I've observed but not participated in many discussions about disclosing the "label" of our children, or not.
Right up front I need to say this is simply a personal choice. I react poorly to criticism of parents in either camp. More on that later. Here, I want to list the pro's and con's of each.
Telling- Pro's
- You will open your self up to more access of information. The more people who know you have the problem, the more likely you are to find people who can help you.
- Appropriate services- disclosing the diagnosis will help professionals direct you as you seek services for your child.
- Peace-you will find peace in having your friends simply "know" what is going on, why your are so busy all of a sudden, etc.
Telling- Negatives
- Austism is label- Your child WILL be the victim of bigotry when people know their label. They just will.
- Privacy- Once you tell, this is not something you can take back for your child. Even if your child is functioning typically in every way, the label will stick for those who know.
Not Telling- Pros
- Avoids stereotyping- The "A" word brings with it may incorrect perceptions you may want to avoid for your child.
- You can avoid unwanted discussions from "aunt so and so" about autism- Sensitivity from others does not often come our way with this illness.
Not Telling- Con's
- If people don't know, they can't help you.
- You have to live with the secret...that can be hard.
- You may eventually have to disclose. Later may be harder.
- Parent support will be more available to you if you disclose.
Finally, on the criticism of parents:
Some people think you should disclose your child's diagnosis because such action will help others. This alone is most often not an adequate reason to release private health information about your child. Your decision has to be based on what is best for your child.
The other argument that I loath (a strong word I know) is that people who do not disclose are ashamed of their children. SHAME on those who would even mention this. A child's parents must make the best deicision they can for their child. To even suggest that such a decision is made based on the shame factor, especially when we are talking about an illness, is outrageous. (besides which I've never understood exactly what it is we are suppose to be ashamed of)
Our decision. We made the decision a long time ago to disclose to those who needed to know and not to others. And go from there. Some people who know today treat him "less than" even though he is doing so well. But also some people who do know are fabulous for him because of that knowledge. I'm comfortable with our decisions for him to this point.I live with the pros and cons. We've tried to make the best decisions for him, with only him in mind. We love him dearly.
My heart is with you,
Katherine Lee