For the last few days I have seen lots of posts and reaction to the decision your trust has made to no longer diagnose ASD unless there is a co-morbid mental health condition.
I hope that your trust is working with CCGs and other resources to make sure that children and young people who fall under your trust, still get access to an NHS diagnostic pathway. If so, then you might want to let the public know as this is causing huge waves in the autism community, which, due to social media, is massive.
I would like to tell you about my life, growing up undiagnosed.
I grew up on a council estate in the 90’s in North London, just the other side of the Thames.
I don’t remember much of my early years, I remember being in school and using my hands to communicate. I remember going to a karate class and using my hands rather than my voice. I remember being very frustrated, and the destruction I caused when I was unable to control my emotions.
I vividly remember my teacher trying to block the door so I didn’t escape after I had pulled down the bookcases.
Behaviour is communication, I was trying to communicate, but instead of people seeing me as frustrated…. they saw me as frustrating. I was the ‘feral child’ from the estate. I had no friends but that was put down to my behaviour and kids being ‘wary’ rather than the fact that I wasn’t able to make friends.
It was all put on me. If I just learned to control my emotions and stop having ‘outburts’, kids might want to play with me. If I could just look at people and talk to them properly I would find it easier to make friends. So I had adults at school sit me down and try and try to help me with what to say and what not to say.
Although, adults would constantly tell me I had to learn to behave myself, but didn’t give me any advice or help. They assumed I chose to behave that way.
Kids would call me weird. I was called a ‘spaz’ lots of times (by adults as well as children) for moving my hands too much. So I learned to hold things or put my hands in pockets or under tables.
As I got closer to secondary school, I would say things that I thought made complete sense, but I got into trouble for it. Something I said in one place was fine but in another was not ok. It was confusing (it still is!).
At secondary school I was bullied a lot. I was also taken advantage of and sexually abused by a group of boys. I thought they were my friends.
I had some teachers that took the time to try and help me to find better ways to deal with anger and frustration, but never looked into the root cause of the frustration and anger. I learned that I had to act like the other kids in order to not get into trouble all the time.
At home I got into trouble a lot. I didn’t give my mum eye contact when she asked me questions and often got punished for ‘lying’ even though I was telling the truth.
I made a friend at school and I did my best to be more like her as she was popular but not in the popular crowd. She was funny and smart and never really got into trouble except for things like correcting teachers or being a ‘smart arse’, which I was accused of too, except I wasn’t academic like she was, mine was more being logical and pointing out things I apparently wasn’t meant to.
I never understood why I was the way I was, but I knew what some teachers, some family and some of the other kids and parents on the estate thought of me. I may not have been the most intelligent person in the room, but I am not hard of hearing.
that angry kid
council estate mentality
lacks self control
These were labels others gave me… I wish that I had the RIGHT label- autistic.
When people see a child as naughty, they think punishment.
When people see a child as struggling, they think of help.
I made a friend when I moved to a different estate at 14, and at 16 lived with his family for a while after difficulties at home, which resulted in social services being called.
At 18 I went into semi independent living.
At 21 I became pregnant with my daughter, and was a single mum from the outset. I then moved in with my friend’s older sister.
I was struggling massively and she decided to move back to London.
My daughter was diagnosed with ASD after 2 failed mainstream placements by her 6th birthday.
It was her assessment process that made the mental health services I was trying to get support from for my PTSD, start to consider autism for me.
Now, I don’t think I was feral, or naughty. I know I was struggling. I know why I find it confusing the rules about when you can say things and when you cant. I know that my ‘outbursts’ were not because I was a council estate kid… but because I was unable to express myself so my behaviour became my communication.
Now that I have a diagnosis, I can be kinder to myself, because I know I am not a bad person, which is how I was made to feel.
The difference it makes is incredible.
I think things may have gone differently with my daughters school had I had the diagnosis then, as they were quoted in reports saying that my mental health is a barrier to effective communication, and that I am odd and strange.
My daughter’s new school are very helpful and wouldn’t dream of using any of those statements because they know that I am autistic.
I am glad my daughter got her diagnosis early (for a girl especially), as she now goes to a school which requires a diagnosis of autism, she goes to specialist groups, which require a diagnosis of autism, and she gets the help she needs… thanks to the fact that our local health trusts diagnose children and adults who are autistic.
My mental health is a lot better thanks to my diagnosis.
I hope, you can now see what happens when a child doesn’t get the diagnosis that they need for others to understand them, and for them to understand themselves.
I hope you reconsider your plans, or make sure there is another ASD pathway before closing yours to vulnerable children and young people that need to be able to access a diagnosis.