• Is autism spectrum disorder primarily a disability, or is it our inability to accommodate neurodiversity that makes it so?
Diagnosing our children with autism spectrum disorder offers them the opportunity to be understood, respected and valued. But what does the label actually mean?
By
Melanie Heyworth

11 Apr 2016 - 3:32 PM  UPDATED 19 Apr 2016 - 4:25 PM

A friend once asked me why I wanted my youngest son to be autistic. You see, my eldest son was diagnosed with autism spectrum disorder (ASD) relatively late. On seeing many of the same behavioural traits in my youngest son, I was (at the time of said friend’s question) going through the expensive, arduous process of having him diagnosed with ASD as well.

It struck me as an odd question. I don’t think many parents would want ASD for their child. Don’t get me wrong: I love all three of my boys unconditionally and ASD is an intrinsic part of two of their personalities, giving them unique gifts and strengths that brighten the lives of everyone they know. But having ASD makes life just that much tougher for my boys. Our children are our children and we love them no matter what challenges they face, but I think most parents would agree that we would prefer fewer and less severe challenges for our children if given a choice.

So, no, I didn’t want my son to have ASD. But if he did have ASD, I wanted to know so that I could understand him and help him to be happy and safe in a world that isn’t quite geared to meeting the needs of people on the spectrum.

I didn’t want my son to have ASD. But if he did have ASD, I wanted to know so that I could understand him. 

My friend’s question raised for me that oft-visited debate of labelling: do we diagnose and potentially confine individuals to the stereotypes associated with a particular label? A label can confine, pigeonhole, stigmatise, limit. A label often makes it hard for other people to see the person beyond and outside that label. But, when it comes to ASD in Australia, a label also brings funding to access early intervention and it can bring understanding and support from the community.

Another well-meaning family friend once told me that his son had a friend who everybody ‘knew’ was on the spectrum but his parents ‘were so great, they never needed to have him diagnosed’. The implication was that, since I had had my son diagnosed, I was not such a great parent. But is it so bad to pay respect to what everyone clearly ‘knows’? Is it so bad to want to acknowledge the reality that a person on the autism spectrum is different? By articulating it, can we also then embrace and recognise – endorse even – that difference?

When I began postgraduate work into autism studies, a fair number of my cohort were people who had been diagnosed with ASD in their adulthood. Their voices gave me first-person insight into the experience of diagnosis. Invariably, they spoke about the comfort of diagnosis, of the relief that accompanied a recognition of what they had always known – that they were different – and of the security that came with the self-awareness of why they were different. That doesn’t seem so bad to me.

In some ways, the debate is moot: whether you choose to have your child diagnosed or not, the label doesn’t change who your child is. But if a label ultimately helps my child to be at peace with himself, then for me it’s worth it.

The implication was that, since I had had my son diagnosed, I was not such a great parent.

But let’s examine the label itself a little more carefully. In 2013, the American Psychiatric Association issued its newest version of the Diagnostic and Statistical Manual for Mental Disorders (DSM-5), under which Australian practitioners operate. In DSM-5 a number of different diagnoses, including Asperger’s Syndrome, were collapsed under one umbrella: Autism Spectrum Disorder. The purpose of this move was to make diagnosing individuals a more precise and objective process.

There has been considerable debate about whether this conflation is a positive change. The loss of the term ‘Asperger’ has alienated some of those individuals already diagnosed with that syndrome, who identify as part of an ‘Aspie’ subculture. And many clinicians retain the term ‘Asperger’ to help parents to understand the new diagnoses. But the use of ‘spectrum’ in ‘autism spectrum disorder’ captures one of the quintessential elements about this condition:  the symptomology and severity of ASD belong on a continuum, and they vary profoundly between individuals with this diagnosis.

Using the word ‘spectrum’ reminds us not only of the vast range of potential ways in which individuals with ASD might experience the world around them, but also reminds us of the vast range of ways in which those experiences might be manifested. ASD is an incredibly diverse condition, and individuals with ASD are as unique and heterogeneous as any other loosely categorised group. ASD encompasses an astounding range of traits, from an absence of language to highly verbal, from intellectual disability to superior giftedness to savant abilities, from sensory under-reactions to hyper-sensory sensitivity, for example. There is an axiom within the autism community that ‘if you’ve met one person with ASD, you’ve met one person with ASD’, and we would all do well to remember that: there is no typical presentation, no stereotype that fits all or even most, no generalisation that suffices to capture this diagnosis.

When I talk to my children about their ASD, I call it Autism Spectrum Difference. If I’m going to label my children then I choose a label which demonstrates an intrinsic appreciation of the individual, of the fact that they are different, not disabled.

 As much as I value acknowledging the ‘spectrum’, I worry about the implications of labelling those on it with a ‘disorder’. If ASD is so deeply integral to who my boys are, as many autism advocates attest, how can it be a ‘disorder’?

For me, the question is: are my boys – my curious, loving, humorous, affectionate boys who experience their world so intensely and so genuinely – fundamentally disordered? Can we really say that experiencing and processing the world differently makes someone disabled? They face challenges, yes, but is their ASD primarily a disability, or is it our inability to accommodate neurodiversity that makes it so?

When I talk to my children about their ASD, I call it Autism Spectrum Difference. Maybe it’s overly politically correct, but if I’m going to label my children then I choose a label which demonstrates an intrinsic appreciation of the individual, of the fact that they are different, not disabled, of the fact that there is nothing wrong with them, nothing broken, nothing needing curing or fixing, just a profound, deep difference that needs acknowledgement, acceptance, and sensitivity.

 

For support of more information about ASD, visit AspectAmazeAutism Awareness and Raising Children. 

 

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Image by Flocke (Flickr).

 

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