Hello, I'm going through the assessment process. I had thought my GP had referred me to an autism specialist but instead it was the primary care mental health team. Is this a normal part of the process? While I have difficulties that I believe are autism-related, I do not have mental health issues and the assessor made it extremely clear she thought I was wasting her time.
She did agree to refer me to a specialist team based on a ten-question evaluation, but said explicitly that I would not get a diagnosis because I'm 40, married and have children so am clearly able to function.
I'm feeling very dispirited and am now extremely anxious about taking the process further. On the other hand, I believe I'm right to seek help - my problems include an inability to recognise faces (including my own children) and a tendency to shut down when overloaded with sensory stimuli. I stim almost constantly, obsess over things like languages, need to follow a strict routine, struggle with social situations because I take things literally and can't read faces, and have very erratic sleep patterns.
Has anyone else had a similar experience? Am I right to pursue a diagnosis?
A few things:
One: I asked my GP to put me forward for diagnosis, he referred me to the mental health nurse, who carried out an assessment and put me forward for diagnosis.
Two: it is vital to understand that the diagnosis process not only evaluates whether you are autistic or not, but the degree to which your autism impacts on your life.
After the diagnosis process I was told that my diagnosis was 'borderline' due to the amount of support I get from my partner, meaning that her support lessens the impact of my autism on my life.
Are you right to pursue a diagnosis? - personally my being diagnosed has had a massive positive impact on my life:
- my place of work have had to accept that I am autistic, after refusing to make a reasonable adjustment for me and then, once diagnosed, contesting that my autism was not a disability within the meaning of the Equality Act 2010
- I can access support (I attend a weekly autism support group with access to a clinical psychologist and various support workers)
- I am learning to dismantle the camouflaged persona I developed over decades to 'fit in' when I did not know of my autism: I am learning to just be my autistic self, which has been very helpful to me.
You won't get diagnosed because you are 40, married with kids! - I have three kids, a partner and was 53 when diagnosed ... there seems to be some misinformed health professionals out there!
That's so helpful, thank you. I wish they had explained the purpose of the mental health assessment at the outset.
I would liken my experience of being diagnosed to being like a jigsaw, in that the health professionals give you some of the pieces but you have to find the rest yourself. Ideally the health professionals should be giving you all the pieces, but the reality is that they don't due to many reasons.
As mentioned above, the clinical psychologist told me my diagnosis was borderline, due to the support of my partner lessening the impact of my autism. This came as a shock, as I went through the diagnosis process under the impression that they would either diagnose me as autistic or not (though in my mind I was in no doubt as to my autism). I have an over-riding tendency to understate how much I am affected by autism: indeed my partner was with me for the whole diagnosis process and was able to add pertinent information that I saw as trivial. Without her help, I may well have understated my autism and not received a diagnosis.
Therefore if you are going on to be diagnosed it would be beneficial to understand the degree to which your autism impacts on your life and be able to express that to the person or persons diagnosing you. An accompanying letter to my diagnosis states: "In order to meet diagnostic criteria the individual's difficulties must cause clinically significant impairment in social, occupational or other important areas of current functioning".
and said: "In order to meet diagnostic criteria the individual's difficulties must cause clinically significant impairment in social, occupational or other important areas of current functioning".
I love the catch-22 of that.....how do I know if they are difficulties when I have only lived life in this shell....everything has been a hard slog and a challenge..
Am I currently functioning? I don’t know what functioning looks like on my terms....I have always done what other people tell me to do.
Excellent and concise!
Indeed, most of the 'difficulties' I face I do not recognise as difficulties because they are my 'normal' - it takes an outside perspective, in my case my partner, to have recognised my difficulties and convey them to the diagnostic team.
Then you are very lucky and thank you .and for sharing the diagnostic smallprint x
Sorry....that sounded very flippant....what I meant was....what do you do if you had no one to take with you to the GP.....? Catch 22 again. Lol