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
  • Hi, i too was under the mental health care team for many years. I have had mental health problems my whole life, i was previously diagnosed with schizophrenia, schizoid personality disorder and idiopathic hypersomnia. After many years i decided i no longer wanted to be under the mental health team. both due to their lack of resources which i didnt want to waste on me but also because apart from medication i wasnt offered much else that i deemed constructive.
    when i was 24, i had a son, he was diagnosed with autism aged 3. He's 7 now and i am still blown away with how amazing he is. 
    Then recently i was having a difficult time and ended up back under the mental health team, lots of appointments, lots of questions and it all came to a head a week ago, i was diagnosed with autism myself, a day after my 32nd birthday.
    Its accepted i still have mental health issues, namely dysthymia and schizoid personality disorder.
    At first i was confused, how could it have been missed for so long, but most of my schizophrenia symptoms are what are typically classed as "negative symptoms" which means shutting down, isolation, socially awkward etc. Im still looking into it, but it appears that they can be confused more commonly than you would believe. I suppose its understandable as shrinks cant see our thought processes, all they can do is ask questions, which often dont delve into the right areas.
    As for what happens after a diagnosis in adults, i havent a clue. When my son was diagnosed it seemed that the services available were good, but the psychiatrist just talked to me for an hour, gave his diagnosis then shook my hand and said goodbye. I dont know who i need to tell, or what local services, groups etc there is for me now.

  • Hi, it's good to hear I'm not the only one. Cant agree enough on how poor mental health care is. No resources and throwing pills at a problem seems to be all they can offer.

    My experience was the same as yours. Told me the diagnosis, shook my hand and wished me luck. Although he also said I should research the condition online and gave me a leaflet.  

    I'm sure there is support out there. It just seems we're left to find it ourselves. Good luck to you.

Reply
  • Hi, it's good to hear I'm not the only one. Cant agree enough on how poor mental health care is. No resources and throwing pills at a problem seems to be all they can offer.

    My experience was the same as yours. Told me the diagnosis, shook my hand and wished me luck. Although he also said I should research the condition online and gave me a leaflet.  

    I'm sure there is support out there. It just seems we're left to find it ourselves. Good luck to you.

Children
No Data