When a child receives an autism diagnosis, it usually comes with a level. The DSM V (a diagnostic manual) currently uses numbers 1-3 to approximate the level of support an individual may require.
Some doctors may explain those levels using words like high/low functioning, mild, moderate, or severe. It’s a lazy and negligent explanation. But with only thirty minutes allotted for the appointment, who has the time?
These labels, no matter how useless, end up being the descriptors parents use from then on.
Why do I say they’re useless?
I’ll link to some great resources at the bottom.
They give absolutely no details of the child’s unique strengths and weaknesses. They don’t mention sensory needs or motor skills. They tell us nothing about how the child communicates or learns new information.
People don’t fit into well-defined categories – We’re more complex than that. When I describe my neurotypical children, I say what grade they’re in, mention their hobbies, describe their personalities and relationships with friends. So why would I use a one-liner to describe my autistic children?
Let’s look at this in action:
- My ten year old daughter is severely autistic.
- My ten year old autistic daughter has high support needs. She’s at risk of eloping and shuts down when she’s in unfamiliar environments. She loves water play but she’s afraid of bubbles. Scripting is her favorite way to learn.
Notice that the word severe is never mentioned in the second example, but it gives a better over-all picture. It also encourages follow-up questions and further discussion.
You may be thinking, Wow, that’s a lot! Obviously the content and amount of information would vary depending on who I’m talking to and why I’m sharing.
If I’m talking to the school, I’d add a lot more. If I’m talking in an online forum, I’d leave out private details. If I’m talking to my neighbor who also has kids, I’d go into more detail about how she prefers to interact with friends.
The same concept can be applied to the term nonverbal. Communication has its own unique web of descriptors including (but not limited to) speech, signing, gesturing, body language, and motor skills. All are valid forms of communication and should be used to accurately portray a person’s communication style.
- My eight year old son has severe, nonverbal autism.
- My eight year old son is mostly nonspeaking and uses an AAC device with Proloquo2Go as his primary method of communication. He also uses the following signs: help, stop, drink, and thank you. He understands oral directions, but needs additional processing time to formulate answers.
Notice that the labels nonverbal and severe aren’t used in the second example. But it gives a better over-all picture and encourages follow-up questions as well.
Why does this even matter? Is it that big of a deal?
It absolutely matters what we say and how we say it. Autistic people have been marginalized and undervalued for decades, and our children are now a part of that community. It’s our responsibility as parents to learn from that community and help them break the cycle of misinformation and outdated stereotypes.
When we model more thoughtful and respectful language in our conversations, we establish a higher standard for others to follow – including school and medical personnel, friends and family.
There are so many more reasons to stop using these labels, but I won’t reinvent the wheel. Check out the resources below.
Learn more about functioning labels:
My favorite: Understanding the Spectrum by Rebecca Burgess – A comic strip I print out and give it to anyone who works with my kids.
The Problems with Functioning Labels – Thinking Person’s Guide to Autism
Am I Functioning Now? – Autistic, Typing
NeuroTribes by Steve Silberman – A book you have to read in order to learn the history of autism throughout the decades. You’ll thank me later.
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And since you’re still reading…
There are plenty of parent bloggers who cling to those labels (severe, nonverbal) like badges of honor. They cry about how hard it is, knowing their children are “in there somewhere.”
That’s not okay.
Platforms like that are damaging to the autistic community – our children’s community. Our kids are different. They learn and interact with the world differently. They even have their own unique developmental timelines.
It’s not our job to change them. It’s our job to meet them where they are and support them so they can live their best lives.
Thank you for coming to my Ted Talk.