A lot of folks are reading the entry questions for our associated group and seem to misunderstand the last question: “Do you understand why functioning labels (including Asperger’s) can be harmful? If no, are you willing to learn?”
This does not mean:
- Labels are harmful
- Diagnosis is a label
- Diagnosis is harmful
- Identifiers are harmful
- “Autistic” is harmful
- “Autism” is harmful
Diagnosis can be an important tool in getting what you need as an autistic person, in the way of accommodations, but it can also be a hindrance (which is addressed in our Self Diagnosis FAQ) and that decision is a very personal one to make for yourself or your child.
Using the identifiers/labels “Autistic” and “Autism” are important and necessary. We are all about educating, advocating, and celebrating autistics, after all.
This does mean:
- “Aspergers” is harmful
- “Aspie” is harmful
- “High functioning” is harmful
- “Low functioning” is harmful
- “Moderate” is harmful
- “Severe” is harmful
- “Mild” is harmful
- “Level 1/2/3” is harmful
Functioning labels are descriptors of alleged functioning based on outward perception of the person by non-autistics. These are harmful because they are completely inaccurate and arbitrary.
But most of all, functioning labels are harmful because they are used for one of two things:
These labels are used to deny agency or independence to autistic people:
- “Low functioning”
These labels are used to deny supports and accommodations (and even disability payments) to autistic people:
- “High functioning”
- “Level 1”
“Moderate” & “Level 2” can go in either direction, depending on a few factors.
Functioning labels have been repeatedly found by autistics to be unhelpful and harmful, and researchers have finally gotten on the same page. Functioning labels hurt autistic people.
To expand on the uselessness of functioning labels and levels for autism:
Levels and functioning labels were created with the intention of making it simple to address the needs of someone based on perception by an outsider. This idea is inherently flawed, but even if it weren’t, there’s a deeper issue. It is much simpler to say the specific support needs of the person and address them than to generalize that they need “a lot” or “a few”.
Saying what each autistic person individually needs is more important and useful to everyone than giving an arbitrarily decided upon grouping based on your perception of their outward behavior.
So how do they determine these useless levels (and how did they formerly determine these useless functioning labels that are now no longer diagnosed)?
Someone who has minimal knowledge of autism, and is not autistic, looks at the outward/overt behaviors of the autistic person and makes a determination based on how stereotypically autistic they appear outwardly. This means that nonverbal autistics are almost always grouped into “low functioning” or “level 3” because they do not speak, which makes them appear more autistic to an outsider. We know that speech and communication are not good indicators of a person’s ability to function (and we know that nonverbal does not mean they cannot communicate.)
What they are measuring, which they often do not realize, is the autistic person’s ability to “mask” (masking is something that almost all autistic people do, consciously or subconsciously, which is essentially to hide your autistic traits to appear outwardly more allistic.)
If someone speaks, makes eye contact, and does not do obvious stimming like hand flapping during the limited interaction they have with the evaluator, they will likely be classed as “level 1” or “high functioning” because they are masking quite a lot.
It is harmful to base these arbitrary categories on outward perception of masking because that does not show what supports the person truly needs. Someone who is verbal may still need more supports in other areas than someone who is nonverbal, for example. I think I’ve talked your ears off enough, I’ll leave it at this.
Asperger’s specifically is much worse than just a functioning label.
Asperger’s Syndrome was a functioning label featured in the DSM for 19 years (1994-2013) and has since been removed because it is inaccurate. Now, the only autistic diagnosis in the DSM is Autism Spectrum Disorder. In some countries, the ICD is used instead of the DSM for diagnosis, and Asperger’s is still currently listed in the ICD. However, it is being phased out in the newest version which will debut in the next couple years. It was meant to separate “high functioning” autistic people from their other autistic peers.
Even if you were diagnosed with Asperger’s, it is not okay to use that term.
This issue is incredibly important to us and to the autistic community as a whole, and we will not allow deliberate ignorance of this issue. Using functioning labels or “levels” of autism is harmful and never acceptable. It is not acceptable or allowable, it contributes to the othering of and harm of autistic people, and we do not allow it.
To get into the nitty gritty of why Asperger’s is so awful, though, we have to go beyond the functioning label aspect.
Hans Asperger, whom Asperger’s was named after, was a Nazi doctor.
During World War II and the Holocaust, Asperger was essentially responsible for determining which autistic people were “smart” enough to be spared their deaths and torture and which were not so lucky.
He looked at the outward characteristics of the autistic people in concentration camps and hand selected which ones would be exploited to further the Nazi cause (by helping develop machinery/etc) from those who were deemed unhelpful and then sentenced to death or torture and experimented on.
(for those unaware, disabled people were largely experimented on and murdered during the holocaust.)
And I’ll end with some examples and further explanation:
To expand on why functioning labels are so terrible…
They are entirely arbitrary and do not hold any meaning. Someone labeled (incorrectly) as “high functioning” may have similar support needs to someone labeled (incorrectly) as “low functioning”, or any other variation.
The Autism Spectrum is not a linear sliding scale from “extremely/severely autistic to “normalcy- it is an abstract collection of traits that is meant to show that autism looks different on all of us, despite common traits.