Autism & Functioning Labels

This is a blog post I’ve been looking forward to posting as it seems quite a few people in my circle are still misinformed. In this post, I’ll be talking about functioning labels and the term Aspergers and the history of it.

Functioning labels are very harmful and very inaccurate. When people hear high functioning, they assume that person functions well with no obstacles or struggles. When people hear low functioning, they assume that person can’t function enough to be a part of society. Let me explain why that’s a very harmful perspective. I’m what others would see as “high functioning”. You assume I’m fine right? Well, I’m not!

High functioning is associated with the term Asperger’s syndrome which is no longer recognized in the DSM-5. Aspergers was a high functioning form of autism in the past. It was removed back in 2013 and is now called Autism Spectrum Disorder. To be considered high functioning, you have to be verbal and you have to have an IQ of at least average or above average. If you really think about it, doesn’t it sound ridiculous? People assume I’m able to function just because I can talk and my IQ is average. As if talking is the only way to function well. Then someone who is considered low functioning, who may not have high support needs but can’t talk is infantilized. Their independence gets stripped away from them. Caregivers want to baby them because they’re “low functioning”. Then they have the audacity to be shocked when they notice that person doing something they never saw them do before when they could probably do a whole lot more if given the opportunity.

I have high support needs but because I can talk 98% of the time, I’m not seen as severe so therefore never was able to get the help I needed. It’s not fair that I was denied services just because I’m verbal.

People think that the autism spectrum is a linear line that ranges from less autistic and more autistic. That’s not how the spectrum works. Here is a picture that perfectly illustrates what the autism spectrum can look like.

Image is from Autism_sketches on Instagram

The terms high and low functioning and Aspergers are all outdated. It’s outdated for a reason. Let me tell you the history of Asperger’s syndrome.

Asperger’s syndrome was first recognized back in the time of the Holocaust by Hans Asperger. He saw some autistic traits and difficulties with social and communication skills in some children who had normal intelligence and language development. He fought to save the high functioning children and put them to work while the low functioning were killed. I personally do not want to be attached to such a horrific history by associating myself with Asperger’s syndrome. It’s very ableist! Now autism, Asperger’s and other pervasive developmental disorders are under the umbrella of Autism Spectrum Disorder. In my opinion, that’s one step in the right direction but there’s still a lot of work to be done in order for all autistic people to feel included and accommodated.

We need to normalize just asking what that autistic persons specific needs and accommodations are without making them feel like they’re less or more deserving than the next autistic person. Gate keeping is wrong and disgusting and I feel sick to my stomach when people in my circle undermine my struggles. When I tell people I’m autistic, some reply with “oh Asperger’s…”. NO, I’m autistic, that’s it! I’m not “better off” than the next autistic person who is non verbal just because I’m verbal (which I do have non verbal episodes when I’m severely overstimulated and not able to regulate it). And they’re not less fortunate just because they can’t talk. With the right accommodations, all autistic people can thrive and be happy. So please don’t ask me or other autistic people if we’re high or low functioning. It doesn’t help us at all. Ask us what can you do to help us.

I can’t stand when autism moms/dads attack me on social media talking about “you don’t speak for my low functioning autistic child”. To be quite honest, I do speak for the entire autistic community. No, your child can’t speak, but if you listen to what I have to say as an autistic person, you may just learn something new and find ways to better help your child who can’t tell you what their needs are. Stop trying to talk over us! What better way to learn about autism than to hear about it from an actual autistic person? I’m speaking from my own personal experience. I’m autistic! You can try to break it down into a functioning label or an outdated diagnosis, but just know that you’re doing so much harm by doing that. I really hope someone was able to retain the information from this post and learned something new. If you’re in my circle, please stop saying the words Asperger’s and high/low functioning around me. It’s very triggering for me and honestly disrespectful. I do have my struggles and I have high support needs that I wish were accommodated a long time ago. Don’t downplay my struggles!

2 thoughts on “Autism & Functioning Labels

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