Dear Ken Stewart Family Centre,
I don’t remember the names of the workers that my mother and I dealt with when I was attending your centre for 6 months (once a week for 6 months).
I barely remember what they look like. I remember there was a man with brown hair, and I remember that there were two women, and that I occasionally saw a psychologist type who was also a woman.
Every Thursday for six months I was picked up from my lower school (when I was in year three) and I was taken in a mini bus with a bunch of other children to your centre. There were large rooms for art on the ground floor, somewhere on the 2nd floor there was a soft play room that we all loved going into, there was another room for both play and assessments where individually we’d be sat down and talked to and asked to do things or talk about things on this floor. Right in the attic there was a very large play room and there was a toy phone and reading books, there was a toy doll house -and we were told the story (or read to each other the story – I can’t recall which) of the Boy Who Cried Wolf. There was also an outdoor play activity area – and sometimes we had picnics.
In school I didn’t fit. I didn’t have the language – I didn’t have the way to explain how I knew I didn’t fit – I knew that everyone perceived me as different – that I HAD to be different, but I didn’t know what the differences were. I was seven when you saw me and I still had no idea what the differences between me and my classmates (and the adults) were. I just didn’t get it. I couldn’t understand HOW I was different.
At the centre – I fit! I knew one of the boys from church- I interacted with difficulty with the other children there – but I liked them well enough and we interacted as necessary. We mostly played by ourselves alongside each other and were happy to do so – and sometimes we approached each other.
That’s what I had been told I was there to learn. I was told I was there to learn to play with others. I was told and understood that the whole concept of me being there was to learn to play with other children because I got bullied so badly at school and thus needed to learn.
I had no idea that I was actually being assessed for my autism. The other children there had already been assessed and KNEW its what they had. They KNEW they were autistic or had Asperger’s Syndrome. When we interacted with each other in the attic we even compared one time – a bunch of 6 to 9 year olds all describing some stuff to each other and going “me too” – like proper little adults.
I don’t know how you tested me. But I know you got it wrong.
See- when my six months was up – it was end of term, the children were all saying goodbye for the summer and they’d be back again – and I was all excited and saying I’d be back soon and I WANTED to be back and to interact with them – they were my friends. Except you said no.
I remember saying I had the same thing as those children and I remember the man saying that I didn’t and so wouldn’t be returning. It was a massive blow.
I don’t know how it affected by mother – but for me – being told I DIDN’T have what they did, and I wasn’t coming back felt like a massive whump. I wanted to cry, I might well have done, I felt it was wrong and I was very upset. I wanted to come back, and I had belonged, wasn’t being bullied, had friends and now I was being told I DIDN’T belong.
I knew you were wrong. I knew that you got it wrong.
You had me for 6 months – and you were wrong. You were trained professionals and you got it wrong.
So I was sent back into normal school. And the bullying got worse. I had to leave the lower school you’d been picking me up from because a teacher had seen a parent telling her daughter to push me into the coat pegs. I went to a different school were the teaching was fantastic from the Year 4 teacher (I only got half a year with him) but where I as accused of being racist where I wasn’t and had boys deliberately smear dog poo on my dress.
I went to middle school and was bullied badly. I had my nose broken. I developed alopecia and my hair started to fall out in year 5 (when I was 10 years old). I would have girls from the year below me when I was trying to read quietly in the corner of the playground come up to me and sing “U-G-L-Y” at me.
I grew up, knowing I was different, having it become more and more obvious and with the bullying getting worse and worse. My mother worked at a special school – and one day had to bring me into work with her.
The other people that worked with her, the ones that had insisted her daughter couldn’t POSSIBLY be autistic and not in a special school instead of in mainstream school… all went up to her afterwards and said: “Wow – you were right – your daughter IS autistic.”
They got that from 2 hours. 2 hours where my mother came in, did her hours worth of work as a lunchtime supervisor, wrapped up and went home with me. I played with the other kids there, I fit with them nicely and they welcomed me and we got on just fine for that hour or so that I was there.
They saw in 2 hours or less – what you missed after 6 months of weekly sessions where I was in your care for 2, maybe 3 hours at a time.
The difficulties that my family and I had while I was a teenager were magnified because they didn’t KNOW for certain that I was autistic.
They felt it very strongly, but you had said no, they were uncertain. I wasn’t diagnosed, you had said no.
When I was 22 years old- I had to prove for social services and the court that I was autistic as I claimed to be.
I went for 6 sessions with a clinical psychologist who interacted with me. She phoned my family and had interviews on my background. She studied my answers to questionnaires and we had interviews and so on. There was even someone else doing training to observe some parts of my case.
I was diagnosed.
Asperger’s Syndrome. Absolute DEFINITE – No doubt in their mind at all.
I was given pamphlets to see what limited supports and things they could do for me now post adult-diagnosis of my condition.
You. Were. Wrong.
6 Months. And. You. Were. Wrong.
I get that everyone makes mistakes and that sometimes people slip through the cracks.
I get that because I didn’t have any kind of a diagnosis it wasn’t like schools to give me any REAL support for my difficulties. They couldn’t afford to hold my hand through the things I struggled with – I had to buck it up and learn like the rest of them.
I understand that my family were at the end of their tether. They knew something was wrong, didn’t know what – and they didn’t know for certain. I could have just been playing them and they didn’t know what to be strong on and what to make allowances for. So it damaged our relationship to a degree because we just didn’t understand each other – and I was getting more stressed and depressed because I didn’t fit right, and I was making my family upset with me.
I was making my mother’s depression worse. I was just wrong.
I get that people make mistakes.
But it could have been prevented if you hadn’t.
The MULTIPLE suicide attempts I made during my teenage years MIGHT have been avoided had you NOT gotten it wrong.
(They might not have, I’m willing to accept that’s a possibility).
It has taken until I’m in my mid-twenties for my family and I to really start clicking, seeing eye-to-eye with each other and develop proper coping strategies. To read up on all the things related to my condition and do the check lists – to find out what works for me and what doesn’t.
We still have mistakes that are made and awkward moments and still get angry with each other sometimes. There are still times when we mess up -but there is more understanding now. Forgiveness is a little quicker. The learning curve on both sides becomes slightly less steep.
But you were wrong.
Think of how much more progress we might have made, had my diagnosis been 18 years ago, and not 3.
You were wrong.
And I’m still kind of mad at you for that.
Every time my mother bursts into tears because she didn’t know then what she does now – and all the time we lost…
I’m kind of mad at you for that.
6 months. And you got it wrong.