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Anonymous wrote:I have a moderate autism kid.

Talks, but that's it.

I get really annoyed when people tell me their kid is autistic and is attending a normal school without a shadow.

Why? I am no expert but I have substituted in a class specifically for level 1 autism kids and it’s very clear they need additional support but can also handle other classes and don’t need a shadow.

Because some of us have level 2 or 3 kids. My kid wouldn't get into that class

but what is annoying about it, or about parents telling you about it?

Do you honestly not understand?

NP and I don’t. My mom has cancer but I don’t get annoyed when others tell me their mom has a cold. They are both sick but no one thinks our experiences are very similar.

If your mom had pancreatic cancer and someone was complaining nonstop about their precancerous mole … yes you would be annoyed.

If we go with this analogy it is more like your mom has stage 4+ ovarian cancer and someone is complaining about losing their hair with chemo for stage one breast cancer. Both need treatment, one is more tragic.


Or someone who lost a baby 22 weeks vs someone who miscarried at 6 weeks.

There are plenty of things where one person is worse off than another. It should be okay for someone to vent no matter where they are on the spectrum.

Everyone can vent, but hopefully you understand why you shouldn’t cry loudly about your 6 week miscarriage to you friend who just had a 40-week stillbirth. Right? PP wasn’t saying you have no right to be sad or vent. She was explaining how she feels to be grouped with parents who have kids who are virtually NT.

Anonymous wrote:Autism is a spectrum, and people are at different places on it.

Only b/c the latest DSM said so. One day, we'll have better criteria and different names for things. Hopefully, we'll medical-ize some of it. For example, a bring chem test for adhd and a gene algorithm for HFA and another for people who will never live independently. (and billing codes will follow like Fragile X)

yeah, that ASD spectrum thing is BS. Always was.
Also, the ADHD+Dyslexia+high IQ is different from just one of the three.
Come to think of it, so is ADHD with a profoundly high IQ.

You know this is done by a committee right? Stupidest way ever to do it too. Really old white men mostly with a few younger (50s) ppl to round it out. I ran the Autism committee (as a staffer) for this last round when they did the spectrum and the disfunction among these ppl was intense. They should not have been allowed to name a child much less a group of disabilities.

I'm the parent of a dc who is dx with ASD and is considered relatively high-functioning (but would not have fit the criteria for Aspergers).

I do not even look at the social media and tik tok stuff. I respect the right of all autistics to express themselves, but I am my dc's parent and I decide things and make decisions as appropriate to my dc's age and ability. The only person's dx I have ever been involved in is my dc's, and I respect other people's dx however it is done (like, self dx or whatever). I certainly am never 'annoyed' with anyone...

Anonymous wrote:It’s crazy that the DSM is so influential on the pop culture that this is a real concern. You’d think we would have room to discuss the spectrum nature of autism in our lived experiences even if that doesn’t fit the billing codes.

I actually think the problem with a lot of social media posts about autism is that they don’t look closely at DSM criteria. I saw one that said something about associating rubbing your feet together in bed with autism. I assume it was just a throwaway joke but people watching it see that and think “omg i rub my feet together! I might be autistic!” And then they hear more and more another these manifestations of autism and self-diagnose. But if they would look at the DSM they would see that they only meet one of the diagnostic criteria in section B and you need at least two. They don’t understand that all the symptoms of autism are also symptoms of other issues. So if you can’t stand crowds but you don’t experience sensory overload you’re probably suffering from social anxiety and not autism.

I do think that the requirement that the social/communication impacts require support is a problem in that the same person might need support in one context but not another, depending upon the demands placed upon them. This combined with the fact that autism evaluations cost an obscene amount of money makes me understand why people self-diagnose instead of getting an official evaluation.

It’s crazy that the DSM is so influential on the pop culture that this is a real concern. You’d think we would have room to discuss the spectrum nature of autism in our lived experiences even if that doesn’t fit the billing codes.

Anonymous wrote:Getting rid of the Asperger’s diagnosis and putting the moderately quirky kids under the same umbrella as profoundly disabled autistics has done a huge disservice to the community. As a parent of such a child, our voices and experiences have been totally erased. So many extremely high functioning people feel they can speak for my child, our family, and me as if they can relate to my child’s experience at all. They can’t. I cannot stand it.

Both pdd-nos and Asperger’s were considered to be under the Autism umbrella before the latest DSM. They were considered sub-types. Having both under the Autism umbrella was key to get the critical mass of activists to change laws to get Autism covered by insurance. Prior to that, it was very difficult to get services once an autism diagnosis was made. As a result, many doctors did not formally diagnose Autism unless it was severe so that patients could get services covered. Once the laws changed, it became easier to get services with the diagnosis.

I believe there is room for everyone.

Anonymous wrote:Getting rid of the Asperger’s diagnosis and putting the moderately quirky kids under the same umbrella as profoundly disabled autistics has done a huge disservice to the community. As a parent of such a child, our voices and experiences have been totally erased. So many extremely high functioning people feel they can speak for my child, our family, and me as if they can relate to my child’s experience at all. They can’t. I cannot stand it.

How has this happened? What are some examples?

Autism is a spectrum, and people are at different places on it.

I agree we have to split up the diagnoses. I’m autistic as is my daughter and my cousin and we have a hugely wide range of how we function in the world. My daughter is the youngest and early in her life I think everyone would’ve pegged her as the highest functioning of the bunch. That’s no longer true. She is now unable to go to school - working on homebound services. Anxiety is a main issue now as well as sensory noise/light things

Anonymous wrote:Getting rid of the Asperger’s diagnosis and putting the moderately quirky kids under the same umbrella as profoundly disabled autistics has done a huge disservice to the community. As a parent of such a child, our voices and experiences have been totally erased. So many extremely high functioning people feel they can speak for my child, our family, and me as if they can relate to my child’s experience at all. They can’t. I cannot stand it.

Thank you
Same here

Honestly if there was a hashtag that was targeted at getting change in the dsm I’m sure it would be possible to get some traction and attention

Anonymous wrote:Getting rid of the Asperger’s diagnosis and putting the moderately quirky kids under the same umbrella as profoundly disabled autistics has done a huge disservice to the community. As a parent of such a child, our voices and experiences have been totally erased. So many extremely high functioning people feel they can speak for my child, our family, and me as if they can relate to my child’s experience at all. They can’t. I cannot stand it.

Agree. It makes no sense to put "high functioning" what ever that means with kids in the same category as ones like you describe but they did it for insurance reasons probably as insurance will cover services for autism but not other things.

Getting rid of the Asperger’s diagnosis and putting the moderately quirky kids under the same umbrella as profoundly disabled autistics has done a huge disservice to the community. As a parent of such a child, our voices and experiences have been totally erased. So many extremely high functioning people feel they can speak for my child, our family, and me as if they can relate to my child’s experience at all. They can’t. I cannot stand it.

Anonymous wrote:I have a moderate autism kid.

Talks, but that's it.

I get really annoyed when people tell me their kid is autistic and is attending a normal school without a shadow.

Really? My kid is like that, but it’s because they mask very well at school. At home, they’re a mess. Last night they had a bad meltdown and hit me so hard my glasses broke.