The Scarlet Letter (with apologies to Nathaniel Hawthorne)
Disclosure: Telling our children about the "A" word

The subject of disclosure was a topic of great interest at the parent's group this summer at Hale Youthcare Camp. Many valid opinions were voiced over the pros and cons of telling our children about the "A" word and how it applied to them. One comment that resonated with me was one mother stated that she thought her child knew from the conversations and books around the house. Her observation rang true for my home as well. How much did we think our son had picked up through osmosis?

Thus began some soul-searching conversations between my husband and self. Do we tell our son? Does he already know? We never hid the phrase "PDD-NOS" from him but does that really mean anything to him? Did it help explain why he felt "different" from other children? Would telling him make him feel more isolated?

Several weeks passed and we had not come to a decision. Then one evening while my son and I were sitting at the table doing homework he asked," Mom, why does my autism make me so angry?" And there it was. It turned out his teen-age sister told him one night when he was angry at her and couldn’t let it go. Though initially spoken by her in anger, she softened it by telling him that his "brain just gets stuck sometimes" and that his autism wasn't "too big". That reassured him, and pushed Mom and Dad to action.

My son and I talked about his autism as we finished his homework. It was a perfect setting. We had an activity to focus on as we talked. It was also an activity that tends to create anxiety. We were able to experience the autism in action and talk through each step as he experienced frustration, anxiety, and anger, then ultimately happiness as he comprehended and finished the assignments. We continue to have conversations whenever our son asks questions or when we as parents feel it is helpful.

Overall, disclosure has been a positive experience for our family. It has eased the tension which was created around the "kid glove handling" that we tacitly employed. Though adjustments for behaviors still exist, being able to talk about and address the issues honestly and directly with our son is proving effective in managing outbursts, both from him and other family members.

He still perseverates when upset or angry, (an important issue). He and I now use the 5 point scale from the book, “When my autism gets too big”, to gauge his initial response and monitor his feelings as the “autism” gets smaller and smaller. I’m hoping becoming aware of the process will eventually enable him to calm himself at will.

Acknowledging his autism has made it easier for him to understand why he sometimes feels "different". Feeling different still brings anguish in certain social situations. But he has also been able to start seeing his strengths; the unique perceptions and skills that his "typical" friends at school don't display. He delights in the fact that he "gets" algebra. He recently discovered an animation error in a cherished Christmas special that my husband and I have been watching since 1965 and never noticed.

The most significant change I see in my son is the beginnings of acceptance of self. He has started to build a "real" sense of accomplishment in himself. The steps are faltering. Sometimes he manipulates saying, "I can't do that. I have autism." We quickly dismiss this for what it is and move on.

His diagnosis was recently changed from PDD-NOS to Asperger’s Syndrome, (another "A" word). Disclosure has made telling him and coming to terms with his uniqueness and his abilities/limitations an easier process.

The one "A" word I hope sticks with him, is that he is "All right", just as he is.

back to read more stories

Back to Top