For many years I could not say that Nigel was autistic. I could not say, “My son is autistic.” I would readily tell people “My son has autism,” because to me that was different than calling him autistic. The autism, I accepted. To me, saying someone “has autism” puts the focus on the person rather than the disability. Saying my son “is autistic” makes it sound like the autism is his identity.
But it is. It’s part of his identity.
It took me so long to realize that and accept it. I used to tell friends and family, “We say that Nigel HAS autism rather than he IS autistic, just like you say that someone HAS Down syndrome rather than someone is ‘Down syndromic.'” I’m sure I sounded like I was stuck in some level of denial. I was willing to admit that my son had a disability, but not acknowledge that it was actually part of his personality.
I’m not sure what changed. Maybe it was a subconscious need to fully process the way autism affected our family. About two years ago, I started saying, “My son is autistic” when mentioning him to strangers or acquaintances. And I was surprised to find that I actually felt comfortable saying it. Sometimes I would say it by myself, quietly, in my room. I would hear the words coming out of my mouth, and with them came a sense of something that resembled peace. Autism didn’t feel as much like this formidable disability when I used that different terminology, the one I had resisted for many years. The word I had told other people not to use: autistic. It was almost a relief that now I could actually say it: My son is autistic! I realized that I had finally truly accepted the autism present in our lives because I embraced it as part of my son’s identity, not just something that he “has.”
My realization was further supported by an interview I recently came across at Natural Learning Concepts, featuring Daniel Hawthorne, a high-functioning autistic adult who was non-verbal until the age of seven. Here is his response to the issue of having autism vs. being autistic:
- Do you get upset if you’re called “autistic” rather than “a person with autism?”
- “Actually, I prefer to think of myself as being autistic rather than having autism. Autism is pervasive; it affects every facet of my life. It is not just something I have in the sense that one may have diabetes or epilepsy. Autism affects the way I think, my personality, my abilities and much more, and I accept it.”
I have come to feel the same way about Nigel. I never thought of autism as a disease (like diabetes or epilepsy mentioned above), but I seemed to think I could refer to it as such, in saying it was something Nigel “had.” I have finally come to terms with the fact that it’s part of who he is. And whether he is able to achieve the high level of functioning that Daniel Hawthorne has, or if he stays the same, or even if he regresses, Nigel will always be the amazing person that he is – my autistic son.