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December 2010



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Archive for December 15th, 2010

mother and daughter


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.

cloud thinker


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.

bubble blowing


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.

child warrior


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.



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.

dad and daughter


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.



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.

incoming waves


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.

solitary calm

For further reading :

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

Dr Tony Attwood


Eiffel Tower


“Mother’s terror as rescue bid fails”:


“Concerns over support for carers”:


“Autism campaign launches in the South East UK”:


“UK Autism Campaign urges help for the poor”:


“Blogger turns attorney, defeats trial lawyer’s subpoena”:


“Project helps find lost children”:


“Islip to erect sign on behalf of autistic kids”:


“Ori Barto, son of world-class pianist Tzimon Barto, dies”:


Remembering Larry Berg “Life on the river”:


“Think Differently About Autism”:



“NH epidemiologist: No link between vaccine, autism”:


“Muscle weakness found in some autistic children”:



“A day in Logan’s life as an autistic student”:


“Autistic boys’ mum started her own school”:


“Mom says autistic son is not getting help at school”:


“Teachers prep for autism influx”:


“Legos can be building block to teach autistic children”:


“Asperger’s makes everyday life more challenging for school-aged kids, families”:


“Special Ed Law”:

KAPS/Kansas Advocacy and Protective Services, Inc.

COPAA: The Council of Parent Attorneys and Advocates



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.


“Autism Jobs”

Linking job seekers with vacancies in work related to autism, Aspergers and ASDs


“Job vacancies within the NAS”:


“The surprising right fit for software testing”:



“Teens and autism”:


“Living with asperger’s: owning a business”:


“Meet the human farmer’s almanac”:


“Making faith inclusive”:


“Experiences as the mother of an autistic child”:


“Autism is showing a new face”:


“The trouble with genius”:


“Knowing autism is knowing me”:


“Love and asperger’s syndrome”:


“Network a place to turn for adults with asperger’s”:


“An autistic adult crusades, adjusts”:



From the Archives ~ “Top 10 Advantages of ADD in a High-Tech Career”:


“ADHD and Sleep”:




“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.


“ADHD Pages”:


NEW “Living Without Brakes”



NAS “Get miles more out of life”:


Calling all cyclists! “Enjoy champagne and tulips with the NAS in 2008”:


“Success in the Sahara”:



“Glenn Gould”:


From the Archives “Rock’s Most Awesomely Differently Abled”:




Eric Jiani was born on September 14th 1957 in London, UK. and despite being diagnosed with Aspergers Syndrome and borderline autism he was ‘normally’ educated at the British School, Rio de Janeiro, Brazil and Downside Abbey in the UK, Eric lived in both countries, his mother being Brazilian and his father English.Eric is therefore fluent in both Portuguese and English.

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

“Ever since I was a child I have always liked inventing my own imaginary world and then expressing these worlds through models, maps or drawings. It is from this basis that my art has developed, going through different phases. I now feel I am moving ever closer to finding my place in the real world.”

Eric describes himself as a self-taught, fantasy artist and says that his work is semi-autobiographical.


“Autist Art” – Autism with an Attitude:


“Art and autism”:



“Mom uses comedy to shine light on 4 autistic sons”:


“Disabled actors are making gains in Hollywood, and shattering old stereotypes”:


“Sword and screen”:



“Arnie and His School Tools: Simple Sensory Solutions That Build Success”

Author: Jennifer Veenendall


new “Caring for Myself: A Social Skills Storybook”

Authors: Christy Gast and Jane Krug


new “Create a Reward Plan for Your Child with Asperger Syndrome”

Authors: John Smith, Jane Donlan and Bob Smith


new “The Hidden World of Autism”

Writing and Art by Children with High-Functioning Autism

Rebecca Chilvers

Foreword by Uttom Chowdhury


new “The Myriad Gifts of Asperger Syndrome”

Author: John M Ortiz


new “Understanding Nonverbal Learning Disabilities

Author: Maggie Mamen


Coming soon “Why do I have to?”

A Book for Children Who Find Themselves Frustrated by Everyday Rules

Author: Laurie Levanthal-Belfer


Coming soon “Multisensory Rooms and Environments”

Controlled Sensory Experiences for People with Profound and Multiple Disabilities

Author: Susan Fowler


Aspie Men Will Soar...

Charles Darwin is said to have been one of the many men of exceptional ability to be found on the autism spectrum. His private papers have recently been published on the internet for the first time:

“Darwin’s private papers online”:

For an earlier article mentioning Darwin, among others…”Brilliant minds linked to autism”:

Hope you enjoyed catching up with the latest. In closing, a clip of Bill Gates at his finest, sense of humour et al, (thankyou to R.S – xx):


Take Care,


French cafe

First Published Thursday, 24th April, 2008.


Blogger turns attorney, defeats trial lawyer’s subpoena


PETERBOROUGH, N.H. – When blogger and admitted information-hoarder Kathleen Seidel received a subpoena asking for nearly every piece of data associated with her website, she had two choices — get mad or get an attorney.

Trial lawyer Clifford Shoemaker of Virginia requested in March, among other things, “documents pertaining to the setup, financing, running, research and maintaining” of her site, which frequently links to articles and features blogs pertaining to Shoemaker’s main litigation area.

Not willing to dish out the dollars for defense, Seidel filed her own motion to quash the subpoena. It was granted Monday.

“I wrote that motion on a days-long surge of adrenaline and outrage,” Seidel said. “I was served the subpoena on a Wednesday afternoon and began doing my homework Thursday morning. I filed the response on Monday afternoon.”

Shoemaker specializes in litigation against vaccine makers, claiming the mercury in their products has led to autism. Others argue that autism’s symptoms become prominent around the same time a child receives his or her first vaccinations, making the connection a coincidence.

On March 24, Seidel posted an entry called “The Commerce in Causation,” chronicling some of Shoemaker’s history with such lawsuits. It showed the amount he was paid for each successful and unsuccessful suit – more than a half-million dollars in the 22 cases exhibited.

Seidel logged on the Internet to find the proper way to complete the filing. She planned to shield herself with a journalist’s right to protect his or her sources, finding the case of Claus von Bulow of particular help.

Von Bulow was accused of attempting to murder his wife in 1980 by giving her a deadly amount of insulin, but escaped the charge. Years later, his girlfriend Andrea Reynolds began compiling notes on his life.

When his late wife’s family initiated a civil suit against him and subpoenaed Reynolds’ records, she unsuccessfully argued that she planned to use the information for a book and was therefore a journalist.

“There’s some really great prose in there about how you don’t have to be affiliated with a traditional news organization to be a reporter,” Seidel said. “That’s especially relevant today, with the Internet and all the blogs. All you have to do is push a button, and it’s up there on a blog.”

Seidel started her site in 2004, then began blogging in Jan. 2005. She had previously been content to just categorize and link to the works of others, as she holds a Master’s degree in Library Science from Columbia University.

Considering all that work has led to more than 300 different topics being featured on her site, the subpoena (from the case Sykes v. Bayer Corp. in Virginia federal court) presented a tall task. She calls her site “half-library, half-soapbox.”

“(Shoemaker) wanted the documentary record, every thought I’d had for the past four years, almost anything having to do with my website,” Seidel said.

Public Citizen Litigation Group offered near-free defense for Seidel, who would have only had to pay for costs incurred and not fees. She never got a chance to take it up on its offer before filing her own response.

The subpoena made 10 separate requests, and was quashed by Magistrate Judge James Muirhead. Muirhead ordered Shoemaker to show cause why he should not be sanctioned for filing a “burdensome” subpoena.

“Hallelujah! That is good news,” Seidel said. “My privacy was preserved.”

From librarian to blogger to attorney to reporter, Seidel said she has mixed feelings about the experience.

“It wasn’t fun,” she said. “Writing that motion was not fun, but it was satisfying to speak my piece.”

Source: http://www.legalnewsline.com/news/211309-blogger-turns-attorney-defeats-trial-lawyers-subpoena

First Published Tuesday, 22nd April, 2008.


Relieved for Kathleen – who dealt with this situation as only a lady can ~ with dignity, pride and intelligence.  May ‘others’ live and learn from this.

Beach Play


(With enormous thanks and highest respect to J.C.)

First Published Saturday, 12th April, 2008.

DISCIPLINE – The term ‘discipline’ has unfortunately come to be equated with direct and aversive punishment. e.g. Angry reprimands, spanking, etc applied when a child is considered “naughty” or “badly behaved”. Discipline should in fact be the positive social education of a child(be they on the autism spectrum or otherwise) involving teaching and guiding children to behave and co-operate in a manner that allows them to manage in the world of people.

Basically every social interaction between your child and those they may meet, is an opportunity to discipline your child in a positive manner. If you attend to your child when he misbehaves, you are actually inadvertently training him to misbehave. It’s important to note when your child is behaving well(even if it’s simply sitting and waiting patiently for a few seconds). Praising them then and there, giving brief attention at those times, will increase the times they are behaving well. It is this simple.

Note that autistic/AS children do not tend to value social reinforcers such as “Great work! Well done!” unless you pair the words with some activity of interest to them(eg. “Great work! Well done! You can watch that dvd now!”)

In regard praise, the vast majority of autistic children/adults do not like or enjoy praise given in a direct or personal manner. It’s always best to reinforce through reference to task performance(what they do, not who they are). For example, “Your work is wonderful!” or “I like that painting!” Personal praise from others, though well-intentioned, is actually painful to most autistic people. Over time we can learn to tolerate personal praise, but that does not mean we like it. We tolerate it because we learn that to offend the personal feelings of neurotypicals, can have serious repurcussions. Similarly, disapprove of any unacceptable behaviour, rather than the person, if a reprimand is necessary. Focus on what was done incorrectly if a reprimand is required and appropriate.

So often parents are heard to say “All that child needs is a good thrashing” to teach him his manners. Spanking a child cannot and will not teach a child to learn his manners. In order to learn his manners, he needs to be rewarded for any and all acceptable behaviour that he displays in the company of people. Note that the issue of punishing a child(ie teaching consequences for actions/teaching children to take responsibility for their own actions) is a separate process in and of itself and different to the positive training of a child. There are certainly times when parents/carers need to control children when they are out of control and safety is an issue, but you cannot teach acceptable social behaviour through fear-based punishments. In fact, fear-based punishments(corporal punishment) actually escalate the problem behaviour of those on the spectrum by increasing their anxiety.

ball play


In order to determine whether presented behaviour is meltdown(panic attack-mode) or tantrum(simple childish manipulation behaviour), it’s important to look at any setting or background issues that may have been different. If a child is in the presence of known carers in a known place doing a known activity, is essentially comfortable and safe, but presents difficult behaviour, then that is likely childish manipulation behaviour. When feeling safe, autistic children can be very cheeky as they seek to engage.

However, if the child is in a changing or unsafe setting, he will not dare risk being manipulative or cheeky. His only interest is becoming safe and there will assuredly be no manipulative intent or purpose. When an autistic person is feeling unsafe, his only interest is becoming safe once more and he could care less about social niceties. During a meltdown, autistic people are literally fighting to stay afloat.

The following are responses to parents in regard behavioural issues.


Biting is the most dangerous pattern of problem behaviour, though spitting often gets a stronger reaction.

Biting, aside from causing tissue damage and being frightening, can lead to serious infection, hence any time the skin is broken, medical treatment is advisable. Biting will also lead to social exclusion very quickly.

Aside from obvious initial causation, often oral sensitivity and so on, the act of biting can become a powerful form of communication and social control for children. This comes about in two ways: 1. Biting leads to adults coming to the aid of a child who is bitten by another child and the biter generally receives attention in the form of an angry reprimand, but children on the spectrum cannot/do not care about the reprimand. They learn that biting another child means “Come here!” to adults. The biting is reinforced as functional communication. 2. When a child bites another person and that person backs away, then biting quickly comes to mean: “Go away!”

Never make a fuss about the biting, but immediately insist that the child who bit does some other activity. This only works when the intervening adult is absolutely neutral, i.e. Bored-looking, in presentation, AND no mention of biting occurs in the hearing of the child who did the biting. After the child who bit has been cooperative and on-task in an acceptable activity for 15-30 seconds, give him reinforcement for his acceptable behaviour. If he resists complying with the task initially, work through any avoidance behaviour, tantrums, until ultimately, he does complete the activity. Anything less, does the child a disservice.(For further information on assisting children to work through their difficulties in seeing through activities/games, refer to “Chess”).

It’s fairly common to hear of young autistic/AS children biting women on the body and breasts, but rarely men. One reason is that men(especially professionals) tend to manage young children outside of their own body space – for obvious reasons. However, a visit to any school will see women staff sitting in close physical proximity, often with arm around the back of autistic/AS children. In such close contact, reactive autistic/AS children quickly learn to target the breasts and nipples of women to make them go away. Initial biting is purely random, but the strong and consistent responding of carers trains the behaviour into forms of communication and control. It is simple operant learning.

In May, 2001, a 12 year old boy on the spectrum, in a prolonged tantrum(first day of intervention), jumped up from his chair across the other side of the table. Reaching straight out, he took the advisor’s left nipple with perfect accuracy through his shirt and began twisting it. He was used to women teaching staff, who always sat next to him, covering up and withdrawing in pain and anger. This boy had no understanding of gender difference, but had learned over many years that there are spots to target on the fronts of people-objects. The advisor remained completely neutral.  Due to the lack of reaction on the advisor’s part, the boy did not attempt the manoevre again. He also used to bite people very badly. He no longer does so – it took about 24 months to replace his problem behaviour with acceptable communication behaviour.


CLOTHES OFF(What to do when children remove their clothes at inappropriate times)

Leaving aside issues of discomfort due to tactile-sensory issues which might need to be addressed by an OT trained in sensory integration, it’s important to simply give more pleasant attention, randomly, when your child has clothes on. (Randomly, so that they cannot learn to predict and manipulate your behaviour.) In other words, give positive reinforcement, but, if you have been making an issue of your child taking clothes off, do not mention clothes specifically, but tell them how nice they look(when they are dressed) or how happy they appear, etc. (Those who have worked with children and adults who stripped off clothing will tell you that these children/adults had received significant negative attention every time they took off their clothes to the point that when people mentioned pleasantly that their clothes were on, they were immediately removed.) Sometimes go to your child to give reinforcement, other times smile or give praise from a distance. Sometimes call your child over (when they are dressed) and praise them for coming. Be subtle and discrete. Above all do not tell your child not to remove their clothes. Negative instructions are very hard for many autistic children, eg. “Don’t take off your clothes!” This is because words such as don’t, shouldn’t, mustn’t, no, etc. -  are abstract concepts and young autistic children are very concrete. They perceive “…take your clothes off!”

If your child takes their clothes off, do not try to stop them in a rush, wait a random period of time, wander casually over to them making no fuss, telling them pleasantly you will help them put their clothes on and praise them for any cooperation. Then send them off to some activity or task for which you can give them reinforcement after a few moments. Focus on clothes being on or going on. Try to avoid attention for clothes coming off or being off. That is why it is better (if safe to do so) not to rush over immediately whenever they start to undress, or they will learn to use undressing to control you. Undressing, as with so many other patterns of behaving like biting or hitting other children, breaking windows, etc. in children on the spectrum will become a communication behaviour meaning “Come here mummy!”



The perseverative behaviour in the following case involved a young boy on the spectrum repeatedly throwing rocks. He was under some stress due to renovations being carried out in his home. The importance of allowing children/adults on the spectrum to stim has been addressed in a recent thread, but this particular situation required addressing.

The only way to reduce such perseverative behaviour is to replace it with other patterns of action that are acceptable to you and meet your son’s autistic need. You must never try to stop any autistic “responding” without offering similar patterns in replacement, but under your control. Of course, the other issue is that having renovations being carried out probably increases his autism-driven behaviour patterns: he likely is trying to regain some control in the face of the disruption around him by throwing items (that in his view) do not belong in his world away or out of sight. He is probably more anxious.

If you focus on telling him off for such behaviour, there are some issues that you need to consider:

  1. If the house is in a disrupted state, then he is likely more anxious than normal and thus such perseverative/obsessive behaviour will increase.
  2. When any person is anxious, it is very hard to teach them, so any attempt to directly control or minimise such behaviour is less likely to work: anxious people make poor learners.
  3. The more you tell an autistic boy at this level “Don’t throw over the fence!” the more he will throw as he will not process “Don’t…”, “Shouldn’t…” and “Mustn’t…” Any attention given to what he is not meant to be doing will increase his action as he will only process or understand “…throw over the fence!”

Do you have a strict daily routine for him so that every minute from getting out of bed to going to bed is at your discretion? Even play choices would be under your control, eg. “You have a choice of Thomas theTank Engine or Bob the Builder dvds/tapes?” Also, is he allowed to roam the whole house or are there specific expectations about behaviour and actions in specific rooms, eg. In the living room I sit and watch videos/dvds/tv; I play with my toys in my room(not my siblings or parents generally); in the kitchen I sit at the table and eat all my meals, drinks and snacks, and so on?

I suggest that restricting access to certain places and thus limiting unacceptable actions, while offering only what you deem acceptable on your terms would be the way to go. Increase the structure in total. Part solutions always make things worse with autistic children.

Ensuring your child does not ‘activity-graze’ is also important. Bouncing repeatedly between activities, without any intervening control, to encourage him to sit in one place and follow the activity through to completion, is important.


In regard to aggression, sleep difficulties…:

Firstly, an important statement: “Effective behaviour management requires that parents control and modify their own behaviour in order to bring about changes in the behaviour of their children.”

Control is the issue – either our children are in control or we are. Our children rely on us to be in control, thus making them feel safe. In order to restore order and more appropriate behaviour, it’s important to firstly ensure that your son’s day is adequately structured so that he knows he can rely on the routine you’ve set. This will in turn lead to smoother transitions from one activity/routine to the next. You need to ensure that your responses with him are clear, calm and reassuring. It’s important that you do not raise your voice or add negative tone to an instruction when your son has not responded at the first cue – that will raise anxiety and tell your son that you are not in control which in turn leads to him becoming increasingly anxious. Allow him time to process the information and importantly do not nag him. Any change to the structure or current routine you have, will likely see a worsening of behaviour before it improves, but behaviour will calm if you maintain a calm, controlled approach. He has to test that you mean what you say and do. Praise his actions when he does as you’ve asked, without making reference to any negative behaviour.

As you have found, when you add anger to a request, your son’s behaviour will rapidly escalate, and any further negativity will simply add fuel to the fire. Adults who lose self control and display their uncontrolled anger are also easy targets for children. Your son will view your anger as a personal rejection and will be profoundly confused because at the age of 7yrs, his growing sense of Self is still founded in you and any thing that shakes his connection with you destabilises his sense of self.

Parents need to be calm and consistent in their patterns of responding. In regards smacking – smacking a child to teach him/her NOT to misbehave does not and cannot teach him/her to behave correctly. There are a very large number of autistic children(of all ages) who are regularly referred for their aggressive behaviour who have simply copied directly the management method(corporal punishment) used by their parents and eventually turn the tables on the parents when older. Certainly, some parents, particularly mothers, cannot be left alone with the grown up child(of either sex). Quite literally, what goes around comes around. An acquaintance who worked in institutions knew many who had been subject to quite severe, old-fashioned corporal punishments(as well as extreme abuse). They might not attack the people who punished them for fear of further punishment, but they frequently targeted people(staff or others) they perceived to be lower on the pecking order. They were very dangerous. Children are not born with maladaptive behaviour, they rely on parents as role models to guide them through life using positive behavioural guidelines.

Bedtime issues can be resolved by ensuring once again a calm, consistent approach by all, a firm routine in place(eg, dinner, bath, story-time, sleep time) using PECS if necessary. Note: Routine and physical exercise are known to help with sleep issues. We have an 8 year old son(as well as two adult children) and have gone through what you’re now going through). Our youngest son was prescribed melatonin for bedtime when he was 4yrs(as he had extreme difficulty sleeping), and with a really enjoyable, calm bedtime routine in place, everyone is so much calmer and happier. I wish the same for you and your family.



It helps to acknowledge that NT society and life places great emphasis on coming first. It’s something that tends to be ground into children from their earliest days so it’s little wonder that autistic children who are literal black/white thinkers learn this rule, applying it absolutely. The problem is not innate to autistics though. Being first grants prizes and advantages in life. As parents/teachers, we need to teach social control(ie your turn, my turn) in absolute terms, pushing on through barriers until there is acceptance of a more important rule: turn taking. It’s important to also ensure that other rankings receive reward/reinforcements, not just he who wins/ranks first.

There are many bad-tempered, ungracious losers found in both adults and children(take a look at some of our sportsmen/women!) but self control can be learned, though it can take years and also depends on having the capacity for insight which, in turn, depends on level of intellect. Many autistic children do not have that capacity, but should still be taught to behave in a socially correct manner.

I was very competitive in certain sports and subjects(not in an overbearing manner though), as were/are all my children(all AS), and we have learned that bettering our own ability and competing against yourself are the best “wins”.

You wrote:
“I think it’s all stemming from the uncertainty in social interaction involved with interactive game-play, with a healthy dose of his desire to control the interactions to keep them within his comfort zone.”

I agree. Control for those on the spectrum is a safety issue. Each new person and setting needs to be learned and deemed as safe in order for anxiety to abate. So far as games go, anxiety is natural due to the unpredictability of every aspect as well as the social interaction involved. We worked on this alot with our children who all greatly enjoy games nights now. They and we do thrive on time alone though and tend to excel when it comes to solitary pursuits(ie music, art, sport etc.)

To which parent responded:

Julie, can you elaborate on exactly how you worked with your children to help them enjoy game-playing? He will play games with me and only me. But I can’t get the rest of the world to change for him. I could use some specific pointers.”

I responded:
Before you can work on skills with any child, the most important factor is establishing control. Any child who asserts power over his mother/teacher will simply continue to do so unless checked to the child’s detriment. The best and most affective teaching/management strategies in the world can be applied but be next to useless without a firm but kind role model in charge of working with the child. Parents/teachers must be in charge of the boundaries of their child’s life while allowing children discretion to self manage within the boundaries. Please note that this is not personally directed at you, but would be the advice I would give to anyone first and foremost.

It’s great that your son is playing so well with you. From here, I’d introduce either a third party(be this sibling or friend), encouraging co-operative turntaking from beginning to end under your guidance. There are certain management rules of thumb that come into play here. With the introduction of any new person/experience, anxiety is likely to increase initially. Expect challenging behaviour as this will be your son’s way of testing you, ensuring that he can rely on you to maintain control in unknown territory so to speak. When you are tested(ie should your son disrupt the game in some manner) simply direct him politely and pleasantly back to gameplay, without raising your voice, maintaining a neutral tone and with no mention of any negative behaviours displayed. As I say, make no response to overt behaviour. Any direct response, no matter how well meaning, to an autistic child’s socially unacceptable behaviour will reinforce it as a functional pattern of communication behaviour to him.

If behaviour escalates, allow your son time to calm briefly and then calmly direct him back to what he is meant to be doing. The game must never be abandoned completely but followed through to ensure it is experienced from beginning to end. Without completion, so much is abandoned, not just the game itself. Valuable learning which serves to build self esteem and encourage positive social interaction is also abandoned. When your son has returned to the game and playing in an acceptable manner once more, then it’s important to praise him in an indirect manner(praise through task performance ie what he does, not who he is.) Personal praise from others, though well intentioned, is actually aversive to most autistics. Over time we learn to tolerate it, but that doesn’t mean we like it.

We do have a lot of fun now but I do remember the early days when my eldest son would storm off to his room if the game did not go his way. There’s a lot to be said for perseverence when it comes to game playing as it can set the basis for many future highly enjoyable games encounters as children grow and mature into adulthood. Many relationships are forged through game playing.

Parent responded:

“I am going to print out your response and use it for a reminder–it is exactly how I feel I (and E’s teachers, and his dad, etc.) should be interacting with E on a daily basis! I hope that’s OK with you. What a perfect little encapsulated statement. Thank you! “

tossing the dice

Much of the behaviour of autistic children/adults that is seen as a problem and is frequently targeted for “treatment”, “cure”, “correction”, is actually symptomatic of the need for structure.  If a disturbed autistic person is given the structure they need and crave, then the anxiety-driven
problem behaviour disappears.

Sydney Harbour Sunsrise


“UN declares World Autism Day”:

NAS “World Autism Awareness Day”:

“NAS Conference 2008”:

Kathleen Seidel “What a web of actual links we can weave”:

“Former employee files suit against Overland Park”:

“MMR row doctor faces GMC”:

“Longridge teenager gives co-op the buzz”:

“Living with autism in the UK”:



“Study supports theory that rise in autism is related to changes in diagnosis”:

“Virtual reality teaches autistic children street crossing”:

“Autistic children may learn from virtual peers”:

“Autism runs in families”:

“Study explores delicate issue of discussing autism”:

New Study “Encouraging preschool kids to talk to themselves”:

“Special diets and autism”:

“Premature babies”:



“Eating disorders common in ADHD girls”:

“ADD need not keep kids down”:


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.

“ADHD Pages”:

“Young ADD & ADHD People Matter”:

Simon Leggett “ADD for Adults”:

“Myths associated with ADHD”:

“Famous People Who Have Been Blessed with ADHD”:



NAS “Stars Shine for Autism – 29th April, 2008”

With Special Performance by Dame Kiri Te Kanawa:

NAS “Think Differently About Autism”

Autism also affects adults.

Most are isolated and ignored. Think. Act. Transform lives.

“Autistics don’t want to be cured”:

“Autistic children linked to same sperm donor”:

CNN manager: “Asperger’s – My life as an earthbound alien”:

“The connection between IT and Asperger’s Syndrome”:

“Soldier fights for autism care”:

“One man’s story: When an autistic child grows up”:


“Synesthesia – FAQ”:

“Rare but Real: People Who Feel, Taste and Hear Color”:



NAS “Autism Education Trust Roadshows”:

“Schools flouting admission laws”:

“Autistic child charged with biting teacher”:




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.

“Autism Jobs”:
Linking job seekers with vacancies in work related to autism, Aspergers and ASDs

NAS “Training opportunities for volunteers”:



“Running For Autism, Not Against It”:

“Streamwood man runs 50 marathons in 50 states”:

NAS “Hike the Pike and tackle Tuscany with the NAS”:



“The Musical Genius – Derek Paravacini”:



“Mickey Doolittle”

Mickey Doolittle was born in 1939, when doctors knew very little about autism. They incorrectly thought it was caused by bad parenting, particularly cold mothers they called “refrigerator moms.” He stayed at home with his parents and his two older brothers and a sister until he was six, not going to school or talking and spending his days quietly cutting out pictures from Life magazines.

Peter Myers: An exact mind”:

“Peter’s art taught us a great deal”:



“Actors for Autism”:

“The Black Balloon”:



new “The Potty Journey”

Author: Judith A Coucouvanis

new “Autism and Loss”

Author: Rachel Forrester-Jones and Sarah broadhurst

new “Autism, Discrimination and the Law”

Author: James Graham

coming soon “Born On The Wrong Planet”

Author: Erica Hammerschmidt

“Girls Under the Umbrella of Autism Spectrum Disorders: Practical Solutions for Addressing Everyday Challenges”:

Author: Lori Ernsperger, Ph D., and Danielle Wendel

“Asperger Download: A Guide To Help Teenage Males with Asperger Syndrome Trouble-Shoot Life’s Challenges”

Authors: Josie and Damian Santomauro

Hope you enjoyed the read.

In closing, I leave you with “The Song of Autism”…

The Song of Autism

by Philip Ashton

I bring you joy, delight, happiness and wonder
I bring you sorrow, sadness and pain
I am the dawn of each new day, promiseful of hope
I am sunshine, I am shadow
I am a sonata in a minor key
I am a concerto in a major key.

I entrance you, intrigue you, bewilder you
I charm you, exasperate you, amaze you
I am what in your ignorance you fear
I comfort you, console you, enlighten you
Some days all you desire I am
Some days my leaving you long for.

I am strong, I am vulnerable, I am confident, I am doubting
I am solitude — peaceful and silent, in self-value secure
I am community — solidarity, unity, strength, love
I am countless stories in creativity forged — imagination opening, knowledge expanding,
truth revealing
I am a rainbow reflected tree dappled in a forest lake
I am a mischevious spirit singing and dancing and playing with unrestrained glee.

In myriad forms I come, each one unique
I am a strange mysterious land, never to be fully explored.
With love I invite you
Accept me at least
But if you welcome me, if you befriend me
Your lives I will enrich.

September 2004

Reproduced by permission of the author

Take Care,



First Published Thursday, April 3rd, 2008.

Former employee files suit against Overland Park

By: Holly Kramer, Staff Writer

Thursday, April 3, 2008 1:19 AM CDT

Cindy Earnshaw, former Overland Park animal control officer, has filed a lawsuit against the city alleging discrimination because of her disability.
Earnshaw has Asperger syndrome, a neurological disorder that affects a person’s social interaction.
Earnshaw said she faced discrimination and bullying during her time with the Animal Control department before she resigned in April 2007.
Earnshaw said staff resented her because she did not make small talk with them.
“It’s natural for people to want to stand around and chit-chat,” Earnshaw said. “That’s not something that comes naturally to me. When I’m at work, I am there to work.”
Earnshaw started working at the department in 1999 and said the environment became increasingly hostile after she had been there a year and received positive feedback from evaluations.
“I was such a high achiever, (co-workers) actually articulated on numerous occasions that I was like that to make them look bad,” Earnshaw said. “When someone has Asperger’s, we’re focused on something and apparently that was a bad way to be.”
Earnshaw said her evaluations from the city are close to perfect.
Her duties included enforcing city animal ordinances, making sure that people and animals stayed safe, and writing reports and making court appearances.
“I was never bitten and no animal was injured by me,” Earnshaw said.
She said she asked for protection under the Americans with Disabilities Act and asked that staff attend sensitivity training. Earnshaw met Jenny Layton, a licensed master social worker, at the beginning of the training process.
Layton said the training did not help Earnshaw or the staff.
Layton said people with Asperger’s have difficulty reading body language and having reciprocal conversations.
“It’s a developmental disorder,” Layton said. “People with Asperger’s lack social savvy and some common sense. They are very literal thinkers. They can learn to have good conversations, but it’s not their natural communication mode.”
Judy Albright, who formerly worked with Earnshaw, described her as a good employee.
“Her work ethic would best be described as ‘intently focused.’ It does not matter what she is doing, Cindy has the ability to pinpoint her attention with laser-like accuracy,” Albright said. “She is habitually thorough, precise and professional. Her employee performance evaluations over the years she worked for OPPD would better detail her work ethic than I. Her personality is quiet, reserved but witty and perceptive and compassionate.”
Earnshaw received the Asperger’s diagnosis at age 36.
“It’s a new diagnosis in our country,” Layton said. “A lot of people Cindy’s age or older are hitting walls in their lives and not realizing that they might have Asperger’s.”
Layton said Earnshaw’s trials at work escalated.
“It got far out of hand,” Layton said. “Cindy had asked for the city to provide a written agenda for the meetings they had and they refused to do it.”
Earnshaw said the requests she made would not have cost the city a dime.
A roundtable discussion made matters worse, she said.
“In 2003, a major, two sergeants and other animal control officers were allowed to go around the table and say what they didn’t like about me,” Earnshaw said.
Earnshaw described being left out of the communication system when the department bought mobile phones for everyone but her.
“They all got personal Nex-Tel cell phones and used them to bypass police radio and communicate with each other and didn’t have to communicate with me,” Earnshaw said. “And that was tolerated.”
Earnshaw filed a complaint with the Equal Employment Opportunity Commission about the city’s “disregard” of the Americans with Disabilities Act.
The act states employers with 15 or more employees should provide qualified individuals with disabilities an equal opportunity to benefit from the full range of employment-related opportunities available to others.
Earnshaw said conditions did not improve and, seeing no hope from the EEOC complaint, she resigned in April 2007 and has not worked since.
“I miss my job every single day,” Earnshaw said. “It kills me that I can’t work.”
Earnshaw and Layton said they hope filing the lawsuit will send a message to the city.
“I hope Cindy is validated by the lawsuit,” Layton said. “The office hierarchy wanted to silence her, but behavior like that is unacceptable. The city needs to make changes to deal with people who have Asperger’s in the workplace.”
Earnshaw said she hopes the court finds the city discriminated against her.
“I hope it brings to light that discrimination is an issue in the workplace and there are laws in place against it,” Earnshaw said. “I hope the lawsuit brings this issue to the forefront. Though the city does have policies in place, they know that those policies don’t work for situations like mine.”
Layton said bullying can occur anywhere.
“People who don’t have disabilities are subjected to bullying,” Layton said. “Bullying in the workplace or anywhere else has a devastating effect on people. It kills people.”
Overland Park offered a statement that the EEOC issued findings of “No probable cause” regarding Earnshaw’s complaints. The statement said the city would respond “fully” to the complaint in court and the city remains “confident that when this matter is finally determined through the judicial process, its handling of this matter will be found to have been appropriate.”
No date has been set for the hearing.

Source: http://kccommunitynews.com/articles/2008/04/04/blue_valley_sun/news/doc47f3ddd8d68c3181111159.txt

First Published Wednesday, 9th April, 2008.

What a Web of actional links we can weave

It’s no longer novel when somebody becomes so interested in a topic that a Web site is devoted to it or when that site draws the occasional legal threat.

But Kathleen Seidel of Peterborough, creator of Neurodiversity.com, has moved into a whole new category.

Her four-year-old, one-woman Web site discusses the link between vaccinations and autism – or lack of a link, in her opinion. Last week, she posted a long, well-researched essay about almost two dozen autism suits, from which she said a Virginia attorney has reaped a half-million dollars in fees.

That same day, she received a subpoena from that attorney, who is representing families seeking millions in damages from Bayer Corp.

The subpoena, in U.S. District Court in the Eastern District of Virginia, demands that she turn over all financial information about the site, and well as “any and all documents . . . concerning communication” with more than 50 Web sites, scientific journals or medical boards, just about anybody in the U.S. government, and “any religious group (Muslim or otherwise).”

I left three phone messages over the past three business days with the filing attorney, Clifford Shoemaker of Vienna, Va., but had not received a response by press time.

For her part, Seidel isn’t sitting still. Using knowledge she gained from an “introduction to paralegal studies” class at a technical college, she has filed a motion to quash the subpoena. It argues, in part, that the subpoena’s purpose “is not to elicit information . . . but to aggressively communicate the suspicion that I am . . . a covert agent of the government, pharmaceutical industry or some other hidden force.”

A judge should rule in a week or two. (This motion was spotted by Telegraph court reporter Andrew Wolfe.)

Seidel has garnered vast support online, for whatever that’s worth. As the issue ricocheted around blog-o-land, more than 100 folks have commented in alarm over the prospect of legal costs descending in the wake of critical online discussions.

“The thought that somebody can crank out (subpoenas) to anybody who happens to embarrass them publicly on a blog – that’s a huge threat to freedom of speech,” said Seidel in a recent telephone interview.

As a traditional media guy, I don’t have a lot of time for most one-person blogs, which tend to circulate the same old stuff.

But Seidel’s Neurodiversity.com is a different matter.

Perhaps because of her training (she has a master’s degree in library science), Seidel has collected and organized an impressive collection of information, not through clicking on some Google links but by filing a Freedom of Information request, making calls and using Lexus-Nexus at the Keene State College library.

Neurodiversity.com is so comprehensive that, combined with her well-written posts, it has moved beyond amateur status to become an example of quality advocacy journalism.

Quality, however, is a two-edged sword; there’s a reason that newspapers keep attorneys on retainer and most blogs don’t.Adding to the legal heat is Neurodiversity’s core message: Seidel’s belief that there is no good evidence showing autism is caused by mercury or any other contaminant in vaccines.

I share that belief, although I know far less about the topic than she does.

A possible link between autism rates and the MMR (measles-mumps-rubella) vaccine was a reasonable hypothesis at one point, but several epidemiological studies have demolished it. Notably, autism rates continued to rise even after a mercury-containing preservative was removed from the vaccine.

“I strongly believe that even though there may very well be parents whose children had some vaccine reaction, they are far outnumbered by parents who have been retrospectively convinced that their kids are autistic because of some iatrogenitc, actional vaccine,” said Seidel.

(“Iatrogenic” means a disease caused by a doctor; “actional” means you can sue over it. Seidel has studied this issue long enough that jargon has entered her vocabulary.)

The 52-year-old Seidel has two teenage children, one with a diagnosis of Asperger’s syndrome, at the milder end of the spectrum for autism disorders.

She got involved in online analysis of autism partly as a result of parental outrage, from hearing it described as “mad child disease,” so she understands parents’ desire to find someone to blame for autism in their kids. But she believes this wish is being manipulated by a loose coalition of people who benefit financially from legal action against big pharmacy firms.

Seidel said the subpoena arrived at her home the same day that she posted a long, very detailed article on her blog titled “The Commerce in Causation,” which documented 22 vaccine-autism cases over the past two years in which she claims Shoemaker was an attorney, resulted in $584,000 in legal fees.

Seidel said her crusade isn’t just a desire for fair play.

There are other issues, she said. She says this ardent belief in blaming autism on vaccines results in bad medicine as well as in legitimate therapies or research being thwarted and in unproven medication being given to children as part of fringe studies.

“It’s not good for parents’ mental health, it’s not good for the state of autism science, and it’s not good for autistic people,” she said.

She also noted a peripheral problem: “There’s a very disturbing trend of parents eschewing vaccines (for their children) because they hear all of this business. I’m concerned about the possible resurgence of epidemics as a result.”

Seidel is waiting to see what the federal judge will do but she knows that the autism-vaccine debate, with its potent mix of money, lawsuits, medical uncertainty and parental concern, will not go away any time soon.

“Believe me, (autism) is a huckster’s paradise. Everybody and their brother has their way of curing autism. Has it ever happened, have you seen it in the peer-reviewed literature? No,” she said.

Science from the Sidelines appears Wednesdays in The Telegraph. David Brooks can be reached at 594-5831 or dbrooks@nashuatelegraph.com.

Source: http://www.nashuatelegraph.com/apps/pbcs.dll/article?AID=/20080409/COLUMNISTS03/933585002



Sensory Room

First Published Monday, 7th April, 2008.


It’s time to take a walk down Sensory Lane and investigate some of the more fascinating aspects of the Sensory World for those on the Spectrum.

For those who simply want to play, look no further than “Sensory World and Sensory Rooms Interactive Website”

But for those, after a little enlightenment and theory, please continue on down that lane with me…

Those on the spectrum may be hyper(over-sensitive) or hypo(under-sensitive) on any or combinations of several of the five sensory channels. Throughout childhood and into adulthood, the realization of just how differently our experiences and perceptions of the world around us was and is, compared to that of your average neurotypical, never occurred. Realistically, how could it have? We did however, manoevre, accept, respect and make allowances for whatever made us ‘feel’ uncomfortable. For some, hypersensitivity diminishes in later childhood, but for many it continues throughout their lives. For some, the effect can be quite debilitating and an Occupational Therapist(OT) may be of help. Certainly, episodes of difficult behaviour can be directly caused by sensory difficulties.

Tactile Sensitivity. Sensitivity in regard intensity of touch and in regard touching certain parts of the body can be intense. While some children on the spectrum like tight squeezy hugs, others may become rigid, flinch and pull away. In my family, hugging is most definitely on our own terms. We all stiffened and pulled away as babies, preferring not to be held. As adults, in control of the stimulus, physical contact can be much more enjoyable. As for touch, light touch is the enemy and my daughter and I have never been able to handle tickling. The forms of touch used in social greetings, affectionate gestures, can be too intense or overwhelming for some. We all complied with what was expected in terms of hugging relatives and friends upon greeting/departure, not wishing to offend, but more often than not, touch was ‘tolerated’, rather than enjoyed. Many on the spectrum do not like being touched spontaneously, without any warning or permission, but if you ask and/or warn us, then we cope better.

It should be noted that avoidance of social contact for some, may well be a physiological reaction to touch, not necessarily an avoidance of being close to or sociable with others.

Clothing-wise, my children and I strongly disliked wearing hats, even though the intense Queensland sunlight made us squint more than most, and our eyes would water profusely. We all were and still are blinded by brightness. The seams of socks and the feel of particular shoes could cause great discomfort. Denim was agony for my eldest son(who even now refuses to wear it). Those painful, scratchy clothes tags on the back of the neck were also often removed.

Some children and adults insist on having a limited wardrobe, preferring for example 100% cotton garments, or non-collared shirts only.

Occupational therapists devise Sensory Integration programmes that help reduce tactile sensitivity, incorporating massage, gentle rubbing, vibration, sometimes deep pressure and vestibular stimulation(spinning and rocking)into the programme. Temple Grandin designed a squeeze machine, lined with foam rubber that encloses almost the entire body. She found that the firm squeezing made for a soothing and relaxing desensitizing experience.

“The Torture of Touch”:

For those who crave deep pressure, weighted blankets:

Sound Sensitivity.

There are three types of noise that are exceptionally intense. The first is sudden, unexpected noise. A smoke detector or fire alarm, a car horn, the phone ringing, someone coughing, a dog barking. Then there’s high-pitched, continuous sound. This includes the noise that originates from small electric motors(kitchen, bathroom and garden equipment). Naturally, it can be very difficult for your average person to empathize with this. The intensity of the experience should never be underestimated. The third type is that of confusing, complex or multiple sounds found in shopping malls or at noisy social events, which many of us find difficult, if not impossible to tolerate.

I am extremely sensitive to the sound of the microwave beeping, the washing machine and clothes dryer’s incredibly painful beeping at cycle’s end and the even louder, piercing beeping emitted by the fridge/freezer if the door’s ajar just that moment too long. I have to attend to it immediately. I startle far more easily than most and my reaction is more intense. Notably, one of the features of acute sound sensitivity is the degree in variation in sensitivity from one day to the next. Some days, I can tolerate and enjoy loud volumes(eg. on ipod), while on other days, I can’t even bear to have soft music playing. Shutting out the world and withdrawing from intolerable noise levels can be very necessary, while others learn to tune out or switch off from certain sounds.

Balloons popping. Noisemakers at parties. The telephone ringing. The doorbell ringing. The radio. Chiming clocks. Dogs barking. School bells and fire alarms. The scraping of chairs over a classroom floor. Fireworks. Those aeroplanes. That thunder. The level of sensitivity can be quite extraordinary for some. My youngest son has long had a problem with the vacuum cleaner and the lawnmower. Headphones can certainly make the difference.

One mother of an autistic child once commented on the fact that despite her son being extremely sound sensitive, he certainly spoke very loudly. Some people on the spectrum do talk very loudly because they have a poor ability to modulate their output. Some simply do not hear their own voices as loud. Many of us like very loud music if we are in control of it, but we can become very upset at even subtle sounds when we cannot control production. In social settings, you may have to tell your family member/friend that they are talking too loudly as often they do not realise.

Being respectful of sensitivities, educating those around us and minimising or avoiding specific sounds known to be unbearably intense, will inevitably reduce anxiety. Especially if greater concentration and socialisation is desired.

Sensitivity to pain and temperature. As for feeling pain and temperature, well that gets even more interesting. When it comes to injuries, reactions to extreme heat/cold, pregnancy/labour/childbirth etc, the pain threshold can make for some interesting experiences, and in some cases, our health and safety can be at grave risk.

There are severely autistic/severely intellectually impaired people who have little or no perception of pain caused by direct impacts caused by falling from heights or out of fast moving vehicles until there is serious tissue damage. Some do not feel high temperatures from boiling water or hot surfaces such as irons or hot plates – again until tissue damage has occurred. Some do not feel terribly bothered by most injuries and just keep right on working with the task at hand. One man, when very anxious, manually extracted four lower front teeth overnight. Some do not seem to need anaesthetics when sutures are used after surgical procedures, yet these same hypo-sensitive people can also be seriously hyper-sensitive to textures of fabrics(usually fine or silky) or subtle noise or even reflected light. Others are easily over-stimulated by light reflecting off shiny surfaces(visual sensitivity). This can provoke a panic response in some due to intense anxiety and distress.

I have an extraordinarily high pain threshold it would seem. Many of us appear very stoic in response to pain that others would consider unbearable. Removing my own splinters as a child was never a bother for me, in fact I quite enjoyed it – must be the nurse in me! I refused all offers of pain relief in labour, opting for mind over matter!

Some can be oblivious to broken bones, dislocations. Ear infections(of which I had many as a child) or appendicitis, may go undetected until reaching dangerous levels. There can be no indication of significant pain and detecting it can be dificult for parents. Sometimes the signs may simply be that the child or adult appears a little unlike their usual self. There are some quite extreme cases reported, such as mentioned earlier.

We may wear summer clothes on a freezing winter’s day, warmer clothing in the summer. For many, our internal thermostats are anything but average!

Parents who are aware that their child shows minimal response to pain tend to become quite vigilant for any signs of discomfort and/or illness. This is certainly the case in my family. Teaching children to report pain wherever possible, is important.

Sensitivity to Smell. For some, specific smells can be overpowering and anxiety-inducing. Sensitivity to particular perfumes/fragrances, and aromas such as household cleaning products can be quite common for those on the spectrum. My own sensitivities have led to the development of a Pavlovian response to a particular perfume. My husband bought me two bottles of Russian perfume(I love perfumes) as a gift when we were travelling. I loved this perfume and can still remember the smell of the fragrance 9 years on. During that same trip, I became very ill and remained terribly ill for 8 months(with extreme hyperemisis), unable to speak, unable to stand without passing out, in and out of hospitals for severe dehydration. Thereafter, whenever I catch the scent of that same perfume, I feel extremely ill. Needless to say, I gave the perfume away to relatives.

In contrast, some of us experience intense euphoria over certain aromas, such as petrol, freshly cut grass, rain, coffee, roasted nuts and so on. Certain smells can certainly transport us back to our childhoods.

Sensitivity to taste and texture of food.

Many children and adults across the spectrum are described as fussy eaters. Taste and texture can have an enormous bearing on food toleration. Many can’t bear to have one type of food touching another type on their plates, and some are extremely limited in what they will eat.

In my family most of us eat a very wide variety of food(both I and my husband greatly enjoy cooking), but when younger there was without question, a definite preference for carbohydrate-rich food for us all. There are no gluten or casein intolerances in the family. Alot of the foods eaten in earlier life, are considered comforting and soothing. It goes without saying that children should not be subjected to force feeding or starvation to encourage a more varied diet. Food should be enjoyed. There are various strategies to assist the introduction and trial of new foods, especially for those concerned with a restrictive diet. Fear and avoidance of food is not uncommon. Encouraging the licking and tasting of food, rather than the chewing and swallowing allows for testing of sensory reaction. Always best to do this when relaxed or distracted. Some people maintain a very restricted diet their lives through, with little if any variation cooking and presentation-wise throughout.

Visual sensitivity. Though it’s said to be rare, some of us have extreme sensitivity to particular levels of illumination and colours. Some have a distortion of visual perception. As mentioned earlier, some of us feel ‘blinded by brightness’ and our sight becomes blurry. Sun visors or sun glasses may be essential, and allowing children and adult passengers, known to be affected, to sit away from the full glare of the sun in transport, is only kind. Some have found that Irlen lenses are beneficial.

Due to an intense perception of colours, some of us go on to make a living from our artwork. Unusual use of colour or intense colouring is a trademark of some.

Perceptual distortion can cause fear and anxiety. People, their faces, bright lights, machines, buildings, the sea, shadows(even their own), unfamiliar places, rooms, and objects may not always make the right impression. Sometimes they appear smaller than what they truly are as well. I experience this myself, and it can certainly induce fear and confusion at times.

Little is known on how to reduce visual sensitivity at this time. Identifying and avoiding what is perceived as too intense is generally the order of the day, aside from the afore-mentioned visors and glasses.

Certainly the intensity of sensitivities for many on the autism spectrum should never be underestimated.  For some, the world is undoubtedly intensely radiant, in it’s colour, sound, texture and sheer beauty.  For others, the world may simply be too loud, too bright and too overwhelming at times, on a scale the likes of which you may never be able to imagine.  For them, your respect, appreciation and accommodation for difficulties can make a world of difference.

rainbow sky

Further Information:

Temple Grandin: “My Experiences with Visual Thinking Sensory Problems and Communication Difficulties”:

Website/Books: http://www.out-of-sync-child.com/

Asperger Syndrome and Sensory Issues – Practical Solutions for Making Sense of the World”

The Out of Sync Child Has Fun”

“How Does Your Engine Run?”

“Asperger’s Syndrome – A Guide for Parents and Professionals” Author: Tony Attwood

First Published Sunday, 6th April, 2008.

News just in…

Judge Rotenberg Center Staffer Charged with Rape at Center
When an organization sees nothing wrong with routinely torturing and
otherwise abusing the most vulnerable people in our society, it
shouldn’t come as a surprise to anyone to see
<http://www.wickedlo cal.com/norton/ news/x1565513024>news reports like this:
Norton – Norton police arrested a staff member of the Judge Rotenberg
Educational Center on Shelley Road Tuesday, April 1 on charges of
rape and indecent assault and battery.
Police said Elliston Livingstone, 24, of Providence R.I., was charged
with one count of rape and one count of indecent assault and battery
on a person over 14, for an incident that occurred at the center on March 30.