How My Daughter Is Judged When People Don’t Know She Has Asperger’s
So this is going to be emotional for me, a personal and probably a poorly articulated post. I feel the need to write this for two reasons: therapy (at least for me) and awareness.
A few months ago, Jessica was diagnosed with Asperger’s syndrome. (And if you are wondering, I did ask Jessica’s permission before I posted this!)
Although it was a massive shock (to put it mildly), it was also like the light switch went on. The last 12 years flashed in front of my eyes, and they all made so much sense.
For Jessica, too, at last she knows why she feels so different to her peers, why the concept of friendship eludes her, why she struggles with the complexity of socially acceptable and unacceptable behaviors that can vary from one country to another, from one school to another, from one family to another, even from one person to another.
The point is, when I first found out, my brain did what it does best: research and see what you can do to help. And I did.
My heart, on the other hand, is still lagging behind — way behind. My other daughter has Down syndrome. You see, when children have Down syndrome, say, or any other “visible” difficulties, the “advantage” is that you know from the time they are born and can put everything in place for that special journey.
However, when it comes to children with difficulties that are not visible, well, they don’t get away with much. Not with parents, they don’t. At least not until parents realize it is not just a personality trait, or a phase they are going through and will grow out of, or “the middle child syndrome,” or because she has a sibling with special needs, or because we’ve moved so many times, or any excuse under the sun. Sometimes, any excuse is better than the fact that something is not quite “right” with your child.
And in that time capsule, from the time your child is born and you finally find out there is a reason why they are the way they are, there can be so much tension, so much frustration and so many misunderstandings from and between the parents and their child. So much wasted time and energy. Especially when that child is doing well at school and seems to just get on with everything that is thrown at her! If you’re lucky, that time capsule is short.
Bad parenting will always be the first culprit to that awkward sentence, that awkward behavior or that social slip. Why? Because the rest of the world can’t see any visible signs that that child is actually different. Just different.
You can’t blame other people for passing judgment. We are all guilty of it at one time or another and, to be honest, I do believe that bad parenting is to be blamed for a lot of children’s socially unacceptable behaviors. We are only human.
All I’m saying is, please try to keep an open mind. Not just with other children (or adults) who are not visibly different, but also with your own children. I wish I had noticed earlier that Jessica was actually different and not just a bit difficult.
The diagnosis didn’t change Jessica. She doesn’t need to be changed; she is a wonderful person with a beautiful soul. What the diagnosis did change was tremendous and so wonderful: the dynamics of the relationship she has with us is completely revolutionized. We finally get her, and that’s a relief not only for us but for her! There is much less tension and frustration at home. As far as she is concerned, she now understands why she feels like an alien at times and that there are a lot of people just like her in our world and that everything will be just fine, everything will be just fine…
Want to help celebrate the human spirit? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.