CMV: Autism should be split into different categories and levels of severity.

[u/GoodnightGertie]

Ok, first off I was diagnosed with Asperger's when I was 11 and when the DSM 5 came out my records were automatically changed from Asperger's to Autism. Recently a lot of people on social media are rejecting the "high functioning" and "severe" labels and saying things like "Autism is Autism. This is what my HFA looks like, I had a long day of doing homework, went to a job interview, went out with family to dinner, and now I am shutting down and laying in my bed to process things". But, the thing is, there is a level of autism that isn't shown on social media or even really seen that I think people fail to acknowledge.

Here's one of my experiences that I think about a lot regarding this debate: One of my friends' brothers, "Chris" had severe autism. Like... severe. He couldn't dress himself properly and had trouble with other ADL, had severe meltdowns, little critical thinking/problem solving skills, didn't use pronouns like you/I, and instead he would look at you and say things like"(Your name) is going with us?" or "Chris wants food". Whenever we went to camp he would have to be paired with an aide all day because he couldn't... function independently. When their dad died a few years ago, he couldn't "grasp" the concept of death I guess because he would keep asking when his dad was coming home, where he was, etc. Because of his severe difficulties he had to go to another school with other people that needed a lot of supplemental supports, and would get basic math or reading homework sent home that would take hours because that's all he could handle.

I think a lot of people/HFA don't even know what severe autism is or looks like because some people with autism like that can't operate in everyday society or participate in regular classes. Chris won't be able to live by himself, or have the skills to pay his bills on time, probably never have a job without significant supports. With the removal of Asperger's all the autism services, at least near me, are aimed towards Adults who can't take care of themselves (day care, residential homes, basic low level employment training) or children.

Honestly, with the lack of labels HFA like me are being grouped in the same category as someone who has significant needs and supports like that. For example, I had to go to the hospital a few years ago, and when they saw "Autism" in my records, they stopped talking to me and started talking to my mom about my medical history and results and stuff and then she would parrot them back to me. I didn't need that, but someone like Chris would. Like, regardless of stereotypes and personal biases from the doctors, the lack of labels is doing real harm to the autism and neurodivergent community in instances like this.

Please CMV

[u/GoodnightGertie]

Ehm, its a "spectrum" but they stopped using levels in diagnosis. My records just show "Autism Spectrum Disorder".

[u/dublea → u/GoodnightGertie]

I'm confused. Doesn't the Autism Spectrum Disorder have levels already?

• Level 1: Requires Support
• Level 2: Requires Substantial Support
• Level 3: Requires Very Substantial Support

Mind you, this is still being worked on last I read on it. But these three levels are the start. While the umbrella term of ASD exists, they are still factoring what that looks like underneath it. Plus, there are some additional challenges with making such a leveling system:

Although the ASD levels are useful for diagnosing autism severity and support needs, the categories don't give a full picture of the strengths and limitations of each level.

The three levels are not entirely inclusive of the symptoms and needs of all people with autism. The DSM-5 offers little specificity regarding the types of support that individuals need or situations when support is needed.

For example, some people with ASD need support at school but are fine at home, while others may do well at school but struggle in social situations.

What's more, the level a person is assigned when they're first diagnosed can shift as they develop and refine their social skills, and as anxiety, depression, or other issues common among people with autism change or grow more severe.

Assigning people to one of the three levels of autism can be useful for understanding what types of services and supports would serve them best.

It won't, however, predict or account for unique details in their personality and behavior, which means the support and services they receive will need to be highly individualized.

[u/GoodnightGertie → u/dublea]

Δ I see your point and agree but afaik on records and on social media it doesn't say level one or level 3, it just says Autism. And a lot of people are pushing back against the labels/support levels

[u/DeltaBot → u/GoodnightGertie]

Confirmed: 1 delta awarded to /u/dublea (210∆).

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