You Are Like My Child

[image description: a simple chalk drawing of a rainbow on rough, dark grey concrete]

Autistic people should be self-determined in choosing labels and identifiers that feel right to us and that reflect our understanding of ourselves within our cultures, communities, and the world.

Autistic people should also be helped to understand that the labels we choose can communicate information about our individual ethics.

The Asperger’s label is being abandoned globally. There are autistic adults who identify strongly with this label, or variations such as “aspie” or “aspergian”. Right now, this topic is the subject of heated discussion in the Autistic Community.

I am an adult who was diagnosed with autism back when Asperger’s syndrome was still in the DSM. I was also an early, precocious talker who did-not have co-occurring conditions present in childhood, and a different psychologist may have chosen an Asperger’s diagnosis for me.

My four year old child, however, would never have been considered for a designation of Asperger's. He is non-speaking, with very high adaptive support needs.

I have no grief over my child’s presentation of autism, and I never have. He is funny, charming, persistent, affectionate, easy going, curious, sassy, and interesting. I love him because he’s my kiddo, but I also like him very much. I enjoy spending time with him, I like what he’s added to our family, and I wouldn’t change a thing about his neurology.

One of the coolest things about being an autistic parent of autistic kids is getting to welcome them to our community. Being part of a multigenerational Autistic Community is an incredible experience, and we are lucky to have a thriving local one that we engage with on and offline.

We also have the greater, global Autistic Community, and passing this legacy down to my children is a privilege I am thankful to have, a privilege past generations of autists were not generally able to access.

When members of these communities use the label “Asperger’s” to identify themselves, my stomach tightens a little. I try to assume good intentions and ask neutral, exploratory questions about their choice. Every once in awhile, the person is very new to autism, and Asperger’s is the label a clinician gave them, and they don’t really know much more than that.

However, that’s usually not the case. Not here in the United States, where Asperger’s hasn’t been widely diagnosed in more than half a decade. Usually the questions lead to predictable answers like:

• there are different presentations of autism, and it’s okay/useful to identify with a specific presentation
• the Asperger’s label helps me find people who are like me

I want to unpack these answers.

It’s true that there are different presentations of autism, but it’s untrue that there are just two presentations of autism, called autism and Asperger’s. Every person who identifies with the Asperger’s label does not have the exact same presentation of autism, that’s just silly. So, when people say they specifically identify with the “Asperger’s presentation” of autism over the “Autistic presentation”, what does that mean? That they identify with autistics who have communication differences? Nope, that’s all of us. Social differences? All of us. Differences in processing information and sensory stimulus? All of us. Difficulties with executive function and emotional regulation? All. Of. Us.

So what is this “Aspie presentation”? Here’s what people won’t say. Asperger’s is socially understood as autism, but you’re smart and you can talk. Being “smart” (having average to high IQ) and being able to prove your intelligence in typical ways is valued and privileged in mainstream culture. Being able to communicate in the most typical way—by speaking with your mouth—is valued and privileged in mainstream culture.

Use of the Asperger’s label communicates that a person wants their neurodivergence acknowledged, but wants to signal that they’re more valuable then other autistics, and they want to take full advantage of any privilege available to them within a harmful hierarchy of disabled humanity and worth. It is very possible for people to use this label without understanding that this is what the label communicates. The impact can occur without the intention. You might be reading this, thinking, “I use Asperger’s, and I definitely don’t feel this way.”

Okay. But, please take a moment to consider what about the label “Autistic” is difficult for you to identify with. Write down your answers. Think about your answers. Then reread the three paragraphs above. See if anything shifts.

As for “helps me find people like me”, I’m not even totally sure what that means. It doesn’t seem to mean people of the same age, gender, geographic area. It also doesn’t seem to mean people with the same interests, or who enjoy the same activities. It can’t mean people with sensory, executive function, social, communication, or emotional regulation differences (cuz that’s All. Of. Us. No need for the Asperger’s label for that).

Again, what “people like me” seems to mean is “people who have a similar IQ to me, who can demonstrate their IQ in typical ways like I can, and can communicate at the same speed and with the same complexity as me using modes I’m already familiar with”.

Why is it important to have a way to meet people with these qualities? Why is it important to have a word that means, “looking for friends, those with intellectual disabilities need not apply”? Why is it important to have a signal that means “I have a complex vocabulary, and I’m not interested in communicating regularly with people who have access to less vocabulary”?

When people use the label Asperger’s to “find people like me”, what they seem to mean is that they don’t really want to socialize with autistics who have co-occurring ID, significant motor planning impairments, and/or complex communication needs. *Some* disabled people make suitable friends and conversation partners, but some *other* disabled folks are just not palatable, or are too difficult to engage.

I have heard people who use the label “Asperger's” say that this label was their access point to autism, that pre-diagnosis they had so many misconceptions of autism that they never would have investigated it or considered that they could be autistic. Fair enough. However, this is a problem. It is a problem that autism is so poorly understood that actual autistics don’t even know what it is or that autism could be their neurotype. The solution to this problem is not to promote continued use of the Asperger’s label as an access point. Offering a “less scary” presentation of autism as a way to help people feel comfortable accessing the Autism Community relies on there being a “more scary” presentation, and increases stigma and oppression for those with the “more scary” presentation. That’s not an acceptable trade off.

I have also heard people who use the label “Asperger’s” say they find it useful to communicate about the difficulties of being high masking with other high masking folks, and that they experience solidarity with other autistic people who are underserved because their support needs aren’t recognized or understood. I think these are important and worthwhile points of connection. I don’t believe they must take place in groups or spaces that center Asperger’s or rely on that designation. They can occur in spaces for all autistics. A post about masking will attract people who want to talk about masking. A blog post about lack of services for autists who live independently will be shared and read by those who relate to the content. The Asperger's label is not necessary to facilitate conversations or information sharing on these topics.

I am raising an autistic child with big support needs who requires a lot of communication support across multiple modes of communication. He deserves a place in our community. I don’t like knowing that there are members in our community who see their autism as so different from his it needs a separate label. I don’t like that there are members in our community who use that label to define spaces that are not for him. I don’t like that there are people in our community who think my child’s neurology is so bad, so shameful, that they hold on to a diagnosis that either no longer exists or soon will not, all so nobody mistakes them as being like him.

You are like my child.

My child is like you.

I’m proud to share a diagnosis with my child. Are you?