New study finds online self-reports may not accurately reflect clinical autism diagnoses. Adults who report high levels of autistic traits through online surveys may not reflect the same social behaviors or clinical profiles as those who have been formally diagnosed with autism spectrum disorder.

[u/mvea]

https://www.psypost.org/new-study-finds-online-self-reports-may-not-accurately-reflect-clinical-autism-diagnoses/

[u/newsnewsnews111]

My son cannot communicate beyond basic needs. That is partially why he was diagnosed under the previous criteria.

But clearly the answer to help autistic people is just to ask them. Do you see how you have already dismissed my son’s autism?

Please try caring for a non-communicative person with intense sensory needs who needs help with all activities of daily living and must be supervised continuously for several years. I know stress and anxiety and burnout.

[u/PsychologicalLuck343 → u/newsnewsnews111]

I'm not an expert in severe autism, but i was reading that a lot of non-verbal kids can learn to communicate in other ways, like even by text.

Obviously, we can't ask most non-verbal kids what they need, but the great majority of autistic people would be happy to give input as to their needs.

I'm sorry that caring for your child is so difficult. It shouldn't be made so hard to do, I do wish and will fight for caregivers like you to get the needed support to have a more humane schedule. Well-meaning people who are trying to do the right thing, we wear them right down to the nubbin' in this country and it's not right. We should be a more compassionate nation, not a bunch of jerks who think everyone should work every day until they drop dead of exhaustion.

[u/newsnewsnews111 → u/PsychologicalLuck343]

Thank you for your kind words.

My son has been in speech therapy for many years. It was the first one we tried when we were waiting for his autism evaluation at 18 months old. Last fall we took a break from two years of private speech therapy focused on AAC with no progress. He also has one for school.

He is not bothered by his lack of communication and doesn’t get frustrated too often. I do my best to figure out what he’s asking for but he has trouble answering even simple questions. I’ve only been apart from for two nights. We sent him to a weekend special needs camp to try it out last year. He did fine so that’s good news for the inevitable day that we cannot care for him. I’m hoping to try a longer one eventually but it’s a lot to figure out.

And care for autistic people like him is difficult to obtain and generally not good quality. Plus he cannot tell us if there’s a problem. He cannot mask and has very different needs from those who can. This is the autism no one talks about anymore.

[u/PsychologicalLuck343 → u/newsnewsnews111]

How old is he now? I'm sorry this is a tough row to hoe. I wish I could say something helpful, but I understand that it's a frightening position to be in. Ì hope things improve for you both soon.

[u/theslothist → u/newsnewsnews111]

You literally do not have autism in anyway, you neither have the personal experience, nor the medical experience. What basis do you have for arguing that the Autism criteria are too wide now? Are you under the impression that there was previously all this support for autistic people and now theres not because autism spectrum disorder was expanded to include what used to be call Asperger's syndrome and other related concepts? Thats not what happened. 

To be honest, in the autistic community, people like you are a meme and not a good one. You tend to enter our spaces and try to dominate them and tell us how our own conditions are or aren't legitimate because your kids have it so much worse. 

[u/newsnewsnews111 → u/theslothist]

Yes I am indeed under the impression that before the autism definition was expanded, my son’s type of autism was supported by autism groups and research. I was there before it was changed. There were groups for Asperger’s and I knew those were not for my son. It was similar to autism, but had different needs.

Nowadays, autism can mean many things, most of which do not include him. Even though my son is completely disabled by his autism, calling it a disability isn’t allowed by those verbal enough to demand it.

I am not denying or minimizing anyone’s struggles. We attend many events and programs and I do all I can to learn. We’re around autistic people of different levels and their families. We pretty much only socialize with other special needs families.

But I do not think the DSM-V changes and other efforts to expand or change the definition of autism were better for those like my son. They are less visible, less considered, and treated as outliers in their diagnosis now that the spectrum has widened so much.