Emotion Regulation Across the Autism Spectrum: Why it Matters and How to Help

UCLA CART Distinguished Lecture with speaker: Dr. Carla Mazefsky and moderator: Dr. Catherine Lord.

[@monkieri2]

Really wish the majority of autism research wasn't focused on children. There's no support for adults, and what exists is infantilizing or plain wrong. It's much more difficult to get the beginning of supports because of this. Some interesting and valuable points nonetheless. Why is autism research so skewed in this direction? As an autism researcher, does it occur to you that the large majority of autistic people are not being served by this research?

[@raven4090]

I'm an autistic adult, so I appreciate your comment. I've spent more than 50 years being misunderstood and trying hard not to be rejected by society, and now that I've been diagnosed, I'm still on my own. I've given up now and chosen the pain of self isolation over the pain of going out with severe social anxiety.

[@KAZooooo]

@@raven4090 Thank you for your comment. I am 62 and just starting to be able to accept myself as on the autism spectrum. But I'm on my own, trying to find information for adults. I realized I was because of a book I read that my therapist recommended a book a few years ago. It was like my puzzle pieces suddenly fit together and made sense. But that isn't enough. I brought it up with my most recent therapist and she didn't want to go in that direction. I have found that going to mental health professionals is a dead end because they have their "protocol" of drugs and getting you to do what they think you should do. My thoughts didn't seem important, and so I am currently not in therapy. It's like they see what the issue is...autism, but feel they need to fix it rather than teach me what I need to know to be able to live my life.

[@raven4090]

@@KAZooooo I had the same problem with therapists. I've recently discovered through these videos, that there are therapists that understand autism and can help us learn how to deal better with our daily challenges, but they are mostly confined to certain states. I found only one in mine, that doesn't accept medicaid, so I can't afford to see that one. I'm done with the ordinary ones. Even the nice ones aren't able to help much. Having been misdiagnosed in the past and being given horrible meds that messed me up, I hear what you're saying there, too.

[@KAZooooo]

@@raven4090 I wish you luck in finding what you need. It is difficult. I am thankful for video's like this one.

[@raven4090]

@@KAZooooo Thank you. I wish you the same. I am learning a lot from here and also quota, and it's really nice meeting people like you, even if it's briefly. At least we know we're not alone after all.

[@themamabearX3]

Around the 18-minute mark hit me hard as a mom with 2 kids with autism. This is exactly how it's happened for us. I'm so glad it's not us, but it's also devastating to think how many families are also impacted like this. Thank you for all your work. Can't wait to see what all you and your colleagues come up with in the future. ❤️

[@monkieri2]

The bracelet at the end is a fascinating idea. This isn't being marketed as a self-help device for autistic people to monitor emotions through physical stimuli? There could be huge opportunity to help the community there, but it's just being given to caretakers to prevent meltdown.

[@Ahvrym]

Yeah, it was really wild how one of the most interesting research points got stealthed in there at the last minute. Identifying meltdowns/aggression several minutes beforehand is pretty huge if true.

[@NervousSystemWitch]

Where can the EDI be accessed? Articles seem to have some sample items. It would be great to access the full Inventory.

[@jesusvoxmor]

I agree; this kind of resource is of public utility. Do not conceal it behind a paywall.

[@DodgerFran80]

@UCLA are there any ongoing trials in 2024 that patients can enroll in regarding Emotional Regulation ?

[@AndreaFernandezOlivares]

is the EDI available in Spanish?

[@strictnonconformist7369]

If ABA was in use with aversives during and before the time of the fecal smearing, well, WTF would you expect? That’s demeaning abusive torture! I’m an autistic adult and while I was in speech therapy for easily half or so of elementary, words wouldn’t have been where I stopped if I were abused like that, especially if that was done to keep me from the required stimming, or I was forced into unpleasant sensory areas. You’d be lucky to only get fecal smearing, and I will make no apologies for that. If someone did that to me as an adult, they’d best be able to run fast and never be in reach ever again.

[@jesusvoxmor]

Where can the EDI be accessed?

[@andrewgarcia6951]

ARE THESE NT'S JUST GASLIGHTING US.... please stop trying to help us lady we do not need your help 😮

[@andrewgarcia6951]

Why do some NT'S just want to waste my time... 1/4 of an hour in and this lady is waiting my time... No science here... Just NT mumbles... mumbles... mumbles... Incoherently 😂😂😂

[@andrewgarcia6951]

20 Min and she still hasn't said anything 😂😂😂 NT'S ... so much life to waste