When to tell
I recommend sharing earlier rather than later.Sometimes the child is informed as part of the diagnostic workup. If that was not done, I would wait until you as the parent have read up on what the diagnosis means and have a good understanding yourself of the associated strengths and weaknesses. Check out some of my blog posts on the diagnosis if that would help.
If the child is young, then initially you do not have to share a great deal of detail, especially if the child doesn’t show much interest, and over time you can continue to build on the the foundation that has been laid. If the child has heard the diagnosis before it doesn’t come as a surprise later. Some say to wait until the child is asking about their differences but this depends on the child. Some never notice ( especially given that self awareness and discussion of feelings are not usually strengths of a child on the spectrum) or sometimes by the time children talk about it they have already been teased and bullied about those differences, often leading to a drop in self esteem. Therefore I suggest being proactive and talking it early, maybe watching for teaching moments to arise.
Who does the telling
You can bring in reinforcements if you would like! As a therapist have told many children and teens about their diagnoses, upon the request of their parents. Alternatively, I have worked with parents on how to tell, and then they talk about it at home with their child. It can be helpful to use books about the spectrum too (check my last blog post about some suggested publishers and books for ideas).
What to tell
My basis approach is to talk to the child about his particular set of strengths and weaknesses or just things that are true about him. I use a piece of paper or a white board (remember to use his strength and make it visual!). As a whole, I suggest being direct and using visual aides, avoiding metaphors and analogies. I ask the child to name some of the things he is good at and the things at which he is not so good while I am writing on the board. Then I might add things I know of and that parents know of, if they are with us. We might end up with a list that looks like this:
Knows everything about snakes!
Follows the rules.
Tries to get others to follow the rules too.
Good at math.
Has a good sense of direction.
Tells the truth.
Likes things more than people.
Good at taking things apart and putting them back together.
Hard time making and keeping friends.
Doesn’t like to make eye contact.
Sometimes talks too much about snakes and other people get bored.
Not good at book reports.
Can’t stand loud noises and bright lights.
Doesn’t like it when there is a substitute teacher.
Can’t tell time.
Doesn’t remember the names of his classmates.
We usually end up with some things on the list that are not characteristics of an autism spectrum disorder too.
I then circle the things that are autism spectrum characteristics, and tell them that these thing have a name and tell them what it is.
The spectrum of autism
Depending on the child’s age, I may end up telling him there is not much difference between his diagnosis (let’s say it is high functioning autism) and other diagnoses on the spectrum, such as Asperger’s Syndrome. One reason this may helpful is when we are going to suggest books for him to read. There are books that are good for kids to read that have high functioning autism but they are written using Asperger’s as the terminology. Or, the child may have heard the other terms or know someone who is similar to him but with another diagnosis, and it may help to explain this fact.
Alternatively it may be important to add some additional explanations about the spectrum nature of his diagnosis. Some children already know something about autism, and wouldn’t see themselves as having it.This especially comes up for higher functioning children who only associate autism with lower functioning autistic children. To help explain the spectrum nature of the diagnosis I may add to our list things that are true about others on the spectrum. I then show that some things are true about one child and some things are true about another child, but that each child might still have the same word used to describe him or her. I have made myself a graphic of a jigsaw puzzle with a wide range of ASD strengths and weaknesses, and we can color in the things that are true of the particular child in question. I always include strengths as well as weaknesses.
You might want to view my YouTube video about telling teens who have recently been diagnosed, and read my post about famous people on the spectrum for dealing with self esteem issues. Additionally, I have another YouTube video on a different strategy for discussing the diagnosis.
In the next post, I will talk about the range of reactions I have observed from children about the diagnosis.
How have you explained the diagnosis to your child?