This is a follow up from my last two posts about explaining an autism spectrum diagnosis to siblings and to the children themselves. I think it would be helpful to explain the most common reactions that I get from the autism spectrum children when I inform them about their diagnoses, and why I think we should tell them. I am writing about children with a high functioning autism spectrum disorder, such as what is referred to as “High-functioning autism” – generally meaning that the person is diagnosed with “Autistic Disorder” and has good use of language and intellectual abilities that are average to above average, or Asperger’s Syndrome or PDD.NOS. I mostly work with school age children, teens and young adults (5-22) so this will be the age group I’ll describe.
What’s the worry?
Many if not most parents have anxiety about their child being informed about the diagnosis. I think this may be rooted in the fact that most adults are aware of the stigma and misperceptions involved regarding the diagnosis, and if their child is newly diagnosed, they may share some of those negative perceptions. Additionally, they have awareness of the possible long term ramifications, and therefore may be concerned about whether their children will be able to live independently, have friends, marry, or be parents themselves. Parents do not want their children to suffer any loss of self esteem, and so they become distressed knowing it is possible that their children will feel bad about themselves if they know they are on the spectrum.They may also know that others may think worse of their child if it becomes public knowledge.
If our children were blind, would we try to hide the fact from them that others can see?
I understand these real concerns. I also believe that we all have a part in changing how the world sees autism. We have come a long way from when autistic children were removed from their homes because it was thought that their condition was caused by “cold mothering.” but we haven’t come far enough. If our child was blind, I don’t think we would try to hide from her the fact that others can see out of fear that it would make her feel bad about herself. Instead we would fully inform her of the nature of her reality and help her to make the best of that reality. Children on the spectrum deserve all the help, support and education that they can get to help them make the best of their reality. This means informing them as they grow up about the nature of their particular autism spectrum differences
The most common reaction I have seen is indifference. Autism spectrum children and teens usually have strong interests. Worrying about what others think of them is very rarely one of them. Instead they are interested in snakes or dinosaurs or Pokeman or anime, not diagnostic mental health terms. We know that it is difficult to get autism spectrum children to do “non-preferred” tasks – it is also difficult to get autism spectrum children to bother thinking too much about “non preferred” topics. They want to get back to reading their favorite manga! And just like one strength of autism spectrum folks is not caring about fashion or fads, it tends to carry over to not really caring what others think about them in this way either.
Another common reaction is relief. Most kids who are different and are high functioning, know they are different. They have often been called a lot worse names then “autistic” or “aspie.” To finally learn that their is a reason why they are different, and that it has a name, and that there are a lot of others our there similar to themselves, frequently comes as a great relief.
Yes, it does happen, but not nearly as often as you might predict. I have told kids who react with sadness and distressed to the news. For most, it hasn’t lasted long and I have often seen children become quickly cheered up by learning about successful people on the spectrum as their one size fits all notion of what autism is gets altered. There are a few who continue to struggle with it, having already internalized some of the negative views of neurodiversity present in our world. When that is the case, we can provide love and understanding, and perhaps help the child meet some others on the spectrum for mutual support. I close with reminding you once again of the analogy of a child who is blind. Even though we know that some blind children struggle with feeling bad about themselves, we still tell them and talk to them about it – we just try to do it in a loving and supportive way, letting them know we will provide them all the help and love and support we can to help them live their lives. I believe we can do the same for children on the autism spectrum.