Regrettably the past two decades have seen the rise of the autism wars. One such battlefront is linked to the idea that autism is triggered by some 'external force': an idea that has led many parents to buy into the idea that 'curing' autism would return to the child to 'normal' and one that has also encouraged numerous organizations to look for and/or advocate a cure.
It is a given that a parent's love is instinctual, unconditional, and forever; making it quite natural that parents should fight for their children and do everything in their power to help them. Certainly we have to recognize that however deep that love, some families face tremendous challenges in helping their children. All too often that is because they have little advice or help in understanding the causes of their child’s behavior, or lack support or have to fight for services, speech therapy, a classroom assistant or even respite care - at least until the family has reached breaking point. Unsurprising then that some families spend vast amounts of money on therapies or treatments that they think (or are told) may help.
But in the world of ASD, where many things are taken literally, the language in which the intensity of that love is expressed is of the greatest importance; for misinterpretation can cause great heartache.
Hardly surprising them that today many people - both with and without ASD - are concerned when they hear talk of 'defeating autism' or hear that parents are seeking a treatment to 'restore' their child to how he/she was 'before the autism'.
Of course most people recognize that such comments are not made because the parents wish to eradicate the child – but rather because they see autism as a separate entity: ofttimes an illness. And yet, predictably, such ideas cause much – continuing – hurt especially amongst those who feel their autism is as integral to them as their gender or race. Thus all too often they interpret such comments as a desire ‘get rid of the autistic person him or herself'
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Perhaps that is why one person - presumably on the spectrum (?) - wrote that the predicted measles epidemic in the UK (which was blamed on falling vaccination rates) should not be blamed on scientific irresponsibility but rather on the parents 'who prefered the possibility of a dead child with measles to a live child with autism'? I think that is a grave misconception of the motives of the majority of parents who decline to have their children vaccinated, but even so we must also recognise that must be truly awful for anyone who really feels that is what the 'cure' brigade mean.
Howver some parents and professionals do give the impression that autism is some sort of curse: as with one professional who commented that 'Autism steals the soul from a child'. Happily though there are many others who totally reject such comments and find them destructive – as indeed they are. As the controversial blogger Kevin Leitch pointed out, stigmatizing such children as soulless only adds to their problems. Thus in a heartfelt letter to the author of 'the stolen soul' letter Mr Leitch commented that such children have:
. . . enriched . . . lives . . . We think they are beautiful children undeserving of such a brutal, harsh, inaccurate description.
Nor are some organisations exempt from making such negative and misleading claims. Sad to say in 2009 one well-known organization even shared a video on YouTube which caused widespread consternation from autistic self-advocates and parents alike for, although it was rapidly withdrawn, it focused on the most negative aspects of ASD before featuring the voices of parents and siblings who describe themselves as warriors who will fight until they vanquished 'it'.
Frightening! Hardly surprising that many people with ASD - and their families - feel beseiged: as if they have stepped into a parallel universe where their lives are routinely described as an epidemic or a drain on society.
Not unnaturally such ideas have caused a backlash, both against the idea of a cure and against those who promulgate such views. Thus in 2004 a group of people with Asperger's syndrome (which has now been omitted from the Diagnostic and Statistical Manual of Mental Disorders) set up an organization called Aspies For Freedom. This aims to increase public awareness of the ‘autism rights movement’ or ARM as it is commonly known: a campaign that owes much to the Internet which enables people to present their views regardless of their communication skills.
ARM continues to encourage autistic people, their caregivers – and society – to accept autism as a variation in functioning: not something that could or should be cured. Not a disorder, but rather a normal occurrence which is either a product of a genetic variation or in which the brain is either wired differently.
Meanwhile some advocates also believe that common treatments for the behavioral and speech delays associated with autism, are not only misguided but also unethical. They also advocate a greater tolerance of autistic behaviors – like stimming (repetitive behaviors which are often considered stimulating) and strongly object to treatments or behavioral interventions that aim to extinguish such behaviors, force eye contact or break the individuals' routines.
They believe that, with the right support services in place, all autistic people are capable of living meaningful and fulfilling lives and that the quirks and uniqueness of people with ASD should not only be tolerated, but supported and appreciated - in a similar way as some other minority groups.
Controversial views indeed. On the opposite side critics argue that ARM's representatives are a minority of 'high-functioning' people and are unrepresentative of others with far greater difficulties; that the benefits claimed to accompany autism are overstated; that children with severe behavioral problems need certain interventions if they are to continue to live at home - or even that such views may reduce funding for research and treatment.
Over the past few years this debate has become more and more acrimonious and heated with some exceptionally unpleasant things being said. Thus people in ARM have had their views challenged on the grounds that they are too 'high-functioning' or even 'are not actually autistic', whilst others find themselves hectored to get treatment. Meanwhile the term neuro-typical or NT, commonly used to describe people whose ability to process information and social cues is 'normal' has, over time, changed from a humorous and satirical tool to a derogatory term which is used to disparage others.
These issues are complex and complicated, arousing very strong feelings on both sides but sadly, that it is not the only battle in this 21st century world of autism as my next article will show.
Adapted from The Cracks in the Code - the first book in new 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