Note from Eve Reiland
World Autism Awareness Day – historically the day non-Autistics give other non-Autistics awards in our name for being such heroes.
Spare me. After yesterday’s brutality of sensory over-exposure in the emergency room, and me using every ounce of anything I had to force myself to stay there in the constant assault — because if my hemoglobin was too low I would have to have a blood transfusion now and not be able to wait for an iron infusion as an outpatient due to my anemia. Something about my internal organs going wonky otherwise. So there was no real choice to escape — none.
So many were kind – they really were and I must illustrate my surprise here because my experiences in the ER are typically brutal and traumatizing – and I refuse to go in most circumstances these days – so the genuiness of some was such a welcome and comforting difference. And I know they are so overworked right now too.
I’m really astounded by some of the folks understanding and they were meeting me for the first time on a BAD day. … And I had a meltdown right in the hallway in front of people. I hate that more than anything, but unlike a tantrum or blowing a fuse – a meltdown can’t be controlled. It must run it’s course. I do what I can to prevent the circumstances that overload me, but there was no escaping the ER. So today and the next few days I’ll be recovering from that alone – meltdowns feel brutal even if they look like bad drama on a reality tv show to others.
Now in saying that, the judgement of others I could still see. The ‘look’ I’m so used to now with the condescending tones and questions, at times infantilizing, minimizing or sidelining me altogether. Then there was an abrupt ask of ‘when I was diagnosed and where’ and not by the attending in charge – but from someone who had no real reason to know that deep of my medical history — and I was like really? Not that I could communicate that in any manner that person could understand. Bill understood and advocated for me.
And listen up, he advocated with my guidance even when I was unable to speak and my use of some ASL words wasn’t understood, I’m rocking/stimming all to hell to regulate long before I clued in I was doing it – he still was able to support my lead in this.
I’m stating this because it’s very important for caregivers to remember to do this – and not just speak for the person they do care for on the assumption they know what they want without checking in. There’s far more room for self-advocacy when you have a someone who will listen and support your goals — I have an incredible trust with Bill in this and many times the quality of my life, or my life itself, depends on his being able to advocate for me when I’m not able to communicate and be understood.
Many in the medical community still don’t believe in my diagnosis – and their judgement can be felt even when needing valid and true medical help. Having Bill there as my translator and emotional support was the biggest help of all. That and knowing my primary doctor has been tracking my health for some years now, and was the one that said to go in, helped me feel better about the my legitimacy of being there.
As for my official diagnosis, my medical record is none of anyone’s business (outside of medical folks and others needed helping me). However, there’s a a wave by parent-founded organizations questioning the legitimacy of Autistic adults and saying the self-diagnosed Autistics are just ‘lifestyle’ choices or some such bullshit. Here’s the thing, I was diagnosed when my oldest son was diagnosed – maybe 18 years ago now? This is before the rise of Autism Speaks and their cohorts took the entire narrative and marketed their own version of autism.
By the way the people who are sneering at self-diagnosed Autistics are the very same people who created the ADOS test, and get a kickback for it, for autism diagnosis. These are the very same people who are failing all Autistics with their activism in our name today to keep their control over the funds, narrative and goals for Autistics.
Since it’s their marketed and spun version of autism that’s in everything, including directly affecting us – my healthcare, my children’s healthcare and all Autistics healthcare for our lifespans is weaponized against us.
What have these priveleged parents who founded the major autism organizations we know today … what have actually accomplished for Autistics since ‘95? Stigma, conversion therapy, billions of dollars to fund their projects, enacting autism legislation that excludes autistics and created the multi-billion-a-year market at our expense … really? These autism organizations ahve done for themselves and for parents of Autistics that tout their agenda and partyline. They are focused on parents, luring them with ‘hope,’ and mollifying any concerns about the lack of inclusion with lip service marketing changes at best.
What must I, and every other Autistic and Divergent do to get real and comprehensive Autistic healthcare? Healthcare that isn’t focused on ‘fixing autism’ or ‘autism solutions’ but about supporting our healthcare throughout our lifespans? Way back in the day, like 2005? Jon Shestack, co-founder of Cure Autism Now, mentioned in 20 years autism would be a word in the history books. Autism Speaks merged Cure Autism Now under their umbrella that year. So it’s 2022, Autistics, we were supposed to be cured by now — or at least converted (the ones of us already alive) and the ‘cure’ would prevent the birth of new Autistics, and save the world from the burden of our existence.
Because of that goal, support for our personhood and quality of life was rejected — and yesterday, at the ER, was just one small example of how real and comprehensive Autistic healthcare doesn’t exist yet. Today, I’m still suffering for it. Today, the entire Autistic community is suffering for it.
When? When will the truth of these parent-led autism organizations finally be so apparent you can’t ignore the harm they caused us?
When will these parent-founded autism organizations stop granting each other ‘autism awards’ to each other, while excluding us, and at our expense?
Autistic vintage ‘72.
Parenting Autistics since ‘93.