Published on 12, July, 2020
It was suggested to me by my psychotherapist in the summer that I might be autistic. I have since done a lot of research and can identify with some of the signs but not all of them. Although my GP has agreed to refer me for an assessment, I sense that he has not taken it that seriously and doesn't believe that I'm actually autistic. I have learnt that girls and women are good at hiding their difficulties and, being in my late 40s now, I will have learnt to adapt to survive so far. Does anyone have any advice they can give me about what it's like for a woman in her forties to pursue a diagnosis? Also, does anyone share my sense that they can really identify with some symptoms of being on the spectrum but not all of them? I feel I would benefit from talking to someone who has already been through the experience and any help or advice they can give me.
Firstly, it doesn’t matter what your GP thinks. And secondly, you don’t need to have all traits. I’ve only recently realised this myself. My assessment starts in December. I’m 48. When I realised I probably had Autism, I put it out of my mind. I knew my whole life had been a struggle, but felt I didn’t have many traits, including stimming, routine, food sensitivities, meltdowns etc. Over the last year I’ve done a lot of analysing. I do have quite regimental routines, but this is usual for me, so I didn’t think it was a factor. There are foods I avoid, I do stim and I can attribute past experiences where I acted ‘like a child’, shouting, screaming, stomping my feet, hitting things, not realising I’d hurt myself, and feeling somewhat embarrassed after the event which was out of my control.
I don’t think my interests were ‘excessive enough’, or particularly scholarly, and I don’t ‘like numbers’ or scientific things. I give great eye contact, but of course I had to learn this, and monitor it whenever I speak to someone.
There so much I could write about but all I’ll say is keep looking at your life in detail. Things might become apparent.
The thing is, deep down, I worry, am I just finding these things, so they fit in with some of the traits? I won’t believe I am in the spectrum until a professional tells me. I was exactly the same with my daughters process. I knew what she had. I’d known for years and no one listened (she’s high functioning). But I needed it to be said and on paper for it to be a ‘fact’.
Hello Catlover
Thank you for your reply. I would love to ask you the same question as I asked Ultramarine about what you consider to be your autistic traits and which ones you feel you don't have. I can definitely identify with what you both say about sometimes believing you could be autistic and then the next minute doubting it. Also the more research you do the more you feel that you are finding traits in yourself to give yourself certainty. What or who made you realize that you might be autistic in the first place? How did you both go about getting the diagnosis? I have already been through my GP, who has agreed to refer me, but I don't know where this will be and I want to be sure that the person who assesses me will be up to date with female presentation, as Frances said in her post. I have asked the GP if he will refer me to the Lorna Wing Centre, as recommended by my psychotherapist, but I am still waiting to hear if this will be possible. Also, should I wait for an NHS referral, which make take a year or more, or speed things up by going private? So many things to consider.......
I went to my GP who agreed to refer me to the Maudsley Centre (my local centre) on the NHS, but at the time I was very nervous, having read lots of stories of women being misdiagnosed. I decided I would prefer to go to the Lorna Wing Centre because I understood that it was the best place for diagnosing women.
The Lorna Wing Centre sent me this information about getting NHS funding for an assessment:
“Please note that the Lorna Wing Centre does not hold a block NHS contract with your local Clinical Commission Group (CCG) and therefore we will not be one of the service options under Patient Choice. You will therefore need to discuss a referral to our service with your GP.
If your GP agrees to refer you to our service we would need a completed referral form from yourself and a referral letter from your GP which needs to state clearly that they support the referral and will apply for an Individual Funding Request (IFR) through your local CCG. Your referral will then be reviewed by our clinical team and we will confirm acceptance of the referral to you and your GP, if it is appropriate for our service and provide the costings. Your GP will then be required to apply for an Individual Funding Request (IFR) on your behalf through the CCG. If funding is agreed by the CCG we will require confirmation in writing from them before we can proceed with providing an assessment for you.”
So I asked my GP if I might be able to get an individual funding request to go to the Lorna Wing Centre, but she said no, because I had already been offered a referral to the Maudsley Centre. I’ve since heard that the Maudsley Centre is one of the best places, but I still decided to go privately to the LWC because I was afraid that the waiting list on the NHS might be years long.
I think the waiting times on the NHS can vary, depending on where you are in the country. I’ve heard of people waiting less than a year on the NHS. I wonder if your GP can give you any clarity about how long you would have to wait?
PS - the waiting list at the Lorna Wing Centre is also quite long at the moment because of the effects of the pandemic. I sent them my self-referral forms in July, and my assessment is currently expected to be some time between March and May next year. So it looks like it will be an 8-10 month wait in total, unless there is another lockdown, which will delay it even more. They don't usually have such a long waiting list, but every time there was a lockdown last year they had to close, which created a backlog of assessments.