Search
  • Charlotte John

Autism Awareness week…. But who is aware of my daughters autism?

Oliver Shanley, CEO of NELFT

This week is world autism awareness week, something that I may have overlooked once upon a time. But not because I did not care. Because I didn’t really understand. But I do now. Very much so.

Autism awareness week is to raise awareness around this subject and spread awareness and I have seen some amazing campaigns and events taking place. I’m thankful for this week as I learn new things about my daughter each day.

However, I have an issue…a question even.

Who is aware of my daughters Autism?

Because she has been on the ASC waiting list since 2018 and we have received nothing more than fob offs and automated emails since that day from NELFT.

I have emailed, called, complained, and gone to the actual building and they have not helped us. The emails say that there is no timeline as to when my daughter could be assessed.

My daughter is aware that she thinks differently to many others. She is becoming more and more aware of these differences and, at the moment, she spends a lot of time angry as she does not really understand what is different.

I try and sit with her and talk, but I have to avoid saying certain things to her …because she has no diagnosis.

Its not about a label. We don’t care for those. Its about being able to put a name to the “thing” we often talk about. She likes to do her own research and findings on things and right now…I can’t tell her to look up this or read that book because I don’t want to lead her down the wrong path.

ASC is a spectrum. I fully understand that.

All my daughter wants to know is where on that spectrum she sits.

The children’s mental health services of the UK are not aware of my daughters ASC. Or…if they are aware…they are doing nothing to support my child and myself to make this journey easier.

My MP, Craig Mackinlay is not aware of my daughters ASC needs and failings…wellllll…that is not strictly true. He acts like he is not aware. Because I have included him in many of my emails and complaints and he has never ever responded.

My daughter is left to navigate social fields on her own and with the guidance supplied by me and our friends.

Isn’t that shameful of the UK. That a 12-year-old child is left to try and figure out how to cope in a world that tries to get those who are on the ASC spectrum to conform in a world that can be cruel and unforgiving at the best of times.

My daughter may get seen and assessed next week. She may get assessed when she 17. That is the reality of where we are at.

The mental health support and facilities in the UK are inadequate and shocking, this has nothing to do with the front-line workers, as all I have ever met have been outstanding.

This is to do with CEOs and MPs.

It’s to do with budget cuts.

Its to do with not those in power not caring.

Because from Boris Johnson to Professor Oliver Shanley (Who I believe is the CEO of NELFT, but I cannot find an email address) …and everyone in between …have failed my daughter.

My daughter must live in a world where she can’t recognise facial expressions, has little understanding of social expectations, gets punished in school for not remembering things, becomes confused when things change, cant make friends, people keep telling her she is annoying, children bully her because she does not get their humour, she struggles to get dressed each morning due t texture that day not feeling right, can’t sleep, cant contrate…

The list goes on and on

And you think sending out a generic handbook and email will help with that.

But that’s ok….I will just let her know that she will be assessed between 12 and 17.

Shameful.

I wonder how many of these people think that the mental health services that is provided to the children of the UK is good enough for their children….

7 views0 comments