Tomorrow we get Youngest sons diagnosis. It’s his third week at the assessment nursery and then afterwards they will impart their findings and from that point on, life will be different.
I remember it well with his older brother. We had fought for so long for someone to take our fears seriously, yet when they did and they finally gave us their diagnosis, we were still shocked. It wasn’t what we were expecting, we were in a meeting of a group of professionals and were so stunned we couldn’t speak. Not for the lack of words, more for the fact that its easier to hold back the tears when you don’t have to say anything.
Autism was rainman wasn’t it? Our son wasn’t anything like that so clearly they were wrong?
Research and time has taught me a lot. And not all of it has been good.
My anger started with the truly awful NHS guide to Autism that they gave us on that day. Everyone pointed out that god awful poem about thinking you were going to Italy and finding you are in Holland, and how wonderful Holland is if you only give it a chance. I’m sure some of you will be familiar with it and some of you may think its a wonderful piece. But I have a huge problem with it. That problem is that while the concept is a good one, it compares finding out your child has Autism (or any other kind of disability) with a holiday. And let me tell you, life with a child on the spectrum is no bloody picnic and to compare it with something as frivolous as a holiday is to show you have no understanding of Autism and are insulting my intelligence.
I love my son dearly and if someone offered me a “cure” for his Autism, I suspect I would turn it down but it is hard. There are sunny days and rainy days and some black and thundery days but it’s always there, making its presence felt, it is there forever and it’s certainly no holiday. If they give me that book again tomorrow I think I will scream.
There is always a lot of negativity around Autism, there is the “disability” and the “triad of impairment” and that’s just for starters. Basically, the world views Autism as “wrong”. It’s different, therefore it is wrong. Who the hell decided what “normal” is anyway? Or should that be “neurotypical” as “normal” is too vague?
I didn’t think the diagnosis would make much difference to our lives. We’re still the same people right?
Wrong. You now have a badge, a stigma that can be used to your advantage in some cases, but most often is used against you. You can now get support and advice, which is lovely, but you also now get left off invitation lists, whispered about and actively avoided. You are the subject of blatant criticism from your family and are viewed with suspicion by everyone else.
So “Diagnosis Day” is a bit of a double edged sword. While on the one hand, it’s nice to know what we’re dealing with, on the other, I know that a sharp blade can cut very deeply. I keep thinking to myself that it’s easier this time as we know what to expect. I think I’m trying to convince myself of this more than anyone. But in the dark moments, when no-one’s watching, I know what it all leads to.
The fighting for support in school, my child being the only one in his class not being invited to birthday parties, the whispering in the playground, the bullies, the people looking down at us because our child is unruly. Or worse, the looks of pity.
No mother would wish that for her child. And now I’ve experienced it with one, it scares me even more now that I know what the future will hold. Discrimination is a dirty word but it’s out there, everywhere. It breaks my heart that people will judge my boys their whole lives, not through how wonderful, bright and funny they are, but by a word.
One single, tiny, six letter word and they will have to bear it, like a scar, forever. Whatever happens tomorrow, my family may be “different” but they’re still mine