[davidscolgan]

I have autism and only discovered it two years ago at age 33. I have been intensely researching it.

The book Neurotribes presents a very in-depth picture of the history of autism and the research and theories for the past century.

This is not saying that autism is not real, that it is not a thing to understand, or something that should not be researched. It is only saying that the idea that autism is On The Rise in a terrifying way, that it is something to be feared, is misguided.

As this article says, and as the book Neurotribes explores in depth, autism used to have much more strict criteria for diagnosis. Connor, the leading researcher of autism for much of the 20th century, was convinced autism should only cover the most severe cases, and he did not like the spectrum idea. As time went on and it was realized that many more persons may have some aspect of autism even if it isn't extremely severe led to the DSM making the criteria much looser. The authors of the DSM particularly noted that this may make it seem like the prevalence was increasing when in fact it was simply more widely diagnosed.

The reason for caution of using the term "autism epidemic" is that it spooked many parents into thinking there was a horrible plague afoot, and that it needed to be cured.

My current understanding of it in myself and wider society is that it has always been around, that those on the spectrum hold an important place in society, and that rather than finding a cure (if this is an epidemic) is more important than understanding autism and advocating for services to help those who have autistic children.

This absolutely does not seek to discredit the indeed heroic efforts many parents have gone to to support their children, in fact by being more precise about what is happening the hope is that autistics like myself can have even better outcomes.

[larve]

I didn't want to engage someone apparently so angry in that direction, but since you took time to respond kindly and share you experience, I will add my comment too.

The centering of autism as being something happening to "the parents" and framing autistic children (or adults, for that matter) as being unable to form human connections or acquiring basic skills is something a large part of autistic people are pushing against.

The #actuallyautistic tag on social media is a good way to find autistic people's experiences regarding that matter.

Something I wish was more widely known is what is being studied as the "double empathy problem", which frames communication issues between autistic and non-autistic people as a two-way misunderstanding, rather than autistic people being handicapped or incapable of social communication.

[tboyd47]

I am skeptical that all of those people on Twitter are actually autistic and not just self-diagnosed.

Despite having a clinical definition and a defined diagnostic process, autism has become sort of an identity that people celebrate and use in a casual, colloquial way.

People have told me that I could have been diagnosed as autistic because of how I act as an adult, but I didn't have developmental delays. I had a pretty normal early childhood. So I don't identify as that.

So perhaps it's better for parents to leave the term "autism" for people who wish to self-identify that way, and using a different term to describe the thing that happens to their children. Too often they end up clashing over this word, and I don't think it's healthy or constructive for either side.

So maybe the authors of the paper were right, but not in the way they wanted to be.

[larve]

As a self-diagnosed autistic (dodged a diagnosis as a kid, in hindsight quite good seeing how france in the 80ies had some pretty rough approaches to it) that came to that conclusion at age 40, believing for most of my adulthood I wasn't because "look how many friends I have", the reason people seem to "celebrate" it is that it finally gives context to a lifelong suffering and feeling of alienation.

It's not like it will make your life any easier, since accommodations are scarce to come by, an official diagnosis can come with significant discrimination, and if you made it this far, it doesn't feel like a great way to spend your resources. It however allows me to not only realize that my experiences are shared, but to finally be able to learn strategies and find therapists that are helpful, vs actually aggravating the situation (say, framing you as argumentative and arrogant or schizoid or whatever, when what is going is mostly a communication mismatch).

However, my nephew got diagnosed and it allowed him to find a school that accomodates his cognitive style. He's gone from puking every day and turning into a shell of himself to being back to the bright and happy kid that he is. While in some ways I'm sad I didn't have that opportunity, it makes me so happy to see that the field has made progress exactly by widening its diagnostic net.

[tboyd47]

> It's not like it will make your life any easier, since accommodations are scarce to come by, an official diagnosis can come with significant discrimination, and if you made it this far, it doesn't feel like a great way to spend your resources.

These reasons and others are why I do not believe the rise in autism is due to a change in diagnosis. There are very few incentives to getting a diagnosis and so many obstacles. It also doesn't take into account that many autistic children have their diagnosis dropped as adults.

[larve]

Diagnosis criteria have definitely gotten broader, and plenty of adults go through with it (I probably will) just to not feel self-conscious about the "self-diagnosis" thing. There is a lot of upsides to framing yourself as autistic, as it makes navigating the world so much easier. These better diagnosis standards, along with better accomodations for autistic people (vs just brutally forcing them to conform) is what made life so much better for my nephew, for example.

[tboyd47]

Thank you for sharing your thoughts despite me clearly having my feathers ruffled a bit.

Do you mind sharing, if you were formally diagnosed with autism? And did you have any developmental delays as a child? If so, how did your parents deal with those?

Based on what I've seen from friends and family with autistic children, and how their lives and family dynamics diverge so drastically from the established well-trod tracks of parenthood traveled for centuries, looking incomprehensible to outsiders, I don't believe it's possible for the current rates of autism to have been constant throughout history. There would have been some similar phenomenon to autism parenting known to us (though not necessarily by that name).