Talking to Your Child About Their Diagnosis: A Conversation

In an effort to keep this blog fresh and informative, I'm starting a new feature today. Periodically, I'll be posting a "conversation" with other individuals involved in some way with autism, Asperger's, ADHD or social skills for kids. If you'd like to contribute to a conversation, please email me at [email protected] and let me know what you'd like to talk about. Maybe I can interview you on this blog next!

Today I'm talking to Mel C. Mel is the author of the blog Nitzy Fritz. She's the mother of an autistic son, and a neurotypical daughter. Although we haven't met in person, I've been following her blog postings for a while.

Patricia Robinson: Mel, one of the issues that a lot of parents struggle with is how to speak to their child about his or her diagnosis. Tony Attwood, the author of The Complete Guide to Asperger's Syndrome, states that there are a number of advantages to a child about knowing about the diagnosis. (p. 29) This can include things like removing fears of having another, potentially more worrying, diagnosis, and the recognition that the child is actually struggling with very real difficulties. I'd imagine the situation is the same for children with other diagnoses on the autism spectrum. Still, it's hard to know when to start the discussion of a child's diagnosis, and to know how much to say. I'm interested in hearing about your experiences in this area.

Mel C.: My experience was unusual in that my son was diagnosed late (5 1/2) although I had suspected since he was two. I had lived with the idea of autism for so long that I had gotten used to it. I did struggle with when to tell my son and how to tell him. I had always been open with everyone else, from the schools to the person in line behind me at the grocery store, but hadn't told Liam yet. I realized that if I didn't do it soon, someone else might! There are two schools of thought on this--some parents don't reveal the diagnosis to the child, either trying to avoid a label, or hoping the child will "recover" and no longer have the label.

When I did decide to tell Liam, I used two great books to open the discussion--My Friend with Autism and Andy and His Yellow Frisbee. I read the books to both kids, then said, "Do you know anyone who might have autism?"

Zoe immediately yelled, "Yes--Liam!" It seemed like she was relieved to put a name to what was so different about her brother. I said, "Liam, did you know you have autism?" He mumbled, "Yes" and left the room. I tried to bring it up a couple of times after that, but he clearly didn't want to talk about it. About six months later, he saw my sister wearing a puzzle piece pin and asked her why. She said, "To let people know about autism." He said, "Oh. You know, I might have autism." We just let it go, but he seemed to have a greater acceptance after that moment.

Now we are at the point where we can have conversations about autism. This summer, when I came home from a very powerful autism conference, I sat him down and said to him, "I am proud of you and I'm proud that  you have autism." He said, "You are?? You mean, you're not mad?" "Of course not!" I said and we had a talk about all the reasons I'm proud of him. I know some parents who still have not told their 7, 8 and 9 year olds. I would never say my parenting methods are superior to someone else's (at least not out loud), but I do worry about the shame those kids might feel when they finally do find out. They're going to wonder why something so integral to who they are was kept a secret for so long.

We try to celebrate the positive aspects of Liam's autism, while pointing out it is just one way in which everyone is different. He doesn't use autism as an excuse (at least, not yet), but sometimes I will remind his sister when she gets frustrated with his perseveration or delayed social skills.

PR: What a supportive approach! I think it was really important that you gave your son some time to adjust to the idea of autism, and let him come to terms with it at his own pace. Reading a book together and  then leaving it out for the child to look at again works so well - it conveys acceptance and still gives the child some control over the conversation. I also love your strength based approach. Can you talk more about the positive aspects you see in Liam's autism?

Mel C: Liam has the most fantastic memory. He always remembers names--sometimes I need his help with that! Once his language developed, it became clear that he was absorbing and recording everything on his little neurological DVR even as he appeared to be "in his own world". He remembers small details about things that happened years ago. Once he has seen a movie a few times, he can "watch" it in his mind. From what I hear, this is not uncommon for people on the spectrum. His information is usually reliable, because he doesn't lie.

Liam has a condition called synesthesia, which I believe is related to his autism. He "sees" the days of the week, months, numbers and letters in specific colors. This may be why schedules are so important to him.

He has a unique way of looking at the world, which helps other people to see things differently, too. I learn from him on a daily basis. Some days that learning takes a lot of patience.

Contrary to what we think we know about autism, Liam is capable of forming intense bonds with people (always adults). I have seen it time and time again-- he will meet a new person, look deep into their eyes and talk to them; completely charming. He seems to know when someone needs a little extra love or attention. It's the kind of emotional skill that I don't think you can teach.

I try to make him aware of these special skills he has because we spend so much time every day working on all the things that are hard for him--academics, fine motor, peer relationships. I think it's important to remind him he is good at a lot of things too. The most rewarding part of being Liam's mom is that when he does get something we've been working on, it's over the top joy for me.

PR: Beautiful! Your son sounds like a very special person. Mel, thanks for talking to me about this topic, and I hope we can do this again.