An autism service that can't manage even basic consistency

Still on the waiting list for diagnosis! Still getting told one thing and then nothing happening and emailing them and being told "oh sorry, that didn't work it turns out, we'll do this next" and it didn't happen yet again.

I have two main problems with this. One they keep changing things. Something is agreed by email or on the phone with my parents and then it just doesn't happen. Why have you agreed to it if it's not possible, you must have the data to be able to work out whether it's possible, or at least give a more accurate estimate than over a year between when I was originally told my final assessment would be at my triage appointment and when I'm currently told it will be. It's never increased by more than 2ish months at a time either, which is particularly annoying because if it was more than that I'd be able to justify to my uni to help pay for a private assessment, but it never seems worth it on paper if it's just one or two months away, which it has been for over a year now. I've been two months or less away from my autism assessment for a year. There's a joke.

Number 2, they never ever ever ever tell you that it's not going to work. Every time I've found out it's going to be longer it's because I've prodded because it's got to the time they said it'd be done by last time. If I hadn't been able to prod by email, I would not have heard anything since July 2021 when my triage appointment was. That's one and a half years. Since triage. Surely they should contact more often than that.

In the mean time my mental health has been steadily declining but I still can't access any help. IAPT and the charitable groups I'm apparently too high risk for and the mainstream mental health team won't see me while I'm on the waiting list for an autism diagnosis. The autism service knows this. I made it very clear. But a waiting list is a waiting list and every time I'm let down again a little bit more hope slips away. Ironically dealing with the mental health system is what finally killed my last hope that anything was ever going to get better, because clearly I'm never quite right for any of the nice little boxes. 

Sorry for the rant, just incredibly frustrated and tired of having to deal with this *** time after time after time

Parents
  • I waited over 4 years. and 2 months. 

    1 year after referral from my GP I moved house. I was unaware it is no longer in area of a surgery I was registered, and that they deregistered me without telling me.

    Half a year later covid started.

    Surgery was closed, when it reopened half year later, I found out I need a new surgery, but because of covid I couldn't register elsewhere 

    When I finally did that, it was year later, then I found out I'm no longer on a waiting list for assesment, they 'assumed' I'm no longer interested, and so I had to obtain a new referral.

Reply
  • I waited over 4 years. and 2 months. 

    1 year after referral from my GP I moved house. I was unaware it is no longer in area of a surgery I was registered, and that they deregistered me without telling me.

    Half a year later covid started.

    Surgery was closed, when it reopened half year later, I found out I need a new surgery, but because of covid I couldn't register elsewhere 

    When I finally did that, it was year later, then I found out I'm no longer on a waiting list for assesment, they 'assumed' I'm no longer interested, and so I had to obtain a new referral.

Children
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