Autism assessment

I've had something similar, and it's made me disappointed in the NHS (to say the least).  My story is a bit more complicated though.  I had a lot of issues with school, bullying etc which were not addressed at all.

  After my first contact with NHS mental health workers 20 years ago, they mention autism as a possibility.  I didn't know what autism was.  They told me to research it, and what I found online was very much the 'rain man' trope, which I didn't relate to.  I told them that wasn't me.  I thought I had bipolar because of the hyperfocus/obsessions and recurrent depression/burn out.  I saw a psychiatrist back then, who stared into my eyes and watched me squirm, asking me why I couldn't make eye contact while I was speaking, and so on.  He concluded that I wasn't autistic.  I said how much of a relief that was, because autism isn't curable and I wanted to be 'normal' (and had put a lot of effort into trying to be normal since I was young).  I can see his confused face now in my mind's eye... I realise now that I had just confessed to 'masking' through the interview.

I was briefly treated for bipolar, but then told by MH workers that this couldn't be correct.  I've had recurrent anxiety and 'depression' all my life, though mostly untreated and I now think many of the depression periods were actually burn out.  Various things helped me cope, such as being in a supportive relationship and peaceful living situation, animals...  However, I haven't been able to hold a full time job for more than 4 months.  The social side of it becomes untenable.  I am often bullied.  I can sometimes puzzle out when I've made a social mistake afterwards, which is very painful.  I think that I have a slow processing speed and possibly an auditory processing disorder.  Possibly also ADHD.

I realised I was autistic after reading about autistic women online almost 10 years ago, and then reading 'aspergirls' by rudy simone.  I asked an NHS MH worker to be referred for an assessment.  She sneered at me and said I couldn't be autistic as I'd been overseas.  This didn't make sense to me but I didn't know what else to do, so I didn't do anything.  The pattern of struggling continued.  Then I was badly bullied at a job which I'd become unwillingly attached to, and had been proud of managing to continue with for several years (though it was part time). Again I fell apart.

I became very depressed.  Again, I reached out for help from the NHS and recieved none.  In fact, the opposite, as applying for monetary help from the state caused social services involvement in my life, which is another story and was very traumatic as it involved the police due to me being in meltdown/shutdown.  That situation led to me having an appointment with an NHS psychiatist, which I'd requested many times in order to find out the underlying cause of my issues.  She said I was depressed and that was all.  I mentioned that I'd been previously diagnosed bipolar and she seemed surprised. 

After this, I arranged private therapy.  I realised the stakes at this point, and forced my depressed brain to engage with the therapist.  After 2 sessions she asked if I'd ever heard the term neurodivergent and she flagged up that she thought I could be autistic.  She offered to write a letter to my GP asking for an autism assessment.  I didn't see the point as I'd asked the GP in the past and been refused.  I began to research autism again, much more widely (to the best of my malfunctioning brain's ability.  I began considering a private assessment but it seemed wrong to do this as I support the NHS.

Then a follow up appointment with the NHS psychiatrist - she said I was actually bipolar after all, on account of my 'pressured speech'.  I asked if this could be due to anything else and she said no.  Google the term and the first cause is 'anxiety'.  I asked her to refer me for an autism assessment.  She said that she wasn't able to do that - the referral had to come from a GP, but that she'd write a letter to the GP asking them to refer me.  I was sent a copy of the letter.  It mentioned nothing about autism.  This person lied to me several other times.

The private therapist continued to mention the assessment and seemed to be omitting to give me any concrete advice on what to do about the depression and appalling exective function etc.  I felt that I was running out of negative things/memories to tell her about and wasn't sure what else we would talk about!  I booked the private autism assessment.  I was confirmed autistic. I have so many thoughts about this that I don't know where to begin.  Especially because of what the NHS told me and how various MH workers have treated me.  I've left out a lot... some have been cruel and callous.  But they were wrong all along.  I don't know how to process that and it's quite disturbing.

In the months since the confirmation I've began to improve function slowly. I've been trying to develop strategies which account for my deficits, rather than forcing myself to do what I 'should' be able to do.  My mood related-symptoms have lifted - I'm no longer sad.  I am beginning to feel things again in my body - that's how I experience emotions.  When depressed I'm almost only able to feel sadness.  I've been trying to read the writings of autistic women and have found them, on the whole, very relatable.  I have some hope now that life could be bearable for me in the long term.  That I can at least have a chance at maintaining some stability and creating a sense of safety where I won't need to fight for basic neccessities such as a sense of security.

TLDR: My advice is - don't trust the NHS when considering whether or not you are autistic.  Especially if you're a woman.  As an autistic woman, I wasn't able to even get referred for an assessment.

This is a fantastic post. Thanks for taking the time to share. I kept my initial description brief but you have gone through similar things too me. 

I was hitting crisis points. Literally walking out the house when things got too much. Be gone for days without telling anyone, police doing welfare checks when I resurfaced, sleeping in woods ect mental health flagged me up when they talked to me, wouldn’t have had a clue. Just thought I was mad. I know for a fact I’m not. I just struggle with certain things

You are entitled to a 2nd opinion. I was told I was anxious by my local ASC assessment people. I went back to my GP and he obtained out of county funding from my local clinical commissioning group for a 2nd opinion assessment. I was assessed and diagnosed at the Lorna Wing Centre. That was a year ago, at the age of 57. 

How much? Shouldn't be more than£2 or 3 k for a complex assessment.

But hey! Forget guilt. You can't put a price tag on human life.

The Lorna Wing are top of their game. They diagnosed me too and literally saved my life.

Don’t feel guilty, that’s what the money is there for, You deserved that second opinion. Imagine if you just let it go. The toll on your mind would be harsh....because deep down, you just know what it is

I've no idea, I didn't find that out, I was so intent on getting my diagnosis after many years of masking, not "fitting in" and being really anxious and depressed. Feel a bit guilty now if that was the cost.

I've no idea, I didn't find that out, I was so intent on getting my diagnosis after many years of masking, not "fitting in" and being really anxious and depressed. Feel a bit guilty now if that was the cost.

Don’t feel guilty, that’s what the money is there for, You deserved that second opinion. Imagine if you just let it go. The toll on your mind would be harsh....because deep down, you just know what it is