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Why I choose to talk about Asperger’s Syndrome

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Celina Miller and her family

My son was diagnosed with Asperger’s Syndrome nearly five years ago.  I made the decision to wait to discuss it with him until he was nearly nine years old, about a year after his diagnosis, and I felt like he’d reached the age when he needed to understand himself better.  My goal has always been to protect his self esteem, give him tools to overcome challenges, and learn what works for him and perhaps why.

Isn’t that we all want?  A better understanding of ourselves and a certain self-acceptance.  As adults, we’ve learned how to recognize our strengths and understand not our limitations but our passions.  We strive to move forward with our assets, whatever they may be.  For many of us reading this article, it’s taken decades, perhaps half a lifetime to figure out where we stand with ourselves and find our place in this world.  When presented with an exceptionality like an autism spectrum disorder (ASD), it’s often necessary to jump start the process earlier in life.  And honestly, what a blessing to begin to truly know oneself as early possible.

Our first conversation about Asperger’s took place in Jim’s psychologist’s office. Our doctor helped my husband and I navigate the discussion and answer questions.  The process was painless and uneventful.  Once Jim recognized that he had Asperger’s, he simply said “OK” and was ready to leave. It seemed as if it was no big deal to him.

We left the office that day and went about our lives as usual, not detecting a change in Jim’s demeanor.  That went on for months; our normal (yet slightly abnormal) lives.  Then one day, another conversation started.  This one, not as easy.

I’d received a call from Jim’s school.  Jim had acted out a bit, nothing too bad, but I needed to be aware so we could discuss.  I remember it being a very typical kid situation, really, but with an ASD, we have to learn from each individual experience. Creating appropriate responses from one situation to the next doesn’t come naturally for people with an ASD.

“I know mom, I’m in trouble,” he said as he walked in the door that day from school.

“Well, you’re not necessarily in trouble, but let’s talk about this.”  And I asked him why he did what he did and what he was thinking about.  Jim responded that he didn’t know why he did it, he just couldn’t help it.  He was really embarrassed and sad, and knew his teachers were disappointed.  Then he just stared up at the ceiling, definitely in deep thought.

Then it happened, without warning he abruptly burst into tears.  “Did I do this because I have Asperger’s?”

I felt dizzy. A knot appeared in my stomach.  How should I respond?

“I don’t want to have Asperger’s. Why do I have it? How do I get rid of it?”

Alarm….pull the plug…total plant meltdown….where do I go on from here?!  Panic began to set in.  Suddenly, the answer came to me.  

“I don’t know why you have Asperger’s, Jim, but you're perfect.  You’re exactly as you’re supposed to be.  You make mistakes just like everyone else in the world.  And do you know how your dad is deaf? Well he has that to work around.  And look at him, he’s amazing.  Doctors said he’d never speak and only sign; and that he’d have to go to a special school away from his family.  But he went to speech therapy, he had special classes; and now he reads lips, speaks well, has a career and family.  We’ve all got something, Jim.  Nobody’s perfect, but we’re all special.”  

As I spoke the words, I’d never realized how wonderful it would be that my husband’s hearing impairment was such an amazing tool that his son could use to compare himself; that this child could look to his father and know that he too could overcome any challenge.

This conversation happened nearly four years ago.  Today, Jim and I talk about Asperger’s all the time.  He asks what are some of his “things” (symptoms), and in response I ask him what he thinks they are.  He tells me a few things he’d like to work on about himself, and I usually say I’ve had to work on the same things about myself.  If you ask him about Asperger’s, Jim will say, “I have Asperger’s and I’m awesome.”  I love that confidence.

Asperger’s is a situation; a piece of my son.  It doesn't define him, although it certainly affects him.  Asperger’s has no bearing on his being…his soul.  He’s different, not less.  Special, but also the same. Jim is a loving, funny and deeply emotional young man.  He’s overcome, and will continue to overcome, many challenges.  In our family, we have chosen to talk about ourselves, what’s happening in our life and how we can work to make each day better.  My husband is deaf, and there are ways in which we need to set up our life to make it work for us.  So for my family, creating conversations about how we can move through life in a productive way, facing challenges— whether they be a hearing impairment, Asperger’s, or the myriad of situations that life inevitably presents us with— we’ve always found it more productive to talk about it.

Celina Miller is a writer, advocate, trained yoga instructor, musician, and mother to three — one of whom is affected by Asperger’s syndrome. The former editor-in-chief of YogaMom Magazine volunteers her time with various organizations to help people affected by autism, mental health issues or homelessness. A member of the Board of Directors at Oasis Center for Women and Children, Miller is the co-chair for a multi-million dollar expansion that will provide needed play therapy services and resources to children in need. A volunteer with Autism Speaks, Miller reviews grants and is a committee member for the Alabama Walk Now for Autism Speaks. In this capacity she meets with various organizations to encourage involvement and further raise awareness. You can visit her website and blog at celinamiller.com. Miller lives in Birmingham, AL with her husband and children.