[Note: I’m sharing this tweet’s text here with a correction in one of the dates. My date of life change was Decemer 16, 2010 – not 2021.
Right now, I’m still processing this question posed on Twitter. I’ve lived now for 11 years disabled with high, daily support needs. Did it have to be this way? Can my experience be prevented for other Autistics?
My emotions are still fairly knotted and I’m working them out – but there has to be better healthcare for our lifespans for future generations of Autistics. Included at the end is a tweet in response to this thread by my oldest Autistic son. He is an adult now.
This monopoly on our healthcare for parent-founded organization’s agenda’s has to stop. We’re suffering for it.
Mine is simply one PROFOUND fallout of Autistic healthcare for those of us who don’t matter to the likes of people like Alison Singer, The Slatkins, The Wrights, and all the others who’ve bullied, fought, and battled their way to being the only voice heard on autism for almost two decades now … How many other Autistics are out there suffering for inaccurate medical help now because of this Autism Cabal and their monopoly on our healthcare and support services?
Even the basics aren’t established for so many things. Here, try this question out in your community … Do your local hospitals have sensory-friendly protocols, or any protocols at all, established for Autistics (adults and children) for emergency services and other care?
If they tell you no, then ask why not?
When I asked, I was told it’s because these protocols have never been established. Autistics were supposed to be cured by now. Talk hardship, and sometimes rejection, when surgery and other hospitalizations are required. – Eve Reiland ]
If non-Autistic parent-founded autism organizations didn’t infiltrate Autistic healthcare at every level possible, with their agendas & affiliated researchers and scientists, how would my healthcare be different today? This is a question I’ve been asking myself lately a lot.
I’m going to be 49 in a few days. I’m Autistic and considered severely disabled with co-dx: PTSD, FND, PNES, PCOS, and … for most of my life I had the diagnosis of rheumatoid arthritis (RA). I first became familiar with the pain of RA and reduced mobility in my early teens.
I’d experience flare-ups throughout my life of RA. In my 30s the pain of RA became so great and my mobility so affected, I needed to seek more care. It was then I began the medications like steroids and imuran. During this time I became pregnant with my daughter. I was 36.
I’d had secondary infertility for 16 years – pregnancy wasn’t expected at all. Nor was it an easy pregnancy. I halted all RA meds and rejected taking Enbrel at that time. Not while I was pregnant. I’m so grateful I wasn’t pushed into using it while pregnant. They did try though.
After a very complicated pregnancy and being very ill in antepartrum for weeks – I had my daughter at 34 weeks. When she was 18 months – I decided then to treat my RA again. This time with Enbrel too. That was a mistake. One I am suffering still today.
December 16, 2010 my life changed for good. I went from working full-time in an incredible career to not being able to talk, walk, understand language, and worse. I was in a coma-like state for 2 years I’m told. My memory is still very complicated.
I speak different now. Not like the California girl I was born – folks think I’m from somewhere else – but it’s a speech impediment. I struggle to read and to comprehend others. My sensory sensitivities now are excruciating and i live a very sensory controlled life.
Quite often, in person, people believe I’m a potato and infantilize me or speak over me to my husband. They hand him my paperwork to be signed – and quite often I’m mute and can’t speak for myself – so he is my #1 advocate too and hands those papers right over to me.
I have lost a home, I’ve lost my ability to parent hands on full time, I’ve lost a career, my retirement, my self-worth and any hope of ever being able to support my children better than poverty now. I need the support of a caregiver full time.
I need help dressing, taking a shower, eating, cleaning, cooking, making appointments, helping me to remember my meds, to do the shopping, to know what to do when my seizures hit (several times a day only now – before it could get to 100s)
Since I’ve become in such need of supports, I’ve been a victim of caregiver abuse – and survived three years at the hands of a predator and then lived alone after without any help and wouldn’t have made it without support of a good friend.
Everyday I wake up in extreme pain, and live in extreme pain – and more complications than most can ever fathom. For years I’ve been told the RA meds, Enbrel especially, didn’t cause this for me. It didn’t cause my hair to fall out and trap me in my body for years.
No … it could never be that so it was just my PTSD. My FND. My PNES. My anything but that. It’s been over a decade now … and since reconnecting with the Autistic community in 2016 I learned about a condition called Ehlers Danlos Syndrome or EDS.
I’d never heard of EDS before the Autistic community connected me to it. It’s common comorbidity for Autistics. Come to find out, I have EDS. Which OK – EDS and RA … I won’t take meds for RA since 2010. I absolutely refuse.
But this year something strange happened and at first I didn’t believe it … it took three confirmations before I was able to really fathom this could be real – I don’t have RA. I don’t have Rhuemathoid Arthritis and I NEVER DID.
You know what else I lost when I became disabled? My disability insurance for long-term through my work, because they said it was sourced from PTSD. Instead of making up the gap between my old salary and ssdi, they dropped me. poverty was the welcome mat to this life for my kids
So my question is, if Autistic healthcare actually followed our developmental timelines, our lifespans and included awareness for common co-morbidities like EDS – would my life be different today?
If @AutismSpeaks and others hadn’t pushed their personal agendas into my life and healthcare – would I have known about EDS being a common co-morbidity for Autistics and been tested for that before being given Enbrel for RA? Would it have prevented some of these complications?
There are real consequences out here born by Autistics caused by the harmful ripple affect these autism organizations created in our name. How much more must we bear the burden for these priveleged parents of Autistics holding the reins of our healthcare for their agendas?
Seeing the autism cabal rise up and push ‘profound autism’ so they can maintain control of the power and money is infuriating. Watching them count all Autistics in their bs ‘autism epidemic’ and then tell us they aren’t here for us – but for autistics like their child.
Damn all the rest of us they don’t have compassion for – damn us to poverty, damn us to abuse, damn us to prison, damn us to early deaths via suicide. Early deaths via ignorance in medicine.
It’s time halt these organizations and untangle them from all faucets of our lives, education, healthcare, therapy and more. ABA only increases our suicide rates – but there it is in our mental health services now … damning us Autistics again. When will they stfu and listen?
To be clear, I do have PTSD, FND, PNES and EDS. There’s no going back here for me – but perhaps this tale of mine can be a caution to other Autistics and professionals. And maybe someday, in this civil rights and disability rights movement, we can get real healthcare options too.
[Note: This tweet is by my oldest Autistic son, Jared. My healthcare experiences didn’t just affect me. How would Christmas be different if Autistic healthcare and our lifespans were better understood? How different would my son’s life be if I didn’t go down like I did in 2010?
Do you know what happened to him after I went down? I’ll tell you someday, and with his permission too.
Every Autistic is ‘profoundly affected’ by these non-Autistic-led autism organizations and privileged parents who leverage their voice over Autistics. There is real damage out here. Real fall out. Real lives being destroyed due to their agenda for us. When will their monopoly on all things autism be halted?
When will they stop segregating Autistics into those who matter and those who don’t based on their defined categories for us?
– Eve Reiland ]
ReignFox: This is my mother. Read her story. This is why Autism Speaks is the fucking devil for us.
ReignFox: This shit made waves through our family and especially hit me hard. I’ve been traumatized for years because of this shit. It literally ruined Christmas for me seeing my mother being destroyed like this.
12:24 PM · Dec 19, 2021