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]

Have you been around people diagnosed with autism under the DSM-IV or III? That’s my 18yo. He is not ‘neurodiverse’. He is developmentally disabled.

The definition of autism has been stretched so far out of shape that’s it’s practically useless. The above comment is peak example of this.

The DSM-V was a huge mistake, opening the diagnosis for too many who might have something but it’s not autism.

Now I have to call my son’s type severe autism, and they are pushed to the side in the public discourse and research. Who speaks for those who cannot communicate?

[u/PsychologicalLuck343 → u/newsnewsnews111]

I would just add to this that those of us who have the stress and anxiety caused by autism suffer stress that most people don't understand. It's not how disabled we look, or whether or not we can speak, it's becoming ill and non-functional in many circumstances allistics do not recognize as difficult and don't understand why (edited for clarity).

It's not just that we can't do this, or can't do that intellectual thing, it's that we feel horrible and irritated beyond reason in less than ideal circumstances that allistics just don't think about and don't realize are hurting us. Just because someone appears normal, doesn't mean they're not suffering.

And when they decide how severe someone's autism is, they don't decide based on that person's pain or dysfunction, they decide based on how high their support needs are, that is, the help that they are observed to need.

If answering a questionnaire can tell them who is and is not autistic, why can't they simply ask us what we need and how much overstimulated we are?

[u/newsnewsnews111 → u/PsychologicalLuck343]

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.

[u/DragonBitsRedux → u/newsnewsnews111]

I agree completely with your assessment and I really appreciate your feedback.

I apologize if I came across as insincere or belittling those with severe autism-related challenges.

I *know* I am fortunate.

I'm 60m ASD/ADHD, only recently clinically diagnosed, batteries of tests and interviews,

I scored as significantly autistic but with a very low degree of stereotypical sensory issues.

Yes. There are posers and fakers. There are folks who will take advantage of any chance to be jerks or defraud welfare or worker's comp.

I can't help that but I'm doing my best to guide folks with 'moderate needs' better understand life isn't fair and -- even if the law says their needs must be accommodated -- that's not how life works in general and even admitting you are autistic as an adult can have really weird and unexpected consequences and/or reactions.

Often these are folks have spent their lives 'smart but dumb' while doing their best to not end up on public assistance.

I do feel fortunate in that folks of all ages facing neurodiversity-related challenges respond really well to this 60-year-old 'high functioning' autistic man who survived a hostile corporate work environment saying to them "life is hard and chances are good you are going to have to make the accommodations on your own because saying you are autistic will often make things worse."

My own child was like "But they *have* to give me accommodations. That's the law!"

"Yes it is the law but that's rarely how it works out. We jumped through the hoops to get your school to officially recognize your medical needs but as you are seeing not every teacher will respond positively. It is important to pick your battles."

I'm old school. As I like to say "if we came home bleeding, our parents didn't sue, they yelled at us for getting blood on the neighbors deck!"

I prefer -- those who can -- enable themselves.

Again, I appreciate your feedback.

Solutions need to embraced the entire spectrum of folks with autism and I'll do my best in the future to include your perspective.

I'm a depression survivor and my writing about depression became 'more accurate' and well considered with time.

Again I'm sorry if I came across as abrupt. I am autistic. I get passionate. Part of the reason I was pretty sure I was autistic was how often what I said came across all tangled up to the point I'd get The Look on an almost daily basis. "WTH? Why would you say something like that?"

I tend to get very frustrated but I want to *learn* from my mistakes and missteps.

[u/newsnewsnews111 → u/DragonBitsRedux]

Thanks so much for your thoughtful reply. Your earlier comment makes complete sense knowing the context.

I’m sure you, too, often find the label inadequate to explain the various conditions under the autism umbrella. So much is unknown, most treatments are ineffective for many, research into causes is mere correlation, but the struggles remain.

I’ve also seen the reality for those who are more in the middle. It’s not always clear to others that the needs are still there and people can be dismissive. It’s sometimes a weird advantage that my son is obviously disabled. Though, trust me, I’d give anything to be able to communicate with my son better.

Again, thanks for understanding. I feel like the autism world has changed and left my son behind so I try to let others know that we’re still here.

[u/sprunkymdunk → u/newsnewsnews111]

Same thing happened with ADHD in the early 2000's and now for mental health. A growth in awareness (very good) coincided with a growth in over diagnoses (bad), often conducted by people with minimal formal medical education. 

The main problem being, as you've experienced, that those truly in critical need are crowded out by the majority of people who can claim to be on the spectrum, somewhere.

[u/theslothist → u/sprunkymdunk]

Where in the world can people be diagnosed with ADHD by someone who is not a medical doctor? That is not the procedure in Canada.  What basis you have for the idea that there is a critical need for someone extremeADHD sufferers that cannot be met because too many people are diagnosed with ADHD?

[u/sprunkymdunk → u/theslothist]

Why yes, there are differences by country. In the USA, for example, ADHD diagnosis is delegated quite low. The ADHD panic was early 2000s. Mental health is what I have personal experience with, in Canada, and certainly relevant in most other places. I have better care as I'm in the military system, but I still can't see the psychiatrist or even a psychologist due to demand.

[u/newsnewsnews111 → u/sprunkymdunk]

Thanks for your understanding and perspective. All good points