Why did it take 12 years?

I'm 54 and only just been assessed and diagnosed with ASD.

I had a breakdown after bullying at work, 75 hour weeks and high stress levels.

I spent 12 years under the community mental health team. They diagnosed chronic severe depression and anxiety and at various times have even diagnosed borderline personality disorder. In those 12 years I have only had 12 hours of counselling,  been on every antidepressant going and even been subjected to ECT.

About 3 years ago I found an ex on Facebook who was a nurse. She told me I had always had ASD and it was obvious. This helped things, in my own mind, begin to make sense. I'd been in a school for Maladjusted Children as a teen.

I raised it with my GP and the CMHT. My GP made a referral. The CMHT took no notice. As soon as I was on the waiting list, CMHT refused to carry on 'treating ' me. They went as far as to say they would only treat me if I came off the Neuropsychology waiting list.

3 weeks ago, after 2 years of waiting, I finally received a diagnosis of ASD. 

During the 2 years on the waiting list I had the crisis team out several times as my mental health care was left to my GP.

Life is already making more sense. I'm not weird, I'm just me.

I still have no idea what happens next. Do I start to get the right support and treatment?

Will This come via the GP or will I be referred to a specialist?

My big question would be: Shouldn't the mental health professionals spotted the ASD? Aren't they trained? Should I ever have been given the harmful drugs I've had? Should I ever have been given ECT?

The last 12 years have been hell. I lost my job, my home and everything I own. I lost my wife.

I feel that if I'd understood myself and ASD I would have coped better and not had the breakdown. If I'd been diagnosed earlier I'm sure I would have dealt with the depression and anxiety better and could have dealt with things better.

Parents
  • I think many NHS services are still in the early stages of building autism awareness across all of their services, including mental health services.  To me it seems obvious that knowledge, experience and awareness should have been built in from the start, and astounding that it wasn't, but it seems this is only now getting off the ground.

    I personally went through various rounds of counselling and psychotherapy at several points in my life plus my adult son was with the early intervention service for 3 1/2 years and it was only towards the end of that process that autism was even mentioned.  Even then it took another couple of years with a different team to get a diagnosis.  So i feel angry that so many opportunities were missed. 

    My local trust are only just going through the process of training their staff in autism awareness (for about 2017 from the looks of it).

    www.tewv.nhs.uk/.../

  • I've read very bad things about that trust by service users on Twitter, especially Autistic people. Abusive and ignorant staff, from what I've read. Just thought I'd warn you.

  • That doesn't surprise me.  I've not encountered any overt abuse but ignorance abounds.  Along with other failings.  Plus I have a couple of complaints lodged with our local CCG, not that I'm expecting any further response form them as it's now been a couple of months.   :(

    Overall I'm quite shocked to find that autism training for all staff is really only just beginning. 

Reply
  • That doesn't surprise me.  I've not encountered any overt abuse but ignorance abounds.  Along with other failings.  Plus I have a couple of complaints lodged with our local CCG, not that I'm expecting any further response form them as it's now been a couple of months.   :(

    Overall I'm quite shocked to find that autism training for all staff is really only just beginning. 

Children