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this post was submitted on 30 May 2024
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Asklemmy
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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.
After that video with a military defense company, I stopped following his videos
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.
That being said, don't discount your expertise in your lived experience. The importance of theoretical and experiential expertise is equal in my eyes.
Maybe not directly correlated, but I would hire someone with 10 years experience over someone who studied the subject for 10 years.
Thanks. Well, we're in our first year since the diagnosis. There's still a lot I don't understand.
The more you understand the better you can help. You've made the first and most important step. I'm extremely passionate about this and you will find many around you are also passionate. I'm a grown ass dude and 46 and could cry.
Talk to their teachers as they get older. The best thing you can ever do is diagnose. There are so many kids in the school system parents bury their heads and it hurts everyone.
If you ever want to talk I'm almost a decade into my autism journey. Started at 3 and my son is now 11.
Thanks for the kind words stranger! We are fortunate that we moved to Italy (from US) and they have a -relatively- good integration with the schools. He will need an aid next year in the class for some time so the teachers 'get it' (sort of).
Yes, I will save your contact info. I may actually reach out. There are a lot of things I'm still struggling with (he has a loud projection when he expresses himself and it's almost all the time). I think we sort of adjusted to it over time but it gets heavy at times. I'll stop here.
Thanks again!
Both my boys stim verbally with my youngest being "worse" at is. The balance is teaching them awareness and also time and place.
I disagree. It’s not as simple as that.
I wasn’t diagnosed until age 30, and I am thankful I went through my childhood without the label.
If you were not diagnosed until 30 and you're here on Lemmy you're validating my challenge with all the people like you being the exception to the rule. The fact that you are here and can communicate puts you ahead of what I would define as the silent majority of those with autism.
You’ve been gathering experience from before the diagnosis. You don’t have a year of experience you have the age of your child of experience.
There are different kinds of experience. For instance there’s the experience of having a child with autism. There’s also the experience of being autistic.
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.
Thanks for raising this, I get attacked here if I ever point out autism is a disability. I can only assume these people have literally never met anyone with anything but the mildest of Aspergers cases.
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".
It ain’t much but I’ll take it
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.
Ok. Interesting. I'll take your word at it.
Please don't but pay attention to your support group as you move forward. You will learn there are a lot of people that genuinely care about your child and their future. The irony of course is the vast majority of these people make little to no money and are doing what they do because they love it.
As part of your research are you speaking with autistic adults?
I have not yet. I would like to though
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.
lol no. he had a chance, when we tried to have a reasonable conversation with him. his views on autism suck, he partnered with a bad actor, and he muted people who tried to talk to him about it. that's three different problems.
Yes, they're not infallible. That's why they should be held to account for their actions. You're the one saying to treat them like they make no mistakes.
Haha. That would be too sensible.
So typical Autism Parent™ then lol it's like they can't help but make it about themselves.. 🙄
As a parent of 2 children on the spectrum I need to give you a well thought out "fuck you" in response.
My experience online is a lot of you "champions" for autism are only speaking for yourselves and those like you, which is to say the ones that have some means of independence be it verbally, physically or emotionally. I have one son like that. He's Asperger's. He will have challenges, but he will live a long and productive life with all the proper tools. My other son is your "traditional" autistic. He is thankfully verbal but at this point there is no plan for him to be independent ever. As parents we hope for the best and take every day at a time.
To assume that our opinions and decisions are derived as "making about ourselves" is part of the problem. Everything I have done since his birth has been to NOT make it about myself.
The last thing I need is people like you punching down because you can't look past your own goddamn nose.
he's not talking about parents of autistic children. he's talking about parents of autistic children who make that their main personality trait, walking around referring to themselves as "autistic moms", intentionally using confusing language so you can't tell if they're autistic, or if their child is autistic. sort of like Munchausen by Proxy but you don't have to fake it
Oh yeah those parents who make it their identity are weird AF.
Have you considered working memory training as a method for helping your son become more functional?
We've just started him on strattera and seeing some success. The problem isn't so much the autism but how the ADHD manifests. If this makes sense it's like about working memory and more about modeling activities. Because he has issues with muscle tone he lacks a lot of the core abilities many of us take for granted like being able to do something as simple as a thumbs up. Thumbs up took a year.
that advert is terrifying, what the hell
Rober is just a con man that pretends to be science to sell stuff to people.
He also ripped off KiwiCo IIRC.
Psst hey kid. Over here. It’s me Science. Got any questions?
Here is an alternative Piped link(s):
hate group
Piped is a privacy-respecting open-source alternative frontend to YouTube.
I'm open-source; check me out at GitHub.