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.