L was always a bit "quirky". A dear friend of mine has a son one year older than L who is Autistic, and I could see enough similarities between the two boys to know I could get L diagnosed on the spectrum if I wanted to. But I didn't want to and L was coping fine, so I put it off. He was about 8 when he started having major problems with anxiety, and I knew I couldn't wait any longer- we needed some help because all my natural, instinctive reactions weren't helping. We sought a diagnosis, and got it. Aspergers Syndrome. It was like someone turned on a tap and all this help came rushing out! Occupational Therapy, Speech Therapy, Physiotherapy, Psychologist, Paediatrician..... We were ready for help and we got it. It was great.
When G was little we knew pretty early on that she was a lot like L, but seemed to have more struggles. She had more issues with sensory sensitivities, sleep and communication. So, in an effort to avoid G having the same anxiety problems later, we decided to seek an early diagnosis. I took her to see a paediatrician. He is a lovely, gentle man. I told him my concerns and asked him did he think she might have Aspergers too? We talked some more, I answered lots of questions. He said, "Michelle. Your daughter doesn't have Aspergers Syndrome. She is Autistic." He told me that I was doing a great job with her. He gave me information about the services available. He smiled and said take this letter with you, you can get lots of help. See you in 6 months (there was more to it than that- but that is the short version!!).
I felt like my ears were ringing. I drove home. I had to go pick up the other kids for school, and friends were waiting for me to fill them in on my appointment. I put on my happy, confident face, and did what I needed to do. I told them all what he said. They wanted to know what it meant, and I said calmly something along the lines of oh- it's not that different than Aspergers, and we know how to deal with that. Inside I was in a panic. Not just a little one. A big fat panic. I was ready to hear "Aspergers". That would have been fine. I kind of felt like it would just be a case of whatever worked for L just do that again and everything will be fine. You know- rinse and repeat?! Hearing the words "She is Autistic" really, really shook me up.
During the almost sleepless night that followed, I wrote in my journal. I am going to transcribe the entire entry, even though it is a bit uncomfortable doing it, because I think there are some things we don't talk about enough, that we should talk about because it helps to know we are not alone in the way we feel. Here goes!
"Labels are odd things. Cruel in so many ways.
"He has Aspergers. Aspergers Syndrome. It is an Autistic Spectrum Disorder. Mild. If you have to have Autism, Aspergers is an OK way to have it. I've heard myself say all these things. They don't sound too bad. He has Aspergers.
"She is Autistic. We don't say she has Autism. The diagnosis is Autistic Disorder. It sounds just as bad either way. Autistic Disorder. She is Autistic. I can hardly choke the words out of my mouth. Oh- I say to friends- it's just a bit more complicated than Aspergers- We'll be right. While in my head I can hear myself screaming //insert nasty swear word here//.
"She is Autistic.
"She IS Autistic
"She is AUTISTIC
"How can I use the word "disorder"? Like my child is broken. Disorder. Out of order. Something is not working right. Something is wrong.
"Cruel to be kind, he said. The label sounds cruel, but we use it to be kind, to get help. When is cruel kind??? Cruel is cruel. Always. Even the help that the label uncovers is cruel- the way you have to hunt it down, then prove you are eligible for it. "
I took a break at this point, mostly because I couldn't see the page properly from crying. A bit later, I came back to it...
"So- I am angry at the word disorder. And I am angry that she *is* something. Something that is seen as negative. Why is it OK to "have" some things, but other things we say "is"? I do not want her life, or mine, to be defined in this way. Yet it will be. Because people prefer there not to be difference, I will spend a lot of her life working hard to help her deal with other people not being able to cope with her being different.
"//Insert another nasty swear word here//".
And so I raged internally. For quite a while. I was so very angry. Then I was sad. For quite a while.
And then, I just got on with it. I mean, I had been physically getting on with it- applying for stuff, making appointments, organising- but it took a while for me to mentally get on with it. But one morning I just did. And I still do. I do have times when I am sad again. I think that the grief is something that stays in the background and pops up from time to time just to remind us that it all sucks! I try to be easy on myself during those times. I try to remember that even though most of the time I feel fine, and life goes on "normally", my life is not normal, and it is OK to not cope sometimes. I try to remember there is good reason for me to be tired all the time. I try to remind myself that even when I feel out of my depth, I am doing OK.
So far, I have not experienced that depth of anger and sorrow again since that first week or so after G's diagnosis. I hope I don't- it was awful! But I feel somehow stronger for having experienced it, in an odd way.