To reveal or not reveal? I know so many of us parents struggle with whether or not they should openly reveal their child’s autism diagnosis. Since autism is often a hidden disability, many limit who knows to the immediate family and the professionals working directly with their children. It’s not the decision we made. And when I say decision, we never sat down and even talked about whether to reveal or not to reveal. For us, talking about our son’s autism diagnosis isn’t an issue.
Now we don’t just blurt it out, “Hey, nice to meet you, my son is autistic.” But it’s okay with us if it comes up in the natural course of a conversation. In fact, I love it when it does because it’s my opportunity to give someone a perspective of autism they haven’t been exposed to before.
For our family, it comes down to 3 reasons why we openly discuss our son’s autism:
There’s no shame in being autistic.
Autism is a diagnosis and yes, for my son that means he needs some special interventions and support. His life is definitely on a different path but there is nothing wrong with being autistic. There’s nothing wrong with having any kind of disability for that matter.
When my son was diagnosed with Aspergers Syndrome, we finally had the last piece of the puzzle—finally, we were looking at the full picture of who he was. It helped inform us so we could make the best decisions for his education and future.
Autism makes Jonathan…Jonathan.
I do think that Jonathan struggled with his diagnosis for many years and felt shameful about being autistic. He and I have talked about our being open about his autism and he’s said that it allowed him to grow into his being comfortable with his diagnosis. Today he feels good about who his is and I can see it in the way he carries himself, smiles more often and enjoys being around other people.
If we want the world to accept autism, we have to accept it first.
If we as a family can’t be open about autism, then how can we expect the public to be accepting and understanding? The best way they can ‘get to know’ autism is by being open about being autistic. Let questions be asked! We’re not afraid to answer. We modeled that attitude for our son and he’s been such a positive advocate for himself. I believe that our unconditional acceptance of him and he of himself is a catalyst for acceptance from the community-at-large.
Yes, there is a downside to revealing. Sometimes people are not understanding and even afraid when they hear ‘autism.’ I’ll give you an example: My son had a job interview, an audition for a traveling theater company. When he came home from the audition, he was really happy with how he did and he said that he felt comfortable enough to mention he had Aspergers Syndrome. “Wow,” I thought to myself because it’s not something you typically do (or need to do) on a job interview. I was so sure he’d get the job because it was a perfect fit for his talents and he had a resume of past work experience and recommendations to prove it.
He didn’t get the job and I am suspect that it was because he revealed his autism. He was disappointed and I was heartbroken. But I realized that it was better in the long run because if he hadn’t revealed and gotten the job, it may not have been a supportive work environment.
We don’t want our son to be afraid of his autism.
When you have a secret, you always live in fear that your secret will be exposed. It would have felt like a family secret if we had kept his diagnosis to ourselves. We don’t ever want our son to have to hide who he is or to live in fear that someone will ‘discover’ his autism.
I respect your decision if you are a parent or an autistic adult who chooses not to reveal. I trust that you have made the best choice for your personal circumstances. Continue to do what you need to do for your child or yourself. For us, that means we’ll stay an open book. It’s not in us to live any other way.
Would you like some tips on disclosing (or not disclosing) an autism diagnosis? Click the image to get immediate access to a PDF by Haley Moss featured in Zoom Autism Magazine’s Winter 2014 issue: