How to Tell Your Child They are Autistic: On Being Evaluated
When the suggestion was made that my firstborn son might be autistic, he was 14 years old. That’s pretty old for a first diagnosis, but to me, he was just my quirky, curly-headed little boy that slept with his Big Bird stuffed toy until he was well into elementary school. I thought he was perfect in every way. Sure, he struggled to make friendships and we called him the “professor”, but he was the oldest. I didn’t know any better. Once my son was unable to keep up with his younger brother’s milestone’s, I had reason to pause. I chalked them up to individual differences in development. None of his teachers had mentioned anything out of the ordinary to me.
His 6th grade teacher was a tip-off. During our final parent-teacher conference, he said, “Good luck with that one,” and I was truly baffled. I asked for clarification, and he described my son as aloof, not participating with other children, constantly being made fun of by others, and what he called “weird.” I had been aware of some bullying and thought I had put an end to it, but apparently, I hadn’t.
The rejection ran deep, and by the time my son entered high school, he fell into a deep depression. He did not have one positive peer interaction. I thought he was depressed and I made the next available appointment for a counseling appointment. The therapist spent 10 minutes with my son and then asked to speak to me, “Your son is autistic. He needs to be tested and get help.” This is before I knew what autism was, and I bought books and watched videos looking for signs in my son …. signs that it didn’t fit for my son. On good days, I didn’t believe it. On bad days, I felt despair.
The Evaluation
We waited a year for the initial evaluation to take place. At first, it involved parent interviews and questionnaires, and it didn’t seem real. I turned my answers over in my mind and wondered if we were really doing the right thing by going through with an evaluation. What if he wasn’t autistic? What about the stigma? I worried through those early days. At some level, I thought he would be evaluated, they would see his genius, and we would be on our way. No diagnosis. No worries.
The entire process took two years, and during that time, I combed through the literature on autism looking for answers. My husband and I went back and forth on it nearly weekly. Things would settle down in our house and I wouldn’t notice any unusual behaviors or interests, and we would agree that he definitely was not autistic.
Then, as if the Universe had been listening, he would sit down after school and draw maps of Minnesota over and over again for hours placing counties, rivers, lakes, and towns meticulously as he worked. During those moments, I panicked. “What if he is autistic?” I thought about the types of therapy and interventions he might need. I worried about his future and what this might mean for him. The one thing I did not think about, was how to tell your child they are autistic.
How to tell your child they are autistic was not a chapter in “What to Expect When You’re Expecting”.
Finally, the day for my son’s evaluation arrived. I sat in the waiting room while he ran through the ADOS-2 with an examiner. It was a good day, and I felt fairly confident that the results would confirm Major Depressive Disorder or Generalized Anxiety Disorder. Frankly, I wasn’t prepared for more after all of the reading and research I had done.
The wait for the results of the evaluation was shorter than I expected. I knew a report would be written, so I expected to find out in several weeks. But when my son was brought out into the waiting room, the two psychologists that did the testing ushered me into a private room. They were blunt and wasted no time telling me that my son was autistic, Level 2. I was so stunned that I just sat there without knowing what to say. One of them looked at me and asked, “Do you want to tell him or should I?” I paused. My mind started racing. What would a good mom do?
My Choice
In that moment, I surprised myself and made a choice that I came to regret. I said, “You tell him.” The psychologists gave themselves knowing glances and my son was brought back into the room. They told him what I should have, that he was autistic and would need extra support. Without further explanation, the visit ended, and I was left walking alone with my son to the car. I didn’t know what to say. Of all of the things I had thought about, it never once occurred to me that I would have to explain autism to my son.
You would think that this experience would have changed everything, that I would have gone out and bought him books and talked with him at length, but I didn’t. I hid from it. I hid from him. It was hard for me to face the reality of the diagnosis and I did not want my son to feel badly about himself. I couldn’t figure out how to frame the strengths around autism in a believable way to him. My son wasn’t worse for the wear. When he was told he was autistic he acted like he had been told he was wearing shoes. He didn’t ask questions or talk about the testing.
It took me time to utter the word “autism” to my son and to start talking openly about it with him.
What I Learned
If I could go back in time and change how I handled it, I would do the following things differently:
- Prepare your child for the testing process, explaining that it will help you see the things that they are good at and areas they might want help.
- When a diagnosis of autism is made, talk to your child about their strengths, and explain at their level what autism is.
- Focus on the positive about autism, like being able to focus deeply, being empathetic, having a good memory, and being a good problem solver.
- Acknowledge the challenges. Talk about your child’s social experiences and feelings and empathize with them and validate them.
- Answer their questions honestly, and invite them to ask questions whenever they need to.
- Give them books or other materials at their level that they can use to learn more about autism.
Doing it Right
When my younger daughter was referred for an autism evaluation, I was ready. I planned how I would tell her if she received the diagnosis and felt more confident about my ability to handle the situation and any questions or feelings that came up. How to tell your child they are autistic was no longer going to be a problem for me.
As I waited in the waiting room for her to finish the ADOS-2, I was nervous. Finally, she came bouncing at the door towards me. “Mom, I’m autistic,” she said. “I couldn’t stop talking about cats no matter what.” Two weeks later, at the feedback session, it was confirmed that she did in fact have a Level 2 autism diagnosis.
I went home and waited for a private moment that was calm and then told her about the results. “I saw the Dr. today, and he said that you are autistic. Do you want to talk about what that means?” I asked. “Of course I’m autistic,” she said. “You think I don’t KNOW that?” I pressed on with my list of positives and she interrupted me and said, “Don’t worry Mom, I rock autism.”
For more information about diagnosing autism in childhood, visit Testing in Children.