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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

  • We often get posts here from people who have met with a little initial resistance from GPs, but you have met with so much ignorance it is quite unbelievable and I am feeling so angry on your behalf.  If your supposed expert thinks that Autistic people don't care about others and are all "happy" alone, he's no business in the field.  As for your receptionist laughing...that should be a disciplinary matter - who is she to have any kind of opinion? - she's a receptionist not a clinical psychologist.  That was unbelievably cruel.  And neither is a GP qualified to say either that you are or are not Autistic for which reason they are supposed to ask you to fill in an AQ10 before they refuse to refer you. God!  I really feel for you.

    You are tenacious and brave though.  You haven't just caved in. 

    Yes indeed, you need to be properly assessed by someone with some uptodate training in women and girls.  The Lorna Wing centre indeed diagnosed me and are brilliant, but expensive and, as you say, have been too inundated to take on any more assessments at present.  Choices are: see if you can find some one local (probably pricey) or insist on seeing another GP, change practice if need be.  It might be an idea to e-mail a few practices to see if they have anyone with any experience of ASC.  They may be more likely to listen to you properly. Do an online AQ50 and print it off to take with you.

    If you do go private check out that they assess as a team, not just one bod on their own and that they have recent training in women and girls and other subtle presentations as well as co-occuring conditions and other forms of neurodivergence.  You'd be looking for a speech and language therapist and a properly qualified clinical psychologist in neuropsychology on the team.

    I wish you all the luck in the world with this.  You deserve your truth.

    I was 56 when I was diagnosed. And yes, my God, it was worth it!

  • in reply to Dawn

    Thanks. I dread GPs, and as far as I know I am not allowed to change them at least here because they go by post code. To be honest I moved a lot in the Uk and so changed lots of GPs but I don't seem to find any sympathetic ones.
    I don't even know the GPs in my practice, it's always a different one and on the telephone it's even harder to know who you are speaking to.
    Anyway, I am going to try a local private diagnostic centre and pay for it myself.
    Thanks for the tips. I want to do exactly that, ie assess the way they assess.

    Congratulations on your diagnosis. I think it must feel liberating. It would for me at least.
    May I ask you if you are seeing a therapist after the diagnosis or if the diagnosis was enough for you?

    Thanks!

  • in reply to Fran

    I don't know how it works in Scotland, but I would dig a bit into that. In England too there are so many practices which cover the postcode area. You clearly can't live in Birmingham and have a GP in Newcastle, but within those who can cover the geographical area you can choose.

    Even if you can't change practice, you could ask to speak to another within the practice. It might help to write with an AQ50 and a list of reasons why you think an assessment is important. Letters are sometimes easier for us to express ourselves in.

    I certainly empathise with the issues communicating with GPs. It was my medical/body phobias and poor relationships with medical people that took me on my little journey to enlightenment.

    And oh God YES! Was it liberating. In and of itself the diagnosis was the intervention I most needed.  Gone, were all the existential 'why is this happening to me', 'why are services just not listening', 'why is nobody listening' and 'what the hell is wrong with me' questions.

    Don't get me started on MH services; I've nothing complementary to say, but by that stage I'd engaged my own private counsellor who was kind of on this journey with me, did extra training in Autism and did help me undo some of the damage MH had done. He is very much 'Autism informed' now and I can re-engage with him any time the general medical people have to treat me and it feels a bit much.

    Otherwise, hey! I'm Autistic. Woo woo! I have a T shirt that reads: "I don't suffer from Autism. I enjoy every minute of it!"

    You deserve your truth hun, go fight for it and we will be there when you need us.

Reply
  • in reply to Fran

    I don't know how it works in Scotland, but I would dig a bit into that. In England too there are so many practices which cover the postcode area. You clearly can't live in Birmingham and have a GP in Newcastle, but within those who can cover the geographical area you can choose.

    Even if you can't change practice, you could ask to speak to another within the practice. It might help to write with an AQ50 and a list of reasons why you think an assessment is important. Letters are sometimes easier for us to express ourselves in.

    I certainly empathise with the issues communicating with GPs. It was my medical/body phobias and poor relationships with medical people that took me on my little journey to enlightenment.

    And oh God YES! Was it liberating. In and of itself the diagnosis was the intervention I most needed.  Gone, were all the existential 'why is this happening to me', 'why are services just not listening', 'why is nobody listening' and 'what the hell is wrong with me' questions.

    Don't get me started on MH services; I've nothing complementary to say, but by that stage I'd engaged my own private counsellor who was kind of on this journey with me, did extra training in Autism and did help me undo some of the damage MH had done. He is very much 'Autism informed' now and I can re-engage with him any time the general medical people have to treat me and it feels a bit much.

    Otherwise, hey! I'm Autistic. Woo woo! I have a T shirt that reads: "I don't suffer from Autism. I enjoy every minute of it!"

    You deserve your truth hun, go fight for it and we will be there when you need us.

Children