Post

She said she was describing the desperation that is out there, and the thing is she’s right. Families of autistic kids are desperate. Alison was talking about a day when she’d been to view a possible school for her daughter, and it was seeing the state of that place that pushed her to her limit. 8/

The reason why that clip upsets me so very much is not because it’s a mother describing a brief fleeting moment of hitting rock bottom, of having a thought that probably made her feel like the worst person to ever exist. No, I can actually empathize with that. 9/

I was so upset because she articulated this so casually right in front of her young daughter, entirely in the assumption that [her daughter] did not understand what was being said, and I don’t claim to know what Jodie did or did not understand. 10/

But to broadcast this as a part of autism advocacy, parents talking so candidly right in front of their very young kids—who by the way, might be taking things a little bit more literally than their parents intend—it normalizes the idea that autistic kids just aren’t listening, don’t understand. 11/

Writer & advocate @jordynbzim.bsky.social speaking via AAC: “It’s difficult to explain the intense emotions of what it was like before I had effective communication. I was really unhappy. I was restrained on a daily basis for years […] but was unable to share about the trauma I was enduring.” 12/

Zimmerman continues: “Unfortunately, systems are focused on deficits rather than strengths. This commonly sets people up for failure, as everything is based on their perceived level of intelligence or disability. However, everyone is capable of doing amazing things.” #autism #neurodiversity 13/

Green: "I stumbled upon an article that [Singer] wrote a few years ago, and I think this article really kind of gets to something that is at the center of this whole war on autism thing, this whole anti- #neurodiversity movement. If my blood’s boiling, then so should yours be." 14/

Singer: It’s Time to Embrace Profound Autism. “My experience at the AEI Congress—& as a parent of a child with profound autism—makes me more convinced than ever that we need to bifurcate the [autism] diagnosis & add a new diagnosis of profound autism to better serve this vulnerable population." 15/

Green: The diagnosis of autism spectrum disorder is already bifurcated. We’ll see if [Singer] ever mentions that. Because it is. ASD is the umbrella term for autism, but when you get your diagnostic report, there’s a number at the end of the ASD, signifying what your level of support needs are. 16/

Singer: “Earlier this month, I attended the Autism Europe International Congress in Krakow, Poland, where the theme was ‘Happy Journey Through Life.’ Although this sounds like an admirable goal. I would not choose the word ‘happy’ to describe my daughter Jodie’s life with profound autism." 17/

Green; Okay, well, if your daughter’s not happy, then surely you’ve got no problem with people coming together and discussing ways to make autistic people happy? That would be my first thought. 18/

Green: Also, the “profound end of the spectrum,” we all know now that that is not how the spectrum works. It’s not a linear thing from a bit autistic to very autistic. The current conception of the autism spectrum looks like a spiky sphere, because let’s face it, that looks a lot cooler. 19/

Green: A point along a scale, however, lumps together vast swathes of people who might not have the same needs and might even have conflicting needs. Any autistic person, but especially those with more needs, is better served by this more individualized and subjective approach. #neurodiversity 20/

Green: A theme among these types of parents and these kind of anti-neurodiversity, very, very pro-ABA type people, is that they put the cart before the horse. They put the behavior first. They see behavior before any inquiry as to the motivations or feelings or desires behind that behavior. 21/

Green: Nobody would call [Singer's daughter] happy during those episodes, no, because that’s a sign of an unhappy person. If an autistic person is banging their head, they are probably in some kind of distress.That is what that behavior communicates to you. 22/

Green: It feels [like Singer is] writing this as though somehow the headbutting & the hair pulling is a thing [her daughter] does and that makes her unhappy. As somebody who has been known to [self-injure] it’s because I’m unhappy, that doesn’t happen and then I am unhappy—the other way around. 23/

Singer: "[We need to] add a new diagnosis of profound autism to better serve this vulnerable and underserved population which is consistently overshadowed by the higher functioning members of the autism community.” Green: *record scratch* 24/

Green: I would say that autistic people with high care needs are underserved and vulnerable as she says. But Singer’s line: “Which is consistently overshadowed by the higher functioning members of the autistic community,” We’ll get a bit more through the article before I go off. 25/

Singer: “The term profound autism is critical to distinguish people who have high dependency needs from the more verbally and intellectually able population of people with autism.” Green: Why does “ASD3” not do that? You know that 1 is a different number to 2 and that’s a different number to 3? 26/

Singer: "The Lancet Commission estimated that close to 50% of the autism population falls into the category of profound autism. This means that for every autistic person trying to get a job at Microsoft—there’s also one who cannot grasp the abstract concept of what Microsoft even is or does.” >:( 27

Green: In two other studies [the Lancet commission] looked at, the ["profound autism" rate] was 18 and 23%. I read the study [Singer] cited here, citation seven, and it doesn’t show that 48% of autistic people would fall under what the commission is deciding is "profound autism." 29/

Green: Firstly, the commission report suggests that the "profound autism" category should include “children and adults with autism who have or are likely to have as adults, the following functional needs, requiring 24 hour access to an adult who can care for them if concerns, arise…” 30/

Green: …and not being able to take care of basic daily adaptive needs. In most cases, these needs will be associated with a substantial ID, e.g. an IQ of below 50, very limited language, e.g. limited ability to communicate to a stranger using comprehensible sentences, or both. 31/