Should You Tell Your Child about Their Disability or Diagnosis?
By Anna Stewart
Recently I met a frazzled mom at a conference about special education. “I’m so worried about my 16-year old daughter,” she confided. “She is defiant, hates school and won’t let the teachers help her. She is really struggling.” As she went on literally wringing her hands, I finally had to ask her, “Does your daughter understand her disability? Does she know she has one? Does she know how to manage it?”
The mom stumbled over her words as she told me that she had “sort of talked to her about it in elementary school” but it quickly became clear to both of us that her daughter did not really know she had a disability. She was acting out because she thought she was dumb, “a loser” — and that she was a failure. And here was mom, trying to get ideas and help so she could advocate for her. I put my hand over hers and said, “How can you expect your daughter to rise above her disability if she doesn’t even know she has one? How can you start to work with her to make things work better for her?”
This may seem like an exception, this story of a teenager with a significant learning disability who doesn’t know she has one, but sadly, it’s not. As a family advocate in our school system, I worked with a family after the 7th grade teacher told their son that he had learning disabilities. It was the first time he had heard this from anyone and he freaked out. It took over a year for him to recover from the trauma of finding out he had a disability.
While these stories illustrate why it’s important to inform our kids and not ‘protect’ them by withholding vital information, there is an even bigger reason to learn to advocate with your children. It’s a simple equation, really: If we want and expect our sons and daughters to be self-determined adults, we have to teach them how to advocate for themselves. And in order to advocate for themselves, they have to know their strengths and weaknesses, how they learn, what they need to learn and how to engage with others. And if they have a disability, I believe they need to know what it is and how to manage it.
Learning to advocate with your child requires compassionate diligence, accurate information and kind flexibility. It requires that parents understand their child’s strengths, learning style, needs, and interests along with their disability. It requires ongoing, age-appropriate conversations and clear and realistic expectations. Teaching your child about their AD/HD or learning disability or autism has to be balanced with not allowing them to use is as an excuse.
A great example of a strong self-advocate is the professor, author, speaker and inventor Temple Grandin. Temple understands how autism affects her in every way. She knows what it makes difficult for her and what the gifts of having autism mean to her. She speaks eloquently about what it was like to be a child who thought in pictures and not words and how she learned to put words to her pictures so she could function in society. Ms. Grandin is a self-determined adult. She has made her dreams come true. And her mother was by her side advocating with her, not just for her.
I understand why many parents don’t tell their children about their disabilities; they are trying to protect them. But the kids know. Withholding information about who they are and how they learn means they will likely internalize it and feel badly about themselves. They might think, like the 7th grade boy did, that if no one is talking with them about it, then it must be really bad and they must be really broken. Kids process very differently from adults and often blame themselves for not being good enough.
When you see it from their perspective, you can see what you need to do differently. Talk to your kids about their challenges just like you talk to them about how tall they are or the color of their eyes. It’s just part of them, and does not define them. Humans show a wide range of abilities — you and your child are somewhere on that continuum. Normalizing differences with honesty, support and love will help your child reach their own dreams. Advocate with your child and watch them blossom.
EP Readers: What do you think? Should you tell your child about their diagnosis? If you did so, what did you say– and how did your child take it? If not, why did you decide not to do so?