Imagine a hyperactive child, whose behaviour is negatively affecting their learning and home life. Do they need a diet change, medication, and better discipline, or do they need a different learning environment and more accepting parents and teachers who embrace the child as is? Is the difference between those approaches merely differences in attitudes, or are one of those options perhaps distorting the reality to the detriment of the child? These issues apply to ADHD, ODD, and a wide range of other increasingly popular acronyms. Including ASD.
The observation of behaviours is a potentially neutral initial step when faced with a challenged child, though even observations are coloured by what we think is noteworthy difference and pathological versus expected (take for example meeting eyes in a culture that considers it rude to do so, versus one that considers it rude not to do so). After the observation, some sort of value must be applied to what has been observed: Is it a good thing or bad thing? Then the professionals and family have to figure out what – if anything – to do about the behaviours. Even if the challenges the child faces are considered a good thing in someway, there are going to be a range of options available, such as whether to interfere to help grow and encourage the differences they possess.
These different approaches are debated the most with borderline instances. If a child can’t walk because of an obvious physical deformity, you’re not going to have the same debates that you might about whether to interfere with a child whose feet or knees have an angle or weakness that noticeably affects their gait and sporting skills. Same too of the autism spectrum to a large extent, since it differs so much from one end to the other. However, there are those who think disability is only ever difference that has been pathologized by a particular society – whether that disability is physical, mental, or both. That opinion is also present within the ASD community.
Putting a positive spin on disability so we learn to celebrate a child’s strengths despite their weaknesses, and encourage acceptance and accommodation of the individual despite their differences, is embraced by most people. As you shift towards romanticism of the disability though – painting certain aspects of it as beautiful or admirable when they are actually connected with suffering and even pain – crosses the line for a lot of people. When you push that even further, towards actual distortion of the disability so that objective challenges that hold someone back from freedom and independence are either ignored or denied, and scientific findings are misused and abused to the detriment of the neediest people in the given population, then many people get understandably mad. The same passion that makes those parents and professionals fighters for the future and best interests of the child, gets directed against those who would paint a pretty picture over the daily reality.
When you’re already feeling marginalised, forgotten, and misunderstood as a parent as a special needs child, and then find yourself having to actively undo the misrepresentations of others who are supposedly fighting for the same people you are, it is a maddening position to be put in. To make it worse, by speaking out in response about the true horrors involved with dealing with the worst affected individuals, you can end up being labeled as a negative person and parent, when really you’ve been forced into that position by people who took the Pollyanna a tad too far.
Consequences of an overly positive spin / romanticism to the point of distortion, are serious. Including the diversion of much-needed research funds to find solutions to ease suffering, and a perception that the support on offer (by the government for example) is neither needed or appreciated by the affected community. These are no small matters for people fighting tooth and nail to increase the existing research and supports.
And so there is a predictable and consequential split in the autism community, as indeed there is in many special needs communities. But perhaps a more serious one in some regards, since autism is still so widely misunderstood and still poses far more questions than answers about its origins and treatments.
I think (and I’ve said this many times before) that one of the main causes of the problems is when people purport to speak for everyone across the spectrum: “Autism is always horrendous and a serious disability”, or “autism is always only difference and only a problem because of how others treat autistics.” The truth about autism surely lies somewhere between the two: Some aspects of autism are made worse by society’s reactions and expectations. But at the core, autism poses very real and sometimes extremely serious objective challenges, across the entire spectrum. I have learnt that the challenges faced by people at the “high functioning” end of autism can also be incredibly disabling and threaten the person’s wellbeing and independence; it is not just those at the severe end of the spectrum who are done a disservice by over-romaticizing autism.
I am of course aware that there is benefit of painting a kindly picture of autism, so it is not so scary and foreign to potential employers and friends, for example. But those goals should not be sought via the further marginalisation (and to some extent, denial) of other people on the spectrum.
There are so many diverse autism voices clamouring to be heard, that the message can become confusing for the public, indeed too for the people within the autism community, as they find themselves being asked to “choose a side”: Is autism beautiful, or is autism ugly? It seems to me that the point that autism is a spectrum and that its manifestation can be very individualised, has got to be one of the most important messages: Just because Joey has autism, doesn’t mean he is a savant or a genius who will take his place on the world stage, nor does it mean he must be restrained to avoid the physical dangers he poses to himself, others, and property. Autism comes with the full array of humanity within its bounds: The highly intelligent and the not-so-intelligent, the beautiful and the not-so-beautiful, the kind and the cruel. Autism does not pre-determine your intelligence, your looks or your personality.
I remain ever open-minded to the experiences and perspectives of people living with autism; whether in themselves or living with it in their family members. I see truths in a wide variety of them, even when they conflict, since personal lives and values and experiences also vary, so of course experiences of disability naturally vary too. But in the current climate of so much more research and support being needed for autistic people and their families, compared to what they currently receive, I think it’s incredibly important to not actively under-sell the challenges and realities of autism by romanticizing it to the point of distortion.