Don't know where to start re female adult diagnosis, head is tangled up mess

Hi, I'm hoping someone or one of the mods can help. 

I am female, mid-thirties and identify with a lot of traits on the autistic spectrum. This is something I have been aware of for three and a half to four years. I think reading and researching about it you could say, has been one of my interests. I have been a member of this forum for two years and stay on the periphery.  It has now got to the stage in my life where I want to seek a diagnosis. 

The catalyst for this being counselling therapy which I started yesterday. My brain and my mouth didn't match up. I found myself saying things which I now am not sure how true they actually were. We talked about identity and decisions.  It came across as though I had been coasting in life, when in reality the decisions I have made in my life have been very difficult to deal with. It was difficult to get much across because i was very emotional and i find it very hard to talk about feelings and emotions. Im going to end up rambling at this point to you so will leave it there for now. However, I can see this "delay" which I think is typical of me in that in order to understand my emotions and feelings, I need time to digest and reflect. The counsellor didn't know I thought I was on the spectrum; it was a 45 minute session and I had things I just needed to get off my chest. It's something I will mention at my next session. 

I have a good relationship with my GP and am currently reducing my dose of sertraline as the costs outweigh the benefits. I have mentioned the posdibility of AS to a previous doctor and she said it's something we can discuss and look into. Its on my notes. I would like to approach either of these GPs now. I know I will be asked "why do you think you are on the spectrum?". Well, how long is a piece of string?! 

The difficulty now is that, because I spend most of my waking life over thinking, and I have had almost 4 years input of ASC information, I KNOW in my head how my experiences can be explained through autism but am finding this very difficult to write down. There's too much to even know where to start. Because I have been flying under the radar all my life, and I would say I am a very internal person, I am going to have to fight my case, so I need things to come from me as coherently as possible. The therapist said yesterday (about another issue) it sounds like I can become paralysed by my thoughts and I think this has happened here.

I couldn't find the list on this website yesterday, but made three headings of social communication/repetitive behaviours/sensory to start off my notes, but like i said, notes are proving difficult to write. I have done questionnaires before but have found them difficult to answer as they seem to be aimed at stereotypical behaviours.

I just feel like a tangled up mess. I want to move forward with my life and this is the next step but I don't know where to start. There's also the risk I don't get a diagnosis but I will cross that bridge when I come to it.

Thank you for getting to the end of my ramblings.

  • Hi. I'm 33 and female.I recently approached the GP regarding possible autism (my boyfriend I now live with is convinced). I had made a list which I didn't really stick to reading but was referred to the mental health practitioner for a pre-assessment (AQ-10). I then had to self refer to the local ASD place. They sent back numerous forms to complete (some which I had to do with my mother). After sending these off I am now on a waiting list for assessment (18 months estimate pre-covid).

    The lists are good to have. It can be difficult as we don't know what we don't know. How can you put something down as an issue if you don't know it to be any different? Have a watch of the #spectrumlive shows. I found them really helpful. 

    https://www.autism.org.uk/about/spectrum-live/past-episodes.aspx

    Anyway, hopefully my ramblings helped a little. Go to the GP (or speak with your MH team if you have one) with your list. I booked 2 appointments side by side (so 20 minutes) to give me a little more time to speak. Good luck x

  • Hello there, I don't normally reply on the forums, but I read your post and wondered if maybe you were my long distant twin, as I thought I had written it for a moment!

    I am 23 years old & female and struggled with mental health problems my entire life. I had mentioned to several healthcare professionals that I thought I may be autistic and many times it was brushed under the carpet as a passing thought, but never really truly explored. It took one doctor who looked past the label of "depression" to explore the possibility of me being autistic. I think the only reason why he went into such depths with me is because his son is also autistic, so he has experience with it, I had been extremely lucky to get such a fantastic GP who was listening for once. Unfortunately he said it would take 2-3 years to even get an appointment for an autism assessment, unless I paid to go private, which I obviously did. How are we supposed to wait between 2-3 years for an appointment where these things play on our minds all day everyday and torture us to the point of being unable to function properly day to day? My suspicions were correct, I am autistic and I was officially diagnosed last week. 

    First things first, please don't stress yourself too much over exact details. Our lives are so complex, not even a full 2 hour autism assessment could cover everything. Read up on the NICE guidelines for going about an autism assessment. Think about your childhood, were you an unsettled child/baby?, what were your motor/language skills like? (when did you first babble, talk, walk, ride a bike etc?) What particular things do you struggle with, understanding gestures, tone of voice, sarcasm etc? Any particular noises that grate on you? Do bright lights hurt you? Are you sensitive to any particular touch on particular areas of your body? Do you hate being touched in those areas if so? What about foods, do you avoid certain textures or flavours? These are all great things to start answering and thinking about. What was your education like, did you struggle with work, maintaining friendships? Do you have any learning disabilities? (not all autistic people obviously have them, but it is something worth exploring if you do). 

    If you would find it helpful I can give you the exact questions which were a part of my autism assessment if you'd like? Maybe it would guide you a little more. Going about the diagnosis and going through each part of your life, answering all these questions and bringing up the past is so extremely hard, I can totally relate to how you feel. I know exactly how it feels to have this all play on your mind every day all day. It is so extremely exhausting and I really feel for you. But once you go for it and you have that "label", you will be so relieved and everything in your life may make a little more sense. 

    Also, if you find it easier expressing yourself in writing, make a big list of everything I asked above and make them read it. You don't have to sit there and try and explain yourself verbally because I, for one, am terrible at that and my mind often "shuts down" when I try to recall such information. I am terrible at verbal communication!

    We are here for you. Please if there is anything I can do to ease your anxieties or any way, shape or form that I can help you, don't hesitate to ask!

    Sending love x

  • Dear out_of_step,

    You have made very positive progress towards seeking diagnosis and making lists/notes is a good start.

    You say that you were looking for a list on the website - this page has information about autism profiles and diagnostic criteria which might be what you were looking for.

    There is also a lot of information about adult diagnosis on our website which might be useful.

    You might also like to look at the AQ test.  This was developed by a team of psychologists to measure autistic traits in adults. It's not a means of diagnosis but may indicate the need for further assessment. These online 'autism tests' do not guarantee accuracy, and while they are no replacement for official diagnosis, if the results are significant it's worth taking it along to the GP.

    We know that this can be a really worrying time, but it's important to know that you're not alone, and that we're here to help.


    Our Autism Helpline offers confidential information, advice and support. The team can also point you towards local sources of help and support. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is often very busy and it may take a couple of attempts before you get through to speak to an advisor.  You can also submit an online enquiry form if that would be easier - you'll find a link for that here.

    I hope that helps.

    Best wishes,

    Kerri-Mod

  • I am a 48 year old female waiting for an appointment to diagnose Aspergers. I have always know I am different and this has lead to suicidal thoughts and mental health issues. Counseling has helped and I manage my depression and anxiety better. But its lonely. Its hard for people to understand.

    My counsellor suggested I read 'the girl with the curly hair' by Alis Rowe. Its like Alis has reached inside my head and written down my thoughts and feelings.

  • Hi and thank you for your reply. May I ask which area you are based? I am in the North West of England and I think there's probably different procedures depending on your local authority/NHS. 18 months is a long time to wait but I think it'll be worth it in the end for you. That's good your BF supports you. With mine he is very supportive and although he doesn't fully understand it all, he will stand by me. I have decided not to mention it to my parents yet - not until / if I get asked questions about my childhood. They are quite "old school" and only see the portrayls of autistm from the TV - Chris Packham / Anne Hegerty.

    I have a mental health team of sorts - I have had mixed experiences of them as theyre a bit "one size fits all" but am waiting on some CBT appointments to come through anyway.

    Thank you for the link - I will check it out. What other online stuff have looked at? I like Anna Moomin on Youtube - she's very relatable to me - probably because she's northern and down to earth.

    All the best between now and your assessment. Keep in there and I hope you get the outcome you are hoping for.

  • Thank you for your kind words .   You sound very lucky to have had an understanding GP. I feel mine are similar. I would say I have had mental health issues since I was a teenage but never diagnosed until last year. (Again, another example of internalising everything until it got to the point where I couldn't cope). I think you have hit the nail on the head when you said "these are things we think about all day every day". It's tiring isn't it. It's like constant analysing of everything - and this was going on long before I understood what autism was. Now I am analyising everything AND wondering if it's related to ASC.

    Re how I was as a child. I wasn't sure if I could remember things accurately..... It's something i have crypitally discussed with my mum without specifically mentioning autism (under the guise of "well I have always been an anxious person....what was I like as a child...?) To my parents, as an only child, I think i was just seen as a bit "different" or unusual. This is something I seem to remember Liane Halliday-Wiley mentioning about her childhood. I am very much like my dad and this has become apparent as I have got older and we have got closer. Our brains seem identical.

    Thank you for the offer of the questions, but I don't want to pre-empt things too much. I think I have underestimated that bringing up the past can be difficult. I have heard it mentioned several times on here. This is something which I didn't think would be a problem but I can now see from the one counselling session which I have had so far, that this is something which I WILL find difficult and will have to come to expect that. This is all assuming I get referred of course.

    I totally agree about expressing oneself in writing and that this is easier than speaking. (Before I knew about austim, I likened it to the "spiky profile" of my English as a Second Language students...)  I can't "go in cold". Even when this has happened (such as in work training sessions where the instructor has asked me for feedback on a task - because I haven't prepared what to say it comes out all jumbled up.) Similarly, since I have recgnised this in myself,  this is an example of a coping strategy I have in place now....I go more prepared to the doctors when I have regular appointments as I find that unelss I am asked something specifically I don't tend to mention it. Last time I did a work training session, i wrote down a few notes of what I might say should I get asked for feedback and i was more coherent. In contrast, I would also say I am an excellent verbal communicator - I have to be for my job as a teacher. But this is because there is structure to what I say in the class and have good subject knowledge. It's different to talking about thoughts and feelings.

    What made you decide to go for a diagnosis? I have decided that if there is a long waiting list I will go private as this is something I have already looked into.

    Apologies if this is a bit long - I think writing some of these extra things down on here is helping me untangle things in my head. If you want to discuss antthing feel free to PM me - I don't use this forum much so don't understand direct messaging etc.

  •  Thank you for your reply and the links. Now I can see the list which is what I was looking for. You're right - it is positive progress and I feel good about myself for making this decision to move forward with my life as I have been stuck on this for almost four years and I have come to realise that I will keep going back to it until I have got a confirmation of "yes or no you are on the spectrum"

    P.S  I have notifications turned on for this thread but have received no email notifications that anyone has replied. Is there anything I can do so they flag up on an email?

  • It's difficult isnt it when people don't fully understand but it's good you are getting help. How long do you have to wait for your appointment? Was it your decision to go for a referral or was it recommended by a professional?

    I have heard of that book you mentioned but haven't read it yet. I imagine it's qute validating when it feels like someone has written down what's in your own head. It means you are not on your own.

    IMy first book was Aspergirls by Rudy Simone and I got about 3/4 through and wanted to burn it. I enjoyed Sarah Hendrickx's Women and Girls with Autism Spectrum Disorder ( i find her very accessible and her youtube talks are great). I've also read Lianne Halliday-Wiley's Pretending to be Normal - I could identify with her very well and I've had Cynthia Kim's book delivered this week which I have yet to read.

  • Thanks out_of_steps. I will check out the other books. I have approx anothet 12 months to wait but the organisation I work for are looking into getting me a private appointment through their health scheme as I've already been waiting a year.

    My counsellor approached the subject of Aspergers first but I had already been thinking about it.

    I cried when I first starting reading tje book. I realised I wasn't alone or a freak.

  • I might add Alis Rowe to my collection once I have finished Cynthia Kim. It's good to see different perspectives on the same condition. 

    I read a list of traits on Tania Marshall's website. It was when I got to the "feels like a conversation gene is missing" and I gasped. I couldn't believe that other people had the same difficulty. 

    You are not alone. Best of luck with your diagnosis journey.