Why everything you know about autism is wrong

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I watched this TED talk last week and it really helped me understand disability in ASD in a totally different way. This video is a total must watch - a real game changer. The use of the term “disabled” as a verb and not as an adjective was mind blowing to me.

Some of the statistics she presents were also a bit alarming... Very eye opening!

Watch this video, and come tell us what you think!

“Why everything you know about autism is wrong”
https://youtu.be/A1AUdaH-EPM

I LOVE LOVE LOVE that video. Thank you so much for posting this.

As a person familiar with the statistics and the neurodiversity movements way of looking at autism I think she presented it very well.

How did you view autism prior to seeing the video?

Very much like she does.

I am very new to the labeled world of autism. I was diagnosed less than a month ago and my son was diagnosed a bit over a week ago. Even tho I’ve been living with my autism traits all my life, I never knew it all had a name. I was quite ignorant. For the past 2 months, since our assessment process started, I’ve been obsessively reading and learning all I can about neurodiversity, and it has been amazing.

The way she described how it is the environment is what disables a person, and not the person that is innately disabled, really blew my mind away. It helped me have a more positive view of myself.

It is common for a parent to find out they are autistic when they have their children assessed. Being “obsessive”, wanting to know every detail about a subject is an autistic trait referred to as a “special interest”.

Having gotten diagnosed at age 55 I understand the relief, the boost in self esteem, and having autism become a “special interest” that ofter occurs with a later in life diagnosis.

I felt the same as you when I was diagnosed five years ago Goldenmom. I was diagnosed at the tail end of 47.

Well, duh! I've been studying Autism for just 4 months and could see the gaping holes in past and current perspectives - how one-sided. Nice to have an expert in the field explaining it well! Thanks for the video!


@skibum, remind us how you feel now five years later? What are some of the adjustments you have made, or tools have you acquired?

I'm at the tail end of 47 and my report is due next week. My first thought for me is: can I have speech therapy to help me talk to NTs! When asked a question in a situation where I am supposed to "behave", I don't know how to talk without being a "fire hose" or else I am afraid I would be condescending or miss the point, so I am too often mute and just smile. Example: What do you do? I could explain some of the 100 things (my style) or I could say 2-3 things but which and in what way (another style)?

Thank you for asking. I want to take some time to really put together a good answer that can be helpful to you. I will come back this evening or tomorrow when my schedule clears up a little bit. I don't want to answer this rushed.

To me this seems more of an aspie thing. Which is fine because there are a lot of struggling aspies out there. But the struggles of someone who is significantly more autistic go a lot deeper than problems with social interacting. For me that's lower on the list than other things that autism keeps me from being able to do, and the problems that it causes for me.

Ezra, I am curious about your situation. Are your struggles mostly from Autism or from the comorbids that you have? Is dysphraxia part of the Autism or is it a separate thing that you have with Autism?

The "social model of disability" always ticked me off. I'm disabled in ways that have nothing to do with society or the environment.

I think that it is also important to understand what problems with social interactions actually means. I don't think that people can actually understand how deep and how impairing that can actually be. Yes, there are people on the Spectrum who are just socially off and they manage to do ok. That is true. But I think that just like with all areas that we struggle with, social interaction issues can affect some pretty mildly in some cases but for others, it can affect extremely severely to the point where it can actually become completely incapacitating. For some, social interactions are completely incapacitating all the time. For others it can vary.

Like in my case, there are times where I can socially interact very well for short periods of time, but other times when any kind of social interaction whatsoever can make me physically ill just by the mere presence of others around me. I can become so debilitated that I can be unable to function at all for quite some time afterwards. For example, I had a sports practice at Special Olympics on Saturday. There were two women in the area next to me and they are very expressive. Because they were so expressive on Saturday, I became physically ill from being near them and had to leave early and I was basically completely knocked out for the rest of the day and the next day. I had a five minute conversation on Tuesday that knocked me flat for three days. The first two days, I had difficulty breathing and walking. I had to literally stay home and rest and recover for three days just for one five minute conversation.

Social interaction has a lot of levels and struggling with it can have debilitating and sometimes crippling consequences. I think it would be really good to do a study on the different levels of social interaction and what they mean for us and how they can affect us. We should be careful to never just throw that around lightly. It can really cripple some of us even though we seem to be very high functioning on the surface.

I respect how you feel but just saying that those of us who are significantly and deeply disabled by society and the environment to the point that it is crippling us and significantly shortening our life spans, need the social model of disability to be recognized and acknowledged as a very real and important thing. It is important to understand, acknowledge, validate, and respect both the medical model and the social model.

That is interesting.

Both models of disability are valid. I think the issue comes when one of the two is ignored. For some people, the medical model may fit better. But we can’t deny that if the world was more accommodating of people’s challenges, they would be able to be more independent.

So the social model is not just talking about communication with other people. It’s about how society in general mainly caters to abled bodies and people with no sensory issues.