Recently, I took the time to write an email to the Thought Leadership & Innovation Foundation that awarded the infamous antivaxxer, pseudoscience and quackery-based ’autism organization’ TACA (Talk About Curing Autism).
This organization awarded TACA some innovator or hero award for their autism work. Seriously. They did. So, I sent them an email directly after responding on Twitter how wrong they, this organization, got it. That was two days ago?
I wasn’t able to read my own typing at that length (cognitive complications day) but sent it anyways. It takes an incredible amount of focus and effort for me to write an email or use written or verbal language, especially right now. So going into this, I know almost all the time – like 99% of the time – I won’t get a response.
And after two days, per usual, I haven’t received a response yet. I’m so sick and tired of it.
Being an Autistic stakeholder means nothing to most of these organizations and groups. My words don’t matter. My support needs don’t matter. My disability status doesn’t matter. The incredible amount of effort it takes me to communicate with them doesn’t matter — nor is it respected.
My lived experience doesn’t matter. My being a parent of Autistics, ages teen to almost 30 now, doesn’t matter. Because I don’t chirp the song these non-Autistic parent-founded autism organizations want – I don’t matter.
Again, and again and again they show me that I don’t matter. They show me my Autistic children don’t matter. They show me that Autistic people and the Autistic community doesn’t matter – at least not to them.
And I’m so damn tired of it, the avoidance and the silence. I’m exhausted by their ableism and bullshit. I’m tired of the propaganda, lies and bullshit posing as ’help.’
But here we go again. I once again, took an incredibly long time to write an email to an organization about their harm they are promoting or causing Autistics with their work, awards, programs, ignorance and so on.
And really, who are these people to be handing out awards to each other and never involving the Autistic community – but presenting the awards from non-Autistics to non-Autistics in our name? Ridiculous.
The only response I’ve seen by the Thought Leadership & Innovation Foundation is this tweet with a link to an article written by Alison Singer.
Yes, ALISON SINGER. FFS. I’m not sure they even understand the insult and just sheer fucking WOW. In just two tweets, this foundation switched from pseudoscience to eugenics and ABA – and all in effort to bypass the Autistic people speaking to them on Twitter.
I’m so confused and don’t know if this foundation is severely uneducated about Autistic History and community, or just being spiteful. Perhaps it’s a passive-aggressive ’not like my child’ response in lieu of actually communicating with Autistics. What do you think?
Here’s their tweet:
An autism diagnosis can look different for every individual. #Research shows there could be a benefit to labels like “profound autism” to help others understand the level of #support individuals with autism could need. https://bit.ly/339tlSR #healthcare #betterdatabettercare
They link to this article:
By Alison Singer Dec. 7, 2021
So … yeah, that happened. I responded on Twitter and so did a few others. I still don’t expect a response. It would be an anomaly and off pattern if they did respond.
Here’s some of the responses so far …
Nate L Watkins: Yeah, about the commission ….
Sarah Boon #StopTheShock: I Know a lot of followers already feel that The Lancet ”profound autism” is BS.
I’d also like to add that one of the authors of the paper misdiagnosed me twice when I was 4 and 5 years old.
These people are not experts.
Eve Reiland: How about you talk to Autistic people? I am profoundly in need of supports – this false segregation of our people for non-Autistic people’s better understanding of us is rubbish. Autistic with high support needs here and parent to Autistics.
Eve Reiland: The absurdity in two tweets – went from pseudoscience autism quackery to eugenics and conversion therapy — WTAF? Are you severely uneducated on autism and the Autistic community or are you just being spiteful? I emailed you. No response.
Profound autism is NOT A THING, despite the agenda fake experts would like to push.
Neurodivergence Acceptance: …and you just earned a block. Shame your nexus doesn’t include sociology and humanity.
I’m Eve Reiland, an Autistic person and parent to Autistics in California. I’m shocked and dismayed that you are granting an award to TACA on behalf of Autistic people without ever conferring with us.
TACA is an incredibly harmful organization responsible for promoting autism myth, propaganda, gaslighting vulnerable parents and people and harming Autistics in our nation and worldwide.
It’s inexcusable to grant an ‘autism award’ as a non-Autistic to another non-Autistic and never once look into their history and real legacy for Autistic people. These people are not autism heroes – they are promoters of autism myth and pushers of autism pseduoscience and quackery that’s harmed and killed.
How did you decide on TACA and how did you come to believe you could grant them this award in the name of Autistics? How many Autistics did you contact and confer with to come to this selection? Why do you think you’re voice matters more than mine, my children or my people?
Learn Autistic History and connect with Autistic people and our community – you have promoted such harm by doing this and it’s shocking and immoral.
Here’s the real legacy of TACA and their autism organizations network:
An Autistic Perspective of Anti-Vaxxed, Miracle Mineral Solution and Other Quackery
And here’s your press release posted for Autistics to find out how you spoke for us and over us:
What are you going to do to resolve the harm you’ve caused here? I’m asking as an Autistic person, Autistic parent and Autistic Elder – how are you going to do better?
Founder of InternationalBadassActivists.org
Co-founder of The Autistic Cooperative
Autistic parent to Autistics since ‘93
Authentic Autistic vintage ‘72
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.