I just found
this article, which highlights the value – and lack thereof – in labelling, particularly for people on the autistic spectrum. It was a similar article, in 2004, that got me to quit the ASD suspection back then – mostly, cause I didn’t want to be thought of as having a “fashion disease”.
The thing is, it isn’t about getting labelled, but about having a problem that needs to be addressed. Like, as the article says, some doctors in India will not label a child autistic even if they know of autism, but will instead diagnose mental retardation, cause they realize that most educators and doctors haven’t heard of autism and the thing is that the child needs services. A problem would arise if the higher-functioning autistic child were treated inappropriately on the basis of her mental retardation label. On the other hand, if service providers required a label cause of funding reasons, yet were willing and able to serve that child or adult based on her individual needs, really it doesn’t matter what you call her diagnosis. For example, Marjan, who wrote my justification for services, was fabulous at explaining every service need of mine by my blindness, while some of these same needs have gotten people to think I’m on the autistic spectrum – and not cause some characteristics are common among blind people as well as autistics. Now this paper is only meant to show to the care office that I really need the services I receive, so it really doesn’t matter why I need them as long as no-one is going to jump up and say that, being “just blind”, I shouldn’t need these services. It was not until the people in my independent living training home were out of ideas as to how to help me, that we turned to the mental health centre. And, even though we did get there with a suspection of what might be wrong, at least I wouldn’t have been content with a simple yes or no answer to the question whether I’m on the spectrum. After all, if I wanted labels, I’d have enough already, but the thing is, the strategies I and others know to work for people with these characteristics, don’t work satisfactorily for me.
There is, of course, another dimension to diagnosis, but in this sense it doesn’t matter whether your diagnosis is official or self-made. This involves understanding yourself (or your relative). For example, in 2002 and 2003, I was often expected to empathize with other people. At the same time, I knew that I didn’t lack respect for others, but really didn’t know how to show that empathy. When I wrote to an autism forum on this in April, 2003, I was told that social rules can usually be felt intuitively by NTs. That explained why just thinking more consciously about how I acted, didn’t always work – it wasn’t about simply controlling myself (that is an issue, of course), but also about knowing what to do alternatively. After I understood this, I didn’t even need a self-diagnosis of ASD to realize this.
Another thing the article highlights, is how expectations make it almost necessary to label children. Like, it is only because tests are usually timed that children with learning disabilities need to be recognized as such to get extra time. If children who need it were given extra time, no-one would need to label them LD. This is also what I see happen in the preemie community. It is not cause we want labels, that we invented “preemie syndrome”, but cause children are not recognized as needing services cause they are almost like people with many labels, but may not meet criteria. “Preemie syndrome” is also a label that helps us understand ourselves or our children. Like on PREEMIE-CHILD, parents understand what preemies are going through even without officially recognized diagnoses. We know that preemies have problems that make them stand out in school. Many of these are similar to those of children with ASDs and ADHD, and that’s why we may be looking to be officially diagnosed. It’s not so much because we want labels, but cause we want to understand ourselves or our children and we may be in need of treatment. If “quirkiness” got us that understandind or treatment, that would do as well – but then there’s the risk of quirkiness becoming a diagnosis.
Autism is not a tragic monster that steals away a child. Mercury parents who consider their children a “poison waste dump”, with this idea, overlook their child’s individuality – even if they don’t mean to. Autism is an essential feature of a person who may be diagnosed with it, but it is no more a feature of that person than neurotypicality is an essential feature of NTs.