To tell or not tell, that is the question. Parents of children with disabilities struggle with this question from the moment a diagnosis is made. Some disabilities give parents little choice in such a decision. For instance, blindness and deafness do not need to be fully explained to be understood. But, what should a parent do when the diagnosis is more complicated? Parents of children on the autism spectrum often wrestle with the decision of whether to tell others and their child about an autism diagnosis.
For those of us with children with Aspergers, the decision can often be even more worrisome. Though I do not pretend to know the right answer for every family, telling my children and extended family about autism was the right choice for us. Getting a diagnosis of an autism spectrum disorder often comes as a shock for many families. Sure, after the initial diagnosis many families will tell you that they suspected something was wrong for months or sometimes years. The thing is, even if your child misses certain milestones or is delayed in some way, no one is ready to hear that something might be wrong. As parents we want to believe the best. We want to believe that there is a logical reason (not a medical, neurological or developmental reason) for our child’s delays. It is easy to convince ourselves that maybe our children are just taking their time with certain skills. I know this feeling all too well.
Of my three daughters, two are on the autism spectrum. One would think that I would be the first to identify a problem with my daughters’ development. After all, I do have a degree in special education. I taught countless students with various disabilities, including autism. As the saying goes, “The apple doesn’t fall far from the tree” and as it turned out, I myself am also autistic. My daughters’ peculiar behaviors seemed totally normal to me.
Once, you receive an autism diagnosis, take time for yourself. Let it sit with you for a while. Take time to grieve and accept your new reality. I say grieve because getting any new diagnosis, no matter what it is, is a huge life change. Things will no longer be the way you imagined they would be in your idealistic perfect world (that is not a bad thing).
When you feel ready (only you know when that time is right), think about telling your immediate and close family members about your son or daughter’s diagnosis. Allow your family to ask questions. Remember that your close family members love your child. Telling family about the diagnosis takes some of the stigma and mystery out of an autism diagnosis.
Depending on the age of your child at the time of the diagnosis, consider telling your child about being autistic. I know that this is a hotly debated topic but I say do it. My oldest and youngest daughters were diagnosed at ages seven and three. My husband and I told our oldest daughter immediately. In our case, my daughter had been having a very rough school year. She had been bullied, and her teacher seemed unwilling to help. Due to the fact that autism is often under-diagnosed in girls, my daughter’s teacher didn’t believe she could possibly be autistic. Both the school and the teacher felt my daughter was a behavior problem due to her lack of flexibility and her need for schedules (Hello, autism!).
Receiving a diagnosis of autism gave my daughter an identity. She no longer had to fit into someone else’s mold. Knowing that she is autistic has given her the power to self-advocate. She is autistic, and she is her own “normal.” We also started using the term autism with my youngest daughter when she was diagnosed. Although her diagnosis comes with different challenges than her sister’s, she knows that being autistic is awesome!
We have never treated autism as a dirty word. Being autistic means you are awesome, unique and you are what you were meant to be. By telling my daughters that they are autistic, I have empowered them. I have given them the ability to self-advocate. I have allowed them to be who they want to be, not society’s mold. Telling my daughters was freeing and powerful, for them and me.