While struggling to do everything we could to help my son with high functioning autism/Aspergers progress and meet the ever changing goals we had for him, my husband and I wrestled with how and when to tell him his diagnosis. When he was little, we were so focused on his progress it was hard to find the time to think about the bigger picture – or really anything but the ever growing personal and career to do list. As he grew older and different situations arose, we started thinking about how and when to share the “a” word with him.
We wanted to make sure that it didn’t become a label that would define him, that he would know he has all the potential to do whatever he wants to do, and that he should feel great about himself. We thought a lot about the words to use, his likely concerns, questions, and reactions. When he was 12 years old, we decided that I would tell our son while we were away on our annual family beach trip because it’s such a special time together and very relaxing.
My son and I took a long walk along the beach. I talked to him about all the wonderful things about him, all of his strengths that I love so much, and then I talked about some of the challenges that we both knew he had struggled with and was still dealing with. Then I gave him that bigger picture of this is your diagnosis autism and that I didn’t want it to be a label that would define him. I explained what autism is, for example that it is a spectrum with everyone different — and that it doesn’t change what a wonderful, special person he is.
For all our worrying and stress, he said, “This really helps me, now I understand better who I am and why I have the struggles that I do. It’s like you put all the puzzle pieces together for me.” Recently as a young adult in perspective he said, “It’s kind of funny that I really felt like it was puzzle pieces since puzzle pieces is the actual symbol and icon for autism.” So my only regret is on reflection I would have told my son a couple of years earlier.
Consider your child’s unique personality, developmental level, age, strengths, and challenges in thinking through how to approach the conversation. For example, does your child think literally? Have sensory issues? Think about what approach you think would be most suited to his or her personality, needs and learning style and what your child will respond best to. Then consider consulting with trusted professionals, family or friends in your support network. If your child sees a therapist, they can be very helpful. There are also useful resources from evidence-based, supportive nonprofits such as Milestones Autism Resources. This Milestones article on Talking to Your Child about Autism offers helpful tips.
Here is a video of my explaining how I told my son he has autism.