Profound Autism Isn’t What You Think It Is
There’s a growing trend that’s honestly frustrating. People are using "profound autism" as proof that autism itself is a tragedy that needs to be cured. But autism isn’t the problem. Autism is a different way of processing the world. It needs understanding, support, and adaptation—not fixing.
Here’s what’s actually happening: when most people talk about "profound autism," they aren’t describing someone who is simply “more autistic.” They’re describing someone who is autistic and has an intellectual or developmental disability (IDD). Autism and IDD often happen together, but they are not the same thing.
The term "profound autism" was introduced by the 2021 Lancet Commission as a descriptive label to recognize individuals who are autistic plus have significant intellectual disabilities, limited communication abilities, or high daily care needs. It was never meant to suggest these individuals are "more autistic" — it was meant to describe autism plus other challenges that require different types of support.
Level 3 autism, as defined by the DSM-5, means very substantial support needs. But in most cases, the reason for those high support needs isn’t just autism—it’s autism plus a co-occurring intellectual disability. Autism itself does not automatically mean low IQ, inability to communicate, or inability to live independently. Those challenges come when autism is combined with IDD.
In a lot of autism spaces today, families share heartbreaking experiences—but many of these experiences aren’t about autism alone. They’re about raising someone with both autism and an intellectual disability. That experience is real, and those families absolutely deserve support. But we also have to be honest: when we don’t recognize the difference, it creates a narrative that autism itself is a monster. And that hurts all autistic people.
We need separate spaces where families facing IDD challenges can be supported. But we also need to protect the truth about autism. Autism isn't the enemy. Blurring the lines only builds fear where understanding should be.
