The Major Flaw in Autism Research (and how to solve it)

Autism researchers really don't seem to 'get it' sometimes; but why is this? Are things getting better? Are they even okay?

Ooops: 13:05 to 13:20 - I'm reading my notes off-camera and forgot to edit this bit out, sorry!

📺 Videos mentioned:
Debunking: Autism can be reversed, scientists discover

☎️ Do Autistic People Hate Phonecalls? 🛑

🔗 References:
⏹ FDA Proposes New Ban of Electrical Stimulation Devices for Self-Injurious or Aggressive Behavior
⏹ Tensions build between autism researchers and the autistic community - BBC Newsnight
⏹ 'It's torture': critics step up bid to stop US school using electric shocks on children
⏹ Autism Science Foundation

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👨‍⚖️ Disclaimer:

If you have met one autistic (and or ADHD) person, you have met one person. This is a spectrum condition, and many traits may be different, or have alternative explanations for your symptoms. If in doubt, refer to a psychologist, and not a YouTuber.

Self-diagnosis is valid!

[sillycatboy]

The thing that gets me every time is how some of these researchers talk down to the people they're trying to help

[rozarah]

"Actually consult with the group you're trying to research?! That would only help. Nah let's just do what we want and draw our own conclusions to spite the people we are supposedly trying to help." Researchers probably

[BadNessie]

Oof. Worst part: their methods might be perceived as actually helpful by those who don't know better.

[alancalkins]

If I had someone to handle phone calls and online tasks I'd be unstoppable 😅
Poverty's hard

[grimkitten]

yeah you are so right about the language use, personally got confused by "spectrum" since the diversity of autism traits would be more like a web graph owo

[aumazing]

I’m an autistic SLP (speech-language pathologist), and I see my work as that of an interpreter between autistic and allistic, helping people in a family have the best communication possible. I’d love to see more autistic therapists, but the social demands can be astronomical, requiring lots of down time.

Also, I stimmed the like button because drowning out Allism Shrieks is a fantastic cause.

Edit: clarification on acronym

[HotaMae]

Excellent!!! I'm glad to know that these conversations are happening in more mainstream news channels in the UK. We're not there yet in the US, but voices are getting louder. If researchers want to understand autism, we're right here ready to tell all. Thanks for this discussion and the lovely scenery!

[lynncohen]

Thank you, Mike. I'm a late (age 76) and self-diagnosed autistic woman with relatively low support needs.* I'm adding my voice, as someone who is really f*cking tired of the medical model - regarding autism as something that should be cured, or that some treatment could actually reverse autism. (Yes, some autistics need accommodations and more support than others, but that's certainly not the full story.)

*Self-diagnosed because there are no d*mned resources for adults in either of the US states I've lived in (Vermont and Massachusetts). But I'm smart and figured it out by studying the work and experiences of several brilliant youtubers, including Dr. Tony Atwood.

[Autistamatic]

Great video as usual Mike. There have definitely been signs of increased willingness to listen to autistic voices in recent years, but like you I can only hope the balance shifts towards autistic LEADS in future projects. If the goal of research is genuinely to improve outcomes for autistic folks, who better to know where help is most needed?

[julialaynemcclain]

Thx Mike- good one.

My lifelong best friend is a well known career long autism researcher trained in epidemiology. (Not anyone pushing for electric shock or being overpaid). She’s a serious scientist, adept project leader and very good person. She got into it because of a high support needs family member she wanted to help.

The research space is its own world- I think it would be good if we could connect in w communication in a way that honors that intent while calling out where it is wrong headed. I think you did well to call out the behavior and disproven assumptions here.

My dear friend and I both found it seriously ironic at age 65 that it turns out I’m autistic …. I wouldn’t risk her feeling loved and seen by me to send her this but I wish I could.

I’m just sharing w her my inside story and the beefs the autism community has w the research/researched that many of us find problematic. I share my discoveries and the notion that there is an entire community of people speaking out online from within their own experience and observations and self education/discernment re what is being postulated re their experience and abilities.

Thanks for this- for keeping the conversation evolving into a lexicon that will benefit all. Good on

[unclebozo]

Asperger wasn't actually the first person to describe and research what is now known as Autism, that honor goes to the Soviet child psychiatrist Grunya Sukhareva

[G--A-R-Z]

Autism dad here. My baby is getting the best treatment I can muster. I have actually refused ABA. I am looking into language therapy and occupational therapy. My daughter is perfect the way she is. 🥳 She is limited with her verbal skills. But shes 4. She has time to learn. I have a strong inclination that I too am very much on the spectrum. Perhaps a level 1. I was actually spot on for my daughter. I guessed before we went. My dad actually was not very good at social skills left the military on a section 8. Pretty sure hes is in on this too. To bad I do not know him.

So we exist. But I do not want to change my child's fundamental nature because she is so sweet the way she is. I would never crush her by making her put on a mask. That has been very hard for me to take mine off. 😥I would never put her through that. Love to everyone in the community.

PS if your American, RFK jr is an ablest, says autism didn't existed before they discovered it practically.. The right wingers are just scary as Trump told his nephew that he should just put his child down since they were not verbal. The left wingers we at least have a chance. Make up your own mind. But this is a fight, make no mistake. Its for the fare treatment, funding and everything we need in our community to survive, perhaps thrive one day. Sorry to get political, but I hope I stayed on message.

[Touay.]

I have a tool that helps me deal with phone calls .... i turn the volume and vibrate off.

[isabellammusic]

These are very important topics to discuss! Thank you for talking about it! I like the scenery in this video.

[colorbugoriginals]

Re phones:
Set my phone right to VM, robot voice tells it this is a text-only number.
Businesses that demand phone contact are often overlooking ADA-related accommodations and I go after it.

[condorme]

i think even more basic awareness helps. your channel helps as with the other ones i've seen on youtube. my friend learned through an informal lesson which led to me finding out about my own autism [i finished every video here now! :D ] ...and...even when i didn't think i was autistic and just learning, these videos were rapidly shaping my perception anyway. i'm going to think about it this year too. the school i work at gave a little quiz about autism...for...5 minutes...that i felt frustrated at that i failed at because i was not given time to study the material [teacher fyi] ...and that was it. it didn't really inform me, make me ask questions, or challenge any ideas i had. i hope my school can do better next year. [if anyone has a good suggestion, i'm happy to read and consider :) ] i still have lots to learn and i want to listen to more people before i directly advocate for something, but i'll try where i can.

[-whiskey-]

Imagine if they put all that money into actual resources for the Autistic people who need them. Also, IMO people studying Autism, should actually be Autistic, we/they’d actually understand it much better and have better ideas on how to approach it, and work with the people they’re “helping”.

[waywrdsun]

Great video, Mike. I really appreciate your advocacy for the community. Hopefully the moneyed interests will listen to you.

[karendecosse]

So good to hear a balanced common sense presentation of where we are at with the powers that be. The Deaf community have experienced the exact same categorization. Thanks

[jclocks]

As a dad who happens to be autistic, there are totally autism dads, that obsessive mindset that the autism moms stereotype has is very much not exclusive to that gender