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

I completely understand the brain and mouth don’t match thing and not knowing how you feel about things until after. 

I’m 33 and also had a similar story, thought about getting an assessment for the last 3/4 years. I had one recently and got autism traits not the diagnosis. I would definitely recommend writing things down before you go in for an assessment and thinking about lots of examples. I found it an odd experience and I thought of more examples after I left which was frustrating. 

Good luck with your journey :)

Hello. I’ve read your other comments and appear to be based in the same area as you. 
I’m 29, I wrote a list of all the reasons I thought I might be Autistic and rang my GP surgery. They arranged for a specialist doctor to call me back, who then went through the list with me and acknowledged my long history of mental health issues on my record also. The doctor asked me to send these reasons to her in writing (during lockdown- no face to face appointments available) which she would use for my application for referral. There is no provision for adult diagnosis in the NHS in my area, so the doctor applied to the Local Clinical Commissioning Group for funding to refer me for an assessment. I received the appointment, was assessed and diagnosed - within a 6 week period, from first phonecall to GP to full diagnosis. 
I understand from reading others experiences on here that my experience and wait time is very different than the norm - but what I’m trying to say, is if you know - then tell them. 
If they don’t want to refer you then you would be entitled to ask them why they don’t feel you meet the criteria, and I’d ask for a second opinion if you feel very strongly. 

it might be difficult if there is no NHS assessment provision in your area, but they might have other avenues to investigate for you. 

My doctor has agreed to refer me to the local assessment service. 18 month wait. Thank you all for your support!

Thank you for your contribution, Rach. I went to my GP yesterday with some info. It wasn't exactly a bulletpoint list....more,  several sides of A4, but split into headings. I felt like I needed to give some examples. I have considered private assessmentioned before...I will see what my GP comes back with first.

Hi, I think it's a really good idea to make perhaps a bullet point list of all the things that you would like to mention, so that you can ensure that you bring them up when you need to. My personal experience of diagnosis (I was diagnosed at 30, and am 32 now) was that I was initially referred through my GP, but the NHS waiting list for assessment was around a year and so I went privately. It costs, but is available much more quickly and I received my diagnosis at the end of the assessment on the same day. The assessment itself is very in-depth and consists of some practical activities such as arranging shapes, and discussions around your personal experiences and behaviours over several hours.

I also think autism is becoming more and more widely understood, and there are a lot of support systems being put in place in workplaces etc. Wishing you all the best for your diagnosis journey!

How long have you been aware you might be autistic?  I've been through that push and pull so many times. I finally pushed myself and have spoken to my GP today. I was glad I had prepared some notes as the rather open question of "why do you think you're on the spectrum" is too vague and I was immediately stumbling over my words. It sounds really trivial when you say "oh I feel different" or "oh I struggle in social sityations" cos everyone does to a certain extent!

Could you see a different GP? As in, are there more than one at your practice?

I wouldn't worry about getting a last minute call.  Going off what people on here have said, there's likely to be long waiting lists. I'm sure some people would give their right arm for a last minute call. (I know what you mean though. I put my request in on the app and my GP was going to ring me back at anytime. I had to make sure I was prepared enough as it was a bit like being caught "off guard" and that's only in the first instance of speaking to the GP). I'm sure you would have enough evidence with whatever you had and the assessors are trained to get what they need from the appointment.

The AQ *really* needs updating!  There are so many questions on here that I could answer either way, depending on context.  You're absolutely right about the 'collecting things' question: these days many of us collect information via the net rather than physical objects to be lined up and sorted.

The SQ (Systemizing Quotient) and the EQ (Empathy Quotient) tests are useful, too - though as equally frustrating as the AQ test, with many questions that aren't straightforward to answer.  I've printed out my tests so I can annotate them on the questions that I could have answered differently according to context.  

And I know exactly what you mean about the push-and-pull of seeking a diagnosis: I thought I had finally got to the point that I knew, with absolute certainty, that I am autistic - and am now starting to question myself again!  Like you, I need to have everything written down, as I find it very difficult to remember all my reasons for believing I'm autistic otherwise. 

I am at the point where it makes complete sense* to ask to be referred for assessment, knowing that there's likely to be a long-ish wait, which will give me time to pull every single last shred of evidence together as proof of autism - yet I am also panicking that, if I were to do that, I'd suddenly get a call to say they had a last-minute cancellation, and would I like to be assessed right now!  (I got my ADHD assessment six weeks after phoning to enquire how much longer I'd have to wait, and my adult daughter, similarly, only had to wait about eight weeks after referral, as her GP pushed it through as a matter of concern.)

(*one reason I'm stalling is because of needing to ask for a referral via my GP: I have pretty much lost all faith in him since he was so unsupportive of my daughter's difficulties, yet can't deal with the prospect of trying to change my GP to a new one...)

Thank you. I looked again at the AQ test. "I like to collect information about categories of things".....no, but I like to totally absorb myself in finding out information about a subject. We have a thing called the internet these days. So while it's not necessary collecting information in a physical sense,  it's collecting information in my head and Web history. 

I could do the AQ twice. Once taking it literally as it is. And another taking it by way of interpreting the questions.

I had momentum two weeks ago about seeking a diagnosis and now I feel like I'm talking myself out of it.  AGAIN. 

Unknown said:

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.

Sorry to hear that, try not to get upset and feel helpless. Instead take your time, your smart enough to know typically how questionnaires operate, you will be smart enough to give insight into who you are on it. There are other ways you can obtain a diagnosis for example you could see a doctor/nurse in person.

Hi @out_of_step, apologies for the delay in replying. I've been a bit out of sorts these past couple of weeks. 

I'm in South Wales. I understand the issue with bringing it up with parents. I had to go through a questionnaire with my mum. I got so worked up about it. She gets mental health and conditions but not so much if it's with regards to ourselves. Then we suck it up and carry on lol. However, it was helpful and hopefully I won't have to bother her with it again.

I've not watched too much online. I'm not really sure what I should be looking at if I'm honest. I'll take a look at your recommendation. Thanks. Good luck on your journey.

Kerri-Mod I am still not receiving notifications to this thread. Are you able to help? 

Hi VikingMermaid glad we both appreciate Sarah Hendrickx! I completely agree on the outdated stereotypes. It's only as I have read more about female experiences that i can see there are different ways you can apply the criteria and how it presents in different ways. And not just for females. I'm sure there are plenty of males who do not fit the stereotypes and also those who identify with either male or female gender. This is why it's been hard to discuss with my partner or a close friend as they don't understand it like I do and are only really aware of the stereotypical presentation. I told my friend it's like I'm a graceful swan on the surface but you don't see all the paddling away underneath!

That's why I like Anna Moomin on YouTube - She challenges these stereotypes.

I feel like I've been waiting at the platform of discovery, reading all the different timetables. But you don't get anywhere just through reading!

out-of-step, I'd just like to congratulate you on taking the first steps (no pun intended) in pursuing a diagnosis; it takes courage to do that. 

I'd definitely recommend Sarah Hendrickx (both her book on girls and women, and YouTube) and Cynthia Kim, though with another of CK's books: 'I Think I Might Be Autistic: A guide to autism spectrum disorder diagnosis and self-discovery for adults'. 

It's short (106 pages) and an easy read - but the most important thing, for me, is how Cynthia takes the DSM-5 criteria for autism and breaks each one down into suggestions of how that might look in your own life.  When you have little more than the outdated stereotype of what autism looks like (male, usually a boy, lack of eye contact, non-verbal or with very obvious verbal/social impairment, constant rocking back and forward or banging head against a wall) it would be easy for most of us to think we are definitely NOT autistic!  But Cynthia's book very clearly untangles the DSM terminology and makes it clear how many of our traits, our quirks, our differences definitely do fit the criteria (especially the more subtle signs so often found in girls and women).

Wishing you the very best of luck with your journey of discovery! :)

Kerri-Mod 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?

Thank you for your kind words EmbraceDifference.   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.

Hi P1nkG1n 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.

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

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

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