If you havenâ€™t already, please read the introduction post. That will give you context for this page.
Note: This wasn’t on the original list, but it seemed like a necessary update to the topic.
As of today, itâ€™s now 2 years since I was diagnosed as being autistic. Iâ€™ve been meaning to write an updated post for my Not Ashamed series, but Iâ€™ve been so busy. And, even today, I should be writing things for my upcoming blog tour, so this will be shorter and less detailed than it could have been.
I wanted to write because Iâ€™ve learnt a lot since my diagnosis and because I no longer want to hold back on details of the reality of my own autistic experience and challenges. Frankly, if you donâ€™t want to know me or work with me because of that, then itâ€™s just best for us all if you donâ€™t. (Not that I have time to enumerate my particular autistic traits right now…)
Iâ€™ve learnt a lot about autism in general, about ableism (because, with the current structure and expectations of society, autism is a disability), about the difference of being a woman or girl on the spectrum instead of a boy or man.
A lot about myself and what it means to be me and be autistic. A lot about how it feels to admit that I am disabled in the context of this society in which I live. A lot about how much less disabled I am online.
Iâ€™ve read so much, trying to keep up as the new studies roll in and as the neurodiversity movement helps frame better ways of talking and thinking about autism and other forms of neurodiversity.
Iâ€™ve been infantalised by people who should know better once they learn Iâ€™m autistic. Iâ€™ve tried to process the best ways to respond to peopleâ€™s unintentionally rude, ableist, and hurtful behaviours and comments. How to gracefully educate (or encourage them to find other autistic voices with which to educate themselves) parents and other neurotypical people who have reasons to have opinions about how to help (often â€œhelpâ€) and care about someone on the spectrum.
Iâ€™ve had opportunities to explore and try to snuff out my own internalised ableism. As with any time spent processing oneâ€™s prejudices, it has been uncomfortable but important and, ultimately, rewarding.
Iâ€™ve posted a bajillion articles about autism on a couple of my social media accounts, resulting in some annoyed people and some appreciative people. Iâ€™m trying to help people who care about me understand my reality and to spread the new knowledge I have. But Iâ€™m also coming to have one more realm in which I understand that it is not the job of the minority to educate everyone, especially when people have access to the same resources I do.
Itâ€™s been an intense and enlightening couple years. Iâ€™ve had great experiences and horrible ones. I have no doubt thereâ€™s still more for me to learn and still more â€œopportunitiesâ€ ahead for me to try to not end up hitting anyone for insensitive or uninformed comments.
So, before I get back to writing about my book, here are some quick thoughts and statements.
I still regularly discover ways in which my autism has shaped me and my experiences, and I appreciate the friends and family who have believed me when I have said who I am and what I need. We should do that for people in general, non?
I love how much nicer it feels to be me now that I recognise and honour the ways that I need to function and structure my life. I have, for so long, thought that everyone else felt and experienced life very much like I do and that I was just being weak to let it bother me so.
That said, there are things that are important to me, that Iâ€™m choosing not to give up, that are difficult. That, having discovered how non-difficult some things can be now that I know how to better care for myself (or what to cut out), I am acutely aware of the difficulty of. I do what I can to mitigate the discomfort and I have very little, if any, patience for people who criticise or prevent those efforts.
Autism Speaks is a pretty problematic organisation. If you truly care about someone autistic, including yourself, please donâ€™t listen to them. Please find places like the ASAN or Autism Womenâ€™s Network to start or continue/improve your learning. (And if you want to know why adult autistic people have been saying Autism Speaks is terrible, this is a great opportunity for you to take your education into your own hands and google that.)
Hereâ€™s a handy post someone made about how to understand what it means when we talk about autism being a spectrum.
You might also want to consider how that better understanding of a spectrum informs the reason that many of us eschew â€œhigh functionâ€ and â€œlow functionâ€ labels. (Hint: You can be highly functional in one way but not in another, and get labelled based on which trait a person or society puts more emphasis on. And because people will use that label to determine your overall capability and, sadly, your worth, thatâ€™s a pretty crap approach.)
If youâ€™ve met one autistic person, youâ€™ve met…one autistic person. There are so many ways we can differ from each other that you canâ€™t just assume your past experiences have totally prepared you for me. (But, really, thatâ€™s always been true when it comes to me. Ha!)
Anyway, I need to get back to writing things about my book, and the two links I gave you are great starting points if you want to better understand autism from an informed perspective that involves autistic people in the conversation. (A lot of my best learning has come from things posted by the Autism Womenâ€™s Network.)
Two years from now, I should be back with some kind of militant autism manifesto. Woohoo!
I am not ashamed to be autistic. In fact, if given the opportunity to not be autistic, I wouldnâ€™t take it.
Cross-posted to the Not Ashamed section of my site (so that itâ€™s all tidy).