Autism and Autisms: Defining a Label

Slow Autistic Child Area

Image by merfam via Flickr

Instead of using the cumbersome phrase of “autism spectrum disorder”, or having to constantly explain it’s abbreviation of ASD, most people refer to this spectrum of conditions simply as “autism”. This simplification in terminology can be deceiving, and even harmful; setting suffering families at logger-heads with each other. Many times over the past couple of years, I have wished people would stop “using our label”…

The ways in which ASD affects people, and the severity of how it affects them, differs drastically. In turn, the way in which you can and should deal with an affected person, will also differ. So when someone purports to speak for all people suffering from autism – whether they think they have the treatment, the correct attitude, or the cure – you should be very wary.

One of the first times we became aware of this issue as a family was when we started coming up against people who claimed autism was beautiful, special, and to be celebrated. This is often said of and by people who have Aspergers, high-functioning autism, or in reference to savantism. They extend their message to encompass lower-functioning autistic people who can’t, and maybe never will, be able to speak for themselves.

That anyone could have found time to celebrate while suffering minute by minute through the meltdowns and violence that we often endured, through our son’s evident misery and constant anxieties, seemed ridiculous in the extreme. But our son had moderate / severe “classic” autism; not one of the more advanced or “special” ASD variations listed above.

Since the public – as a general rule – doesn’t grasp the huge variation in types and severity of ASD, they tend to generalise from the one or two incidents they have been exposed to. So, for example, autism becomes synonymous with genius or severe retardation. It’s not just the general public, some professionals make errors or false generalisations too (such as thinking sensitive ears is a requirement for diagnosis!). When these attitudes become those of policy makers or those who make funding or resource allocations, they can impact significantly on needy families like our own.

Similarly, the treatments and cures offered up for “autism”, might only be useful and applicable to particular varieties and causes of ASD. (And of course, many of those treatments are completely unproven and useless). Causes of ASD vary, such as random genetic mutations prior to birth, or known genetic conditions that run in families like Fragile X. Some of the known genetic causes of ASD come with specific types of problems that need to be addressed, such as special dietary considerations for Rett Syndrome, but again, this is not true of all ASD people. Sometimes the symptoms of ASD can be apparently wiped out – such as for about 20% of Aspergers’ sufferers – other times hope of any “recovery” is depressingly futile (such as for CDD).

Because of the huge variation and conflicting accounts of how devastating autism can be, people sometimes assume that it is a made-up condition; that there are no objective reference points with which someone can be diagnosed as autistic or not autistic. The name of one of the conditions on the spectrum – “pervasive developmental disorder – not otherwise specified” (PDD-NOS) – doesn’t help the problem. You might as well call a condition “it’s kind of like x but it isn’t”. PDD-NOS can still be a very seriously debilitating disorder, and belongs on the spectrum.

Because professionals don’t always have a good working knowledge of autism, or parents go to the wrong specialists to get a diagnosis (such as simply relying on your family doctor’s opinion when you should make sure you see a developmental pediatrician too), some parents end up sharing their woeful stories of endlessly searching for someone who will give them a diagnosis. This comes across like they will keep paying someone until they hear what they want to hear. This sort of perceived desperation to find a medical reason for anti-social behaviour, feeds a public view that autism is really just another word for bad parenting. More often than not these children turn out to have PDD-NOS or Aspergers (in my experience). What these families are looking for when they share their stories is support and advice, when what they often get instead is criticism and ridicule.

A lot of these confusions could be addressed by only referring to classic autism as “autism”, and calling the other conditions by their specific diagnoses. Of course, classic autism also ranges from severe to mild, so there would still be plenty of opportunity for people to make incorrect and confused generalisations. Also, because of the similar and multiple challenges that all people with ASD face, it often makes sense to speak of them grouped together as ASD. So a much better but harder option, is educating people to be more aware of all conditions which come under the ASD umbrella.

The change must also happen within the ASD affected community: Recognition that one autistic person cannot speak on behalf of all autistic people, is a good and important starting point. I always speak about autism with reference to my own son, and where I generalise I always try to do so carefully and with enough research behind my statements to know I’m not performing a disservice.

What it comes down to is we’re all individuals. It’s an age-old adage, to the point of being trite. But it became age-old for a reason.

This entry was posted in Attitudes to Autism, Causes and Cures of Autism and tagged , , , , , , . Bookmark the permalink.

4 Responses to Autism and Autisms: Defining a Label

  1. sandrine says:

    So very true… At times I almost felt cheated that my son doesn’t have any ‘special’ talents that came with his autism, so many times have I heard that he ought to… He has many special talents – he’s an extremely charismatic little boy, draws lovely pictures (although not in a ‘savant’ or ‘genius’ kind of way) and is great on his scooter. But that’s the kind of talent any child, autistic or not may have. At the end of the day, the most salient thing about his autism is that he’s found it very hard to learn to speak, still isn’t great at it (although he has the merit of being a poor speaker in three languages) and is behind two years at school. He does have a lot in common, however, with the other autistic kids we meet – he likes stimming, thinks wheels are cool, repeats things a lot. But this is very different from the ‘retarded’ or ‘genius’ stereotypes you mention. Thanks for this post.

  2. Melissa says:

    I HATE “high functioning” and “low functioning”. First, little kids’ diagnoses AREN’T static. Second, because there’s a huge grey area. Third… the idea that every kid is a savant is just … but my daughter came from two musicians, thus was exposed to music early. When she didn’t spoke, she hummed – often tunes of things we could recognize. (to request) Still does. She still loves music. Will she use it as a task avoidant behavior too? You bet. Most certainly doesn’t mean she’s functioning at her age… or that she has any sense of danger or can tell me if she’s hungry…. it means… well… as a parent I don’t mind that she sees the world in music, I just want her to be able to function in the world too.

    • Melissa,

      I still think the terms high and low functioning are both useful and accurate. I don’t see them as negative, just descriptive. Maybe there are better terms to describe how well the individual can operate in society and interact with their world (?), but the word “functioning” is important here.

      It’s true that diagnoses aren’t static, but that doesn’t mean the terms are irrelevant. For example, as a 3 year old my son was very low-functioning, as a 5 year-old his autism is less severe, but he still isn’t what is classically called high-functioning either, and likely never will be, where high-functioning is used to describe mild autism or Aspergers.

      The lines between high and low functioning are grey, of course, but believe me, when you have a child who is high or low functioing, you know about it. Just because there is grey at the penumbra, doesn’t mean the terminology is redundant or not useful.

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