October 23 – That hard discussion about Aspergers with your child

There are many good blog posts on the topic of if and/or when to talk to your child about their Aspergers diagnosis. I don’t think I can equal them, all I can do is give my son’s and my own perspective on the topic.

Let’s start with IF. Should you tell them at all? As a parent, you don’t want to cause your child pain or distress. And here you have a diagnosis that may be eating YOU up inside. You may not have come to terms with it, or be mourning what will never be, or a thousand other thoughts. The key here is to think not of yourself but of your child.

So, why wouldn’t you tell them?

It would cause them pain – If you have gone to all of the doctors and counselors, your child is already confused and in pain.

There is nothing that can be done – Yes and No. Yes, nothing will take Aspergers away. It is how their brain is wired. No, many things can be done: accommodations made, reactions understood. These things can only be done when your child knows who they are.

They will feel different and isolated from their peers – Gotta break it to you, they already are isolated. And they are wondering what they did or did not do to get this way.

They will be treated differently by people – Again, this is already going on. You have probably gotten the notes from teachers. Noticed that they aren’t invited to birthday parties. The kids on the block do not play with them. Denial is not just a river in Egypt.

So given that the world is not kind or tolerant or gentle, why should you tell your child? Because they need the truth of who they are in order to deal with that world.

So, once you have decided that you will tell your child of their diagnosis, WHEN do you tell them?

This one is tricky. So I talked to my son who is now almost 19. He was diagnosed with Aspergers around 7 or 8. And we told him of the diagnosis at that time. He never told his classmates. The teachers at his school knew due to the IEP meetings and aide assigned to help him. He wanted to keep the information private and we respected that.

Now, as an adult, my son recommended not telling a child until the middle of elementary school, around third or fourth grade. He stated that younger than that, most children will tell their classmates of the diagnosis and in his experience, it won’t be good. It will be used as the reason for kids not inviting the child to events, parties, etc. ‘Not the Aspergers child, you know how disruptive they are’. My son felt that younger children will share the information, thinking it will make things better when it won’t.

That was hard to hear.  My thought was that classmates should learn soon after the child does. My thought was that it would have been better in my son’s case to have told his classmates in first grade WHY he had troubles in class, WHY the playground was torture, WHY board games on indoor recess days didn’t work. I was thinking there was compassion there that my son is sure was not. I know his classmates knew something was wrong. Kids don’t just have aides assisting them for no reason. Don’t explode due to small issues and scream the school down.

I have always wondered if I should have gone to the school and talked to the class about Autism and Aspergers and my son. Always felt that if I had done that, talked to them, it would have made things better for my son. Helped him get along with others. After talking with him tonight, what I gathered was it would have hurt at multiple levels. It would have invaded his privacy, which he guarded even at an early age. And that, in his opinion, it would have opened him up for even worse from the kids at school.

And that’s painful to hear. We stress to our kids to embrace diversity in race, in gender, in physical disability such as braces or wheelchairs. But Aspergers children don’t appear to have a disability and we don’t give them the benefit of the doubt, we just judge. And many times the parents are just as bad or worse than the kids.

As a parent, I would tell you that you know your child best. If you feel it would help your child now to know why they have the issues they do interacting with the world, tell them. Tell your child at a level that they can comprehend at this time. Give them examples of people in history who might have had Aspergers: Isaac Newton,Tesla, Einstein, your uncle or aunt.

Now let me tell you what it is like growing up with Aspergers and not knowing you have it.

I am 51 years old. When I was growing up, Aspergers was not known to the general public. An Autism diagnosis meant that the patient could not talk or interact at all with others and probably lived in an institution.

Growing up, my first memories are of being alone, being isolated, being different. In a family of four, I didn’t fit in. I could feel that from the beginning. The interests of my parents and sibling were not mine. Things that bothered me didn’t phase them. There was little to no connection with them. It was painful.

It was no better with the kids in my neighborhood. I found kids my own age immature and interested in boring things. I would rather talk to the grownups about space and science than the kids about cartoons or dolls.

Perhaps that is why Mr Spock and Star Trek made such an impression on me. I saw a character isolated among the people he worked with, lived with. He was smart and helpful but that didn’t help him bridge the chasm between himself and his coworkers. So I modeled myself after him. Kept my emotions in check, especially my impatience with others, my frustrations at their seemingly foolish actions, my temper at their lack of compassion for those they didn’t understand.

It wasn’t until I went to Engineering School that I truly felt like I belonged, like I was at the right place, doing the right things.

So would it have helped me, so long ago, to have known why I was the way I was? Yes, it would have. I wouldn’t have blamed myself for the way I was, wouldn’t have pushed myself to try to change myself so much, tried so hard to ‘pass’ as normal.

When the time came, and my son was diagnosed, and I researched the genetic aspects of Aspergers, I realized that he had inherited it from my side. That my father’s family had several occurrences of autism, mostly Aspergers. And that, I probably was undiagnosed with it as well. This realization colored my husband’s and my thinking on when to tell our son, we didn’t want him wondering WHY was he this way. So we told him soon after the diagnosis.

Whenever you have the discussion, if you come to the discussion with love and acceptance for your child, you start at a good place. Your child needs love and acceptance and the knowledge that you have their back, that they aren’t alone no matter how they may feel. That there are many of us with Aspergers that live happy fulfilled lives who welcome them into the club and we have their back as well.

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2 thoughts on “October 23 – That hard discussion about Aspergers with your child

  1. Pingback: The 31 Day Challenge | mjsmentalmusings

  2. I found this to be such an interesting post. It has to be most difficult to tell children of a diagnosis. I think your post shares wisdom from both a parental & child’s point of view. You did what you truly deemed as best. Probably each situation would need to be assessed individually. Your son has given much food for thought from his perspective as well. Wonderful post! I am visiting from the 31 Dayers FB site & am glad that I was here!

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