www.aspie-editorial.com

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)

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.

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.

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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
3. Inability to “read others’ minds” when a security or quick decision-making action is called for
5. Consistently poor ability to anticipate the needs of work team members or others not well known to the individual
7. Problems recognizing people after having seen them only a few times, or even once
9. Adverse, consistently negative response to being interrupted or re-directed
11. Argumentativeness, challenges to direct orders, or inappropriate demands for explanations
13. Gradually or consistently lacking in “common sense”
15. More than usual avoidance of contact with others when not on duty or accomplishing joint tasks
17. Rejection by members of command who rely upon a sense of camaraderie for effective performance of difficult or complex missions
19. Dangerously high vigilance to auditory or visual stimuli  — out-of-scale startle reflex
21. Poor appreciation of danger to self; deficient sense of danger to others
23. Fails to understand when “Enough is Enough”
25. 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

AUTISM/AS AND THE EFFECTS UPON SIBLINGS

2. Julie left…

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.

HEADLINES

Abubakar Tariq Nadama “Charges dropped in Pa. Case of autistic boy given wrong drug”:
http://www.cbsnews.com/stories/2008/05/06/ap/national/main4076131.shtml

“Autistic adults to be audited”:
http://news.bbc.co.uk/1/hi/uk_politics/7389228.stm

“US measles outbreak linked to anti-vaccine parents”:
http://www.aspieweb.net/us-measles-outbreak-linked-to-anti-vaccine-parents/

“Autism bill gets nod”:
http://www.tallahassee.com/apps/pbcs.dll/article?AID=2008805030319

“Congress passes bill barring genetic discrimination”:
http://www.sciam.com/article.cfm?id=bill-bars-genetic-discrimination&sc=rss

Kathleen Seidel “Court rules for blogger in subpoena case”:
http://publications.mediapost.com/index.cfm?fuseaction=Articles.showArticleHomePage&art_aid=81378

Kathleen Seidel “A forceful voice in autism debate”:
http://www.concordmonitor.com/apps/pbcs.dll/article?AID=/20080427/FRONTPAGE/804270376

“Store drops anti-yob device in autism row”:
http://www.guardian.co.uk/business/2008/may/04/supermarkets.retail1

Melbourne, Australia “Forum for autism carers” – Saturday, 24^th May with Donna Williams:
http://www.senews.com.au/story/57710

“NAS Cymru welcomes Assembly Government Action Plan”:
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1665&a=16216

NAS “Social care services: make your voice heard”:
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=253&a=16023

“NAS Conference 2008 – 19th-20^th September, 2008”

Location: Novotel London West
http://www.autism.org.uk/nas/jsp/polopoly.jsp?d=1549

Campaign “Think Differently About Autism”:
http://www.think-differently.org.uk/

“ANI presents AUTREAT” – Monday – Friday, June 23 – 27, 2008

Location: Bradford, Pennsylvania

The Autreat Information Page:
http://ani.autistic s.org/aut08. html

This year’s presentations:
http://ani.autistic s.org/aut08prese ntations. html

Online registration form:
http://ani.autistic s.org/aut08regfo rm.php

Download a pdf registration form:
http://ani.autistic s.org/BROCHURE20 08booklet. Pdf

RESEARCH

“Schizophrenia linked to ‘rare and unique genetic glitches”:
http://www.hindu.com/thehindu/holnus/008200803281540.htm

“Mental disorders in parents linked to autism in children”:
http://www.sciencedaily.com/releases/2008/05/080505072829.htm

“Anti-psychotic drug use soars in UK children, too”:
http://www.cbc.ca/cp/health/080505/x050502A.html

Northern Ireland “NI autism treatment ‘unacceptable”:
http://www.utvinternet.ie/newsroom/indepth.asp?pt=n&id=88807

“Surprising language abilities in autistic children”:
http://www.sciencecodex.com/surprising_language_abilities_in_children_with_autism

“Autistic mannerisms reduced by sensory treatment”:
http://www.huliq.com/57892/autistic-mannerisms-reduced-sensory-treatment

“Smell linked to post traumatic stress”:
http://www.sciencealert.com.au/news/20082304-17221-2.html

EDUCATION

“Consortium created to better educate autistic students”:
http://www.charlottesvillenewsplex.tv/home/headlines/18176879.html

“Grants help ready Colchester kids for kindergarten”:
http://www.topix.net/content/trb/2008/04/grants-help-ready-colchester-kids-for-kindergarten

AUSTRALIA “School’s in as teachers strike a deal”:
http://www.theage.com.au/news/national/schools-in-as-teachers-strike-a-deal/2008/05/05/1209839553516.html

UK “Teachers ‘need better training”:
http://news.bbc.co.uk/1/hi/education/7383498.stm

Distance Learning – “Earning Online High School and Online College Degrees From Home”
http://distancelearn.about.com/

EMPLOYMENT

“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/

“AutismJobs”

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

“Job Vacancies within the NAS”:
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=170
Want to Work at NASA?

NASA is more than astronauts. We are scientists, engineers, computer programmers, personnel specialists, accountants, writers, maintenance workers and many, many other kinds of people. At the NASAJobs Web site, you can review job listings, post a resume and even apply for a NASA job online.

At NASAJobs students can find opportunities for internships, cooperative programs and summer employment.

For all the diversity of NASA’s workforce, the question, “How can I become an astronaut?” is very common. The answer depends on where you are now and where you want to go.

If you haven’t finished high school yet, former astronaut Dr. Sally K. Ride has these suggestions for you:

“The most important steps that I followed were studying math and science in school. I was always interested in physics and astronomy and chemistry, and I continued to study those subjects through high school and college on into graduate school. That’s what prepared me for being an astronaut; it actually gave me the qualifications to be selected to be an astronaut. I think the advice that I would give to any kids who want to be astronauts is to make sure that they realize that NASA is looking for people with a whole variety of backgrounds: they are looking for medical doctors, microbiologists, geologists, physicists, electrical engineers. So find something that you really like and then pursue it as far as you can and NASA is apt to be interested in that profession.”

If you’ve graduated from college or are in the military, and you’re ready to apply, here’s how

“NASA Jobs”:
http://www.nasajobs.nasa.gov/

GENERAL/HUMAN INTEREST

“Asperger’s and IT: Dark secret or open secret?”:
http://www.computerworld.com/action/article.do?command=viewArticleBasic&articleId=9072119

“Natural Learning Concepts shine the spotlight on remarkable people in “Life on the Spectrum”:
http://www.prweb.com/releases/2008/04/prweb816434.htm

“Adapting to the possibilities of life”:
http://www.npr.org/templates/story/story.php?storyId=89920017

“Scout’s play to benefit autism camp”:
http://www.dailybreeze.com/ci_9126965?IADID=Search-www.dailybreeze.com-www.dailybreeze.com

“A couple say visiting Disney World helps unlock their autistic son’s closed world”:
http://www.orlandosentinel.com/community/news/maitland/orl-autisticboy08may04,0,898399.story?page=1

“Sensory Comfort”:
http://www.sensorycomfort.com/

“Rainbow Research” (scent-free products):
http://www.rainbowresearch.com/

DYSLEXIA
http://www.bdadyslexia.org.uk/

“What Is Dyslexia?

A Book Explaining Dyslexia for Kids and Adults to Use Together”

Author: Alan M. Hultquist
http://www.jkp.com/catalogue/book.php/isbn/9781843108825

HYPERLEXIA
http://www.hyperlexia.org/

Hyperlexia – “When Babies Read”

Author: Audra Jenson
http://www.jkp.com/catalogue/index.php/cat/hyperlexia

Comprehensive Guide “Well Known People with Disabilities”:
http://www.disabled-world.com/artman/publish/article_0060.shtml

“Famous People with Asperger Syndrome or Similar Traits”:
http://www.asperger-syndrome.me.uk/people.htm

“Famous People with Asperger Syndrome”:
http://www.disabled-world.com/artman/publish/article_2086.shtml

ADD/ADHD

“American Heart Association recommends children receive heart screening before taking stimulant medications”:
http://add.about.com/b/2008/04/22/american-heart-association-recommends-children-receive-heart-screening-before-taking-stimulant-medications.htm

“Adderall abuse found at many schools”:
http://www.kcra.com/health/15981829/detail.html

“Study: To help ADHD kids, help mothers”:
http://www.portlandtribune.com/news/story.php?story_id=120907318210605000

“Teen drivers with ADHD: Realities and Risk Factors”:
http://www.schwablearning.org/articles.aspx?r=855

“ADHD and Children Who are Gifted”:
http://www.educationoasis.com/resources/Articles/adhd_children_gifted.htm

“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”:
http://www.addiss.co.uk/

SPORT

“The London Triathlon 2008 – 9^th 10^th August”:
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1667&a=16295

“Sky diving: take the plunge for the NAS”:
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1667&a=16319

“Adidas Women’s 5k Challenge – 7^th September, 2008”:
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1667&a=16296

NAS “Track our Tulip Ride fundraisers with TomTom”:
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=228&a=15228

MUSIC

“Culleoka student achieves harmony through his music”:
http://www.columbiadailyherald.com/articles/2008/05/05/lifestyles/01lstyle.txt

“Music for ASD”:
http://www.music4asd.com/

“Do Re Mi in the Key of C”

Young children love to sing. Non-verbal children on the autism spectrum often find their voice through song. So it comes as no surprise that Debra Wesemann-Siebert(mother of 4 children, 2 of whom are diagnosed as being on the autism spectrum), would use her talents and 20+ years of experience teaching piano and voice to help children on the spectrum learn and grow through music. The result is an engaging, delightful, interactive DVD geared for preschoolers. Children can sing, dance and learn to play simple sequences on their own piano while building fine motor skills, learning rhythm, melody and harmony, as well as practicing reading, matching and imitation skills. Best of all, parents do not need any music training to use the DVD with their children. Colour co-ordinated puppets introduce each segment: do, re, mi, fa, so, la, ti do. Kids voices and kid-shaped music keep children engaged, with minimal adult training. 35 mins
http://www.bravibeginnings.com/

ART

“World Autism Awareness Day – Don’t ‘Dis’ The Ability … Artworks by Individuals on the Autism Spectrum”:
http://www.medicalnewstoday.com/articles/105530.php

TEIXIERA MENDES – also known as the Brazilian Picasso

A world renowned artist and master of his craft, Brazilian born Teixeira Mendes paints exclusively for the Veronica Bird Charitable Foundation’s Ahead With Autism Art Gallery.

By selecting and adroitly recombining elements through plastic means – reshapes that which his eyes have registered, his head has pondered, and his heart has enfolded.

All his life the artist has pursued this course, making no indictment, pointing no accusing finger. Offering no apologies, shunning rationalization, always facing up to things as they are.

Drawing on its European roots, Teixeira Mendes’ painting invites the viewer to luxuriate and leads him though a catharsis, helping him shed the shackles of oppression, of barrenness, and of a man’s inability to fit into or be the master of his times.
http://www.aheadwithautism.com/viewart.html

MOVIE/ENTERTAINMENT NEWS

VIDEO William Stillman “The Soul of Autism”:
http://wcbstv.com/video/?id=111027@wcbs.dayport.com

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

“Today’s Man”:
http://www.pbs.org/independentlens/todaysman/film.html

“Navigating life with humor and bewilderment – Today’s Man”:
http://www.nytimes.com/2008/01/08/arts/television/08gott.html?ex=1357448400&en=f0d3e16629852a3a&ei=5124&partner=permalink&exprod=permalink

“Jackson Sandwich”:
http://www.filmakers.com/indivs/JacksonSandwich.htm

BIPOLAR FILM “Living the Roller-coaster”:
http://www.filmakers.com/indivs/LivingRollerCoaster.htm

In Conjunction “The Icarus Project”:
http://theicarusproject.net/

“Filmaker’s Library – Psychology”:
http://www.filmakers.com/PSYCHO.html

BOOKS

VIDEO “Autism awareness book fair”:
http://player.clipsyndicate.com/view/5895/576408?cpt=8&wpid=2057

“Autism resource library follows in teacher’s passion”:
http://www.thenorthwestern.com/apps/pbcs.dll/article?AID=/20080425/OSH/80425140/1987

“Why Bogart’s Kiss is your Kiss, His Soda your Soda”:
http://discovermagazine.com/2008/may/05-why-bogarts-kiss-is-your-kiss

“Autistics Guide To Dating”

A Book by Autistics, for Autistics and Those Who Love Them or Who Are in Love with Them

Authors: Emilia Murry Ramey and Jody John Ramey
http://www.jkp.com/catalogue/book.php/isbn/9781843108818

“Love, Sex and Long-Term Relationships”

What People With Asperger Syndrome Really Really Want

Author: Sarah Hendrickx

Foreword by Stephen M. Shore
http://www.jkp.com/catalogue/book.php/isbn/9781843106050
“Living Sensationally”

Understanding Your senses

Author: Winnie Dunn
http://www.jkp.com/catalogue/index.php/cat/autism

“Providing Practical Support for People with ASD”

Supported Living in the Community

Author: Denise Edwards
http://www.jkp.com/catalogue/book.php/isbn/9781843105770

“Asperger Syndrome and Alcohol”

Drinking to Cope?

Authors: Matthew Tinsley and Sarah Hendrickx

Foreword by Temple Grandin
http://www.jkp.com/catalogue/book.php/isbn/9781843106098

“How to Make School Make Sense”

A Parent’s Guide to Helping the Child with Asperger Syndrome

Author: Clare Lawrence

Foreword by Tony Attwood
http://www.jkp.com/catalogue/book.php/isbn/9781843106647

Outstanding Site & Accompanying Book “Asperger Solution”
http://www.aspergersolution.com/

Highly Recommended Read “Asperger Solution”

Author: Kevin Foley BA (Hons) Econ. PGCE

Having seen his son struggle with the demands of the mainstream, Kevin Foley now believes that:

“Too many children with AS suffer ‘meltdown’ as a result of being forced to operate in environments that test their immature executive, social, and emotional skills to breaking point – and beyond. We need to ‘personalise’ our children’s education so that this doesn’t happen. We need to cast a cold eye on what currently passes for ‘inclusion’ and be aware of the intrusion and exclusion that is the daily reality for many of our children in mainstream schools.”
http://www.aspergersolution.com/page8.htm

In closing, since NASA is celebrating its “50^th Anniversary of scientific and technological excellence”, now’s as good a time as any to reflect and take in a little history as well as explore a great new site!  Dr. Temple Grandin (an autistic adult) who became a successful engineer, academic and speaker, once famously called NASA a sheltered workshop for those who are autistic/AS.  She believes that people on the spectrum are the great innovators, and “if the world was left to you socialites, nothing would get done and we would still be in caves talking to each other.”

Their 50th Anniversary website is filled to the brim with featured events, image gallery, history and more…:
http://www.nasa.gov/50th/home/index.html

Professor Stephen Hawking’s Lecture Series for NASA ~ discussing the benefits provided by space exploration, scientific discovery, and aeronautics research to the economy, education, health, and the environment: http://www.nasa.gov/50th/NASA_lecture_series/hawking.html

Something for the younger members of the family ~ “Cool NASA Stuff for Kids” ~ “NASA Kids’ Club”:
http://www.nasa.gov/audience/forkids/kidsclub/flash/index.html

Hope you enjoyed the read.

Till next time,

Take Care,

Julie

Autism/AS and Irritable Bowel Syndrome(IBS)

First Published Sunday, 4th May, 2008.

The American Academy of Pediatricians reports there is no evidence to support a link between vaccine and autism or IBS. IBS tends to be triggered by stress and anxiety. It’s not difficult to understand a physical link between emotion and IBS when you consider that the bowel(as with lung and skin) develops from the same forerunner tissue in the embryo as the brain and nervous system. In regard children experiencing IBS, it’s important to be looking at what may be causing elevated levels of stress in their day(peer/teacher stressors/changes at home or school/tests etc) to pinpoint the IBS trigger.  For older teens/adults, elevated levels of stress may be down to work-related stress, friendship/relationship difficulties, financial pressures.

Despite some reports claiming IBS is more common in females than males, in actual fact, it’s just as common in both sexes. It’s often the case that people will experience a combination of mild and more severe symptoms, with flare-ups from time to time. It’s estimated that between one and three and one in five people will suffer from IBS at some point in their life.

There are four main chronic and recurring symptoms of IBS: pain, constipation and/or diarrhoea and abdominal bloating. Other symptoms may include nausea, headache, excessive wind, poor appetite and bladder problems. The exact cause is unknown, but as anxiety is the dominant emotion in autistics, stress/anxiety would be high on the list of considerations. Diet itself does not cause IBS, but spicy, very high fibre and high fat foods would all likely worsen the symptoms.

A combination of factors across all populations that may be triggers are: stress, overactivity in the gut, overactivity of nerves and muscles in the intestines, food allergy or intolerance, hormonal factors, and diet and lifestyle changes. Adults with IBS learn to watch out for foods that are bothersome, and avoid them. Exercise is important.

The most troublesome symptom of IBS is often the pain as a result of abdominal spasms. There are treatments like Buscopan IBS Relief to help relieve pain in medically confirmed IBS. It has a relaxing antispasmodic effect which works directly on the muscle on the bowel to relieve the colicky pain of cramps and spasms associated with IBS. I remember my eldest son being given an anti-spasmodic brilliant green med way back when he was 5 years(he’s now 22yrs) and extremely anxious/stressed over school, though IBS was never diagnosed. Both our boys have IBS as do other Aspie family members.

It’s important to point out that blood in the bowel is NEVER a sign of IBS. In this case, a swift visit to the Doc for further investigation is in order. This is particularly important if you think the blood is mixed with the motion.

For further information about IBS:

http://www.ibs-relief.co.uk/
http://www.ibsnetwork.org.uk/portal/
http://www.corecharity.org.uk/

Latest Research/Articles

New Guidelines Issued for Management of IBS/Irritable Bowel Syndrome Linked To Genetic Causes:
http://aspie-editorial.blog-city.com/new_guidelines_issued_for_management_of_ibs.htm

Studies Explore High Stress-Gastrointestinal Disorders Connection:
http://aspie-editorial.blog-city.com/studies_explore_high_stressgastrointestinal_disorders_conne.htm

TOILET TRAINING – A SPECTRUM GUIDE

First Published Sunday, 4th May, 2008.

While some autistic children are toilet trained without any difficulty, becoming clean and dry at an unusually early age, others are late in learning and may be very resistant to training. The general rule is not to make any fuss about children’s mistakes but to take them to the potty/bathroom regularly and especially at those times when they are most likely to need to empty their bowels or bladder. This would include upon waking after a dry night or daytime sleep, after meals and after drinks given between meals. If successful, the child should be given lots of praise and attention for successful performance and perhaps some other suitable reward(sticker, token etc) that ties in with the child’s main interests and is meaningful to him/her.

Many children on the spectrum dislike, even fear the potty or toilet. A very cold seat will be enough to worry some. The flushing may terrify children, though it may fascinate others. Resistance to change in an established routine is one of the reasons for delay in toilet training. Many will only wet or soil when wearing a nappy. Some may display excellent bowel and bladder control, remaining clean and dry for hours until a nappy is placed on them. As babies, they had learned to associate bowel and bladder function with wearing a nappy and cling to this routine after infancy has passed.

When it came time to training my three children, as well as a multitude of others in my care(special needs children included), maintaining a relaxed, calm approach complimentary to a reliable, structured routine enabled training to occur as a natural progression over time. That’s not to say that there weren’t challenges along the way, such as my youngest son hiding behind curtains or under the trampoline, having discovered yet another cosy place to release a movement. They say that boys are harder to train than girls. Our daughter(AS) was trained within 3 days as it simply “clicked” with her. She was 2 yrs of age and went directly from nappies to underwear. A musical potty worked well for our youngest son. Our sons(both AS) took substantially longer to train, but what matters is that old phrase “all in good time” as eventually, with patience and perseverance, when your child is good and ready(often with ‘gestalt’ learning) the pieces simply come together, falling perfectly into place after a period of time.

The following information includes a look at a very helpful book, some helpful toilet training sites and how to handle one of the less desirable behaviours, smearing.

BOOK: “Toilet Training for Individuals with Autism or other Developmental Issues”

http://www.amazon.com/Toilet-Training-Individuals-Autism-Developmental/dp/1932565493

Table of Contents

Ch 1 …. The Importance of Toilet Training

Ch 2 …. Determining Readiness

Ch 3 …. Developing a Toileting Routine

Ch 4 ….Dressing for the Occasion

Ch 5 …. Habit Training

Ch 6 …. Teaching Continence

Ch 7 …. Communicating the Need to Use the Toilet

Ch 8 …. When Toilet Training is Successful

Ch 9 …. Toileting in Unfamiliar Environments

Ch 10 … Nighttime Training

Ch 11 … Support Strategies

CH 12 … Common Problems (and Solutions)

Appendix

Data Collection Form

Sample Social Story

Glossary

Resources

“… once a person is beyond four years old, toilet training usually becomes a priority.” (pg. 11)

From Chapter 1

Autistic people have been reported by researchers as being the most difficult population to toilet train. Many techniques used to toilet train children are not sufficient when used to teach toileting skills to autistic persons. There are, however, strategies which have been demonstrated to be effective when teaching toileting skills.

Every individual is unique. However, there are particular characteristics associated with autism that impact behavior. These factors have a significant impact on the success of challenges presented when toilet training. To be successful in one’s training efforts, it is essential that the characteristics and needs unique to the individual be considered when planning interventions.

Characteristics to be addressed when planning intervention include:

• Communication needs

• Literal communication

• Sensory awareness

• Sensitivity to stimulation

• Preference for routine or ritual

• Motor planning difficulties

• Limited imitation

• Sequential learning

• Increased levels of anxiety

• Difficulty adjusting behaviors to fit new situations

From Chapter 3

Rather than be viewed as a single event, toileting needs to be approached as a sequenced chain of behaviors that includes all of the behaviors preceding and following elimination. Use visual cues such as picture strips showing the sequence of behaviors to complete as part of the entire toileting process.

Approach using the toilet as an entire sequence of related behaviors for the learner to complete, including:

• Follow a visual schedule for eating foods, drinking fluids and accessing the toilet.

• Enter the bathroom and close the door when appropriate.

• Undress only as necessary for using the toilet.

• Sit on the toilet, relax, and remain on the toilet until finished.

• Access toilet paper, wipe, and properly dispose of toilet paper.

• Get off the toilet, flush one time, close the commode lid, and get dressed.

• Wash and dry hands, properly dispose of towel, indicate being finished with toileting, and exit the bathroom.

• Return to check what is next on the schedule and begin that activity.

From Chapter 5 – Habit Training

One type of toilet training available is called habit training. When providing habit training, the goal is to develop bladder and bowel control by regularly accessing toileting facilities. Eliminating in the toilet becomes a learned habit by repeating the behavior in the same way over and over. This is different from the other goal of other types of toilet training. Usually the goal is teaching persons to independently access facilities when they are aware of the need to eliminate. Habit training provides a socially acceptable way to have dignity and improved personal hygiene when someone is not a god candidate for usual toilet training techniques.

Habit training may be an appropriate option to consider if:

• There is no awareness of the need to urinate or defecate.

• The person is older than six years of age and other training techniques have not been effective.

• The individual has a mental age lower than three years.

• There is no awareness or change in behavior when diapers or clothing are wet or soiled.

The most critical part of a successful habit training program is the development and consistent use of a suitable schedule. With habit training, accurately identifying times when the learner usually urinates and has bowel movements greatly affects the program’s success.

Developing and following a routine is an important part of habit training. Anytime the person is taken to the toilet, be sure to follow the entire toileting routine including visual prompts, undressing and dressing.

• Avoid asking if the person needs to use the bathroom when the schedule indicates a toileting time. Simply prompt the person that it is time to use the bathroom. Allowing the person to indicate that they do not need to eliminate should not be an option at this point. The cue for “potty” on the schedule is the signal that the toileting routine needs to begin.

• If the individual wets or soils clothing between schedules toilet times, calmly help them clean up with minimal social interaction. Do not act emotional, hostile, or upset. Do not scold, lecture, or nag. Simply help the person clean up in a dignified manner and continue with the next scheduled activity. Continue to take the person to the bathroom in accordance with the schedule, following the usual routine and making no reference to the earlier “accident.”

  

From Chapter 12

Negative Reactions to Taking Away Diapers

Occasionally, someone being toilet trained becomes upset and resists attempts to replace diapers with training pants or underwear. For individuals sensitive to the texture and pressure provided by different types of fabrics or clothing styles, this can be a significant source of discomfort. The satisfying sensations provided by the diaper may come from the tight feel at the legs and waist, the overall pressure of the diaper’s snugness against the body, or the feeling of the particular fabric against the skin.

When someone reacts negatively to having diapers replaced with training pants or underpants:

• Place diapers over the underpants and over time gradually cut away or otherwise remove small parts of the diaper, starting with the part that does not provide the greatest amount of satisfying feeling to the person.

• Have him wear underpants instead of diapers for short periods of time daily, gradually increase the number of periods in underpants, then increase the time frames.

• Use preteaching strategies and reward wearing underpants.

CASE EXAMPLE

Lauren tantrummed when Mom put underpants on her. She enjoyed the snug, thick feeling of her diapers. Mom decided to put underpants on Lauren and put her diaper on top of the underpants. Lauren did not seem to mind this. Mom slowly began fastening the diapers slightly looser each day, until some days they would fall off. This gradual change did not seem to bother Lauren. She would remove the diaper when it was too loose and became accustomed to the feel of underpants. After two weeks of baggy diapers, she would fuss if Mom tried to put a diaper on her.

Tips for Toilet Training

• Use simple, concrete language.

• Be consistent with the teaching method and use the same one everyday. If it isn’t working after a few weeks, try another method but then be consistent with it.

• Get the child’s team and family member’s on board with the toileting plan so everyone uses it consistently. Toileting occurs across many settings.

• Use visual supports throughout the toileting process to reinforce the steps. ASD children need visual supports to help process information.

• Take the “autism view” when toileting. Break steps down into a logical order so the child understands them.

• Use rewards that are truly motivating for the child and then only use them for the toileting process. Make sure they are meaningful to the child and not what a parent thinks is meaningful.

• Reward mini-steps along the way to keep motivation high.

• If the child does not know how to physically release a bowel movement, try having him blow bubbles or use a blowing-type toy (pop bottle whistle with a string that moves when you blow into it) while on the toilet to mimic the feeling of releasing a bowel movement.

• Never punish a child for accidents or slip-ups. These will occur along the way.

• Toileting is a complex process – have patience. It may take many weeks to break years of using diapers.

SMEARING

Smearing faeces generally begins by incidental action when a child, exploring his own body, finds faeces in his nappy and pulls out a sample. To the child, faeces has no real meaning, negative or positive, until he/she encounters it. If the child is on the autism spectrum and enjoys the sensation of it, then he/she might be reinforced by that sensation and over time, learn to find more faeces with which to play in the absence of other acceptable stimuli for which he/she can be reinforced and in which he/she can find enjoyment. Both children and adults on the spectrum may smear, throw and/or eat their own faeces.

At a second level, social problems arise when concerned adults make a fuss over the faeces(as well as the child’s behaviour) from a health-hygiene perspective. Depending on the response from adults, a child may be reinforced socially for faeces-play by the fact that everytime he/she plays in it, generally mother approaches. Over time, faeces play becomes a form of powerful communication meaning “Come here!” Therefore, when any child(or adult) smears faeces, parents/carers need to approach after a random period of time without any fuss and direct the child to an acceptable activity for which he can be reinforced after half a minute or so. (The same applies to deliberate urinating or vomiting and self-injurious behaviour.) As is the case with so many other behavioural issues, punishing the child in a neurotypical conventional sense, for smearing faeces, actually makes the problem worse as any attention is “good” attention to the child.

For further reading…

“The Potty Journey”Author: Judith A. Coucouvanis

http://www.asperger.net/bookstore_9001.htm

“TEACCH – Applied Structured Teaching Principles to Toilet Training”Includes examples of visual systems:

“NAS – Toilet Training”:

http://www.autism.org.uk/en-gb/living-with-autism/understanding-behaviour/toilet-training.aspx

“18 and Under – To Treat Bed-Wetting, Try Healthy Doses of Patience”:

http://www.nytimes.com/2010/01/12/health/12klas.html?ref=health

AUTISM AND SEIZURES

First Published Saturday, 3rd May, 2008.

One in four children on the autism spectrum reportedly experience seizures of one form or another. They may range from full-scale convulsions to blackouts or brief staring spells. The spectrum of symptoms can make it hard to spot seizures, which can also be diagnosed through the use of electroencephalograms which measure changes in brainwaves. Anticonvulsants can usually control seizures effectively. Some of the most common antiseizure medications include carbamazepine (Tegretol®), lamotrigine (Lamictal®), topiramate (Topamax®), and valproic acid (Depakote®). It’s important to be sure that the right anticonvulsant is selected, since some can have serious side effects.

Approximately 33% of autistic people develop seizures upon entering puberty. The exact reason for the onset of seizures is not known, but it is likely that the seizure activity may be due to hormonal changes in the body. Parents of autistic children should be aware of the possible positive and negative changes that can occur with puberty. Of particular importance is the need for parents to be cognizant of the fact that their child/teen may experience clinical or subclinical seizures which, if left untreated, can lead to deleterious effects.

Some parents have an EEG performed to determine whether their child shows any seizure activity. However, even if the EEG does not detect abnormal activity during the testing period, it should not be concluded that their child/teen does not have seizures. To increase the likelihood of detection, some are assessed with an EEG over a 24 to 48 hour period.

Often there’s a subtle change in mood/behaviour shortly prior to a seizure occurring, but it can be difficult to detect whether it’s a behavioural change or an impending seizure. Some of the medications prescribed(eg Epilum and Tegretol) have a behavioural effect as well as treating the epilepsy.

Some possible signs of subclinical seizure activity include:
· exhibiting behavior problems, such as aggression, self-injury, and severe tantrumming;
· making little or no academic gains after doing well during childhood and pre-teen years;
· and/or losing some behavioral and/or cognitive gains.

There is certainly a long standing link between seizures and autism. There are also studies that show a link between children who experienced infantile convulsions and a subsequent diagnosis of autism. My eldest son started convulsing at the age of 12 months(in his sleep). As a young mother, it was very frightening to witness. A Doctor promptly arrived at 2am and subsequent convulsions followed. In my son’s case, the convulsions were febrile and I was advised to administer 3 times the usual dosage of calpol to prevent further spasms from occurring. A spinal tap was duly performed at a Brisbane Children’s Hospital(mothers were not permitted to view the procedure understandably) and follow-up appointments were made. As is common with febrile convulsions, my son grew out of them by the age of 4yrs.

Children with Tuberous Sclerosis sometimes have both symptoms of autism and a history of infantile convulsions. Those with Landau-Kleffner Syndrome may also have symptoms of autism, on-going seizures and abnormal EEGs.

Further Reading…

Book  “Children with Seizures”
Author:  Martin L. Kutscher MD
http://www.jkp.com/catalogue/book.php/isbn/9781843108238

“Autism-Seizures”:
http://www.autismuk.com/index12.htm

“Epilepsy Action”-British Epilepsy Association
http://www.epilepsy.org.uk/

“Epilepsy Foundation – USA”:
http://www.epilepsyfoundation.org/

“Epilepsy Australia”:
http://www.epilepsyaustralia.net/

“Epilepsy.com” – In-depth information for people with epilepsy, their families, and the professionals who care for them.
http://www.epilepsy.com/

“The EEG:  ElectroencephalogramTest”: 
http://www.uihealthcare.com/topics/medicaldepartments/neurology/eegtest/index.html

“Common Questions About Epilepsy”:
http://www.uihealthcare.com/topics/medicaldepartments/neurology/epilepsyquestions/index.html

“Anticonvulsant Drug Therapy”:
http://www.uihealthcare.com/topics/medicaldepartments/neurology/anticonvulsantdrugtherapy/index.html

“Seizures Are a Scary Reality for Many”:
http://www.uihealthcare.com/topics/medicaldepartments/neurology/seizures/index.html

“Anti-Seizure Medication and Their Side Effects”:
http://www.efwp.org/programs/side_effects.shtml

Research

“Epilepsy Nearly Doubles Depression Risk”

http://aspie-editorial.blog-city.com/epilepsy_nearly_doubles_depression_risk.htm

“CBT Can Alleviate Nonepileptic Seizures”

http://aspie-editorial.blog-city.com/cbt_can_alleviate_nonepileptic_seizures.htm

“Blue-Skies Research Finds Proteins Underlying Epilepsy, Depression, Schizophrenia, Bipolar, I.D., Alzheimer’s & Huntingtons”:

http://aspie-editorial.blog-city.com/blueskies_research_finds_proteins_underlying_epilepsy_de.htm

“Epilepsy & Behavior: The Sexual Transformation Delusion”:

http://aspie-editorial.blog-city.com/epilepsy__behavior_the_sexual_transformation_delusion.htm

“Coloured Lasers May Offer A Way To Treat Epilepsy”:

http://aspie-editorial.blog-city.com/coloured_lasers_may_offer_a_way_to_treat_epilepsy.htm

“Dostoevsky Mice Cured of Epilepsy”:

http://aspie-editorial.blog-city.com/dostoevsky_mice_cured_of_epilepsy.htm

“Comparative Effectiveness Trial Leads To Evidence-Based Care For Childhood Epilepsy”:

http://aspie-editorial.blog-city.com/comparative_effectiveness_trial_leads_to_evidencebased_care.htm

Articles

“Autism & Seizures: A Brief Overview”:
http://aspie-editorial.blog-city.com/autism__seizures_a_brief_overview.htm

“The Voices of Epilepsy”
http://well.blogs.nytimes.com/2009/02/12/the-voices-of-epilepsy/

Seizures “Apprentice Star Katie Hopkins: Why I Kept Sandhurst In The Dark About My Epilepsy”

http://aspie-editorial.blog-city.com/seizures_apprentice_star_katie_hopkins_why_i_kept_sandhurs.htm

Tuberous Sclerosis & Seizures “Reigate Boy, 4, On Life-Changing Ketogenic Diet”

http://aspie-editorial.blog-city.com/tuberous_sclerosis__seizures_reigate_boy_4_on_lifechang.htm

“Epilepsy: Text Reminder To Take Epilepsy Tablets”:

http://aspie-editorial.blog-city.com/epilepsy_text_reminder_to_take_epilepsy_tablets.htm

“BBC: Dangerous Myths About Epilepsy”:

http://aspie-editorial.blog-city.com/bbc_dangerous_myths_about_epilepsy.htm

“From Times Past- Gladiator’s Blood As A Cure For Epilepsy”:

http://aspie-editorial.blog-city.com/from_times_past_gladiators_blood_as_a_cure_for_epilepsy.htm

“National Epilepsy Awareness Month: Autism & Epilepsy – A Missed Connection, Causes & Descriptions & More”:

http://aspie-editorial.blog-city.com/national_epilepsy_awareness_month_autism__epilepsy__a_mis.htm

2. KetoSiska left…

My son had problems with seizures, and after trying different approches, we have been suggested to try out the ketogenic type of nutrition, and I can say that the results are very satisfying.

THYROID DYSFUNCTION & AUTISM

First Published Saturday, 3rd May, 2008.

I wrote the following piece a couple of years ago when the following questions were posed within the community. Another acquaintance has recently been diagnosed with Graves Disease, so it appears a good time to revisit older work. The information remains valid, and I hope, perhaps useful to others.

Parent asked:

“I’ve just been told that there’s a link between thyroid problems and autism. Do you have any literature on this? Is it true? I have never heard of this before and hope you can enlighten me. I have just been diagnosed with “Graves Disease” which is an advancement of over active thyroid.”

My response:
The possibility of thyroid dysfunction among the autistic population has been considered and studied. Despite investigations, no abnormalities could be demonstrated. The following is an excerpt from one study undertaken by Cohen DJ, Young JG, Lowe TL & Harcherik D.:

Thyroid Hormone in Autistic Children

Thyroid hormone plays an important role in the pre and postnatal development & function of the central nervous system. Disturbances in thyroid regulation have been hypothesized in childhood autism. We evaluated blood indices of thyroid function, including serum thyroxine, triiodothyronine, and thyroid-stimulating hormone, in a large number of autistic children. No differences were found between autistic and NT children.

However, immunological studies of the autistic population have revealed features also found in those with autoimmune diseases. Autoimmune diseases, including Grave’s thyroid disease, rheumatoid arthritis, and insulin-dependant diabetes, show some genetic predisposition. Similarly, autism is higher among identical twins than in the usual population.

There is a high prevalence(1 in 4000 births) of congenital hypothyroidism, the most common in pediatric med. Naturally, it may be included as part of newborn screening. If undetected it can lead to deafness or mental retardation. Because of the central role of thyroid hormones in brain development in the fetus & neonate, and in growth, what’s known as hypothyroxinemia in the first years of life has profound and irreversible consequences. Early detection and treatment usually allows a normal life for the child in question.

The following are interesting links for Newborn screening and Hypothyroidism in infants and children.
(*note condition profiles):
http://www.newbornscreening.com/
http://www.thyroid-info.com/articles/hypokids.htm

Additional info. On Graves…No single gene causes Graves. It’s thought to be triggered by both genetics and environmental factors, such as stress. Heredity along with other characteristics seem to play a role in determining susceptibility. Studies show for example, that if one identical twin contracts Graves, there’s a 20% likelihood of the other twin contracting it. Women are more likely than men to develop it. As many as 1 in 8 women have a thyroid condition. Smokers with Graves are more likely to develop eye problems than non smokers.

What’s important to note is that most autoimmune diseases such as Graves, are associated with several sequence variants. For example, the link between celiac disease and thyroid disease is well established. It’s been shown in studies that the prevalence of celiac disease in patients with autoimmune thyroid disease is 4-15 times greater than in the general population. About 30% of subjects with Grave’s have a member of the immediate family who has also had an autoimmune condition.

There is an autism/thyroid internet based group for brainstorming and support purposes:
http://health.groups.yahoo.com/group/Autism-Thyroid/

Further information…

Treatment is more complex for overactive than underactive. A scan will determine the type(be it Grave’s, thyroid nodules or the self-limiting form-subacute). There are three main treatments to choose from. Betablockers are commonly prescribed. Propranolol tablets are more frequently used. Thyroxine tablets may be prescribed to balance the anti-thyroid meds.

Symptoms tend to improve quite rapidly. 1 patient in 50 has side effects on anti-thyroid meds(mild skin rash or joint pains). Getting the dose right can be tricky. These meds can make thyroid activity swing the other way, running too slowly. If you’re given radioactive iodine, your neck may feel a little sore in the first few days(the small amount of radioactivity used has been shown not to cause harm).

Thyroid function should be checked via blood test every 12 months for the rest of your life. Prominence and discomfort of eyes, even if not present at the time of diagnosis, can occasionally occur during or after treatment. Your Doc should be informed if your eye sight is affected in any way.

Risk of relapse is between 50 & 80% over a 10 year period. Best to avoid iodine, along with a number of other foods and drugs. The condition can be triggered by dietary additives or drugs and certainly from interaction between certain meds.

For further reading…
Book:”How to cope successfully with thyroid problems”:
http://www.mypharmacy.co.uk/health_books/books/h/how_to_cope_successfully_with_thyroid_problems.htm

“Basic Causes of Thryoid Dysfunction”:
http://www.suite101.com/article.cfm/hypothyroidism/109402

“Thyroid Research – Thyroid information from the past and present…for the future”

The aim of the site is to put extracts from thyroid-related medical research online and to trace the development of diagnosis and treatment. Patients will find it useful for an in depth exploration of their conditions. Doctors and medical students will discover a wealth of information, much of it previously not available except from specialist libraries with restricted access. Medical historians will be saved long trips to libraries and can obtain articles dating back more than a century.
http://www.thyroidhistory.net/

Related Articles

NYTimes  “Hypothyroidism – When to Treat a Sluggish Thyroid”

http://health.nytimes.com/ref/health/healthguide/esn-hypothyroidism-ess.html?ref=health

First Published Thursday, 1st May, 2008.

Fwd:

Hello all,

As you can see below, the IACC will be holding its May meeting in two weeks.
ASAN is organizing a delegation of self-advocates, parents, professionals
and others to give public comment in support of quality of life oriented
research and neurodiversity and against offensive language and eugenics. If
anyone is interested, please contact us at info@autisticadvoca cy.org. Thank
you and I look forward to hearing from you.
Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
http://www.autistic advocacy. org
732.763.5530

A meeting of the Interagency Autism Coordinating Committee [under the
Combating Autism Act of 2006 (P.L. 109-416)] will take place on Monday, May
12, 2008 from 9:00 a.m. to 4:00 p.m. at the Ronald Reagan Building and
International Trade Center, Rotunda Room, 1300 Pennsylvania Avenue, NW,
Washington, DC 20004. The meeting will be open to the public, with
attendance limited to space available. Individuals who plan to attend and
need special assistance, such as sign language interpretation or other
reasonable accommodations, should indicate these needs when registering for
the meeting. The registration website can be found at the link below:
https://guest. cvent.com/ EVENTS/Register/ IdentityConfirma tion.aspx? e=a2817fac- 3c5d-4094- bdcb-194f8c9f2de o
The agenda for this meeting will be posted soon. To view the agenda once it
is posted, or for more information on the Interagency Autism Coordinating
Committee, please see the link below:
http://www.nimh. nih.gov/research -funding/ scientific- meetings/ recurring- meetings/ iacc/index. shtml

BEHAVIOUR MANAGEMENT – PART 2

First Published Tuesday, 29th April, 2008.

The ultimate objective when raising children, is to teach/enable them to self-manage and take responsibility for their own behaviour in the world at large. The most difficult task for parents who often struggle to interpret the meaning of their autistic child’s behaviour, is often in regard controlling and modifying their own behavIour in order to bring about change in the behaviour of their children.

Parents may find themselves disappointed in their child’s behaviour, but children must make mistakes in order to learn. It’s terribly important that we do not take away from children, the natural consequences of their own behaviour. How else can they learn, but by being allowed the dignity to experience those consequences? When adults do not allow children to experience natural consequences, they actually teach them that the rules of nature and society are not relevant to them.

In the following paragraphs, we’ll take a look at a number of challenging behaviours/scenarios in an endeavour to better understand and solve dilemmas.

Coping with change remains an ongoing issue for most autistic people throughout their lives. Any autistic person who has achieved any degree of success in the world at large, has had to overcome their anxiety to a degree and learn to cope.

Basically, if an autistic child, anxious due to the effects of change, is never exposed to change, then how will he ever learn to manage his anxiety and cope with change? You cannot bring about change in any person without some stress and for autistic people it’s the same. If a child’s comfort zone is not stretched, he will become increasingly intolerant of change. Older and stronger adolescents and adults do not necessarily become more flexible and accepting of change upon maturation. In fact, the opposite tends to be the case. It’s easy to let an anxious autistic child off the hook when he’s upset and to mollycoddle him, but such misplaced compassion is the ultimate handicap. Many adolescents on the spectrum who have been ‘mothered’ all through their school lives, receive a real shock when they enter the adult world and are expected to be relatively independent. Some special school teachers have expressed the view that they consider their objective is to give young children a wonderful fun time at school. Is it not better to consider that children attend school to be prepared for life outside of school? A child who is essentially ‘babysat’ in school, is done a huge disservice in both the short and long-term.

The primary treatment for anxiety is systematic and structured routine in which autistic children learn and practise all necessary age-appropriate tasks they can, to the highest level they can. If you baby young autistics and continue to do so, irrespective of their age, then a dependent 2 year old they likely shall remain. Many autistic people are of the firm belief that had they been born ten years ago, with a diagnosis obtained in late childhood perhaps, that they would not have achieved the level of success they have, as the expectation on them to achieve and behave in relation to the usual or NT standard, would not be there.

ANSWERING BACK

Essentially, answering back only works for a child if adults buy into it, via response and anger. Adult anger is the child’s reinforcer. Remaining controlled, ignore any back-chat, asking him/her what they are supposed to be doing in a softer voice. Repeat the question once or twice in response to any further back-chat(do not nag), then move away and ignore them completely until they carry out whatever duty was assigned. If the task has not been carried out the next time you make contact with the child, then again ask “What are you meant to be doing?” Time should not be an issue, only calm repetition. He/she may become quite irritated at your question, perhaps calling you names(ignore this), but such behaviour is actually a good indicator that you are gaining control. Remember, backchatting is meant to cause you to become angry and lose self-control. Usually, it’s meant to cause you to forget what you want your child to do or distract you from some issue. It’s usually simple manipulation behaviour that all children try/test you with at some stage.

Importantly, let us never forget that developmental disability or difference must never be allowed as an excuse for a lack of manners. Nor is it a license to behave irresponsibly.

WHINGING

Whinging/whining behaviour is one of the four patterns of social control/avoidance behaviours used by all people. The motivation of neurotypical children will tend to be social-personal, whereas for autistic children, it will be purely functional or instrumental in their attitude.

The other three patterns of behaviour are:

1. Direct confronting tantrums.

2. Planned ignoring: I can’t see/hear you, therefore I don’t have to respond.

3. Cute ingratiating behaviour to distract from some unacceptable action or to avoid doing some required task.

The standard response to such avoidance/distractor behaviour is to ask the child what they are meant to be doing. Never talk about the whining behaviour for that would reinforce it, which in turn effectively draws and distracts you from your agenda onto theirs. Whenever the child whinges, pleasantly ask them whether they have done the task. Regardless of tantrums, the assigned task never goes away, even it goes into the next day. Once your child learns that you do not give in, he/she will stop trying. Whinging is simply just nagging behaviour and its purpose is to make adults uncomfortable so they may give up and yield to their child to reduce their own discomfort. However, to yield to nagging/whining is to negatively reinforce whining/nagging as an effective form of social/communication that your child will use again in the future.

TV ADDICT

Every autistic person from low to high functioning requires stable structure to cope and feel safe. If it is not given to us, we make our own. A parent once wrote that their child wanted to watch videos all day long and asked what could be done to curb this. After a video finished, the child would walk around the house, reciting the same video out loud repeatedly.

Watching an endless stream of videos is likely the symptom of insufficient structure linking the parts of the day from beginning to end. The child was rehearsing the videos out loud while roaming the house, in other words, giving himself the structure through self-rehearsal, but it is not a real environment in which he is living. It is a TV environment. Very many autistic people with ID do not understand that what is on TV is not real.

A young child is in no position to establish a structure that will be adaptive for life and that will also fit in with the needs of his family. Either you give him a totally structured day in substitute for the video structure he has found or he will continue watching videos and, in a sense, live in the world of videos he learns by rote. This is why some children like to watch the credits on videos. Their need for structure is so great that the entertainment content of the video is not sufficient, but the patterns of the credits are discrete and tight. It’s best to develop a timetable of activities of your choice that runs through the day in small steps. It can be set up so he can communicate and make choices based on your perception of what he and the rest of the family needs. Parents must be in control, not the TV/video player.

If a child’s learning is not based on systematic practice in a structured manner so that information learned is stored in the brain along with similar information, then the information is not useful. Though learning occurs all the time, the problem in the scenario of a child watching TV most of the time(without being given coherent structure by parents), essentially means that the learning is randomly stored or associated in the brain, and may be enlikened to a jigsaw after you’ve put it back into its box, or to a library, but only where books are stored randomly and not in alphabetical order. There are autistic children, adolescents and adults with very high IQ s who are unable to carry a conversation or speak sensibly due to the chaotic lives they are leading or have led up to this point. They live in a fragmented fantasy world in which they are in total control. They may well have a tremendous vocabulary and talk incessantly, but their speech is meaningless and lacking sense. They are often anxious and their comprehension limited. A life without structure coupled with chaotic experiences leads to chaotic learning and dysfunction.

It’s best to give children structure in the form of a detailed daily routine, being prepared to use TV as reinforcement for positive behaviour(if desired and at your discretion), as well as ensuring that you as a parent/carer are in charge of everything in your house, instead of the TV.

For many autistic people, particularly those who are very young and those with intellectual impairments, the world is discontinuous and fragmented in both dimensions – time and space. The world essentially “happens” to such children/adults and is unpredictable and frightening. In their efforts to prevent change or control situations, some have even been known to “attempt” to make time go in reverse or happen faster. They can only understand the world as discrete and separate settings.

Without having developed a sense of Self(all encompassing), different people become ‘learned’ in different settings and remain in effect, referenced to those settings. In this case, the child/adult has essentially developed a separate sense of self in each setting with each person, but has not been able to join all the settings and people together conceptually so that he can understand that he can be both a son to his mother, a grandson to his grandmother, a student in school to his teacher etc. In essence, this child/adult cannot reconcile him/herself as having more than one social role or face at a time. Many highly competent autistic/AS adults can only function in a few social settings and feel safe, without disintegration. A fragile sense of Self inevitably lends itself to anxiety and panic, even terror. Autistic people are referenced to people/objects, settings and structure. We require that these be safe and predictable with clear rules. Anything less sees a rise in anxiety and our sense of self rapidly disintegrates. This is why structure and consistent rules of behaviour and communication styles across all settings are so critical to us and our sense of Self. We are only stable if the specific settings in which we operate are consistent and stable.

Some children may require scripted responses for daily routines in order to understand that things are more the same than different. Some may have difficulty with extended family members coming into their home environment as they are not seen as ‘belonging’ to the child’s home environment, while the child is perfectly content and secure visiting the grandparent, aunt etc in that person’s ‘learned’ home environment. The resolution of such a predicament is that the extended family member needs to continue coming to the child’s home environment(making the visits very brief at first), only leaving on their and the parents own terms, no matter what.

Similarly, many young children on the spectrum have difficulty defining themselves as ‘student at school’ when adjusting from the home environment to a new school. In order to cope, they need to ‘learn’ the new school, staff and routine, overcoming their anxiety which is no easy feat. It often makes things more difficult if teachers bring the parent to school by mentioning “mummy’ or ‘daddy’ while the child is still adjusting to the process of defining himself as a school student in the new setting. Some children can become quite upset if the parent who would not normally be the one to pick up the child at the end of the day, enters the school setting. It can be unsettling and difficult for children on the spectrum to have either parent in the school setting at all, as opposed to the home environment where they are seen to belong.

Similarly, some children have enormous difficulty seeing their mother/father or significant others dressed in uniforms or clothes outside of what is seen to be the norm in specific settings for that particular child. A parent can in effect be seen as two separate people and the child may have a separate “Self” for each version of the parent/other involved. Only when the child understands the continuity of the world and people/objects in it, will he/she develop a sense of Self that is multi-faceted. Only then will it be understood that a person can have different characteristics in different settings, but still be the same person.

Unfortunately there is no easy way to assist a young child on the spectrum in understanding that the world is continuous, other than provide them with structured and stable activities hand in hand with a standard communication system across all settings. Experience and intellect will be the determining factors in regard how successful the child will be in understanding the world. The higher the intellect, the greater the chance of success,but only if coupled with structured and consistent rules and routines.

There’s alot to be mastered in this life we are given. As painful as it may be to watch, autistic people have much that must be mastered by themselves and themselves alone. Above all else, we must learn to master our constant anxiety and learn self-control. Some do, others do not.

SELF INJURIOUS BEHAVIOUR

In the long-term, self-injurious behaviour develops incidentally/accidentally as a result of repeated patterns of responding to over-stressed children as they seek to escape from that stress. So, if and when for example, a child bangs his head on a window and finds that teaching staff respond consistently in a specific way, possibly removing him from the stressful situation for safety/first aide reasons, he will gradually learn that banging his head is a wonderful and effective form of communication that forces staff to release him from the stress. If the child is non-verbal, the situation is compounded further by his inability to communicate directly. In this case, it’s important to establish what it was that overstimulated the child. All children are meant to be under some structured and planned stress in schools and expected to adapt to that stress, in other words, to learn. It’s when stresses are excessive in intensity, duration or both and staff in busy classrooms fail to read the subtle signs of initial anxiety, that problem behaviour develops. Young autistic/AS children have neither the insight or communication to state “I’m anxious!”. Staff generally only realise there’s a problem for the over-stressed child when he/she explodes and hits, bites or runs etc. Invariably, the child is labelled “aggressive” and behaviour management is sought to “fix” the child. In reality, it is the awareness of staff in reading subtle indicators of anxiety, that must be trained.

With regard to hand biting, head-banging and other patterns of self-harm behaviour, the other issue is that there is the possibility that the child may start to stimulate the release of endorphins in the brain via the physical impact, producing a pleasant sensation.

It’s important to ascertain the background to any outbursts(head-banging, biting etc) that are indicative of stress. Awareness of the subtle signs of building stress(be it fidgeting, laying or banging head on desk, swearing etc) need to be recognized and removal to a calming room or quieter area/activity, before the explosion occurs is key. Note that taking the child to a calmer area/room only when he explodes, only reinforces explosive escape behaviour as escape behaviour.

Ultimately, it’s all about clear communication between autistic/AS child and teachers. The problem is that most teachers cannot speak or understand autistic communication through behaviour, even in special schools.

MANAGING MELTDOWNS

It’s important to recognize that anger is not a universal feature of autism/AS. There are many on the spectrum who seem almost devoid of anger, even under intense provocation. Those who fall under this umbrella, tend to be far more vulnerable to physical abuse and exploitation.

Stress can manifest itself in different ways for those on the spectrum. Some internalise their feelings, becoming withdrawn and depressed, even ill. Others may react by becoming increasingly anxious, yet managing to maintain self control. Others seemingly erupt out of the blue(be aware that spontaneous and unpredicatble episodes may be related to neuorological factors, especially complex partial seizures(Baron-Cohen 1988). But for some, the brewing storm turns to tremendous rage and both the meltdownee and those present can be left feeling quite traumatized, exhausted, even confused after the event. While in a blind fury, autistic/AS children and adults may lack sufficient empathy and self control to moderate the degree of injury/damage.

There are many strategies designed to help children understand and express their anger and other emotions in appropriate ways, and children can learn ‘self control” over time. Music can be a great de-stresser as can vigorous exercise. Channelling aggression into constructive activities and teaching relaxation techniques designed to remove angry thoughts may also be helpful. Sometimes focusing on the cause can precipitate more anger.

Daniel Woodhouse wrote:

My Greatest Fear is Myself

My greatest fear is myself.

Control is not absolute: a constant struggle to maintain

it drains my strength.

I am always tired: I never get enough sleep.

Events beyond my control happen around me: I do

things that scare me. If I’m confused or angry or tired,

I slip up and my body takes over.

Watching your life like a void is scary. It takes an

effort of will to take control again and not just let it happen.

I’m afraid of what I feel. Emotion weakens my control,

making its grip easier to break.

When I think, I sometimes think of letting go, just

letting it all slip away. It hurts fighting all the time.

I just want peace and rest.

As Daniel so clearly expressed in his poem, our tolerance decreases as we fatigue. This is another reason to maintain the regularity of structure: routines, rules etc. When we are in a routine, we can relax a little and function on auto-pilot for a bit. Otherwise, we are always hyper-vigilant, watching and checking everything and everybody, and then trying to sort out meanings. When a child is confused, anxious, angry to the point of meltdown, their only concern is that you make them feel safe once more.

The escalation cycle can be smoothly diffused if managed carefully and calmly. If the signs of ensuing meltdown are missed and a rage has erupted, safety is paramount. Remain calm, maintaining confidence and control(your child will sense if you are not in control). Remove people to safety. Do not add fuel to the fire by raising your voice, adding angry or negative tone – think ’emotionally neutral’. Provided child/adult is in no immediate danger, do not seek to touch or engage/stimulate them further. Allow them time and solitude to work through the storm, observing covertly from a distance. Allow them to come to you when they are calm once more. Provide a known, calming activity to restore stability. Do not mention the storm. The child/adult who experiences meltdown has in effect experienced a total disintegration of their sense of “Self”. Their sense of safety and security is regained once more through engaging in known, calming activities and familiar routine.(Please refer to Behaviour Management Part 1 for clearer understanding and explanation of genuine meltdown as opposed to childish tantrum behaviour).

In closing, each and every child that enters this world is unique, complex and so very vulnerable.  They are a blessing and a gift.  Love and nurture, care for and guide them.  Should you require support, please don’t hesitate to seek it.  They depend on you.  When the going gets tough, just take it one day at a time.  Take good care of yourself and your children – the best things in life truly are free.

For further reading :

“How to manage when someone on the autism spectrum is experiencing a meltdown”

Dr Tony Attwood

http://www.mindsandhearts.net/resources.html