To Tell or Not to Tell

Its one of the hardest decisions. Do I tell my child they have Autism? If their low functioning will they even understand? If they're high functioning and doing well, does it matter? Will telling them make them conform to a label?

As the parent of a child with Autism I understand these frustrations and one day I may be faced with the situation. I think this decision is personal to each person. I know, being the type of person I am, I would rather know than not. To me its like the doctor withholding that you have cancer. Now we all know that Autism is nothing like cancer. Cancer can eventually kill a person, but Autism alone does not.

First I think its important to know your child is aware there is something "wrong" with them from a very young age. My son asks me why he has to see so many doctors and he is almost 4. My husband and I don't speak about Aiden's Autism on a daily basis by any means, we just know its part of who he is and we just accept it as part of our normal daily life. If I have to take Aiden to a specialist I say "Aiden has a doctor appointment", but I usually don't have to elaborate. We don't refer to our therapy team as their specialization, like our ABA or OT, we refer to them by name. Still he knows. How? His sister. Our daughter, from what we can tell, is neurotypical. She goes to the appointments with us, but is not there to see the doctor.

For right now, when Aiden asks me what is wrong with him, I simply respond: "Nothing, you are just so awesome and everyone wants to know why." That's good enough for now. I know, when he goes to school, one day he is going to ask me "Mom, do you ever feel different for other people" or "Mom, I don't think I fit in" or "Mom, why is it so hard for me to make friends?". That is when I'll know that it is time to start talking about it.

How you tell your child is going to be important. How you tell them can set the tone for how they react to their own diagnosis. Have you ever received a life changing diagnosis? The day I was told I have psoriatic arthritis and would need medication for the rest of my life was a life changing day for me. The day we received Aiden's diagnosis was a life changing day for me. Those are days you don't ever forget. That will be this day for your child. You need to know your child's temperament, personality, and character. Talk to your child's psychologist or trusted member of your care team around your child's 5 or 6th birthday. High functioning children become self aware of their differences around the age of 6 or 7.

So what about the children who are lower functioning? Remember, low functioning does not necessarily mean unintelligent or low IQ. I've discussed this in prior posts. Its fair to assume they know there is something different about them at or around the same time as their higher functioning or neurotypical peers. If you chose to tell them I would do so around this same age.

How do you introduce it? Slowly. My son is involved with the Autism Society of Greater Orlando, so I can only assume, at some point, he will put two and two together, if you know what I mean. He will draw the connection on his own. I envision the conversation starting with one of the questions I mention above. Of course I feel different than my peers. I've always felt that way, even from a young age. So I would start out by saying "I understand how you feel, but sometimes there are reasons for our behavior that other people can't understand without help." Like what? See I have this question easy. I'm a cop for a living, most of you know that from my prior posts. We act differently than other "normal" people because of what our job expose us to and how we are trained. I mean do you really care if your back is to a door at a restaurant? Probably not a deal breaker. For us, big issue. Those kinds of things. So I'd probably point out some of the weird things I do in public because of my law enforcement background. Then it would probably transition to "I know I am different because I was trained to be. You may feel different, but that is because you were born with a different way of thinking than other people. The way you think is known to others as Autism." That begins the questions.

You know the level you need to speak to your child on. Their "maturity" level as its called. Try to explain it in a way that is easily repeatable to their friends, if they are verbal, but make it clear they don't have to tell anyone if they don't want to. Welcome their questions with an open heart and open mind. If you don't know the answer don't make something up. Ask them what they think and if they don't know, then take it upon yourself to find out for them. Tell them you'll look it up or ask. Don't be afraid to show your humanity to your child when you are reminding them how human they are. You are not superior, you are experienced, there is a difference in the delivery and that is true for all situations, not just parenting.

Older children may have an idea of what Autism is. They may already have associated it with being something negative. You will have an interesting set of challenges as a parent in this situation. I still believe they should be told, but don't be surprised if they don't want to talk about it right away. Respect that space. Tell them you want to talk about it and answer their questions. Enforce that this is not who they are, its just part of who they are. Remind them no one is perfect, and this is a hurdle that they will overcome in their life. But above all remind them they are not alone in this. You are there for them. Let them come to you when they are ready. They may do some research on their own at first. Never demean them from doing that, instead applaud them for their maturity and for educating themselves. Engage them in the topic they present, be honest and sincere, but not judgmental. Unless you have Autism, you are limited in knowing the full extent of Autism. I can research Autism, write this blog, live as a mother to a child with Autism, cry with him, hurt with him, and fight with him, but I can not be him. I cannot live his life. As much as I may wish to jump into his head for one day, I can't.

Remember to think about how you're going to deliver this information to them. How you tell your child about their diagnosis will set the tone for how they feel about themselves. The diagnosis is not a definition of who they are. When people ask your child to describe themselves, what would you want them to say? Autistic is not what I want my son to say first, if at all. Autism is just one part of who he is. For other parents, especially with those who have low to moderate functioning loved ones, they may want their child to introduce themselves and immediately volunteer the fact that they have Autism. This is a safety concern I understand and advocate for based on the individual.

This is just my opinion on this topic. Some others may feel differently than I and that's ok. As always, we here at Aiden's Heroes are here for you.