Friday 13 April 2018

Autism Acceptance Month 2018 Day 12: K is for Knowledge

BSL: knowledge

K is for Knowledge

I touched on this the other day in H is for Hyperfocus; now I'm further along the alphabet, I can expand on that aspect and talk more about the way knowledge and autism interact.

Part 1: Knowledge about autism
As pretty much anyone in the autistic and autism communities (for clarification of the two, see C is for Community) can tell you, knowledge about autism is constantly improving, widening, developing and evolving.

One of the really good things about this expansion of knowledge is that more people are getting identified as autistic. Yes, the diagnosis rates are increasing, but that's pretty much completely down to changes in diagnostic criteria and adults being diagnosed (no, it's not vaccines and it never was). I know people being diagnosed in their twenties, thirties, forties...even up to their seventies!

There is a lot more known about autism now than there was even just ten years ago, but there is still much more to know. Research is not always directed towards the most suitable targets (finding a "cure" rather than asking autistic people what we need). Diagnostic criteria shifts as knowledge about autism develops and increases - the old stereotypes can sometimes hinder this, which is one of many reasons why they need to be completely abandoned - and becomes more inclusive of the full range of autistics. We are as individual as NTs.

As technology develops (frequently thanks to the abilities and skills of autistic people!) and new people come into autism research from many different disciplines (medical, psycholoy, sociology, occupational therapy, physiotherapy, neurology, to name but a few), this increases knowledge about it, which can then benefit wider society, allowing the provision of better, more appropriate services, supports, guidance, best learning practices and so on. This is all good, as long as it is appropriate, beneficial and with autistics at the centre, and is not geared towards "normalising" autistics or without us.

What does need to change is how knowledge about autism is disseminated to wider society. At the moment the dominant narrative is still the tragedy-and-fearmongering narrative, because of the heavily-pathologised input and language from clinicians, and the forceful vociferousness of Autism Warrior Parents™. Autistic voices are beginning to be heard and we are gradually making inroads in some areas, but there is still a long way to go and we need NT allies (genuine allies) to help us, because the system is not designed with us in mind. Perceptions need to shift. We do not need to be feared; an autism diagnosis does not need to be the worse-than-death-sentence that it is so often portrayed. Provision of clinical information is not enough; parents of newly-diagnosed children should be encouraged to meet autistic adults (as long as the autistics are comfortable with this) in order to understand us (and thus their child) far better.

Part 2: Autistic relationship with knowledge
There is something distinctive about autistics' attitude towards knowledge that tends to be more emphatic than that of NTs (not a hard and fast rule but a general tendency). When something catches our interest, we tend to become completely absorbed in it, devoting our entire focus and attention to it in a way that NTs don't tend to do.

And we want to know everything about that subject. Absolutely everything. We can spend hours trying to unearth additional rare nuggets of information about our interest (sometimes, it must be said, to the detriment of everything else...) because of that burning desire to know.

There is nothing wrong with that. Nothing in the slightest! Often, this can work to our advantage if it is nurtured - with the right guidance and support, we can achieve great things. I will be writing more about our passionate interests later this month in P is for Passionate Interests (once it has been posted I will edit this post with a link to P).

The only time it can be problematic is if the interest causes danger and harm (including damage, neglect, suffering, etc), and on those occasions interventions are necessary.

I embrace and love my desire for knowledge about the things I love and am passionate about. It gives me the ability to support campaigns such as the petition against the Judge Rotenberg Center by seeking out as much information as possible to add weight and gravitas. It has enabled me (along with good support provided, from family and friends, and from the university) to succeed academically. I am now in the very early stages of planning a PhD, on the representation of autism in written fiction from an autistic perspective, although I have a long way to go and a lot of work to do prior to submitting any PhD proposal. Please note that academia is not for everyone and that is perfectly acceptable. Our value as people should not depend on what we can achieve academically, produce economically or on us serving as inspiration porn. We should be valued as we are.

I am a rolling encyclopedia (I know the phrase is usually "walking encyclopedia" but as I can only take a few steps and thus am a wheelchair user, I have tweaked the phrase) of Harry Potter, football (soccer) statistics and random bits of trivia. And I wouldn't be any other way. Besides, it makes me easy to buy gifts for!

Don't withhold an autistic's desire for knowledge. Even if you don't understand it, accept that we do, that we have our interests. They should be encouraged; they are part of us and they are immensely important to us. Respect that.

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