I’m an Autistic mom to Autistic kids, and a non-autistic kiddo. My introduction to the world of “Autism” was through the diagnosis of my oldest son when he was 12, back in the 2000s.
Which, at the time of diagnosis, didn’t make any sense to me. My son was like me, and sure, needed more support in school – which was also like me. So when he was diagnosed with Autism, and by extension I was too, I knew it couldn’t be like the portrayal in the movie “Rain Man.”
I didn’t rebuke the label. I embraced it because I desperately needed to get my son more support in school. That, and even more serious, more protections in place to keep him from being killed by his peers. Yes, killed. 6th grade. No fucking joke. Welcome to being Autistic in the ‘hood.
I was also deeply worried about getting my son out of high school alive for another reason — suicide ideation. This was a horror show resulting from his “otherness” in NT world and lack of acceptance. The hazing, mocking and sheer fucking meanness shown to him … astounding. Horrifying. Soul crushing. And that was just me. He had to live it.
My only goal at the time of his diagnosis was to use it to get him out of school alive. Fuck the diploma and typical grad track shit. I wanted him grown up and alive at 30. My boy is more brilliant than me, and yet right this moment, he’s suffering for supports, services and stigma reduction programs to help him integrate and work for a living wage.
My son wants a home for his wife. They want a family someday. Right now they have the family network of support for housing, living and such. Guess what? Nothing remarkable here. Simply put, this is what families do. Having kids is a lifetime commitment, not just 20-ish years and then send ’em off to “go have fun.”
Today it’s known that suicide is the #1 cause of death for Autistics. So as you can understand, my fear for my son’s life when he was young was incredibly valid. Worse, that fear was in no way comforted by the school system programs, community response and complete spread of misinformation available to parents. (OMG This doesn’t even delve into educator/caregiver/peer prejudices and abuse towards him.)
Relating to other moms with Autistic kids was a total wash. I could not understand their socialized misery and playground pity parties. I still can’t. Neither can many of the Autistic youth in my area, who are in transitional age, that view me as a mother-figure. They leave their homes in anger, feeling abused (many with PTSD) and no support or understanding. They are aliens in their family living rooms. And, if lucky as an adult, live on $800 a month, with no access to food stamps. Life sentence on social security income. These youngers end up homeless, incarcerated and/or abused. Many, myself included, are victims to survivor sex and other horrible conditions often imposed on us for “our good” by caregivers. Most often our caregivers are given compassion for murdering us, because Autistics are so difficult.
Neurotypical Mom of an Autistic, author Judith Newman, wrote “To Siri with Love: A Mother, her Autistic Son, and the Kindness of Machines.” The boycott of her book by the autistic community is not what she expected.
Her responses to the uproar are wow, and greatly denote her lack of basic knowledge about the Autistic community. This is a parental fail. It needs not to happen. The path of misinformation, humiliation and dehumanizing of autistic kids to express “genuine mommy feelings” – no. That has to stop. So do the overshares and not-so-subtle mocking of our behaviors, intense interests and constantly comparing us to our NT age-mates. We have an incredibly different developmental timeline – typical even – and won’t ever represent like a NT developmental timeline.
Judith describes her imaginations of son’s masturbation technique, she can’t imagine a woman would ever want to touch him, and then states she’ll file for medical conservatorship so she can get him sterilized at 18. She’s gone so far as to say the book might help her son land a job in the future. You know, not that he could ever have a support system in place specific to Autistics and careers – nope, if it happens, all credit goes to savior mom. WTF?
This attitude and behavior is being accepted as OK in the NT world. It’s even encouraged to happen in this fucked-up-tell-all-mommy-memoirs format and it must stop. This is autistic abuse, autistic erasure and diminishment glorified.
And frankly, we’ve heard enough from these type of parents. So sit down and shut up on already on the waaaahmmbulance shit.
Guess what? Parenting any child is hard. Parenting a child vastly different from you is fucking hard. Yeah, we get it. We’ve heard it for decades, and this tragic embrace has only harmed the Autistic community. This is the very community that your child belongs, and will be their community of support and friendship when you’re dead. So quit trashing us and start helping. What we need is for Autistic voice to be heard, contemplation and collaboration.
So, to the Judith Newman’s of the World, SHUT UP already and LISTEN.
If you’re suffering the disappearing of your Autistic child, terrified you ruined them with vaccines, or some other such bullshit, stop. You’re being cruelly misinformed and there is HOPE. Yeah, hope. Tons and tons of it. But if hope and community aren’t an integral focus of your fave Autistic charity – bad news: Your feels are being yanked for cold, hard cash.
Your powered-by-love-desperation funds ABA solutions (aka Autistic Conversion Therapy or Dog Training), genetic research for eugenics and a shit-ton of pharma. Marketing on parental fear makes these charities bottom line so damn happy. We’re talking BIG BILLIONAIRE HAPPY too.
Let me explain it this way: All the funds raised for Autism Speaks this past 16-whatever years, $200 million. None of it helped the actually autistic to live a single day. Not a dollar supported community infrastructures, lifetime services or supports, or any damn thing to help. Not even Autistic Crisis Intervention training.
Every day Autistics live without the possibility of improving our lives. We navigate a world that wants us different, to be more like them to gain acceptance. Worse, the Autism information presented to the highest levels of publications, government councils and other leadership are totally funded and promoted by these mega-corp charities padding their pockets.
There’s a provable history of Autism Speaks, and others, telling us we’re too disabled or not disabled enough to have a voice. That we are to sit down, shut up and listen because others know better about us. After almost two decades online the Autistic argument is still centered on NT ideas and thought. I’m sick of it.
I’m sick of the AutismMomTM-types stealing the headlines, publishing books that focus on their “feelings” of raising an Autistic child – and then pushing those feelings as being more important than protecting the feelings of their Autistic child. This then contributes to the erasure of Autistic Civil Rights. These mom’s emos are more important to them than our life, liberty and pursuit of happiness. Fuck that shit.
So while we’re working hard to create a better world for all Autistics – we’re treated like evil sub-human enemies. Often, when get our efforts bashed with word-packages like “you’re not like my child,” and “what’s going to happen to my child after I die?” Then compound that with Autistics are told we shouldn’t be seen in public. That we shouldn’t “normalize” autism in society. We are vaccinated harmed freaks. That we have no empathy, that we’re not good people, we’re violent, we’re rude, we’re … we’re …. we’re … bad.
And while that’s happening, all Autistics suffer. Our very real community issues are buried for “feelings” of NT parents. While they’re arguing for the “best interest of their child” from a non-autistic perspective, they are in fact, burying any chance of an integrated quality life for their child.
The majority of parents don’t know this. All the information they’ve received comes from an organization that doesn’t have Autistic involvement. Everyone is talking about us without us, and they are getting it so utterly fucking wrong.
So if Autism Speaks knew about the Autistic Apocalypse all those years ago – where are our systems of support? The influx of Autistics into adulthood was very much expected. So where’s our help now?
Here, let me help answer that: There is none. Autistic Adults receive none. Ever wonder why? If charities knew this community population was going to explode – why weren’t programs, services and supports being created in the last decade or more?
The why is horrid. Really horrid — The why is because these mega-orgs are focused on “the cure.” What they don’t outline so clearly is the cure is extinction. Autistic cure was – and still is – to find a genetic marker, and make a decision to abort or not based on Autistic status. This is society’s same cure for Down Syndrome.
They have learned everything there is to know about Autism. They have gone through a tragedy in their own family, and they’ve come out the other end and become activists incredibly fast.
And what they’ve done with that activism is they have created a media blitz on Autism, a word for the history books.”
— Jon Shestack, Cure Autism Now Founder, April 2007
So let’s get back to the famous question of “What happens to my Autistic child after I die?”
Well buck up buttercup, because after you die, it’s gonna suck. No way around it.
Our Autistic community is suffering as a people. Sadly, your Autistic baby will suffer as an adult. Just like the rest of us living without support for employment/careers, and living homeless, incarcerated, surviving severe emotional/physical/financial abuse (often by their caregiver), suffer society’s prejudice and stigma – and have no hope for a better quality of life.
Right, so while these vaccine, cure, aba arguments are happening – actual Autistics are suffering. At this moment in time — your child has no services/supports/stigma reduction programs in place for them as an adult. ABA won’t help them when homeless, incarcerated, and severe abuse are their top survival options. Might give your Autistic kid a lifetime of PTSD though.
The Autistic community and our needs are hijacked again and again. Even now – Judith Newman’s “To Siri with Love” book is the NT-world Autistic Buzz. Praise for her writing, and no focus on how it smears stigma and prejudice over the entire community. This memoir is justified by the author as sharing a personal experience — and ignores the harm she promotes with eugenics, forced sterilization and a host of other harmful wtf? included.
Judith Newman has nothing to offer the Autistic community in this book. It steals the conversation, again, from the very real issues the Autistic community is battling. We want a better quality of life. Instead we have NT topics of worry overriding our actual community needs – and we get to suffer some more. So thanks for that. </sarcasm>
To be clear: An NT person’s feelings about Autistics, or raising Autistics, never has the authority to overwrite our civil rights. We have the right to life and Autistic heritage, liberty, and the pursuit of happiness.
So can we get real here for a second, and stop all the violin whining and trauma talk? Be an advocate for Autistics and help us help your kids. Help us help you. We so know what’s coming in adulthood, and it’s dark and dismal — so help us now while there is still time to create a better future.
In the meantime, boycott shit like Judith Newman’s new book, “To Siri with Love.” It pollutes the real Autistic community issues and promotes stigma on all Autistics. It erases the very real needs and challenges we face – and those are realities that need to be spotlighted – not another AutismMomTM’s feelings on raising a child not like them.
My heart to NT moms & loved ones of Autistics suffering in this misinformation loop, and wanting better for their Autistic babies. Together there is hope.
And together we’re stronger. Come join Autistics in creating a quality future.
Autistic Ambassador & supporter of #TheAutisticUnion, member of The Autistic Cooperative, and Founder of AmericanBadassActivists.org.