This piece was written using identity-first language, which is the preference of most autistic adults.

From the ELCA Disability Ministries Winter 2020 Newsletter: View email in browser. | Download a pdf version

By Linnea Peterson
Autistic adult attending Our Saviour’s Lutheran Church, Minneapolis, Minn.

Sometimes parents resist the news that their child is, or may be, autistic. Why do we need to label children so young? What good could possibly come of it?

As an autistic adult who was diagnosed at age 22, I wish my diagnosis had come much earlier in my life, because so much good has come of it. Getting diagnosed with autism is, quite simply, one of the best things that has ever happened to me.

The truth about labels is that they don’t come only in the form of diagnoses. You can’t protect an autistic child from labels by refusing to get them evaluated for an autism diagnosis or by refusing to accept that diagnosis if it comes. An autistic child who struggles with executive function will be labeled lazy. An autistic child who struggles with transitions will be labeled disruptive. An autistic child who struggles to take turns in conversation will be labeled self-absorbed. In my experience, being able to respond to those labels with “No, I’m autistic. I’m trying my best, but some things are harder for me than for most people” is much more empowering than concluding, “I guess I am lazy, disruptive and self-absorbed, and it’s all my fault.”

In addition to empowering me to reject pejorative labels that blame me for my struggles, my autism diagnosis has helped me figure out what I need and how to get it. When I’m bored and restless in a Zoom meeting, I recognize that I need more sensory input than I’m getting, and I start to knit. When I’m upset and want to destroy things, I recognize that I have excess negative energy, and I find a bare patch of wall to pelt with balled-up socks. When I can’t choke down food that causes me sensory distress, I can explain that the food is triggering my sensory sensitivities. When I forget to ask questions in a social situation, I can forgive myself and also explain to my friends that I’m unlikely to ask for their input but they’re welcome to spontaneously share information with me if they want me to know it.

This isn’t to say nothing bad can ever come of an early diagnosis. If an early diagnosis leads parents to put their child in applied behavioral analysis (ABA) therapy, which is linked to post-traumatic stress disorder, that can be bad. If an early diagnosis leads parents or teachers to believe that a child will never be able to learn or do anything worthwhile, that can be bad. But these are not necessary consequences of an early diagnosis; these are reactions to the diagnosis, and they can be changed or avoided.

An accurate diagnosis, whatever that may be, is the best way for someone to get appropriate medical care. For autistic people, an accurate diagnosis also confers rights under the Americans with Disabilities Act, puts words to experiences that have previously been hard to explain, and unlocks a community of people with similar experiences. These benefits are extremely valuable.

This is not to say that being autistic is easy or that parenting an autistic child is easy. Both of those can be difficult. Both can also bring profound joy. But refusing to seek or accept an accurate diagnosis of autism will not make anything easier for either the parent or the child. On the contrary, receiving and accepting an accurate diagnosis can be immensely helpful for the reasons already given.

I love being autistic. Having a special interest brings me deep happiness. Properly calibrating my sensory input feels amazing. I enjoy having a logical bent to my thinking. This isn’t to say I didn’t cry the first time I contemplated getting evaluated for a diagnosis. I was afraid of what others would think of me. But it has turned out that I vastly prefer people to know that I’m autistic rather than to interact with me and draw their own conclusions: that I am weird, self-absorbed, tactless. After all, the diagnosis didn’t make me autistic. That was already a part of me. My diagnosis just helped me explain why I am the way I am.