This is what Autism looks like. Quirky, eh?
I think everyone who knows me knows that April is Autism Awareness month. The standard of spreading awareness is pretty high in recent years, we are definitely getting the word out. It would be nice if the funding and services kept up with both the diagnosis and the awareness, but I digress.
What I want to talk about is a phenomenon that I’ve witnessed personally (people have said these things to me) and also online. We all know that the internet is full of trolls that you should ignore and shouldn’t take personally. Those people are not the ones that I am talking about. I am talking about the friend of a friend, or the person randomly commenting on some awareness photo – those ones who just don’t get it. Or worse, who don’t get it but think that they do. In the last week alone, I’ve been in 5 – no less than 5 – heated discussions with people about the rise in diagnoses of Autism Surprisingly otherwise well-educated, somewhat well-meaning, but sometimes ridiculous people arguing that there’s nothing about the rise in Autism diagnoses except the fact that we’re labeling “shy” and “quirky” kids with Autism, when we weren’t before. Although it definitely doesn’t explain everything (Most scholarly reports show that while between 30 and 50% of the rise in Autism diagnoses can be explained by increased awareness and a greater ability of parents or caregivers to identify signs of Autism in cognitively able children, that leaves a good percentage of the increase unexplained.), Autism is increasing broadly, across all levels of the spectrum. In spite of the increase in numbers, the ratio of diagnoses between male and female autists has remained level, with 4.5 boys diagnosed per every one girl. But the thing that bothers me – I won’t say most, but a LOT – about this argument is that it absolutely marginalizes a good portion of actual autism diagnoses and the hardships, difficulties, and exclusions involved in the manifestation of their symptoms.
Autism is a spectrum disorder. As a result of being a spectrum disorder, it is definitely, well, spectrumy. Yes, there are many people who have high functioning autism (formerly Asperger’s Syndrome in its own right, but now under the full umbrella of Autism in the DSM-V) who can “pass” as neurotypicals. I dislike even saying the word pass, it’s so … whatever, but people who *actually think this way* would use that word. By suggesting to those high functioning autists that they are merely shy, you are negating their experiences and their difficulties that are diagnosed by professionals, often after years and years of questioning whether there was really something different in the way they processed things. High functioning autists often fear the label, too, or wonder whether their experiences are what everyone experiences. And they, or their parents if they are still young enough, are fed this line about just being shy or quirky (or that there is nothing wrong with them except bad parenting), and it puts them off of seeking proven therapies that can help them.
Repeatedly claiming that the increase in numbers is a result of categorizing previously “shy” or “quirky” people as autistic is also problematic for all the people diagnosed with autism that fall under Classic Kanner’s autism. In other words, those who are not high functioning enough to “pass”, who do not have asperger’s syndrome, who have speech issues or speech loss, who have repetitive physical stims that interfere with social function or social interaction, who may have self-injurious behaviors, who may have severe anxiety related to ASD. This would be my son. He is not a prodigy. He is not an autistic savant. He doesn’t have some magical skill with numbers, He is a typical pre-teen boy who hates homework and happens to have Autism. There is no one who can interact with him who will not immediately know that he has classic Autism. He will never “pass”. By focusing the attention on increase in Autism rates only on high functioning Autism or on Asperger’s Syndrome, you COMPLETELY NEGATE the increase in all other forms of Autism. High functioning Autism isn’t increasing. Asperger’s Syndrome isn’t increasing. AUTISM is increasing. The entirety of the spectrum, on all levels.
Non-verbal autists are the most excluded by this commentary. If the public perception of Autism is that it is a diagnosis for parents who are seeking to explain away their children’s behaviors, or the diagnosis du jour for greedy doctors, or whatever that perception may be, it takes away valuable time, resources, trained staff, available pharmacology, research dollars…essentially everything important to advancing our understanding of the causes and impacts of Autism on the individual. This always affects those who cannot express, with their own words and voices, the detrimental effect it has on them. They have no way to communicate all of these things unless a family member or trained professional finds a way to help them access their own words. Sometimes that never happens. One boy I worked with had only one word, over the 4 years I worked with him – he could only say his own name (No, I won’t engage in a remote television character diagnosis, much as I love Hodor). As a person who has experienced both the parental and the professional side of working with people affected by Autism, I have to tell you – we’re exhausted, yo. But we know we can’t stop. Because for some, we are their only voice.
Autism is increasing. We need to know ALL of the reasons why, without disdaining or discrediting ANY of the reasons why. So stop with the “paranoid parents” and the “designer diagnosis” commentary. It’s not helpful, and frankly when I hear people do that, a Lily Allen song runs through my head. Get involved. Find a way to help people at all stages of diagnosis. Find a way to help fund some research. Find a genetic databank to get entered into. DO SOMETHING. But don’t just complain about it, because that just makes you bitter, and others bitter, and no one benefits.
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