Getting a referral as a middle aged woman

Glad to hear I'm not the only one who refuses antidepressants given out like candies :)

Wish I could just write to my GP.
But thanks for sharing your experiece. I feel like I am learning a lot and I am definitely feeling validated :)

Mariusz said:

regular therapy makes autistic upset more instead of helping.

Certainly does if your Autism is denied and they try forcing you in some other box. My husband certainly reached a point where he refused to call MH crisis any more because I was worse everytime I'd spoken to them.

Thank you. Your positive energy makes me really feel more hopeful :)

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!

I didn't speak to mine at all. I wrote with print offs of the AQ50s and my reasons.

And the amount if times they've tried to fob me off with anti-depressants and then treated me like a naughty school girl for refusing them. Stick to your guns on that one. If you aren't depressed why take them. Plus aside from the usual battery of side effects of those things, there is evidence emerging that they don't interact with Autistic neurologies at all well.

Sorry to hear you are struggling too, though you are definitely not alone.

Office job is not necessarily a good thing, though I am not complaining.
I was lucky enough that my parents paid for my studies and I graduated in engineering. But for all the years I studied, for my age and qualifications I am really underpeforming. I barely survive out of school.

Office environment is very competitive and definitely not a place where I want to make friends (learnt that the hard way in my first jobs). Definitely I wouldn't ask for help nor reveal a diagnosis probably.
Nobody cares about personal problems and I was already told by my line manager unofficially that I am struggling and not delivering enough.

Mariusz said:

regular therapy makes autistic upset more instead of helping.

I can confirm that. One of them made me have anxiety attacks which I never had before. Luckily I stopped seeing her after only 3 months and I no longer had those attacks.


It was nice of your ex to support you and speak to your GP. I struggle to describe my symptoms and even if I prepare before thinking about what I want to say and writing it down, I tend to speak very fast and get lost in details... Not sure if anyone can follow me in the end!
I wonder if my poor memory is also sure to burnout.

Anyway may I ask if the diagnosis improved your life?

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.

I know, I don't like the word either. But I find myself using it to prevent people from dismissing me immediately ("You don't look like one" or some ignorant statement of that kind).
I don't like "high functioning" either. It's offensive in many ways.
But "Asperger's" can't be used anymore. This is a bit too complicated for me.
As if there was any need for more confusion :-/

Wow thank you!

As I said above, I am not sure I will want to see a GP again, but I will think about making an appointment and discuss with some written test results and my long list in my hands.
I will still have to tell the receptionist why I need the appointment though, so I may decide not to.

You have also been brave, well done for not giving up. Very inspiring! :)

Ah antidepressants! In many occasions GPs wanted to force me to take antidepressants and I have always refused to do so. I want to know what the underlying problems are first, I thought it was just me.

Tony Attwood is my super hero. It was one of his videos which definitely convinced me that I may be on the spectrum. Shame he moved to Australia :P

Thanks a lot for all the tips. I will print out the tests. I remember doing them online but I never thought about printing them out and using them. Thank you!

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!

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.

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.

Also to be taken seriously using the term "mild" autism isn't going to help.

The autistic spectrum is not linear and there isn't a mild end and a severe end. It is a common misconception. There is a useful explanation here https://www.employmentautism.org.uk/blog/the-autism-spectrum-as-a-spiky-profile

You are diminishing your life struggles unnecessarily. Looking at the struggles you have faced with eating disorders, forming and maintaining friendships and relationships, employment difficulties, lack of understanding from doctors. None of that can or should be described as "mild".

Hi

Yours looks like story of my life, moving cities, countries, jobs, only one ex, no dating, friends are recent addition, ghosting my family, except I was never lucky to get any office job anywhere.

Fran said:

I should just carry on like that as he would not refer me.

I'd change my surgery and GP after something like that, NHS's beaurocracy creates obstacles impossible to pass sometimes..

Fran said:

I tried 5 different therapists

regular therapy makes autistic upset more instead of helping.

Fran said:

Any other recommendations?

Be patient there is few members that can point you somewhere, but I forgot details unfortunately, after recovering from burnout my memory is acting funny sometimes, or in some cases. I waited over 4 years for diagnosis from GP referral, but it was my ex talking to him about it, I was too confused atm and I would probably muddle it up completely and be sent away. Is there anybody at your work who is friendly and understanding? you could ask them to accompany you to your GP

I am sorry to hear of the barriers you have faced seeking a diagnosis. Getting a diagnosis on the NHS as a middle aged female is far more difficult than it should be. However it is not impossible and please don't give up. Stick around on these forums and you will encounter many instances of people being referred and diagnosed later in life.

I was diagnosed on the NHS as a 50 year old female. My 'lightbulb' moment was in my early 40s when I read a book about Asperger's (as it was known then). It was as if I was reading about myself written on those pages. I think the book was by Tony Attwood.

It took me a couple of years to pluck up the courage to seek a referral from my GP. I was dismissed and told that I needed antidepressants for anxiety and depression. That was the last thing I needed. Once I'd recovered from the horrendous effects of those it was another couple of years before I plucked up the courage to go back and ask again.

This time I went armed with a long written document, in which I wrote down all of my evidence, reasons and relevant early life events. By then I had done a lot more research into the female presentation of autism and I was single minded and determined. I wasn't going to be fobbed off again. My GP did try to, even saying I wouldn't be able to cope with the assessment process due to my anxiety. I got the referral. The waiting list was somewhere between two and three years. 

I would suggest that you make another appointment, try and make it a double length and face to face appointment. If possible see a different GP in your practice. Write down your reasons and examples of your autistic traits. You could also take any evidence of autistic traits from your childhood, such as what was written on school reports. Explain how it is still negatively impacting your life now, in particular how you need support and reasonable adjustments in order to be able to remain in employment.

According to the Nice guidelines your GP should consider a referral if you score 6 or above on the AQ-10. 

https://www.nice.org.uk/guidance/cg142/chapter/Recommendations

You could also do the AQ-50 online and print the results from that to show to the GP, backed up with appropriate examples to support your answers.

https://psychology-tools.com/autism-spectrum-quotient/

Good luck!

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!

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!