What Is The Autism Spectrum? (What Do Actually Autistic People Think?)

“I don’t suffer from autism. I suffer from other people.” YES!!!

Your comment “it really matters what we consider improvement to be” is incredibly significant. THANK YOU.

"What do actually autistic people think?" We think that question as written should come with blood pressure medication.

The worst thing for me was the ABA practitioners saying that autistic folks experiences with ABA were lies because ABA is good now. Like, these people are saying they were abused and traumatized only a few years ago. That their children were abused recently. I wish they’d stop telling autistic people their inexperienced are invalid and actually take a second to listen and evaluate their field.

What ABA refers to as "improvement", I sometimes refer to as "con/deformity". ... To force a square peg through a round hole, they have to apply enough pressure until it "conforms" to the shape they want to see. But in the process, the pig has been forced to "deform" itself into an unnatural shape, and it will likely take significantly more time and effort to repair the damage that has been done in the process.

ABA therapy is not just damaging for the patient (it has been shown to cause long term PTSD in autistic people). It also just doesn't work. Let me just quote a 2021 paper (Shkedy, G., Shkedy, D. & Sandoval-Norton, A.H. Long-term ABA Therapy Is Abusive: A Response to Gorycki, Ruppel, and Zane): Furthermore, two major studies conducted by the US Department of Defense over a nationwide sample in the last two years massively call into question the efficacy of ABA for treating autism. These studies were based on real world experience and not laboratory results. In addition, the sample size for both was over 6000, making them the largest studies these authors are aware of pertaining to autism services. The first study, presented to Congress in 2019, reported that 76% of beneficiaries had little to no change over 12 months of ABA, and 9% had worsened symptoms, as measured by ABA therapists (Stewart, 2019). The second follow-up study found no statistically significant correlation between the number of ABA hours rendered and outcome measures (Donovan, 2020). Donovan (2020) also conducted population analyses for age and severity which found that, in older children, symptoms worsened over time. Therefore, as Sandoval-Norton and Shkedy (2019) noted, the longer a child receives ABA services, the worse off they are. In sum, the largest study ever conducted on Autism found that any positive changes observed were “small and may not be clinically significant,” with the vast majority of those receiving services having no change in the only thing ABA purports to treat, or even worse, regressing (Donovan, 2020, p.23).

Yes. That is why I used the idea of a square peg in a round hole...the square peg is destroyed. You got this point for sure! The amount of trauma caused by being forced to fit in by masking (for me, for 64 years) cannot be underestimated. I also agree that learning the genetic cause of autism is unhelpful. Brain replacements are simply not feasible. I would much rather see programs to assist autistic people by supporting who they ARE, so they can live happy lives as autistic people. I'm not broken...I am just not neurotypical. My operating system is not flawed, it just works differently. There are so many simple ways to support autistic people, and educating about us is one step toward this. In that regard this video is excellent. Great review and response.

This was a good response video - and overall, I agree with the main sentiment of "This is way better than most videos we get; there is a lot of great information. There were a few "not good" parts, but I would have overlooked them, if not for the ABA bit." I could not share this video with those who could have learned quite a bit because I WILL NOT share a video that promotes or justifies ABA.

The whole "you don't show the autism so you don't need help" hits so hard, I am Late diagnosed, throughout my entire school experience it was being yelled at for acting " inappropriate", me masking really hard and struggling for it then being told I'm just lazy cus my grades are crap and I don't need any help because I'm clearly just "normal" I ended up in therapy because of just how bad this cycle became after I had a full mental breakdown leading me to issues that took years and years to help fix, it also left me very vulnerable and people took advantage of that Please for the love of everything that is good in this world Get the child tested if you think they have it And TELL THEM WHAT IS GOING ON Not knowing is the worst part, you constantly sit there and ask yourself "why can't I just be normal, what is wrong with me" ect The answer being your disability and the lack of help for it You don't tell someone who can't walk they are just being lazy, why do we do that to people with autism and ADHD (I have both)

Really appreciate the measured response. I hope that the SciShow team do watch it and make a statement - and preferably a new video.

First, the focus on symptoms has little value to me, in comparison with the fact that my brain works differently and that's what I suffer with. I expect things that people forget or don't mean, I'm made fun of if I don't understand that a mean comment was supposed to be a joke (which usually is not, but I'm expected to pretend and I can't), I'm usually ignored or completely denied to things because I asked about things that I truly want to understand and somehow this makes people avoid me... And I'm not even talking about friends, I'm talking about authorities or medical professionals, the problem is with everything around me. That's where our problem starts. Not the symptoms... In my opinion, this is where we need help and where therapies should start, with kids as well. Not addressing their behaviour, but why they do it. That's why it's so easy to grow up undiagnosed, we have the problems, but happened to be in an environment where we were taught to hide and fix ourselves, and shamed or punished if not. It also bothers me how people don't talk about the shift that happens on average (from what I see on Reddit and myself ofc) at mid age. Basically in our 20s, 30s, even 40s for some people, we are stronger and still learning/absorbing. We can heavily mask and "push" the thought that we are different from our heads, because it feels like it will eventually go away and he will become less autistic one day. For the first decades, things seem to get better for us, but that's just because we learn more masking, and thus mask more (i.e. fake more). And this is rewarded by those around, who expect "normality"... even though it's still only a shell, that cracks if the interactions are too long. The reality is that it's the opposite for autistic people: the struggles in our minds become more difficult to ignore or overcome as we get older and naturally weaker. So there seems to be a number of autistic people in their 40s, 50s, 60s,... that reach their limit to mask and be active, and consequently burnout perhaps for the rest of their lives... This is why it matters how we think, ALL THE TIME. Not what others see... I couldn't care less what others see at this point. I used to, and it got me to a burnout without end in sight, and 10 years of studies completely wasted.

Excellent response! I hope people who watch the SciShow video also watch this video for a more complete picture and understanding.

It would be refreshing to hear from people on the spectrum what things improved their quality of life and what did not. For other conditions that seems to be the standard, but not for autism. While undiagnosed, I went through years of cognitive therapy and I think it did more harm than good.

I have an autistic grandson. My objective is "how do I act, or what do I do , so he has a happy life, the same as I wish to have?

Absolutely agree! Couldn't believe my eyes and ears when Hank was talking about ABA like that. Really dissapointed in that part!

Paul I love this response - particularly the bit around genetic research and the comparison to getting your car fixed. 'What does this research tell us? - Not much" Brilliant logic. Thank you.

Thanks for this video. I've been low-key avoiding the SciShow video in my feed because I had a feeling it would feel a little...off. This is such an interesting conversation to me as a late-diagnosed ADHDer (and suspected AuDHDer) who is deeply steeped in the ND conversation online as a means to understand myself. I am a certified therapeutic horseback riding instructor, and while I am not specifically trained in working with autism, many of my riders are autistic. I sometimes have a hard time reconciling what I know about the experience of being neurodivergent with how best to work with ND kiddos. I pretty much just do my best to understand who they are and what they're interested in, and I think it works pretty well. I don't know a ton about ABA or what the more current best practices are, but I know enough to feel weird when parents ask me to force their kids to make eye contact and say "hello" and "thank you." I don't know if it's my place to say anything, so I usually end up sort of going with it but not being strict about it at all. I've also felt very weird listening to conference presentations about autism given by clearly NT presenters. It seems very similar to how the SciShow video came across, well-meaning but with underlying medicalization and reductive explanations. Not sure what my point is here, but I really appreciate the way you discuss this topic. I hope to be a better ambassador with folks like you as a role model.

Framing the therapy’s effects as improvement is sort of an economic thing I suppose, getting people who would otherwise need accommodations to be completely independent and functional as a cog in the economy. It’s got some disturbing connotations. But it is part of a huge web of connected reasons for them to force as much standard behavior as possible.

So glad that (1) he used the word "autistic," (2) he explained the double communication situation, and (3) he said that autism is forever! Wonderful analysis, Paul. Thank you for your ceaseless work on behalf of the autism community.

Thank you for producing this response to the SciShow video on Autism. I hope you hear from them.