this post was submitted on 30 May 2024
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Mark Rober was a big disappointment too. he made a pretty weird video about autism, using the fact that his son is autistic as like qualification for him to talk about it. autistic folks tried to talk to him about the problematic nature of the video in the comments, and he just blocked them. plus, he partnered with NXT for Autism, which does work with Autism Speaks, which is genuinely a hate group that's trying to exterminate autism, and, last I checked, had no autistic people on the board.
Try to understand that influencers and content creators are human beings and not infallible. I don’t think Mark or Derek are the greatest people in the world, but they are trying to put educational and entertaining content out into the world, and don’t seem to be malicious in intent.
Give them a break and see where they land down the road. If they turn out to be trash, judge em all you want. As someone that doesn’t spend the time and effort to pass my experience on to others, I’ll give them a bit of wiggle room on the politics associated with operating in the public attention economy.
As a parent of a child with Level 1 autism I would never dare speak as an authority on the subject. There's just so much nuance to it. I could give people a surface level introduction but that's it. Being a parent does not make people by default into expert psychotherapists.
As a parent of two kids on the spectrum my messaging has been just this with a resounding "there are legions of autistic people that are NOT represented. Ever."
Every representation of autistic people you see in the media, or chatting with online are the exception and the fact that they collectively shit on the fact that there are many isolated and struggling is goddamn frustrating.
If you're autistic and on Lemmy I'm proud of you. My youngest son can't manage his own diabetes, can't wipe his ass, needs help showering, has worsening anxiety and ADHD. I could go on.
As a parent I'm supposed to defer to that representation in the media or on Lemmy because "they're autistic bro." disgusts me.
My final takeaway. Fuck the DSM V for making Asperger's the same as Autism. It isn't. It hurts both parties but I'd argue it hurts Autistic people far more than Asperger's people.
lol all that just to finish with a definitive statement about autism. Asperger's has always been an aspect of autism. Dr. Asperger was a Nazi scientist, responsible for deciding who among the neurodivergent would go to the gas chambers. the patients that he deemed to have "mild enough" autism to be used for labor, were called "Asperger's".
Thanks for sharing your experience. It sounds like you have your hands full and as a parent I can only empathize. I totally hear you about media representation missing the mark. We have some roadway to make. I'm surprised how many parent friends we have that are relatively clueless (even though I must admit, until this January when we got the diagnosis I was too).
My little one started group therapy about two months ago and I'm super grateful even though the journey ahead is still quite long.
On the Asperger's topic: I was under the impression Asperger's is no longer in use as a diagnosis and was folded into the ASD (Autism Spectrum Disorder). At least that's what we learned this year throughout the diagnosis process.
Stay strong brother (or sister)!
From a diagnosis and classification, Autism = Asperger's.
From a lived experience, Autism != Asperger's.
The latter has been validated by every expert I have talked over the years from doctors to therapists to education.