29 Marbles

I started a draft of this post several months ago, but just couldn’t quite get my thoughts together on exactly what I wanted to say. This morning I came across Is Asperger’s syndrome/High-Functioning Autism necessarily a disability?, presented by Simon Baron-Cohen in January 2000, which presents the case for viewing AS/HFA as a difference, not as a disability

Here is the abstract [emphasis is mine]:

This article considers whether Asperger Syndrome (AS) or high-functioning autism (HFA) necessarily lead to disability or whether AS/HFA simply lead to ‘difference’. It concludes that the term ‘difference’ in relation to AS/HFA is a more neutral, value-free, and fairer description than terms such as ‘impairment’, ‘deficiency’ or ‘disability’; that the term ‘disability’ only applies to the lower functioning cases of autism; but that the term ‘disability’ may need to be retained for AS/HFA as long as the legal framework only provides financial and other support for individuals with a disability. Two models are summarized which attempt to define in what way individuals with AS/HFA are ‘different’: the central coherence model, and the folk psychology-folk physics model. The challenge for research is to test the value of such models and to precisely characterise the differences in cognitive style.

We have grown familiar with the idea that autism is a ‘psychiatric condition’, a ‘disorder’, a ‘disability’ or a ‘handicap’. Ever since Kanner’s description of the ‘aloneness’ of these children , psychiatry has labelled and categorised them as abnormal, ill, and deficient. Through the changing definitions of autism enshrined in successive editions of both DSM (Diagnostic and Statistical Manual, published by the American Psychiatric Association) or ICD (International Classification of Diseases, published by the World Health Organisation), we have had a single view of autism thrust upon us: an essentially negative view in which children or adults with autism are characterised as ‘impaired’ .

This article challenges the received view through a subtle but important shift of emphasis. Rather than conceiving of autism as a deficiency, it instead considers if autism might be better characterised as a different cognitive style. This important idea can be traced to Uta Frith’s book , and has been recently discussed in relation to ‘central coherence’ theory , but deserves a fuller discussion because of the massive implications of this shift of emphasis. Using the term ‘different’ rather than ‘deficient’ may seem unimportant (after all, both words begin with ‘d’, end in ‘t’ and have 7 letters in between). But this small shift could mean the difference between whether the diagnosis of autism is received as a family tragedy, akin to being told that the child has some other severe, life-long illness like diabetes or haemophilia, or whether the diagnosis of autism is received as interesting information, akin to being told that the child is right or left-handed. In this millennium special issue of Development and Psychopathology, the intention is to highlight this as an issue for the agenda.

And the summary:

In a world where individuals are all expected to be social, people with AS/HFA are seen as disabled. The implication is that if environmental expectations change, or in a different environment, they may not necessarily be seen as disabled. As we have known in relation to other conditions, concepts of disability and handicap are relative to particular environments, both cultural and biological . It may be time to extend this way of thinking to the field of AS/HFA. We could imagine, for example, people with AS/HFA might not necessarily be disabled in an environment in which they can exert greater control of events. The social world is very hard to control, whilst the technological world of machines is in principle highly controllable. Equally, people with AS/HFA might not necessarily be disabled in an environment in which an exact mind, attracted to detecting small details, is an advantage. In the social world there is no great benefit to such a precise eye for detail, but in the world of maths, computing, cataloguing, music, linguistics, craft, engineering or science, such an eye for detail can lead to success rather than disability. In the world of business, for example, a mathematical bent for estimating risk and profit, together with a relative lack of concern for the emotional states of one’s employees or rivals, can mean unbounded opportunities.

It is hoped that this article, at the dawn of the new millennium, will open the debate towards identifying if there are any arguments for necessarily viewing AS/HFA as disabilities. In this article, none are found to apply persuasively to AS/HFA, even if they may apply to the ‘lower-functioning’ cases. In contrast, the arguments in favour of viewing AS/HFA as a ‘difference’ are more compatible with the ‘continuum’ notion, and may be morally more defensible. The sole reason for retaining the term disability in relation to AS/HFA may be to ensure access to provision; it may be the legal system that needs revision, so that a child whose autistic ‘difference’ leads them to have special needs, will still receive special support.

I encourage everyone to read the full article.

tagged as: Autism, Asperger’s Syndrome, Neurodiversity, Simon Baron-Cohen

Sometimes our kids surprise us. We try and try and try to get them to do something, understand something, say something. They go for a long time, apparently ignoring (avoiding?) all of our best attempts. Then, all of a sudden, when we aren’t really looking (or when we’ve kind of given up), the do it, understand it, say it.

At those moments we feel good, not just for our kids and their accomplishments but for ourselves. Sometimes it is hard to put in the long hours, day after day, never quite knowing if it will pay off or not. This is especially true for the parents of autistic kids. But what can you do?

Here is a quote from George Leonard’s The Way of Aikido that struck a chord with me as I’ve been thinking about parenting and autism.

What we call “mastery” can be defined as that mysterious process through which what is at first difficult or even impossible becomes easy and pleasurable through diligent, patient, long-term practice.

Most learning occurs while we are on the plateau, when it seems we are making no progress at all. The spurt upward towards mastery merely marks the moment when the results of your training “clicks in.”

To learn anything significant…you must be willing t spend most of your time on the plateau. [T]o join the on the path of mastery, it’s best to love the plateau, to take delight in regular practice not just for the extrinsic rewards it brings, but for its own sake.

Another way of looking at it comes from a saying I heard a while back, but can’t remember where:

A truly happy person enjoys the scenery on a detour

How’s the scenery on your detour?

tagged as: Autism, Mastery, Aikido, Parenting

From the article Web site debuts to help disabled make transition:

While in public school, students with disabilities have individual education plans designed by parents, their class- room teachers and professional teams that include a psychologist. The plan is renewed annually, and the final plan is supposed to include a transition plan.

But the shift after school still is a jolt to many….

‘… the reality is, you have to take the initiative,’ Lund said. ‘You have to understand it on your own. This [Web site] will be one more tool.’

I’ve emphasized what I think is the key point here: There are plenty of people and organizations out there that will help you plan the transition, but no one is going to do it for you.

It’s never too early.

tagged as: Autism

I’m not exactly sure what the Northern Ireland Autism Act entails, but I really like what supporter Robert Coulter has to say in support of it:

There is a place for people with ASD in society and they must have their worth recognised and their rights guaranteed. They are not mentally ill people and they have a tremendous contribution to make.

If we fail as politicians to deliver this Act, if Autism Northern Ireland fails to generate the necessary lobbying in our community, then the NI Mental Health and Learning Disability Review could condemn thousands in our community to a life of uncertainty and increased stress for their loved ones.

tagged as: Autism, Northern Ireland, Robert Coulter

How we describe things, how we label them, makes all the difference in how what we are trying to describe is perceived.  Sometimes how we label and describe things we are in favor of is meant to portray opposing views in a negative light (just look at the terms used in the abortion debate: pro-choice vs. pro-life).  

Have you ever heard of dihydrogen monoxide?  Should you have?  Here are some facts:

• Dihydrogen monoxide is colorless, odorless, tasteless, and kills uncounted thousands of people every year.




• Most of these deaths are caused by accidental inhalation of DHMO




• Prolonged exposure to its solid form causes severe tissue damage.




• Symptoms of DHMO ingestion can include excessive sweating and urination, and possibly a bloated feeling, nausea, vomiting and body electrolyte imbalance.




• For those who have become dependent, DHMO withdrawal means certain death.

What is this horrible, lethal substance?  Why hasn’t it been banned by the government?  If you remember your high school chemistry, you have already figured out that dihydrogen monoxide is nothing more than plain old H2O – water.  But spin it the right way, and it is B-A-D bad.

What is your initial reaction when you read these symptoms?

• Lack of abilility to spend time in the company of oneself for a long duration




• Preoccupation with being with others, especially in social events




• Preoccupation with oneself, one’s career, one’s material and physical image




• Preoccupation with one’s social status, fame and income

Or this description of life from someone who ‘suffers’ from this syndrome:

• I do too many things and don’t really focus on one. Instead of just focussing on one thing at a time, like I would like to do, I try to do too many things and it seems like I’ve got it all figured out, but I really don’t. “Inability to focus intensively on one interest,” is a definite symptom.




• Judgement. I judge everyone. I judge based on whether you are like me or not like me. I expect everyone to blend together, to homogenize. If there is any difference, I become afraid and have to send that different person away. “Persistent intolerance of others,” is another symptom.




• I am highly impatient. I guess that’s why I don’t really think that hard about anything. It takes up too much time when I have to get my hair done. Not to mention impatient with others. I don’t have time to listen to your bla bla!




• I take things for granted. Um hum. Big time. I don’t take time to “smell the flowers” or watch the rain fall… Who has time? I need to stand in line at Starbucks while I’m rushing to get to work!




• It says in this manual I read today, that ” there is also a strong fascination for social belonging to the point of chronic lying…In most cases, there is an associated diagnosis of depression, substance-related disorders, sedative dependence, and other behavioural symptoms including inability to listen carefully to others, difficulty with empathy, and a deep fear of heterogeneity.”

Sound like anyone you know?  You, maybe?  The symptoms are, in fact, of “Neurotypical Syndrome” as identified by Estee in a thought-provoking post of the same name.

In the same way I believe that the words we use to describe autistics are unnecessarily negative.  Are there negative aspects to autism and Asperger’s?  Absolutely.  Is that all there is to people diagnosed as such?  Absolutely not.  

I’ve been told many times through the years that perception is reality.  If you perceive a thing negatively, it will have a negative influence on your life, on your reality.  If we perceive autism in our children as only a negative, a bad thing, then that is how it will play out in our lives.  

If, on the other hand, we can see the positives – of course while acknowledging the negatives – the impact on our lives will be correspondingly positive.  

tagged as: Autism, Asperger’s Syndrome