Tag Archives: disability


“sig·nif·i·cant, adj. : of a noticeably or measurably large amount”

– Merriam-Webster’s Dictionary

My son, age 15, is in a major transitional year, having begun high school three months ago. He has a new case manager and new teachers who are all still getting to know him, his strengths, and his needs. He has a full load of classes and a couple of self-chosen extra-curricular activities, including being on the school’s wrestling team, which he dreamed of doing for many years. I am, of course, very proud that he achieved that, and of everything he’s accomplished. He has come so far from his non-verbal, sensory-agony days.

And fortunately, I like his new case manager. She quickly assessed my son’s needs and has worked hard to meet them. I am very appreciative of her work and her attention to my son. She recently emailed me to go over a few issues, including how to help him participate more during wrestling practice. Among other things, she wrote, “[The coach] does not have a lot of experience with students with significant disabilities.”

And it hit me hard. That phrase – “significant disabilities” – is heavy. It was, of course, not meant in a negative way. But it smacks a parent in the face. It’s a harsh reality check, even twelve years post-diagnosis. That phrase takes my recent hopes for a possible semi-independent adulthood for my son and dashes them to pieces. It takes me back to square one, when he was three years old and we received a diagnosis of classic autism, and again at age five, with a different doctor and two years of intensive therapy under our belts – same diagnosis. My head reeled again as it did so long ago. Significant disabilities, even at age 15, even after all the work he’s done, all the years of continuous therapy, all the parental heartache. “Significant” must be somewhere in between “moderate” and “severe.” And “significant disabilities” do not induce much hope.

Days pass. I have been walking around in a melancholy haze caused by two seemingly innocuous words. They are truthful, after all. I realize that his case manager sees a 15-year-old who needs constant one-on-one assistance in all of his classes, two periods a day in the resource room for help with in-class work and assignments, daily pull-outs from his mainstream classes, ongoing social skills and speech therapy, daily medication for his behavior, curriculum modification, and various other accommodations that I am constantly grateful are available to him. I can’t deny that all of that does, indeed, point to “significant disabilities,” just as how his needs when he was first diagnosed pointed to the same.

I know that my son’s case manager meant no harm in what she wrote; she merely stated a fact, and I certainly don’t hold it against her. But she doesn’t know his history. What she doesn’t see is a 15-year-old who, despite great difficulty in learning to talk and filter severe sensory issues, despite enduring years of bullying, among countless other challenges, has always gone to great lengths to learn to work with his autism and to function as well as he does. He always tries. He wants to live his best life as much as I want him to. I find that significant too.

Having Autism Vs. Being Autistic

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.