finally going to be a Senior. I was so excited that he was finally going to make it. He turned 18. We went and bought him a new jeep. He was so high on life. He now had a new ride that the top come off and he could just go and go. 23 days later he was hit head on by a man that was drunk, had no drivers licence, no insurance, no tags and it wasnt even his car. It hurt Michael so badly that he had to be flown to Earlanger in Chattanooga. His jeep was totalled. His face was so bad that his nose was within a 1/4 inch of being ripped off and nearly lost his eye. His chin was cut so bad that his tongue was coming out of it. He was so determined to make me calm down that he made me kiss him and he tried to assure me that he was ok. I could have lost him on that day so easily.

Senior year was finally here and he was only going to school two hours a day and then he was on the Co-Op program where you got a credit for working. So he was out of the teachers hair and they were basically rid of him. They seemed pleased. So I get a phone call from Michael in December that they are going to MAKE him graduate early. I would have never had time to get there for that. It was going to happen within the hour. NO NOTICE NO NOTHING! I called and demanded that he get to walk the line in May cause it was them that wanted the early graduation not me or Michael for that matter.

May finally came and last night I got to see My SON walk that line. All day long I teared up so many times. I honestly thought that he would give up before this day ever came. What people think of Michael means so much to him. He is definatly the light of the party. He is so much fun to be around. To see him shake that mans hand and take that diploma with his other all I could do is yell “You finally did it Michael” I was never so proud in all my entire life. I was so high in the clouds that I had to look down to see everyone. I cried so hard that I couldnt even stop. now is the kicker…….

Michael was next to the last in the line. I didnt care where he was as long as he was in that line. The last boy to graduate was wheelchair bound and he has severe cerebal palsy when he got that diploma he was so happy that he started shaking uncontrollably and everyone stood up and clapped and watching the tear roll down that boys face cause he was so happy cause he finally made it too. No matter whats wrong with you, if your in a wheelchair or if you are fighting ADHD everyone deserves the opportunity to be treated equal. I am so proud of Michael and the boy in the wheelchair, they both beat the odds. They both found the final result. They may not have had the highest GPA but they left that building that night with their heads held higher than anyone there cause they struggled more than anyone for that piece of paper.

  • I just wanted to get this off my chest. I have thought about it all day and I am a proud mother of a graduate of Livingston Academy 2008 class.

I can be reached at: bdenise710@yahoo.com or http://www.myspace.com/moto110

5. Julie left…

Thursday, 29 May 2008 1:06 pm

To ‘a grandparent’: You appear to be justifying the unethical, immoral behaviour of a fellow teacher. You also appear to take issue with the provision of those ‘elaborate plans of care for struggling kids’. Accommodations in the classroom for those with learning differences enables children to access the curriculum and assists them and staff to manage more effectively. We are talking about neurological difference here. I’m sure you’ll agree that every child, regardless of ‘difference’, is entitled to an education. Times have thankfully changed in this respect. Countless children/adults with ‘difference’ have struggled, my own children included, suffered discrimination not just at the hands of their peers, but by their teachers throughout time, having been expected to suffer in silence. Many of the accommodations, carefully considered strategies and approaches(eg TEACHH) employed today are recognized as invaluable. The issue of medication is one that parents tend to agonize over and research to the hilt. It is certainly not a decision taken lightly. In some cases it has proven beneficial, in others vital, and I respect the right of parents to make this decision. I personally chose not to medicate my children(all three are on the autism spectrum, as am I) and do share your concerns in some regards. I have sadly read news reports of teachers encouraging parents to medicate their children as they have struggled to deal with disruption in the classroom. As for your comment “Shame on the Bartons for not coming to the aid of the school at an early stage”, now ‘shame’ is a word I would reserve soley for Ms Portillo in this particular case. There is no justification for her actions. None whatsoever.

Julie



aspie twins

TWINS ON THE AUTISM SPECTRUM


First Published Saturday, 24th May, 2008.

The issue of twins is one that is close to my heart. For those who either are a twin or have twins among family members and friends, for those who teach or work with them, or for those simply with an interest in this area, I hope the following articles, sites, blogs and information are both enlightening and useful.


The following is an excerpt from “Autism and the Development of Mind” by R. Peter Hobson…

“Susan Foltstein and Michael Rutter(1977) conducted a groundbreaking study of 21 twin pairs in which at least one co-twin had a diagnosis of autism. None of the ten dizygotic(non-identical) pairs had two autistic twins, but in four out of the eleven monozygotic(identical) pairs, both twins were autistic. Moreover, there was evidence for a significant degree of cognitive disability in the large majority of those who were monozygotic twins to autistic individuals, but in only one of ten who were dizygotic twins. Or again, the prevalence of autism in the siblings of autistic individuals is low(about 3% of sibs have the diagnosis), but this is over fifty times the prevalence observed in the neurotypical population – and once again, cognitive disabilities are more common even among siblings who do not have autism per se.”

two sets in one family

For further detail and analysis:


TWIN AND FAMILY STUDIES


In the first systematic and detailed autism twin study, conducted by Dr. Susan Folstein and Dr. Michael Rutter, the rate of concordance was compared between identical twins and fraternal twins. Concordance in this instance refers to the likelihood that if one twin has a diagnosis of autism, the second twin will also have a diagnosis of autism. Because identical twins share 100% of their genes, whereas fraternal twins share on average 50% of their genes, a higher concordance rate among identical twins is evidence for genetic influence. Dr. Folstein and Dr. Rutter found that the concordance rate for autism was significantly higher among the identical twins they studied, and subsequent twin studies have confirmed this finding. In general, the concordance rate for fraternal twins is similar to the 5-8% recurrence rate observed among non-twin siblings. Concordance rates among identical twins are estimated to be approximately 60%, but have been reported to be as high as 95%. The fact that identical twins are not always concordant for autism indicates that there may be non-genetic factors that are important as well, but the high concordance rates are strong evidence for significant genetic influence. The results of family studies, which have shown increased rates of autism among siblings and first degree relatives, are also an indication of the role that inherited factors play in the development of autism.

twin brothers in the wheatfields

GENETIC SYNDROMES AND AUTISM


Evidence for an underlying genetic basis also comes from the many instances in which individuals with autism have been diagnosed with known genetic syndromes. It is estimated that 10-15% of individuals with autism have an underlying medical or genetic diagnosis. There is a known association between autism and fragile X syndrome, which is an X-linked genetic condition that more frequently affects males but may also affect females. Autism is also sometimes seen in association with tuberous sclerosis, a dominantly inherited condition that may lead to seizures, mental retardation, and unusual skin findings. There have been many case reports of individuals with autism who have chromosome abnormalities, most often involving chromosome 15. There have also been case reports of autism in association with neurofibromatosis type 1 (NF1), a dominantly inherited neurological condition, as well as case reports of autism in association with other genetic syndromes. Finally, researchers at Duke University recently reported that some individuals with autism have mutations in the MECP2 gene, which is the gene related to Rett syndrome. When evaluating the possible causes of autism in any individual child, a genetics evaluation should be considered and the above mentioned conditions ruled out. Both fragile X syndrome and MECP2 gene mutations can be tested for through DNA analysis, and the chromosome abnormalities frequently found in individuals with autism can be tested for through a high resolution karyotype and fluorescent in situ hybridization (FISH) for regions on chromosome 15. Tuberous sclerosis and NF1 are typically diagnosed through a physical exam, which includes a woods lamp exam of the skin.


The following outstanding articles speak volumes in regard the relationship between autistic twins and those who raise and care for them.

Courtesy of “Looking Up”, the monthly International Autism Newsletter


(Volume 4 Number 2 2006)


The Taiwanese man who adopted autistic twins”


TAIPEI, Taiwan: Chen Kui-chung, a resident of Taichung City, has four children. His second daughter is confined to bed due to being paralysed.


Chen also adopted two other children – Chen-an and Chen Chun-chuan – who are autistic. The two children are male twins. Over the past 17 years, Chen has cared for these children as if they were his own. He cares so much for the disabled children that even the children who are of his own blood are a bit jealous.


One day recently, the twin boys told their father:


“Thanks, Dad, for all the hard work you’ve done for us. Dad, take a seat and rest a bit.” Chen said that he was so overjoyed when he heard this. “This feeling is something that money cannot buy,” he said.


Chen is 52 years old. He works at the Chung Shan Institute of Science and Technology. He said that it was purely a coincidence that he began to raise the pair of autistic brothers.


He said that 17 years ago, a former colleague asked him whether he would be interested in raising a pair of twins who were in urgent need of adoption. It occurred to Chen that one of his distant relatives did not have any children. After he put together the adoption papers and the issue was taken care of, his relative suddenly passed away.


“It was actually the hospital that notified me that the twin brothers were still in the hospital. The natural parents of the two boys could not be found. I myself had no idea even which of the boys was the first-born. In any event, I began taking care of the adoption process and took the two boys home, figuring that I would decide how to handle things later.”


At that time, his youngest son at home was seven years old. Meanwhile, his daughter, whose brain had been deprived of oxygen during surgery when she was just three years old, was totally paralysed and was unable to speak. The only way he could communicate with her was by guessing the expression on her face. During the day, he hired someone to take care of her. When he returned home from work at night, he took over.


Initially, Chen hoped that he could find someone to adopt the twin boys. However, anyone he could find was only interested in adopting one of them. “It just did not seem right to separate the brothers. I figured that it was fate that had brought me to them and I decided to take both of them in,” he said.


When the twins were young, they were always imitating the way that others spoke. They were also extremely active, always crawling around here and there. Nonetheless, they were never able to learn how to go to the bathroom properly. Chen Kui-chung originally thought that they would show improvement after they began at elementary school.


It was only afterwards that he discovered that the twins were autistic. They copied the speech of others, just like parrots. However, what they said was absolutely meaningless. Chen ultimately arranged for them to begin attending a special school for autistic children.


Chen said that many of his relatives already thought he was burdened enough with his paralysed daughter, in addition to having to deal with two hyperactive sons. Relatives expressed serious concerns that Chen would not be able to handle the task of taking care of the three. They urged him to send the twin brothers away to a home where they could live. Chen, however, would not even entertain the idea and was determined to raise the boys himself.


Today, Chen Chun-an and Chen Chun-chuan are third-year high school students. Their mental capacity, however, is equivalent to that of a child of only four years old.


Even though the two are twins, they have entirely different personalities. Chen Chun-an is very quiet, while Chen Chun-Chuan is full of energy and always quite active. The two of them are able to make out very simple Chinese characters.


Lin Mei-yin, a teacher at Taichung Special School, said that the two boys were able to eat on their own,take showers on their own and go to the bathroom by themselves. In addition, they are able to perform simple household chores. At school, the two also help to push the wheelchairs of students who have cerebral palsy. They push the wheelchairs on and off buses and take the students around to their classes. Sometimes, they make the wrong move, and someone needs to stand beside them to monitor them.


Lin said that Chen Kui-chung had visited the school many times to take part in parents’ day activities. He has seen for himself that the children sometimes become angry and have problems adapting to the environment.


The only way to face the situation, however, is with patience. Lin said that Chen was very giving of himself and asked nothing in return, which was quite admirable.


Chen said that he worried about what the future held for the twins. He wonders who will take care of the boys when he gets older. Chen Chun-an and Chen Chun-Chuan are not able to understand the concerns that rest in their father’s heart.


Each day, they say to their father: “Dad, have a good day at work. We are going to school. Give us a kiss.”


Just those few sentences are enough to make Chen feel that his efforts have been worthwhile.


Chen said that he had decided to face the hand dealt to him in life. He said that people had asked him in the past about what use there was in raising two children who did not appear to understand anything. Chen replied: “Raising two sons who care for you is worth everything.”

Hold my hand

HOLD MY HAND


By Shelley Segal


A story about the love between siblings, and especially between twins.


“The Lord taketh away, and the Lord giveth” has been my mantra for some time now. When I lost the “normal” aspect of my son, Josh, to autism several years ago I was fairly certain my family’s life was over. It had taken years of fertility drugs and prayers, ardent begging and painful surgical procedures to finally get pregnant. And, I had scored with twins. Oh, the triumph of an instant family! But when the twins became toddlers the effort and euphoria of motherhood was dashed in a single diagnosis. I remember sobbing alone in a darkened room after slowly digesting the impact this would have on our future. I mourned the loss not only of my beautiful son, but of his typical sister, Jordan. In my grief-stricken, convulsive state I was dead-sure our lives were finished. How could I possibly find any joy in life or be the exuberant mother I wanted to be for my daughter while suffering this agonizing loss of her brother? I was so sure of this death knoll, so petrified at the idea both kids would grow up as miserable and morose as I was at that moment that the fear rendered me paralyzed for months.


And then a funny thing happened. We survived. Life went on and not all of it was dark and dismal as I had predicted. Our family is still intact. My husband and I are still married, the new city we’re living in is fine, the kids are growing up – they’re eight-years-old now – but more importantly, they’re flourishing. Now, I must stress (“stress” being the operative word) it hasn’t been easy. I’d be lying if I painted a care bear picture of our bumpy lifestyle. Josh is still severe. (On a good day I prefer the word, “idiosyncratic.”) He’s still working to conquer his multitude of deficits in order to read and write. He’s still non-verbal, hyperactive and sensory impaired, but we’re patiently hacking away at it. And on a good day, when the cup is half full, I marvel at how far he’s come. I don’t measure his success by an academic metric yet; instead, I gratefully blush at the compliments from the pool staff and grocery store clerks about the progress he’s made this year. And I brag that he was invited to two birthday parties in one week.


And what about his sister, Jordan? I never would have guessed in my traumatized state five years ago that my daughter would grow up to be such an exceptional little girl. But the Lord does giveth. I might not be raising the “typical” son I fantasized about, but Josh’s “special” nature and spirit supersede his condition. And his condition has undoubtedly shaped his sister’s mature spirit and character. How often have we heard this? How often have we heard about the caring, loving siblings of a special needs child who advocates for, defends, aids, and adores their brother or sister unconditionally? How blessed we are as parents to raise kids like these. Not that Jordan doesn’t have her moments. She mutters about constantly travelling to another room to watch television because she can’t stomach Josh’s taste in programming. (Stimming over Sci-Fi is much better than stimming over Barney, though.) But I haven’t really heard a substantial complaint out of her since she was five. Not even about the uneven attention she receives. She’s resilient, and doesn’t ask for my protection or wisdom unless she feels desperate.


As a parent I lament Josh’s condition far more than she does. The systemic nature of autism brutalized our family in the early days. I regret Jordan was exposed to more ugliness than I could ever have imagined. She remains steadfastly loyal to Josh even when he hurts her, and she manages adversity like so many of these siblings – like a grown-up. I’ll never forget how she handled the sight of her brother after his brain surgery. The kids were five at the time and we had to be separated from Jordan for a month. When we reunited at the airport Josh was in a wheelchair. He wouldn’t keep his cloth cap on and his swollen head looked like a bloody baseball. He’d also lost weight. When Jordan first saw him she was shocked, then pained, then incredibly empathic. She wasn’t scared of him, just heartbroken. “Joshie, let me hold your hand,” she said as she was crying. “Let me make you feel better.” Sometimes it seems that this has been Jordan’s job for years: Making us all feel better.


After Josh’s surgery I never separated the two again. I learned that my daughter wasn’t frightened of anything medical or anything that was Josh. I remember her shrieks from a locked room when we had to drain spinal fluid from his head, post op. I had to put restraints on him and pin him to the floor whole my physician husband inserted a large needle to extract the fluid. Josh’s nightmarish screams were expected and familiar, but still sickening. How stupid of me in hindsight to “protect” Jordan from the situation. She was desperate to handle it. She kept wailing from the other room that she wanted to help us; she wanted to be with her brother.


Jordan’s never been put off by his screams, only the agony creating them. She has assisted me in blood draws, IVIG procedures, and the administration of meds. She signs with Josh, disciplines him, and creates computer programs aimed at his academic success. Presently, she’s only too eager to participate. I wonder on occasion if she’s becoming a mini-me. I heard her cooing to Josh one night as I stood outside his bedroom door ready to tuck him in. I had to smile as I heard the familiar words I’ve uttered a million bedtimes before. Jordan was stroking his head softly and saying, “Goodnight sweet boy. I love you more than you will ever know.”


I also wonder about the “twins connection.” I used to think a soul mate was someone you were lucky enough to marry or appreciate as an adult. But when I look at my kids’ relationship I see that spiritual connections can develop at even a young age. Jordan once told me when she was six that she’d known Josh longer than me because she shared my womb with him. Well, you can’t argue with that. Do they have some special, transcendent tie that only they share? Three years ago I would have said an emphatic no. But as Josh creeps further into out world and his relationship with Jordan ignites in new ways, (after years of treating her like a lamp-post) I’ve been observing a loving, yet eerily focused look between them that raises the hair on my arms. I’m not just talking about good eye contact. I’m talking about the way they see into each other even in frantic, frenetic moments.


Are they old souls? Jordan has been described this way by strangers and friends alike since she was three. I understand the expression better now. When she was six she accompanied me to Texas to visit my dying father. In an almost ethereal, unselfconscious manner she sang, played the piano, and danced for him, radiating joy. Unlike me, she was completely unintimidated by death. When he passed away and I was reeling with grief at the funeral I remember Jordan signing “I Love You” to the casket as it was being lowered to the ground. She told me she did that for Josh. Later, she comforted my mother and me by telling us my father was not in pain now, that he was happy to be an angel on her shoulder so he could look after her and Josh. And she said it with absolute certainty.


On occasion she knocks the breath out of me with her insight and wisdom. I remember the first time she ever saw a wishing well. It was after Josh’s diagnosis and the kids had just turned three. Jordan knew nothing about autism; she just knew her brother was different. I gave her two pennies. Her first wish was, “God, please teach Joshie how to talk again.” Before I could stop her she thrust her second penny in with, “God, please make Joshie want to play wth me.” “Jordan,” I said, “honey, you need to make a wish for yourself.” She replied, “But Mommy, I’ve got to make the wishes for my brother because he can’t do it for himself.” With every penny I gave her she threw in a wish for Josh. Now I realize there are millions of selfless, loving, ascetic children in the world who adore their siblings. But what struck me was the total lack of hesitation in Jordan’s gestures. Even today, she continues to put Josh first. Her love and devotion seem automatic. She seems to intuitively accept – and even embrace – that she’s her brother’s keeper.


It’s not a role I’ve thrust upon her. It’s been suggested to me it’s a role she was born with: Jordan was sent to us to help Josh. I’m ambivalent about this suggestion. On a bad day it makes her sound like part of a bonus plan. You know, God feels badly that my only child will have significant challenges so he throws Jordan in as a consolation prize. Jordan has her own magnificent life to lead, she cannot exist solely for her brother. And yet, I’m astounded at how proud she is to accept the responsibility. Even a year ago when I argued with her that Josh’s fate was far from sealed, that my fondest desire was that he become independent of all of us one day, she replied, “Mama, I want to be with Josh. Whoever I marry better be nice to him, because I want him to live with us.”


Is she just saying something cute, something born out of a childlike innocence? She’s still very much a kid. Maybe they’re both just kids and I’m rationalizing their burgeoning spirituality as a coping mechanism. After all, we have our dark days and the future’s unpredictable. But I simply cannot ignore extraordinary events. I cannot ignore the way the children have redefined happiness for me by teaching me about true love and spirituality.


Though autism stripped my son of many abilities, he was left with a keen sensitivity and soulfulness. He doesn’t talk, but he’s affectionate and communicative, like his sister. The kids’ “twins-speak” is very real, just non-verbal. How prophetic were four-year-old Jordan’s words to her brother when he was receiving a nasty blood draw from the foot, “Joshie, I know it hurts, I know it hurts, please don’t cry. Just hold my hand Joshie, just squeeze it when it’s bad. I love you, Josh, I will love you and take care of you forever.”


The purity of Josh and Jordan’s relationship helps me keep life in perspective. The Lord gave me something, indeed.

twin brothers


News Articles & Various Links


“Twins UK – Twins Tips – Advice and Info on parenting and coping with twins, triplets, quads or quints. From pregnancy to adulthood.


Raising Special Needs Twins and Multiples:
http://www.twinsuk.co.uk/twinstips.php?action=view&id=9933921


“Twins and ASD”:
http://www.bellaonline.com/articles/art22966.asp


“Heritability of Autism”:
http://en.wikipedia.org/wiki/Heritability_of_autism


“Twin Studies”:
http://en.wikipedia.org/wiki/Heritability_of_autism#Twin_studies


“Twinning Risk”:
http://en.wikipedia.org/wiki/Heritability_of_autism#Twinning_risk


BLOG “Autism Twins”:
http://autismtwins.blogspot.com/index.html

twin boys

“Twinsonline – Information, Advice, Moral Support & Forums for Adult Twins and Twin Parents”:
http://www.twinsonline.org.uk/


“Twin Research”:
http://www.twinsonline.org.uk/html/twin_research.html


“Mom’s diary on twins reveals clues to autism”:
http://www.canada.com/national/nationalpost/news/bodyandhealth/story.html?id=3ed3de74-5e27-462e-a13f-11e6f1d68535&page=1


“Asobid Twins Are Autistic”:
http://www.lancashireeveningtelegraph.co.uk/display.var.1650578.0.asbobid_twins_are_autistic.php


“TWINS Magazine – List of Resources/Websites:
http://www.twinsmagazine.com/resources2.html

twin girls




Niagara Falls

HEADLINES


“Child who died in bathtub identified as Pleasant Prairie girl, 5”:
http://www.htrnews.com/apps/pbcs.dll/article?AID=/20080519/MAN0101/80519037/1984


“Emergency measles steps ordered”:
http://news.bbc.co.uk/1/hi/health/7408278.stm


“Double MMR jabs to fight measles”:
http://www.thisislondon.co.uk/standard/article-23485674-details/Double+MMR+jabs+to+fight+measles/article.do


“Skipping vaccines: Parents opting out”:
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=18674


“Autistic boy disappears for hours after bus stop blunder”:
http://www.firstcoastnews.com/news/strange/news-article.aspx?storyid=109184


“Second wave of landmark autism support measures passes assembly”:
http://politickernj.com/teel/19864/second-wave-landmark-autism-support-measures-passes-assembly


“Church bars severely autistic boy from mass”:
http://www.startribune.com/local/19033344.html?location_refer=Most%20Viewed:Local%20+%20Metro


“After warning, family of autistic teen attends different church”:
http://www.startribune.com/lifestyle/faith/19059069.html?location_refer=Error


“Call for understanding in wake of church autism ban”:
http://www.christiantoday.com/article/call.for.understanding.in.wake.of.church.autism.ban/18959.htm


“UK autism model recommended in Tasmania”:
http://www.abc.net.au/news/stories/2008/05/19/2249223.htm


“U.S. Court: currency discriminates against the blind”:
http://www.reuters.com/article/domesticNews/idUSN2030825720080520?feedType=RSS&feedName=domesticNews


“Offer a holistic way to manage autism”:
http://thestar.com.my/news/story.asp?file=/2008/5/18/focus/21265174&sec=focus


NAS Scotland “New autistic branch to open”:
http://icdumfries.icnetwork.co.uk/gallowaynews/news/tm_headline=new-autism-branch-to-open&method=full&objectid=20943003&siteid=77296-name_page.html

RESEARCH


“Autism detected at 9 months of age using research tool”:
http://www.medicalnewstoday.com/articles/108204.php


“Scientists identify brain’s ‘trust machinery’:
http://www.newkerala.com/one.php?action=fullnews&id=63525


“Genetic links to impaired social behavior in autism”:
http://www.innovations-report.com/html/reports/life_sciences/report-109936.html


“Scientists use music to explore autistic brain’s emotion processing”:
http://www.newkerala.com/one.php?action=fullnews&id=60136


“Science, not lawsuits, will find autism’s cause”:
http://www.mcall.com/news/opinion/anotherview/all-bottom_col-a.6411585may19,0,6080077.story


“Molecular scaffold that guides connection bewteen brain cells unravelled”:
http://www.andhranews.net/Technology/2008/May/21-Molecular-scaffold-45877.asp


“Virtual world could aid diagnosis of schizophrenia”:
http://www.newscientist.com/channel/being-human/brain/mg19726405.800-virtual-world-could-aid-diagnosis-of-schizophrenia.html

EDUCATION

“Class of ’08: Autism doesn’t slow down Barron Collier High School senior”:
http://www.naplesnews.com/news/2008/may/21/class-08-autism-doesnt-slow-down-barron-collier-hi/


“Oradell rejects preschool autism program”:
http://www.northjersey.com/education/educationnews/19037359.html


“Charities attack autism schooling judgement”:
http://www.theherald.co.uk/news/news/display.var.2279656.0.Charities_attack_autism_schooling_judgment.php


“Dog denied spot at autistic boy’s school”:
http://www.foxcarolina.com/education/16332323/detail.html


“Special Educators”:
http://www.fredericknewspost.com/sections/opinion/display_editorial.htm?StoryID=75123


“New technologies help autistic children communicate”:
http://www.wjxx.com/news/health/news-article.aspx?storyid=108947


“Lee’s Summit autism program to be highlighted at state event”:
http://www.kansascity.com/news/local/story/625780.html


“Educators with questionable credentials”:
http://abclocal.go.com/ktrk/story?section=news/13_undercover&id=6141190


“Autism in schools”:
http://www.wcbd.com/midatlantic/cbd/news.apx.-content-articles-CBD-2008-05-19-0012.html

EMPLOYMENT


“Autistic Traits: A Plus for Many Careers”:
http://autism.about.com/od/transitioncollegejobs/p/autismskills.htm


“Auties.org”
Individuality, Diversity, Equality, Achievement

Auties.org is an Aspie & Autie friendly site for all people on the Autistic Spectrum who are ready to dare reach out to occupation and employment, open the doors to the community and market their abilities directly to the public and for those interested in supporting these pioneers. http://www.auties.org/

“Autism Jobs”
Linking job seekers with vacancies in work related to autism, Aspergers and ASDs
http://www.autismjobs.org/?section=00010009


Current Job Vacancies within the NAS”:
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=170

GENERAL/HUMAN INTEREST


“A different path to genius”:
http://www.abc.net.au/science/articles/2008/05/22/2252608.htm?site=science&topic=health


Dennis Debbaudt “Understanding autism vital for law enforcement”:
http://www.htrnews.com/apps/pbcs.dll/article?AID=/20080521/MAN0101/805210498


Seizures “The answer to autism may be inside the mind”:
http://abcnews.go.com/GMA/OnCall/Story?id=4882297&page=1


“Girls with Asperger’s Syndrome”:
http://autismaspergerssyndrome.suite101.com/article.cfm/girls_with_aspergers_syndrome


“Boy, 9, autistic, plays ball, wins essay contest”:
http://www.sacbee.com/101/story/958257.html


“Einstein may have had a form of autism”:
http://www.nbc5i.com/health/15742730/detail.html


“Einstein letter calls Bible ‘pretty childish”:
http://www.msnbc.msn.com/id/24598856/?GT1=43001


“Small steps, big strides”:
http://www.hgazette.com/homepage/local_story_142143421.html?keyword=leadpicturestory


“Autism and Summer Activities”:
http://autismaspergerssyndrome.suite101.com/blog.cfm/autism_and_summer_activities


“New group raises money and awareness of autism”:
http://www.zwire.com/site/news.cfm?newsid=19699481&BRD=2287&PAG=461&dept_id=512588&rfi=6


“Autism assistance dogs are coming to New Zealand”:
http://www.scoop.co.nz/multimedia/tv/health/8348.html


“Perhaps we’re all a little autistic”:
http://www.timesonline.co.uk/tol/comment/columnists/guest_contributors/article3957913.ece


SYNAESTHESIA
http://www.bbc.co.uk/health/conditions/synaesthesia1.shtml


Synaesthesia Research”:
http://www.syn.sussex.ac.uk/


“Why I and O are dull for synaesthetes”:
http://www.newscientist.com/channel/being-human/brain/mg19626304.500-why-i-and-o-are-dull-for-synaesthetes.html


“Right Brain v Left Brain”:
http://www.news.com.au/heraldsun/story/0,21985,22556281-661,00.html

ADD/ADHD


“It’s not fair” says family told to quit home”:
http://www.redditchadvertiser.co.uk/mostpopular.var.2261462.mostviewed.its_not_fair_says_family_told_to_quit_home.php


“Soon, a therapeutic vest to lessen anxiety in autistic, ADHD kids”:
http://www.dailyindia.com/show/242394.php/Soon-a-therapeutic-vest-to-lessen-anxiety-in-autistic-ADHD-kids-


“More college students depending on prescription drugs to fight fatigue, cram for papers, final exams”:
http://www.kdhnews.com/news/story.aspx?s=25219


“Skin patch effective in ADHD treatment”:
http://www.dailyindia.com/show/239827.php/Skin-patch-effective-in-ADHD-treatment


“OROS(R) Methylphenidate in adults with ADHD: New Insights”:
http://www.medilexicon.com/medicalnews.php?newsid=106675


“Adult ADHD undiagnosed?”:
http://www.webmd.com/add-adhd/news/20080506/adult-adhd-underdiagnosed?src=RSS_PUBLIC


“adders.org”

Our objective is to promote awareness to AD/HD (Attention Deficit/Hyperactivity Disorder) and to provide information and as much free practical help as we can to affected by the condition, both adults and children, their families in the UK and around the World via this website.
http://www.adders.org/


“ADDISS”

The National Attention Deficit Disorder Information and Support Service.
http://www.addiss.co.uk/


ADDA”:
http://www.add.org/


ADHD Pages”:
http://www.adhd.org.uk/


CHADD”:
http://www.chadd.org/am/CustomPages/home/CHADD_Home.htm?CFID=2282059&CFTOKEN=38105335&jsessionid=f2303343221169802693562


Living with ADHD as an adult”:
http://add.about.com/od/livingwithadhd/a/LivingadultADHD.htm


Famous people with ADD/ADHD”:
http://add.about.com/od/famouspeoplewithadhd/a/famouspeople.htm


book “Thom Hartmann’s Complete Guide to ADHD: Help for Your Family at Home, School and Work”
http://www.amazon.co.uk/gp/product/1887424520/ref=pd_rvi_gw_1/202-2320706-4637410?ie=UTF8

SPORT

“Edinburgh Marathon 2008 – 25th May, 2008”:
http://www.getmilesmore.org.uk/event_details.php?id=20


“BUPA London 10, 000 Run 2008 – 26th May 2008”:
http://www.getmilesmore.org.uk/event_details.php?id=32


“The Champagne Bike Ride 2008 – 6th June – 9th June”

From London to Reims – NAS’ toughest bike ride yet!:
http://www.getmilesmore.org.uk/event_details.php?id=41


“Trek Kilimanjaro 2008 – 12th June – 21st June”:
http://www.getmilesmore.org.uk/event_details.php?id=13


“The 10k for Men – 15th June, 2008(Held on Father’s Day)”

Location: Bellahouston Park, located south-west of Glasgow City Centre
http://www.getmilesmore.org.uk/event_details.php?id=49


“The London Triathlon 2008 – 9-10th August”:

The world’s largest triathlon takes place on the streets of central London and the Docklands.
http://www.getmilesmore.org.uk/event_details.php?id=21


“Trek the Inca Trail 2009”:
http://www.getmilesmore.org.uk/event_details.php?id=15


“Eco-Olympics helps autism, environmental groups”:
http://www.miamiherald.com/news/miami_dade/story/537668.html

MUSIC


Gary Numan:
http://www.numan.co.uk/


“Numan convinced he has asperger’s”:
http://www.contactmusic.com/news.nsf/article/numan%20convinced%20he%20has%20aspergers_1060637


“Connections”:
http://www.connectionsmusic.co.uk/

ART


NEW  “Eric Jiani” – The site itself is a masterpiece, magnificently presented. You are invited to enjoy the slide shows to the accompaniment of Eric’s playing of his compositions on the guitar.

Eric Jiani was born on September 14, 1957 in London, UK. Educated at the British School, Rio de Janeiro, Brazil and Downside Abbey in the UK, Eric lived in both countries, his mother being Brazilian and his father English. Eric is therefore fluent in both Portuguese and English.

Artistically inclined from an early age, Eric is self-taught and it was not until 1978 that he committed himself full-time to his art. In Brazil, Eric spent some years living on the edge of the jungle; whilst in England he has taken on various jobs such as kitchen porter in a bakery, assistant in a shoe shop, English language teacher(private pupils), Art Teacher(book illustration) and currently is a Music Sessions Worker. Eric also plays his own compositions on guitar and writes.
http://www.eric-jiani-artist.com/index.html


Ping Lian Yeak:
http://www.pinglian.com/


“About Ping Lian Yeak”:
http://www.pinglian.com/summary.htm


“Ping Lian, 12, is autistic and a hit in New York”:
http://thestar.com.my/news/story.asp?file=/2006/1/19/nation/13126475&sec=nation

MOVIES/ENTERTAINMENT


“Autism in the Movies: Rainman, Mozart and the Whale, Snow Cake and Autism the Musical”:
http://autismaspergerssyndrome.suite101.com/article.cfm/autism_in_the_movies


“Actors for Autism”:
http://www.actorsforautism.com/

BOOKS


“Understanding Nonverbal Learning Disabilities”

Author: Maggie Mamen
http://www.jkp.com/catalogue/book.php/isbn/9781843105930


“A Self-Determined Future with Asperger Syndrome

Authors: E. Veronica Bliss and Genevieve Edmonds
http://www.jkp.com/catalogue/book.php/isbn/9781843105138


“Asperger Syndrome – What Teachers Need to Know”:

Author: Matt Winter
http://www.jkp.com/catalogue/book.php/isbn/9781843101437


“Asperger’s Syndrome and High Acievement: Some Very Remarkable People”

Author: Ioan James
http://www.jkp.com/catalogue/book.php/isbn/9781843103882


“Different Like Me: My Book of Autism Heroes”

Author: Jennifer Elder

Illustrated by Marc Thomas and Jennifer Elder
http://www.jkp.com/catalogue/book.php/isbn/9781843108153


“Different Croaks for Different Folks: All about Children with Special Learning Needs”

Author: Midori Ochiai

Illustrated by Hiroko Fujiwara

Translated by Esther Sanders
http://www.jkp.com/catalogue/book.php/isbn/9781843103929


“Kids in the Syndrome Mix ADHD, LD, Asperger’s, Tourette’s, Bipolar, and More!”

The one stop guide for parents, teachers, and other professionals

Author: Martin L. Kutscher MD

With Contributions from Tony Attwood and Robert R Wolff MD
http://www.jkp.com/catalogue/book.php/isbn/9781843108108


“A Will of His Own”

Author: Kelly Harland
http://www.jkp.com/catalogue/book.php/isbn/9781843108696


“Stepping Out: Using Games and Activities to Help Your Child with Special Needs”

Author: Sarah Newman
http://www.jkp.com/catalogue/book.php/isbn/9781843101109


coming soon August 2008 “Small Steps Forward”

Using Games and Activities to Help Your Pre-School Child with Special Needs

Author: Sarah Newman

Illustrated by Jeanie Mellersh
http://www.jkp.com/catalogue/book.php/isbn/9781843106937


coming soon July 2008 “Concepts of Normality”

The Autistic and Typical Spectrum

Author: Wendy Lawson

Foreword by Nancy Clark
http://www.jkp.com/catalogue/book.php/isbn/9781843106043

In closing, a great website for children, filled with fun, learning and activities – National Geographic Kids:
http://kids.nationalgeographic.com/


For those with an interest in photography with a focus on lightning:
http://science.nationalgeographic.com/science/photos/lightning-general.html


Interactive: Make Lightning Strike:
http://science.nationalgeographic.com/science/earth/natural-disasters/lightning-interactive.html


“Lightning Can Strike Twice/ Facts & Info”:
http://science.nationalgeographic.com/science/earth/natural-disasters/lightning-profile.html?nav=A-Z


Hope you enjoyed the read.


Take Care,

Julie

Moraine Lake, Banff National Park, Alberta



First Published Thursday, 22nd May, 2008.

FWD:  Please Circulate Far & Wide!!!


I’d like to tell you about my friend and colleague, Roanoke Virginia
Police Officer Brian Lawrence.


Brian was seriously injured, paralyzed, while responding to a call
for assistance last weekend.


Brian took the cause of autism as his own years ago not only as a
Project Lifesaver International instructor, but as an officer and
autism trainer. Brian learned well about autism and adds his
insightful and caring nature when he provides training to others in
law enforcement about our sons and daughters who are affected by autism.


It’s time for us to give Brian something back from the autism
community through our thoughts, prayers, get well messages and
donations. Please take a few moments to do so.


I welcome and pray for Brian’s speedy recovery and look forward to
working with him again in the future as we train law enforcement and
other first responders about autism.


Brian: We love you and wish for your speedy recovery!


Dennis Debbaudt


Supporting Officer Bryan Lawrence


By <mailto:lmarkowski@wsls. com>LAURA MARKOWSKI


Published: May 15, 2008 – WSLS Channel 10


WSLS learned today that Roanoke City Police Officer Bryan Lawrence
is paralyzed from a brutal attack this past weekend. Many of you may
want to show support for Officer Lawrence and his family, so we’re
on your side with information.
His fellow officers are raising money to help with medical bills.
There will be a poker run on June 14th beginning at the Roanoke Civic Center.
There will also be a silent auction and a raffle.
The exact details are being worked out, and we’ll update you as soon >as they are made available.


You can also stop by any SunTrust Bank branch and make a donation,
c/o RCPA Bryan Lawrence Fund.


If you’d like to send him a get well message you can also do that.
Just send letters to:
“Get Well Soon Officer Lawrence”
c/o Roanoke City Police Dept. NE Office
1502 Williamson Road, NE
Roanoke, VA 24012


Bryan Lawrence was off duty but was hurt as he responded to a call
about a nearby disturbance.


By <mailto:amanda.codispoti@ roanoke.com>Amanda Codispoti
981-3334


As a Roanoke crime prevention officer, Bryan Lawrence is always
looking out for others.


He advises home and business owners about how to protect their
property, tracks autistic children and Alzheimer’s patients who have
wandered away and may be in danger, and more.
It was that same desire to help that drew him away from his off-duty
job providing security Saturday night when he heard on his radio that a woman had been hurt not far from where he was, said his son, Robert Lawrence.
Police said Monday that it was Lawrence who was assaulted and left
unconscious after chasing two suspects, one of whom was later
charged with hurting the woman at the Go Mart in the 3500 block of
Williamson Road Northwest.



Lawrence is recovering at Carilion Roanoke Memorial Hospital.
He suffered a neck injury, and was to have surgery Monday, Robert
Lawrence said.
“He’s doing fine,” Robert Lawrence said. “He’s very responsive now,
compared to when he came in.”
The incident began about 11:20 p.m., when officers were called to a
disorder at the Go Mart, said police spokeswoman Aisha Johnson.
When officers arrived, they found Mary Gilkes, 50, of Roanoke, who
had been hurt, Johnson said. Gilkes gave police a description of two
men who had fled.


William Steele Jr. has been charged with malicious wounding of an
officer and felony obstruction.


Dantonio Foster was charged with malicious wounding related to the
disturbance at the Go Mart, as well as felony obstruction.
Lawrence saw the suspects at 11:34 p.m. in a vehicle at Huntington
Boulevard and Hillcrest Avenue Northwest, Johnson said.
When he stopped the vehicle, the men ran. Lawrence ran after them
and was in the process of apprehending one suspect when he was
assaulted by the other suspect, Johnson said.



Other officers who were called to help Lawrence found him
unconscious at 11:37 p.m. in the 3400 block of Hillcrest.
Police would not say if Lawrence was wearing a police uniform or armed.
William Steele Jr., 18, of Roanoke was caught by a police dog in the
900 block of Greenhurst Avenue. He was charged with malicious
wounding of an officer and felony obstruction.

Dantonio Foster, 25, of Roanoke was arrested later at Lyndhurst
Street and Queen Avenue. He was charged with malicious wounding
related to the incident at the Go Mart, as well as felony obstruction.
He also is charged with malicious wounding related to an incident
that happened Friday, according to court records.
Officers were called at 11:10 p.m. to the 2900 block of Centre
Avenue Northwest, where a 25-year-old woman had been stabbed, Johnson said.
Court records also show that Foster was convicted of misdemeanor
assault charges in 2007 and 2006, and was convicted in 2005 of
possessing cocaine with the intent to distribute.


Lawrence is known throughout the community for his work with Project
Lifesaver, which provides police with a way to find people with
Alzheimer’s disease, Down syndrome, autism or mental illness who
become lost or wander away.
Participants wear radio transmitters that police can track by computer.
Lawrence is one of four national instructors for the
Chesapeake- based Project Lifesaver International, said Tommy Carter,
chief of training for the organization.
“Bryan cares about people, especially those who really can’t help
themselves, ” Carter said.
Staff writer Mike Allen and news researcher Belinda Harris
contributed to this report.


Dennis Debbaudt
http://www.autismri skmanagement. com
phone (772) 398-9756
fax (772) 398-2428
Port St. Lucie, Florida
“Passion: You Can’t Buy It – You Can’t Hide It!” (Debbaudt, 2005)



Aspie Soldier

ASPIES IN THE MILITARY


First Published Tuesday, 13th May, 2008.

It’s not at all surprising that a career in the armed forces might be enticing to an Aspie.  Many will tell you they ‘were made for it’ – the order, the structure, the routine.  Some are known to have fine leadership qualities and thrive in such positions, becoming ‘heroes on the battlefield’, excellent role models for those lower in rank.  Others may thrive under the control of superiors, given clear and consistent direction, able to count on the rules being maintained and upheld, becoming experts in their chosen area, perfectionists in and on the field.


Naturally, this is not the case for all aspies who have embarked on the military path.  We are all complex individuals, and as such, we must learn by trial and error which path best suits our makeup.  Life demands that we accept and acknowledge our capabilities and our limits. For some, the military choice will and should never be an option. What accounts for the making of one man/woman, may be the unravelling of another.

Navy

ASPERGER SYNDROME IN MILITARY SERVICE

Roger N. Meyer

Copyright © 2005 All Rights Reserved


Introduction


To the author’s knowledge, Asperger Syndrome (AS) as it affects the military service has not received any substantial public attention prior to publication of this paper.  A fully annotated version of this document will be available in early 2005.


This paper addresses specific aspects of Asperger Syndrome as manifested by personnel in military service.  Background for material contained in this article comes from the author’s own experience in the US Army in the mid to late 1960’s, reports of service veterans later diagnosed with Asperger Syndrome following their discharge from service as well as individuals currently serving on active duty as officers, enlisted personnel, and warrant officer personnel with all US military services, including the US Coast Guard.  Information from these sources has come through postings on Email list servs, personal correspondence, and personal contact.



There are few written accounts of what military service is like for individuals later diagnosed with Asperger Syndrome.  Two accounts appear in the writings of Edgar Schneider.  He served in Korea.  He first describes military life in chapter 18 of his book Discovering my Autism (1999).  In that chapter he refers to the singularity of purpose and hyper focus that made him an effective soldier performing technical tasks.   In “Values Manifested during Military Service,” the author describes the best time he had in the service was time he spent as an enlisted man.  Although he later accepted a field commission, he alludes to the high level of competence he could demonstrate as an enlisted technician, something denied him in role as an officer. In his latest book Living the Good Life with Autism (2003) on pages 227-122, Mr. Schneider refers briefly to his dissatisfactory experience as an officer including suggestions made by his reviewing commander aware of his command limitations that the warrant officer career ladder would be more appropriate for individuals with his known challenges. The author also refers to the confused and mixed feelings he experienced following his active service as he encountered other former members of the armed services.


In this author’s Portland adult Asperger Support Group, there are six members who are former military personnel.  (There may be more.) One member, now in his early seventies, was an aircraft mechanic and crewman in a B-29 bomber squadron during the Korean War.  A second member saw duty as an artilleryman in Vietnam and like many combat personnel during the early phases of that war, he received an “early out” following his active duty to Vietnam. A third member is a graduate of the Air Force Academy who served in highly technical assignments before he left the service.  He did have command experience, but not in a combat setting.


The fourth man was in the Navy during WWII.  He was a “medical washout.”  He went on to have two, long-time careers and lives a comfortable retired life.  A fifth man spent four years of a Regular Army enlistment as an intelligence specialist in Vietnam.  A sixth is a Gulf War veteran Marine Corps Gunnery Sergeant “in for six” in charge of an advance company of 120 men which forged ahead right after conditions ahead had been softened by artillery and air attacks.


Except for the man who “medicaled out,”, their experiences are typical of others who reported good experiences in high-skills-valued military occupational specialties in all branches.  Of the six, two held up well under demanding combat conditions.  The one who “medicaled out” represents the tip of the iceberg of late and undiagnosed former members of the service who didn’t fit.  While some had successful lives following their encounter with the military; many more did not.


For a sequel to this paper, this author has begun to collect service and re-entry histories of adults recently diagnosed with AS.  From only a half dozen histories taken so far, most individuals report successful military careers in which they chose to remain on active duty for substantial periods of time in a variety of roles, some command and some support.


Why Knowledge of Asperger Syndrome is Needed in the Military


Recent Knowledge of Autistic Spectrum Disorders (ASD) in Military Medicine


Over the past decade, adult Asperger Syndrome has become better known to career military medical and psychological specialists for several reasons.


First, the general media has featured AS prominently in articles about children, and, more recently, about adults who may either have been diagnosed with autistic spectrum disorder as children, or recently properly diagnosed as adults after a succession of earlier diagnostic labels that never quite seemed to fit.  Career military medical and mental health professionals view the media and read the same journals as their civilian counterparts.


Second, as military service and affiliated health service clinical professionals members identify AS children and adolescents of active service members, best diagnostic practice currently calls for assessment of first order family members of children for likely indicia of autistic trait behavior.  If not found in the biological parent(s), autistic spectrum disorder has been shown to be prevalent in parents’ immediate and extended family members.  Even in the instance of deceased family members, it is possible to reconsider their condition from family history and documentation as connected to or likely “on” the autistic spectrum.  Since many ASD-related behavioral anomalies are quite manifest in the early years, effective early intervention efforts are markedly improved when ASD-specific parent training helps spectrum-sitting parents partner with professionals working with their children’s developmental delays and challenging behaviors.


Third, active military adults, many of whom have been called to full-time duty recently as a result of heightened DOD dependency upon the Reserves and the National Guard may, in fact, have been diagnosed with Asperger Syndrome or considered likely candidates for the diagnostic label by mental health providers in the civilian healthcare system.  Even if not diagnosed, if an activated military member reports autistic spectrum disorder in his or her family of origin, the statistical likelihood of the member having trait or full-blown high functioning autism or Asperger Syndrome, or PDD/NOS, is significantly higher than with persons reporting no such incidence in their families.


Another reason why AS has become better known to the military medical and mental health system is that recently activated medical and mental health professionals have bring up-to-date civilian diagnostic practices and perspectives into military medicine.  Questions regarding accommodations for disabilities are commonly asked of civilian clinical practitioners.  It is likely that informal accommodations long a part of the military culture may be formalized by more prevalent practice and the “in the records jacket” written entries of recently re-activated mature personnel.


With the graying of the Individual Ready Reserves and National Guard, disability accommodation issues, generally considered of secondary importance in active duty retention and promotion situations, now have become far more prominent as individuals with a very broad range of civilian employment skill sets along with some special needs are recalled to active duty.  When disabled National Guard members arrive with their intact units, it is not possible for the active career services to impress such persons into other regular service units for reasons of military convenience due to the fact that although we may be in a state of war, a full set of draft conditions does not, in fact, exist that otherwise might allow such inividual member reassignment between National Guard and active service unit components.  If their disabilities make them unfit for combat and If their units’ assignment involves combat theatre deployment, National Guardsmen and women must currently be separated from the service.  While fitness to serve may be a medical decision, preserving the fighting readiness of an individual National Guard unit is strictly a command decision, not a medical one.  Guided by advice and recommendations of  their medical corps colleagues, unit commanders make such decisions on a case-by-case basis.


Disclosure is an Issue


In the case of persons called to active duty, some HFA/AS individuals may not disclose their diagnosis or their suspicions even if they have private concerns or are self-diagnosed, often with peer confirmation.  Failure to disclose is attributable to a number of causes.


First, the individual may not be sure that he is autistic, especially if he has not sought a definitive diagnosis by a competent mental health professional experienced with the condition.


Second, Individuals can remain undiagnosed due to systemic problems in the mental health profession.  Many civilian mental health professionals remain woefully ignorant about autistic spectrum disorders, and if the individual seeking an explanation for personally troubling behavior or life-long cognitive challenges encounters professional ignorance, or, worse yet, arrogance, they may still harbor a concern that hasn’t been well-handled by an insensitive mental health professional or a whole string of them.


Medical and mental health professionals who have virtually no clinical practice, and only act as consultants to agencies and benefits systems, such as Social Security and Workmen’s Compensation, and, in increasing numbers, to the medical insurance industry, persist in obsolescent, professionally indefensible conduct attributable to collegial reluctance to call such persons to task for their failure to observe current diagnostic practices.  Other mental health specialists corner a niche market and see only what their particular specialization within the broader field allows them to see.  Unwary individuals seeking and accurate diagnosis soon learn the “street reputation” of such self-proclaimed experts, and avoid them due to their proclivity to label everything and everyone who consults them with their own one-size-fits-all label.


A related systemic problem is that some professionals altogether reject the notion that Asperger Syndrome is a legitimate condition, despite the body of literature differentiating it from other developmental conditions and near-universal professional acceptance of its special features.  Individuals in the military medical and mental health fields treating only members of the service rather than their families are less likely to consider Asperger Syndrome among suspected conditions as it is often associated in their minds only with child diagnosis and presents differently in mature adults of either sex.


Third, the individual may know he is Asperger Syndrome or high functioning autistic (HFA) but has developed comprehensive coping mechanisms and masking behavior to the point that his manifestations rarely “leak out” to casual acquaintances — employers or others who might otherwise be in positions to observe eccentric behavior or thinking and either comment or act on it.  While this is a relatively rare phenomenon, in dealing with highly motivated individuals desiring to serve their country through military service, the AS individual’s single-minded dedication to serve may, under non-stressful conditions, becomes a perserveration that masks their otherwise noticeable manifestations of Asperger Syndrome.


Asperger Syndrome and the Failure of Logical Connections


Even among individuals who acknowledge their Asperger Syndrome, there may be instrumental reasons why they do not disclose.  Some failure to disclose is a function of the different explanatory and logic systems of people with the condition.


For example, they may view serving in the military as such an essential part of their identity that they fail to consider the consequences of what would happen when stress and demands for multitasking and instant-judgment problem-solving suddenly strips away the veneer covering their condition’s ordinary invisibility or characterization as a mere eccentricity.  Another example of an instrumentally related non-disclosure is that the AS individual may not think that their self-determination is either of interest to others or would be considered in the same way they consider it.  Their own unique self-oriented, closed-system logic convinces them of this conclusion.  Hence it doesn’t occur to them that others have their own reasons for wanting them to disclose.


Other ASD individuals may primarily view the Reserves or the National Guard as a vehicle towards government-subsidized education or a supplemental income to what otherwise is very low pay in the civilian job market.  It is easy for others to see the connection between disclosing a condition and the welfare of fellow comrades in arms.  Many AS individuals fail to make that connection, primarily because up to the time of their activation to combat duty, they haven’t thought of the process they’re involved in as “weekend warriors” as relating to much more than fantasy rather than rehearsal for the real McCoy.  Individual incapacity to see the big picture under normal — let alone combat stress conditions — can have tragic consequences.


Many individuals are unskilled in disclosing their condition.  Contrary to others’ expectations arising from the apparent “social competence” demonstrated by some AS individuals, many individuals with ASD have only surface-level skills, developed after patient, long-time rehearsal.  Under non-routine, unpredictable conditions, their poor initiation skills combined with a fear of making social mistakes leaves them unable — not unwilling — to disclose.  Many AS individuals are poor judges of the best conditions supportive of disclosure, or as is more often the case, suppressing the truth when to them — but not to others — “truth must be told.”  Having learned that their inaction as well as their poor behavior choices when they have decided to act generates negative reactions by others, they don’t know how to disclose, and so often they don’t.


Denial


A final reason why individuals with ASD do not disclose their condition to others is denial. Having received the diagnosis from a competent professional, or having been clearly informed about ASD by family members, friends or colleagues, their brittle self-concept and need for absolute control prevents them from taking in the message.  In the past, under the “old military model” it may have been possible for service personnel to operate easily within the clearly designated confines of well-outlined military occupational specialties.  Routine was relatively unchanged between one unit and the next, and while differences in command style have always existed, the rhistoric inflexibility of the armed services in accepting change and the documented practices to always fight the last war lent an air of great predictability and comfort to individuals whose lives depend upon regularity, “the same routine,” and the absence of sudden change.


These are the individuals who report having completed their terms of active service with a certain degree of pride about their military career, whether they spent a single enlistment period or the full hitch.


Those individuals (men) who were married and had children and wives with them during their terms of service were characterized by their wives as rigid, unbending disciplinarians often acting with unrealistic, “wooden” and unreasonably high expectations towards their children, and uniformly uncomfortable in the social presence of other personnel.  Their wives reported that living with them, or when they experienced their returns from duty during leaves and holidays, were times of high tension.  In most cases, the marriages were not described by the wives as emotionally satisfying, nor were parenting responsibilities, even under conditions of limited expectations, successfully carried out by these AS husbands.


Not enough is known about women now diagnosed with Asperger Syndrome to make such categorical statements about their active service careers, although it is very likely that a good number of women have done rather well in the male-values oriented military because of the greater likelihood suggested in some research that their values align more along the values, behaviors and attitudes of the stereotypical male role than the role assigned by society to the “place” and temperament of women in the work force.


Washouts


On the other side, those who wash out early, sometimes not getting further than an enlistment center without seeing life in basic training, AIT, or their first full-duty assignment…these are ASD individuals who recognize the ill-fit between their needs and that of the service.  When this author was in “the old military” in the mid to late 1960’s, he served six months in an armor branch training battalion as S-1 clerk after having first served for 18 months as an instructor to enlisted clerical personnel at the same location.  In both assignment areas, he experienced the washout phenomenon first hand, mainly from enlisted personnel caught in the draft or as entering-phase volunteer recruits.  While most of the individuals found unsuitable for the service were clearly so long before they entered, others — a much smaller number, and among them, most likely some individuals on the autistic spectrum — learned that their expectations did not meet the demands of the service, even surrounded as they were with such regimentation and routine, with no prospect of seeing combat as a consequence of their advanced training.


They simply couldn’t take the change from the routines and predictable conditions that had surrounded them up to the time of entry into the service.  Realizing at last that the military wasn’t the same place,  they did anything and everything to get out.  Looking back now as this author remembers processing their Article 15’s and Summary Courts Martial materials, some of these washouts may not have craved escape as much as they did an absence of change and predictability to what otherwise appeared to them to be a chaotic set-up over which they did not have the appropriate internal tools in place to exert control over behaviors that now could be perceived as predictable Asperger Syndrome response to radical change.


There were junior officers who failed to complete their initial branch advanced training assignments as well.  Along with enlisted personnel separation and discharge papers, this author processed their papers.  A number of well-educated individuals in this group demonstrated little capacity to think clearly or appropriately under the slightest amount of stress or under changed conditions.  This author has little doubt that among such individuals were persons who made excellent paper grades but whose people-skills, as well as other skills essential to command, were more likely related to possible Asperger Syndrome coming into contact with the real-life demands of the complex social and multi-tasking duty world of the officer corps.


Under the old military, and under military assignments and conditions that are clearly unlikely to involve the uncertainties built into combat situations, AS individuals in the past and in the present do “just fine.”  Many individuals in Reserves and National Guard Units who never expected to be on the front line, no matter how far removed from previously well-defined lines of combat, now find themselves pressed into duty conditions where the lines aren’t clear, and where high vigilance is often the standing order of the day.  For individuals clinically defined as hyper vigilant even under non-stressful conditions, the implications of placing such persons in combat conditions couldn’t be clearer.  Rather than knowing what they will do under such conditions, it is best for all dependent upon them to expect the unexpected from them.  And they usually get it.


The New Military Demands Different Skills and Flexibility


Between Vietnam and Grenada


The all-volunteer military brought with it a unique set of demands, but also carried forth many predictable traditional ways of doing business.  During this time, it was possible for individuals to somewhat control the conditions under which they chose to serve, or to select military occupations less likely to experience severe disruption, displacement, or change.  Our country’s much smaller volunteer defense component was able to weed out individuals who showed less promise than that required of a new, leaner structure.  Marginal officers who had somehow made it under the radar and had bumbled along mostly unnoticed or passed on by commanding officers who hoped for the best but realized the least from their performance now found themselves cast out of the service. By the time of the Gulf War, the military had gotten so lean and mean that for the first time, Reserves and the National Guard were called up in large numbers.  Nevertheless, the War was so brief and the return of Gulf War “extras” was so swift that it’s hard, even today, to untangle the complicated web that spelled “major change” that we now see in the active service.


Everything has changed as a consequence of 9/11 and the Iraq War.


One AS Officer’s Story


In the late nineties, this author recalls having received a call for assistance from the sister of former Army major, passed over three times, who was a reduction-in-force cast-off.  He remained largely un-noticed as an enlisted man, and eventually applied to OCS and received his commission.  The author never met him, but was told by his sister and her husband, who became his full-time providers of employment, bed and board, and entertainment, that not only did he suffer from obesity, but also a profound lack of initiative.  It is hard to believe that given their description of his failure to accomplish a minimal level of adult self-sufficiency, even after having been discharged with a nice cache upon his mustering out, that he remained in the service as long as he did.  He was an inveterate gambler, and despite the sizeable amount lump sum of money nearly ($50,000.00) given him upon discharge, he burned through it in less than six months.  He was slovenly and unkempt.  He did not drink.  He did not use drugs.  He didn’t appear depressed, although reports of his conduct indicated massive maladjustment to independent living.  He joined the military right out of college with no prior work history or attempts at living independently.  As an adult, the military was the only home he knew.  When the author last had contact with his sister, she reported they had to fire him from his “make-work” job in the family binding business.  He had also been finally asked to leave their home.  He was unable to offer them any assistance in caring for their children and became another child in the house.   As far as his sister knew at our last contact, he was homeless.


The only way the sister knew her brother was Asperger Syndrome was through knowledge she gained in having married a successful, high functioning Asperger husband herself.  The fact of AS was brought home when two of her three children (males) were diagnosed with AS.  Having studied up on AS, she saw “AS all over the place” in her adult brother’s history and childhood.


This man had been able to get by for 17 years in the active military during its non-draft history following the Vietnam War.  He was finally discharged honorably but for good of the service primarily because his obesity and poor self-care was one issue that couldn’t be overlooked.  He was good at what he did; however, he refused to accept more challenging assignments.  He was a perpetual student, and while in the military, completed his undergraduate degree and earned three master’s degrees.  When he dropped from the author’s sight, he was enrolled as a graduate student studying for a fourth master’s degree at a local urban university, this time having started his profile as a government loan recipient.  He was not working.  He is never likely to work.


He didn’t know the meaning of work in a competitive employment setting, nor did he connect the value of money with what it cost to live.  He had no social skills to speak of.  In today’s military, as well as in the military from which he was discharged, he was unacceptable material.


More Coming Home Means “More In”


In the media, there have been occasional articles about homeless individuals who are Gulf War, and now Iraq War veterans.  One such article in a Portland Oregon paper featured the story of a homeless veteran with Asperger Syndrome.  He was in the Army in the late 1980’s for two years, then joined the Montana National Guard and transferred to the Washington State National Guard serving for an undisclosed period of time.  For most of his adult life he has been homeless, on drugs and alcohol, unable to hold onto work because of what he now recognizes as a lack of soft or social skills, and, of course, has lacked such skills all of his life.  He has many hard skills, good-job, high-paying skills, but not many soft skills.  He was diagnosed with AS two years ago.  He’s now on a rehabilitation track in a number of areas in his life.  The article says it is unknown how many such individuals there are on the streets at any one time.  Tracking individuals reluctant to access the shelters has given us only a best estimate of their real numbers.  Up to half of such homeless middle-aged men may be veterans.  Of course, this author does not suggest that a sizeable number of them may have undiagnosed Asperger Syndrome.  But some do.  With the number of active service personnel now at a recent historic high mark, there may be many individuals like him, just waiting their turn for discharge.


Some Common Characteristics of Asperger

Syndrome Noticeable under Stressful Military Conditions


Commanders in combat theatres know that many individuals demonstrate some of the behaviors listed below.  What should concern military commanders is that manifestations of Asperger Syndrome present more frequently or constantly, with greater intensity, or “clumped together” for longer periods of time, and are generally just “more so” than for the average person, even if the situation is far from ordinary.  When an individual demonstrates a great number of these characteristics during periods of relatively low stress while in a combat theatre setting, referral for comprehensive medical evaluation is especially recommended to prevent disastrous consequences under the highest stress conditions of combat.


No one without medical or clinical license should ever attempt a “field diagnosis” but it is appropriate for commanders to request competently trained mental health personnel conduct a formal diagnostic “rule out” for Asperger Syndrome.  When commanders use the term rule out, this term prompts mental health professionals to exercise a far higher level of sophistication in their evaluations than general requests to “Find out what’s the matter with this person!”


PROBLEMS WITH CHANGE


  1. Situationally unsuitable rigid adherence to routine and schedules
  2. Out of scale adverse response to announced or sudden changes
  3. Unacceptably slow in responding to change
  4. Increasingly inflexible approaches and resistance to problem-solving “on the spot”
  5. Unexpected rigidity and/or inflexibility when faced with sudden change of commander or supervisors
  6. Gradual or sudden unpredictable or unexpected behavioral outcomes to routine commands
  7. Difficulty in accepting correction or modifying approach to completing a task according to policy, standard operating procedures, or direct orders
  8. Literal interpretation of orders and directives –  “Inability to read between the lines”

PROBLEMS WITH TEAMWORK


  1. Individual becomes “frozen” or can’t respond appropriately under high-demand conditions
  2. Inability to “read others’ minds” when a security or quick decision-making action is called for
  3. Consistently poor ability to anticipate the needs of work team members or others not well known to the individual
  4. Problems recognizing people after having seen them only a few times, or even once
  5. Adverse, consistently negative response to being interrupted or re-directed
  6. Argumentativeness, challenges to direct orders, or inappropriate demands for explanations
  7. Gradually or consistently lacking in “common sense”
  8. More than usual avoidance of contact with others when not on duty or accomplishing joint tasks
  9. Rejection by members of command who rely upon a sense of camaraderie for effective performance of difficult or complex missions
  10. Dangerously high vigilance to auditory or visual stimuli  — out-of-scale startle reflex
  11. Poor appreciation of danger to self; deficient sense of danger to others
  12. Fails to understand when “Enough is Enough”
  13. Little apparent ability to provide constructive criticism or positive correction to others

UNUSUAL THOUGHT PROCESS — PROBLEMS WITH COGNITION


  1. Arrives at answers to problems which, while correct, could subject others to danger or harm” along the way”
  2. Consistently arrives at conclusions without being able to describe steps used to reach them
  3. Excessive devotion to ritual behavior of any kind not easily explained by religious or health reasons
  4. Unusual difficulty in “finding place” or resuming a task after interruption; preference to “start all over again from scratch
  5. Greater than average concentration difficulties or lapses of attention
  6. Difficulty generalizing from one specific task to a related one invovling only minor changes in detail
  7. Difficulty responding in own words to request to repeat what was just said by someone else
  8. Unusually slow response to verbal or gestural commands (not related to a known auditory or vision acuity medical condition)
  9. Insistence on telling “all the truth” when “telling it all” is not warranted by the situation
  10. Inappropriate perfectionism or attention to detail when “good enough” will do
  11. Unusual lack of initiative in starting routine or new tasks
  12. Requires repeated step by step instruction for learning simple, new tasks
  13. Constantly seeks assurance, acceptance or approval from others for self-directed tasks
  14. Failure to “See the Forest for the Trees” — transfixed by details, not  the whole picture

PHYSICAL AND EMOTIONAL MANIFESTATIONS


  1. Unkempt appearance; and poor awareness of physical appearance on others — bad personal hygiene
  2. Unusual food preferences that may inconvenience meal preparation or require elaborate  preparation rituals
  3. Sleep problems (interruptions, difficulty in falling asleep) resulting in chronic or unpredictable attentiveness during waking hours or hours of duty
  4. Unusual tolerance to or reaction to heat, cold, light, sound, touch, taste, smell, pain
  5. Hair trigger temper
  6. Limited emotional vocabulary and expression (different than being taciturn or stoic)
  7. Flat affect — Unable to understand or express a wide range of emotional expression
  8. Little or no apparent capacity to empathize with others’ pain, discomfort, or suffering

Summary and Conclusion


The author hopes that this introductory paper to Asperger Syndrome in the military service will sensitize commanders to the existence of Asperger Syndrome in the active military service who up to the present who have eluded easy understanding and who, because of the severity of their manifestations, may, indeed, present substantial risk to themselves and others in combat settings.


Asperger Syndrome, just like all of the other autistic spectrum disorders, or ASD’s, is a spectrum condition.  This means that for individuals with mild or trace aspects of Asperger Syndrome, military service can offer an good quality of life to them as well as provide the armed forces with their special skills and talents, which haven’t been addressed in this paper.


If means can be arranged within a “ready to fight anytime, anywhere military” for individuals with the special skills Asperger individuals are known to have away from a combat setting, they could contribute substantially to the higher level intellectual culture of the armed services by being allowed to serve, as indeed many of them now serve with distinction, undisturbed, undiagnosed, but appreciated.


Even in its milder forms, Asperger Syndrome may be accompanied by known higher prevalence of certain health problems and some mental health disorders of a chronic rather than an episodic or “one time” nature.  Because of the still unresolved relationship between autistic spectrum disorders and these other conditions, no doctrinaire conclusions can or should be drawn to suggest that AS is an unacceptable condition in the armed services.  Like it or not, commanders at all levels may have individuals with undiagnosed, mild Asperger Syndrome in their units.  Rather than sweeping the baby out with the bath water, intelligent, informed deliberation should guide a commander’s decision to pry into the innards of a subordinate’s life, especially when the person appears to be doing well, if not very well, undisturbed.  If an individual in question has served well and with distinction, this is even less of a reason for knee-jerk, insensitive response to a commander’s increased knowledge of this condition.


Knowledge of Asperger Syndrome “in” the command provides no excuse for a witch hunt that could leave the military considerably poorer in having exercised uncritical judgment in declaring an entire, highly varied class of individuals unfit for duty without considering, in each person’s case, whether the ultimate decision to retain or seek separation is truly good for the service or the nation.


Call for Phase II Participatory Research Partners


This paper represents the first informative phase of a two-step research project.  Phase II will solicit information from active, resigned, deactivated, or retired members of the mlitary who have reason to believe they are Asperger Syndrome.  Information will also be solicited from family members of the military services who have good reason to believe a relative who has seen military service may be Asperger Syndrome.  Complete description of Phase II can be viewed by clicking on this link.


A questionnaire for participants is undergoing final pre-testing for both telephone interviews as well as a downloadable written document.


About the Author


Roger N. Meyer is author of Asperger Syndrome Employment Workbook (2001) and is completing a second book on peer-led adult AS support groups.  Diagnosed with Asperger Syndrome in 1997 at the age of 55, he is an independent disability consultant, advocate and representative for individuals with cognitive and developmental challenges.  He served his full enlisted term in the US Army, attaining maximum allowable enlisted rank.  He saw duty as an enlisted instructor, Battalion S-1 clerk, and intelligence specialist during a special temporary duty assignment to the Pentagon.


He maintains a private practice as a special education parent/student advocate, social security claimant representative, ADA advocate, independent mediator and wrap-around services case manager.  He founded and now co-facilitates the Portland AS (adult) support group, and with a licensed clinical colleague, co-facilitates a married AS Partners Group in which one or both members of the committed relationship are on the autistic spectrum.  A frequent presenter at regional and national conferences, Roger has maintained his interest in adult issues by participating with clinically licensed colleagues in a multidisciplinary monthly AS study group developing best counseling practices for children, families and adults.  He is active in Gresham Oregon  (Portland suburb) non-disability politics, serving as one of his city’s three commissioners on the Multnomah Housing and Community Development Commission. He is acting secretary of the Oregon Social Security Claimants Representatives organization.  Roger is president of the Rockwood Neighborhood Association serving Gresham’s poorest and most ethnically diverse neighborhood, and active in neighborhood and his condominium association’s board leadership.


Link:  http://rogernmeyer.com/adult_acts_and_consequences_as__the_military.html

Forrest Gump



Siblings

AUTISM/AS AND THE EFFECTS UPON SIBLINGS

First Published Saturday, 10th May, 2008.
Now and again the question of effect on siblings in families on the spectrum is raised.  In “Living with impairment: the effects on children of having an autistic sibling”, we take a balanced look at family life on the spectrum.
Siblings of autistic/AS children tend to be less hostile, less embarrassed, more accepting and more supporting than siblings of neurotypical children. Warm, harmonious family relationships have a protective effect, even when the impairment is severe (McHale et al. 1984).

It’s usually the more capable autistic child who whines about the unfairness of life than his siblings. They may resent not being allowed to do the same things at the same time, ie go to the same school or University etc.

We mustn’t forget that ‘normal’ family life is by no means problem-free. The mere presence of an autistic child or children is never going to be the sole cause of problems, though it may exacerbate problems from time to time. Guidance, open discussion, and sensitive handling of situations as they arise is par for the course parenting-wise.

Generally, the prognosis for a happy, non-resentful future adult-life for siblings greatly depends on the attitude of parents. Many studies have found that positive attitudes on the part of parents are reflected in the feelings of siblings, and encouraging them to value the assets of the differently-abled child is all-important.
To view the full article:

siblings

The following books/booklets are especially for siblings:

“Everybody is different: a book for young people who have autistic brothers or sisters.”
By Fiona Bleach

This book is different!  Aimed at school friends or brothers and sisters aged 8-13yrs of autistic children, it is written and illustrated by an accomplished artist who has worked in a National Autistic School.  Fiona explores the characteristics of autism, what it feels like to be a brother or sister of someone on the spectrum and offers helpful coping strategies.

“Able autistic children:  children with asperger syndrome:  a booklet for brothers and sisters” by Julie Davis

Designed for siblings of children with able autism or Asperger Syndrome from the age of seven, this booklet focuses on Asperger syndrome and the sibling experiences.
Published by the Early Years Diagnostic Centre

“Children with autism: a booklet for brothers and sisters” by Julie Davis
In the same series as Able autistic children, this booklet looks at siblings of autistic children, explains what autism is and explores some of the difficulties that siblings may experience.

“Can I Tell You About Asperger syndrome?  A guide for family and friends” by Jude Welton
Adam is 9 year old boy with Asperger Syndrome.  Here he explains his talents and difficulties as if talking to school friends and family.  Jane Telford’s cheerful pictures brings Adam’s world to life.

“My brother is different:  a book for young children who have autistic brothers or sisters” by Louise Gorrod.
Written by a mother of an autistic child and beautifully illustrated infull colour, this books explains the behaviour of an autistic child in terms that young siblings will understand, enabling them  to deal practically and emotionally with their brother/sister.  This book is aimed at younger siblings aged 4-7yrs.
Published by The National Autistic Society

“Siblings of children with autism:  a guide for families” by Sandra L Harris
An invaluable guide to understanding sibling relationships, how autism affects these relationships and what families can do to support their other children as they cope with the intensive needs of an autistic child.
Published by Woodbine House

“Brotherly Feelings – Me, My Emotions, and My Brother with Asperger’s Syndrome” by Sam Frender and Robin Schiffmiller

“Special Brothers and Sisters” – Stories and Tips for Siblings of Children with Special Needs, Disability or Serious Illness
Edited by Annette Hames and Monica McCaffrey

“Wishing on the Midnight Star” – My Asperger Brother by Nancy Ogaz

rainman

1. Carol and Eli Surber left…

Wednesday, 22 April 2009 11:20 pm :: http://stores.lulu.com/store.php?fAcctID

My son, now 32, was diagnosed with catatonia after 8 months of searching for an answer. For those months, he was mute, posturing, barely breathing, sat with his head on his knees for hours, would only move with our assistance, drooled and his eyes were like glass. We feed, bathed, dressed and moved his frozen body as we searched for a physician. Several physicians would not see him as they did not know what to do. I kept a journal and listed details of the beginning of his life, and the pre-symptoms before the autism and catatonia diagnosis. I listed all treatments, trial and error medications to bring him out of the catatonic stage. He eventually progressed to a near death stage and ECT therapy was mentioned. We did not accept the ECT, but instead tried different medications. He was lucky we found a catatonic specialist at the Ohio State University…who knew immediately what the problem was. This catatonic stage developed when he was 15, after abuse in a school setting. He also has Downs syndrome. I published the book, It’s Ok Eli in Feb 2008, unedited, with personal and detailed tests, results, pre-symptoms covering 22 years in his life. Included in the book are reactions from his older sibling. I hope the book will help others facing the same situations. The catatonic specialist that helped Eli, is also the co-author on the book, Catatonia, From Psychopathology to Neurobiology, by American Psychiatric publishing.

2. Julie left…

Thursday, 23 April 2009 11:18 am

Dear Carol – Thankyou so much for sharing this … My thoughts are with you, Eli, and your family, for all you have been through and your journey ahead. I’ve no doubt that your book will be of enormous help to others – thankyou for so generously sharing it.