Today people generally try to be politically correct but, while a good thing in theory that can have some drawbacks, especially in relation to Autistic Spectrum Disorders as you will see. Thus nowadays it people commonly refer to ASD as a learning 'difference' or even a 'personality trait' but, although their good intentions cannot be faulted, both terms have flaws, with the latter in particular giving rise to some unintended (and unfortunate) consequences. However, before you jump to the conclusion that I am overstating the case, let me explain my reasoning.
First the learning 'differences' which people often refer to so that they don't have to use the word 'disability.' A quick internet search shows how broad that term is for it defines a whole spectrum of difficulties (from dyslexia to speech and language difficulties, dyspraxia and dycalculia as well as Attention Deficit or Hyperactivity): confusing both for parents who have just entered the world of autism and the general public alike.
Packaging ASD as a learning difference also effectively focuses attention solely on learning. That approach is flawed for it can potentially make parents and teachers overlook some of the other major factors associated with ASD. This is especially true in relation to the sensory differences, as, all too often, their effects are overlooked or misinterpreted - leading on some occasions to mistreatment.
Just imagine what it would be like if your sensory differences made shopping at that noisy mall with its glaring lights, hustle, bustle and noise like a visit to hell. Hardly surprising if you refused to go or had a tantrum while there.
And yet there have been - and sadly still are - many instances where others interpret that reluctance to visit the mall as a phobia; taking the child there repeatedly in the belief that repetition will help them 'get used to it.' Just as there are times when a child gets 'punished' in some way for having a tantrum while there or running away. Whilst such mistreatment oftimes occurs through ignorance it is surely compounded by the emphasis on those simple words 'learning difference'.
That said, it is the latter idea that autism is simply a singular 'personality trait' that most concerns me for it has the potential to leave children teetering at the top of a slippery slope that can often lead to bullying and - more rarely, thank God - even culminates in child abuse.
My worry stems from the fact that, once people believe that a personality type is the only thing that differentiates those with Asperger's or ASD from those without, it becomes extremely hard to explain that any bizarre, antisocial or self-abusive behaviors are not a matter of choice. To get them to understand that the child is not simply a non-conformist who likes to have things his own way, nor just a badly behaved brat, but simply a child who finds many aspects of daily life both confusing and overwhelming.
Bullying in school in a commonplace problem which, according to statistics, affects a disproportionate number of children with ASD. To some extent children in 'Special Schools' are more protected but bullying is particularly noticeable in mainstream schools where clearly, any lack of social awareness or problems in understanding can make the child stand out from his peers. Stereotyped behaviors will also draw attention to his differences - and can lead to him becoming the butt of jokes he doesn't fully understand - behavior which is often a precursor to bullying.
As you know bullying can take many different forms from name-calling to social isolation or even physical violence: ssomething no child should have to suffer. However sometimes children with ASD can fall victim to other more subtle methods of bullying too as the bully pinpoints the child's weaknesses and encourages him to break rules or act in a strange manner, or ‘winds him up’ so that he becomes agitated and retaliates without realizing what the consequences might be.
Unfortunately bullying is not always confined to the child's peers, for a few members of staff misinterpret ASD behaviors as a choice - because it is a 'personality trait' - or interpret their lack of social graces or odd behavior as 'bad': seeing it as a challenge to their authority and something to be 'overcome'. Thus rather than rather to facilitate the child's ability to learn they try to 'fight the child's ASD or 'make him/her better.'
Whilst good teachers are, hopefully, in the majority, sadly there are many recorded instances of teachers have chosen to turn a blind eye when the child's peers applies pressure; disregarding insults and even physical assaults and often telling the child to 'simply ignore them.' Shame on them.
To get an indepth view of such things you only need read the autobiographies of Gunilla Gerland, Dawn Prince-Hughes or Jesse A Sapperstein, all of whom were bullied unmercifully. Worse still all seem to have been left unprotected by the very people whose duty it was to protect them.
It is a given that such things make the child's life miserable and lead to poor self-esteem, depression or other mental health issues but, coming on top of the difficulties they already have in coping with their autism, it simply compounds their difficulties in relating and communicating.
Be very clear. Bullying is not simply an odious rite of passage. As research now shows, it can actually leave an indelible imprint, disrupting the growth and connectivity of the neurons in the brain; effectively leaving 'neurological scars' - similar to those found in children who have been abused.
Autistic Spectrum Disorders clearly affect the way each child communicates and speaks to varying degrees, but surely if those problems are being compounded by the terms learning 'differences' and 'personality traits' - as I believe they are - then 'the autism community' is doing the children - and adults - a serious disservice by continuing to use them.
Does it all need a serious rethink? I certainly think so. But whether I have convinced you is a moot point. Want more evidence? Join me in my next article where I shall discuss the effects of those terms on my final point - that of child abuse.
Adapted from The Cracks in the Code
- the first book in my forthcoming series The Autism Code.
Stella Waterhouse is a writer and therapist who has worked children and adults with a variety of learning differences since the late 1960’s.
In the mid 1980s Stella worked at a residential home for approximately 40 adults with Autistic Spectrum Disorders (ASD), where she became Deputy Principal.
In the 1990s Stella set out to write a short book on the role of anxiety in autism., which at that time received little attention. Her research led her to investigate the causes of ASD as well as role of sensory disorders - particularly those of an auditory or visual nature.
The original ‘short’ book evolved into a much larger project and has so far spawned two full length books including A Positive Approach to Autism - Jessica Kingsley Publishers, plus a series of short books for parents and teachers all of which are currently available as e-books.
Stella is currently completing her new series The Autism Code. For more information on Stella and her products please visit www.positiveapproachestoasd.com
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