“We decided that our mission was to advocate for civil rights and self-determination for all autistic people, regardless of whether they were labelled ‘high’ or ‘low’ functioning and regardless of whether they were able to participate independently in our language-based network”
– Jim Sinclair, “Loud Hands: Autistic People Speaking”, page 30
To accomplish our mission to make the world safe and equal for neurodivergent people, we must consign “functioning labels” to our miserable past, and march forward into a future where all autistics see each other as equal and raise up each other.
We have heard terms to describe us such as “high-functioning”, “low-functioning”, “Autism Level 1”, “Autism Level 3”, “Aspergers”, and “severe autistic”. In many cases, we have internalized these terms and used them to separate us from other autistics. These terms are all a product of ableism, and serve to divide us so that we could not advocate together and agitate for the structural changes we need to have equal status in society.
In decades past, a scale was created by the medical community to define autism as a “spectrum”. On one end of a scale of functioning and independence, are the “high-functioning autistics”, the “Aspies”, the “Aspergers”, and the “Level 1 autistics”. When an autistic person requires few resources in order to meet their basic needs, communicates with spoken language, can hold a typical job, and can pass for a typical person, they are placed in this classification. On the other end of this scale are autistics who do not communicate with spoken language, require increased social support and care, and who wear their autism on their sleeve, the “low-functioning autistics”, the “severe autistics”, and “Level 3 autistics”. But this scale is inaccurate and harmful; it fractures us from each other.
Imagine that we classified Black people on a scale of how light or dark their skin was and referred to them as different classifications based on how typical people perceived their appearance, or we classified LGBTQ+ people based on how strongly their sexuality and gender expression deviated from heterosexuality and heteronormativity. It is highly demeaning, and promotes segregation rather than diversity. It places the most typical people, the white and heterosexual/heteronormative people as the healthy and normal people, and everybody who is not in that classification as sick and unhealthy. Racism, homophobia/transphobia, and ableism all come from this perspective that what is most typical is most healthy, and everything that deviates from the typical is unhealthy. So it is too with these classifications of functioning labels, “autism levels”, and naming us after doctors who “discovered” us (we were always here) and in many cases abused us.
Many of us have had this ableism imprinted on us, and we have internalized it. Many autistics still refer to themselves as “high-functioning” or “Aspies” to receive a higher status in typical society. We have to stop this. We have to stop playing into the hands of ableists.
Jim Sinclair noted how functioning labels had been used to discredit their input at autism conferences. They noted that people who opposed neurodiversity would:
1. If at all possible, deny that the persons…are really members of the group to which they claim membership (deny that the person is autistic)
2. If no reasonable doubt was presented that they were autistic, to say that they were the exception (too high-functioning) and could not speak for the majority
3. Appeal to prejudice; remark that it is dangerous for an autistic person to advocate for change, as disabled people cannot know what is best for them and require a typical, abled person in order to be their voice and speak on their behalf
When we regard these barriers to agitating for change, we see how functioning labels have hindered our cause. People classified as “high functioning” are unable to penetrate the conversations that ableist authorities are having about us without us, and people classified as “low functioning” are having their functioning level used to justify dehumanizing and objectifying them. “High functioning” is used to deny our voice. “Low functioning” is used to deny our capacity to know what is best for us.
The autism spectrum is not a scale of “severity” but a full expanding spectrum of abilities, disabilities, and needs. Each one of us knows what we need, and we each have the ability to communicate our needs in our language. The world needs to be fluent in more languages. We must stop referring to the scale of difference from typicality, and instead refer to the true Spectrum which extends in all directions.
It is the work of all autistics to challenge our own internalized ableism, and then work to raise up all other people on the Spectrum. We cannot do this divided; we will only be able to create that world together.