• Replies 17 replies
  • Subscribers 84 subscribers
  • Views 3472 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Getting a referral as a middle aged woman

Fran

Hi all

I would like to ask for advice in looking for help.

I'm 44, I have been considering for a few years to get diagnosed for mild autism, but I seem to struggle to be taken seriously.

All my life I never managed to get support.
I had serious eating disorders as a teenager, which I ended up diagnosing myself and finally overcome in my 20s.
I've never had a boyfriend and I am told I am not looking but this wasn't true when I was in my 20s and 30s but I never understood what it meant.
Also I never managed to keep a friendship and I was heart broken every time a friend dumped me.
I have felt compelled a few times in my life to leave and move somewhere else (already change city 4 times so far).
Temporarily I think things will get better but then they don't and I am exhausted.
I used to be a very good student with excellent scores until 18 at least, but I truly studied a lot.
However I am more and more struggling at work and I am about to lose my job again.

I ended up working in computers trying to be a programmer, but I am often told that I am not good enough.
I seem to need more support by colleagues than they can give me and struggle with corporate life and meetings.
I feel increasingly more worthless, and I think burnout is happening again.
Anxiety and depression are also getting worse.
In the past I tried 5 different therapists for years but none helped.

Years ago I spoke to a NHS CBT consultant, but he just told me that he wouldn't take me and the he is sorry for me since I will never have a normal life.
Traumatic things like this remain with me all the time.

A few years ago I started looking at videos online and discovered Tony Attwood and well I wish I could just speak to him.
But of course this is no possible.
So I tried to find someone who could help me understand if I am on the spectrum.
I don't want to just diagnose it myself.

First I tried to speak to my GP.
His secretaty literally laughed at me when I told her the reason why I wanted the appointent.
Then the GP also listened to me (telephone appointment) briefly and dismissed me saying that I am simply not autistic, that I should be grateful that I have a job and that I don't create any problems to society (I live in Glasgow so I understand what that means). Basically I should just carry on like that as he would not refer me.
After that call I was so embarrassed and humilated that I gave up for a bit.

I saw that the Lorna Wing centre seemed to have a better understanding of "mild" autism in women, but first of all the fee was extremely high if I could only myself, secondly I would have had to count in taking time off, travel to England and get accommodation too, and last but not least now they are not even taking in new patients any more.

I tried to contact the health insurance I currently have (paid by my employer) but they don't cover for autism diagnosis.
However they have in their team a psychiatrist who allegedly has an interest in autism so I tried to get an appointment with him.
We had a 1.5h zoom call that traumatised me even more.
His research interest is in computational psychiatry, I don't think he should be allowed to talk to humans. He was really intimidating.
I could tell from the beginning that he wasn't interested in me, but I talked non stop for 1.5 hours trying to list all the reasons why I think I am on the spectrum.
He just stared at me with no expression and at the end asked me: "Do you wash yourself?".
I knew at that point that I wasted my time.
He told me: "You keep telling me that you feel lonely, don't belong anywhere and worry about other people opinion's of you. You are not autistic. Autistic people don't care about others and are most happy alone. I will not refer you for a diagnosis."

After that I felt really unwell again for a couple of weeks and decided to give up.
However my anxiety and depression are getting worse and I find myself still looking up autism for women on YouTube.

Mind you, I struggle to be taken seriously all the time.
At 30 I had thyroid cancer and that was diagnosed privately as even then the GP didn't take me seriously.
And I can tell other stories of abuse by doctors but I want to focus on mental health.

I don't know anymore what to do.
Diagnostic services and they are quite expensive and I may lose my job in a few months, but I would still try if I knew for sure they had lots of experience with women who have been invisible all their lives.
However my main fear is to waste money and be told I need to look like Rain Man to be autistic.
I have no special talent, I don't like trains, I am bad at maths and my memory has become very poor.
It looks like most centres in the UK are still focused on autism for men, and use the same diagnostic criteria for the random woman.
Being in Glasgow doesn't seem to help as "I don't create enough trouble to society" to be listened to. Not sure I would even if I did.

Yet, I booked an info call with "Aspect Autism Consultancy" in a few weeks.
Does any of you know anything about them?

Any other recommendations?


Thank you all if you read all this.




Parents

  • It really makes my blood boil when ignorant clinicians place incorrect and simplistic hurdles in the way of autistic people getting diagnoses. They should seek more up to date training. Denying anyone a diagnosis because they: 'make eye contact', 'use gestures', have a job, have a sense of humour, are not a cause of trouble to society etc. is unfair, unjust and plain stupid. 

    I'm sorry to say, but in this situation 'money talks'. For most people, to get to a place where you are talking to a clinician with specialisms in autism, and especially adult autism, who is fully conversant with 'less obvious' autistic traits and is sympathetic, you usually have to pay. I was 59 when I got diagnosed privately, by a consultant psychiatrist with specialisms in autism and adult autism. I held down a demanding job for 34 years, have a science PhD and am married with children, but 15 minutes into the consultation I was told that I was obviously on the spectrum and would be getting a diagnosis, even though I made eye contact and said I liked absurdist humour!

  • in reply to Martin

    Thanks Martin for sharing your experience, I really appreciate it.

    I am not as 'high functioning' (I hate these words) as you are but still "not weird enough to be noticed" (someone also told me that)...
    So it's refreshing that you are also one of those who "doesn't look autistic" and yet had a diagnosis.
    I've been trying to study, and probably imitate people since I can remember and I trained myself to look at people in the eyes in primary school, I like drawing cartoons and I sometimes can even make people laugh.

    I graduated in Engineering even if it really cost me a lot of energy and health (I like arts and humanities but had to find a job).
    My parents never saw any problem in me because my academic results were good after all.
    But in everything else in life I've always struggled and it's getting worse with age.

    When I first contacted Lorna Wings I was in a new city and looking for a job.
    I think the fee would be something like almost 3k which I couldn't afford.
    At the moment I have a job and I have been saving money for the last 3 years so I would be ready to pay but they are not taking new patients!

    So yes, I understood the diagnosis is a privilege for rich people. It's not even covered by health insurance.
    Before I lose my job again I am willing to give it a go - I found this "Aspect Autism Consultancy" in Glasgow, I have an info call  scheduled soon (had to wait 2 months just for that).
    However I want to be as prepared as possible so I can understand if their diagnostic criteria are going to be worth the money.

  • in reply to Fran

    After I had the realisation that I might be autistic I researched the subject like a man possessed. I became convinced that I was indeed autistic and I prepared for the assessment very thoroughly. I looked at the DSM-V/ICD-10 diagnostic criteria and found how my traits and history fitted them. I then filled out the questionnaire very fully - not easy as some memories were unpleasant to revisit - and honestly. My wife filled out a supporting questionnaire from her perspective (I'm an only child and both parents were deceased, so had no other person for input). I used Psychiatry UK - they do online assessments (it was during lockdown so that appealed). and it cost £900 in February of 2021. Though the NHS usually uses a team for assessment and diagnosis this is not a requirement for a clinically valid diagnosis. 

    Taken verbatim from the NICE guidelines for the assessment of ASD, "Diagnostic assessment, which in the UK uses ICD-10, is often within a multi-disciplinary team but at a minimum is by a qualified clinician, usually a clinical psychologist, psychiatrist or neurologist." From the document: Autism Recognition, referral, diagnosis and management of adults on the autism spectrum, National Clinical Guideline Number 142, p. 25.

    I should add that you get to choose who does your assessment from the clinicians available. My daughter was diagnosed the day after me and she chose a female clinical psychologist for her assessment.

  • in reply to Martin

    Ha! Possessed describes me perfectly!
    2 years of lockdown and isolation also gave me a lot of spare time to research.

    I will check Psychiatry UK. Definitely cheaper than any other service I found, but I need to see if it works for me.
    Thanks again, super useful!

Reply Children
No Data