Full Disclosure – Part I: The Kids

I know many parents of children on the spectrum that struggle over when they should tell their child that they have an ASD. I’ve never considered anything other than full disclosure at the earliest appropriate time. My motivation for this is simple: There’s a lot to gain from full disclosure and anything else has potential for harm.

I never want my boys to hear their parents talking about autism or asperger’s behind their back. I don’t want them to think that there is something so wrong with them that we can’t talk about it. They are both aware that they have difficulties; they experience them first hand every day. If we fail to talk about it, they’ll likely think that “something is wrong with me” rather than “I am different, and that’s OK.”

I want them to feel that autism / asperger’s / pdd is part of who they are and that we can talk about it as easily as we talk about any other aspect of our lives. I want it to be a topic that has no more emotional baggage than talking about school or the weather.

I want knowledge of autism to be part of the basis upon which they learn to know themselves as they grow to adults. I want them to recognize their strenghts and be willing to learn and be coached in the areas that they need it.

Of course, it’s necessary to tailor the disclosure to their ability to understand. It varies with each child and it varies with their age. I’ll continue to add information as they are capable of processing it. The objective is not to have a one time conversation that results in their knowing that they are autistic. Instead, the goal is to foster a continual dialogue over a long period of time. Like all aspects of raising children, it’s not a sprint, it’s a marathon.

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3 Responses to Full Disclosure – Part I: The Kids

  1. Valerie says:

    I have to agree with you here. Our son is now 17 but since he was five years old and first enrolled in school, we knew he was different. Actually before school began we knew and just did not know how to deal with the school and how to let him know about his “differences” if he ever asked.

    One day years later he said to us, “Why are some kids so mean? Is there something wrong with me?” We told him that the “mean” kids had “issues of their very own”, such as; low self-esteem, a bad home life, got teased themselves by others, big sister or brother picking on them, and many other reasons so they tease too thinking it may be fun, or whatever. We told him from the beginning (age appropriate to his level of understanding-which was quite remarkable for such a young child at the age of around 8-9) but we just told him that “Yes, you are different, as you need to work on certain sounds(words and/or letters), and you are small for your age but then again, some kids as you see are quite large, and many differences between everyone. Some kids are good at math, some at writing, some at art and music, others at dancing and even others may be good at sports. When you find something that you enjoy and feel good at, then you will see that kids will look up to you, as you may look up to others that are good at doing their thing. We all have a special unique ability and when we find this then we can advance in that as we gain knowledge. Not in so many words, as that seems SOOOO long ago but basically that is what we told him. Again, he is 17 now and has a beautiful heart of gold. We just told him not to worry too much about the things he felt “not very good at” and to work on things he loved to do that give him joy as the confidence in these “good areas” will help in the areas that he was not so good at. We have discovered this to be very true in the areas of his weakness because of the higher confidence in the “good areas”. Hope I made sense there. He tells everyone he loves writing (already received a desktop publishing award for his short stories-dragon, magic style mystery/fantasy genre) and he wants to study Myrmecology-the specific study of ants. So he has found something he loves, is good at and the weak areas seem to be improving dramatically due to his higher confidence. He even says to us, “Yes, I may be different, but this is better in so many ways as to be just like everyone else, now that would be BORING!”

    Best advice, talk to your kids like little adults, (age appropriate once again…but children understand a heck of a lot more than many give them credit for). I know I understood A LOT when I was growing up, and to this day I am upset a little about my mother and grandmother NOT telling me the truth when I would ask a question. I was very slow at speech and talking made me VERY nervous, and I was and still am VERY slow at math. My grandma and mom would just say, “Oh, you are good at math…” HMM, so why do I get such low math grades? So again, be honest with the children I agree.

  2. Lili says:

    First time poster here- I have Asperger’s Syndrome and am mother to one child with Asperger’s and one child with autism.

    Obviously my Aspie-ness makes me truthful by nature, but I simply cannot fathom a parent not wanting to disclose to their child that they have an ASD. It seems that a parent would have to go the great lengths to hide that fact, and in the process do so much damage to the trusting relationship that should exist between parent and child.

    I was not diagnosed until recently (partly because the Asperger’s diagnosis did not exist when I was a child), and for me it was like having someone turn on a light in a dark room. Suddenly I understood why I had always felt that I was fundamentally different from most of the people I knew. Until my diagnosis, I was convinced that my social problems were a result of some shortcoming or defect of character on my part. It means so much to understand that there is a reason that I am the way that I am. I would never dream of denying my child that same knowledge.

  3. Shawn says:

    Valierie and Lili, interesting perspectives.

    I think all parents underestimate their children at times. It’s good to push ourselves to look closer and recognize their capabilities. I also think some parents may not discuss a diagnosis with their children because they are uncomfortable with it. Unfortunately, this lack of knowledge leaves a child feeling that they have that ‘defect of character’ Lili described. That’s a heavy and unnecessary burden for any child.

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