Disclosure.
It's a pretty big decision and one that is individual to every family and parent raising a child with autism. Who are you willing to share the diagnosis with? Everyone? No one? Eventually you have to ask yourself.... Do I tell my family & friends? The schools? Do I tell my child that he has autism?
I've sat in on some pretty passionate debates over this topic, and like many other aspects of raising a child with autism... it can be something that parents have strongly held beliefs about.
I believe that the choice is individual to each family, and the reasons for each family's choice are their own. That said.... I choose disclosure. I disclose my boys' diagnosis to everyone, I don't ever keep it quiet. Today I will share some of the reasons why:
Self-acceptance:
It's very important to me that my boys grow up understanding who they are. At almost 13 years old Liam is emotional, creative, quirky and humourous. As with any adolescent he is becoming interested in his role in society. From his family to his school, in public and beyond, Liam tries to see himself through other people's eyes. He wants to understand how he fits into his social circle.
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| Liam is on a journey of self discovery |
Liam is very aware that he is different, that he doesn't just slip into social situations with ease; that requires effort for him. He understands that emotional regulation is challenging for him. He knows that his interests are quite different than those of other boys his age. It's important that he understands the reason he struggles - and that reason is autism. He went through a phase where he was interested in his brain - he wanted to know how his brain was different than the brains of his neuro-typical peers. We looked online and on youtube and we talked to his doctor. He even had the opportunity to look at an MRI of his brain that he had done for research.
I fear that if Liam didn't know that he is autistic, he would know that he was different, but not why. He might think of himself as less rather than unique. When Laim and I discuss some of his struggles and strategize solutions... learning about autism gives us context; some rhyme and reason behind his reality. We talk about autism a lot, and about how it affects his view of the world and the world's view of him.
Sometimes Liam is very upset about the fact that he has autism - he tells me there should be a way to cut it out of his brain and make him just like everyone else. My instinct is to remind him of the things about autism that can be advantageous, that make him unique: his amazing memory, his talent for imitating accents, his vast general knowledge of quirky trivia, his own irressistable charm.... But I try to fight this instinct - I think it's important to let him be angry about having Autism, it's his struggle and he doesn't have to just sit back and accept it. But it's important to me that he understands that autism is what causes his struggles - that he doesn't just have a flawed personality... and that's exactly what I fear he would think if he didn't know he has autism.
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| He's not bad-tempered.... he's autistic |
Liam has always known he has autism, I didn't sit him down one day and explain it to him. As he was growing up I would talk to him about it. When he struggled in ways that his peers obviously didn't we would talk about autism and how it was affecting his behaviour. I have always wanted him to understand himself.
Because he needs to be able to advocate for himself.
I believe that this approach is the right one for my family. I want my boys to be strong self-advocates and to contribute to their communities to the best of their abilities. And this is why transapancey and disclosure is the right choice for MY boys.
