My daughter, Ava, was just shy of three years old when she received her autism diagnosis. I remember sitting in our developmental pediatrician's office and hearing the word "autism" leave her mouth with a sense of unforgettable finality. As a mother, I was at a loss. But three years later, that early diagnosis has changed everything for the better.
Like me, many will have been bounced from doctor to doctor and many may have been written off as neurotic or attention-seeking. Or, perhaps worse, misdiagnosed and treated for a condition they do not have. Often autism in women is mistaken for a mental health issue, such as Borderline Personality Disorder or Bipolar Disorder.
However, here in London I was inundated with emails and messages from hundreds of adults who have Autism, each one expressing why lighting up BLUE actually offended them, deeply hurt them and misrepresented them for several reasons. These weren't petty little reasons, these had been justified by the continuous pain of being misunderstood and misrepresented.
I am currently having a battle with my conscience. My daughter needs more than the mainstream education (in a very good, very accommodating school) can offer her, but if she goes to special school I am responsible for denying her mainstream peers a fantastic opportunity to learn more about her and her condition, which, eventually, I would hope would lead to greater acceptance as she grows up and tries to make her own way in the world.
I on the other hand, wondered what the shitting hell had happened to me. My body had been violated, I was exhausted and all of a sudden I had to deal with this crying seven pound bundle of skin and hair. I wondered where my motherly instinct had pissed off to and why I had no idea as to what type of cry my baby was making. Please tell me I am not the only one who could not decipher, hungry, tired, sick and bored cries?
I felt angry at nobody other than myself; I should have pushed harder so that it hadn't got to this stage. The person who needs me most, I had let down badly and no matter how many supportive words of there being nobody who could fight harder for this boy, it does not soothe the pain I feel right now.
The wheelchair has been great. Pushing him in it is much easier than the buggy he was too big for. And sometimes it helps by providing a quick explanation to strangers when he has challenging behaviour. I suppose because with a wheelchair, disability is quickly visible. But it took a while to get used to having it...