Think I have Autism and upcoming dr appt questions (UK)

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Hello all, I am in my mid 30s and from the UK. I've been reading this forum for a while and finally, after years of putting off, have a doctors appointment coming up as I believe I have Autism. I have a job and my own place but it's getting increasingly hard to manage my symptoms as life becomes more intense/noisy with more responsibilities.

In many ways I mask well and seem to have things together but the amount of effort that takes is increasingly exhausting and I have to plan/restrict so much to do this. I've made a doctors appointment with a doctor who specialises in mental health so I'm hoping she knows something about Autism (I realise it's not actually a mental health issue) and have the following questions... thanks in advance!

1. What's the current criteria needed in the UK? What will she be looking for? This will help me with writing down my symptoms in the relevant categories as you'll see below, I struggle to be concise when writing! I'm a bit confused as some of the sites mention Aspergers so I think they might be old

2. Is there anything I should take with me? Any particular online tests or NHS Autism forms etc?

3. I know I'll feel stressed and anxious before the doctors. Rather than masking this and trying to come off well would it be preferable for the doctor to see me at my worst to get a realistic ideas of things? Should I avoid going out of my way to have a peaceful morning prior to appointment?

4. Any other advice?

Here are just some of the reasons I think I have it. Sorry it's so rambling...

- Terrible sensory issues. I have to walk down quiet roads whereever possible and when I do go on ones with cars I need to wear my headphones with music or occasionally use plain noise cancelling ones. I need to live on the top floor of everywhere I live (plus use noise cancelling headphones if neighbours TV is on so I can concentrate) and I cannot go straight from work on to the bus home, instead needing to sit quietly in the park or riverside first. Clothes shopping is one of the worst experiences for me as I'm completely overwhelmed by noise, choice, people, layout and such. I can't bare the sound of certain hand dryers in toilets and have to close my eyes and cover my ears when I hear it. Also have issues with bright sunlight and put my hood down over my if overwhelmed. Noisy places with lots of people are troublesome (especially with children) and I have to think hard about where I go to eat, where I go to sit etc... every day requires copious planning. Regularly have to withdraw inside myself and stare into space when in a busy sensory environment just to calm myself down and remain able to function well (other times I'm hyperfocused) House needs to be clutter free and minimalist.

- Strict routines. I've ate much same dinner (when I'm at home, I'm different if I go out) for 20 years and have the same breakfast, lunch, snacks most days at the same times. I continuously buy the same shoes over and over again and will wear the same clothes for years on end, buying the same or very similar versions if possible. HATE changes and find them very hard. Had the same job for 12 years and would've stayed there if I'd not moved house.

- Social issues. I only have 2 close friends and my longest romantic relationship lasted for one month. I only see my 2 friends every couple of months and before meeting them it requires copious planning such as "What have I been up to since our last meeting that I can talk about?" "What can I ask them about?" "Where shall I go with them that isn't loud and overwhelming?" "How long shall I stay with them?" "What excuse can I make if I wish to leave?"

At work I avoid talking to colleagues as much as possible but have a list of ideas for conversation in my head if need be. It is hard enough to do everything in the job let alone the social aspect and I feel like s**t at the end of the day with too much chit chat. They almost always start talking to me first and if I am overwhelmed I will get away and hide and go down unusual corridors etc to avoid them. Hate eye contact, small talk and not good with facial expressions. Ditched so many friends over the years because they were confusing to me and not straightforward enough. When I do open up to people I sometimes open up a bit too much and tend to talk a lot.

- Other. TERRIBLE imagination... HATE playing imaginative games with my niece/nephew, would rather just talk with him. Struggle with fiction unless it's very relatable. Struggle to keep up with movies as I'm always distracted by things in the background and lose track of what's happening. Subtitles help with this. Like going for long walks at night, it makes me calm. I stim quite a bit, often when stressed or happy, mostly rocking, swaying, rotating, banging my knuckles together and pacing. I try to limit it in public or do more subtle ones or fidget with things. Use repetitive scripted phrases in many areas. Obsessive habits that I can lose myself in, at the moment it is Spotify where I have playlists of 800+ songs. Can regularly lose a day on the internet researching stuff. Love getting things in order. Rules and structure needed everywhere.

When I was younger I used to push through all of this, but was constantly angry/exhausted/unable to communicate properly or would go home and just cry out of sheer overwhelment. Long depressive spells etc where I couldn't get anything done at all. Big anxiety. My emotions were all over the place and I felt different for as long as I can remember. I could never concentrate at secondary school and when they put us on a big square table where you're all facing each other it was absolutely impossible. No speech delay, advanced at reading as a young child. Extremely anxious about talking to people I didn't know as child and sometimes struggled to get my words out as I still do if I become very overwhelmed and shut down. Gullible as teenager and would let people dare me into doing stupid things, thought people were my friends when they were just keeping me around to laugh at me. No boundaries of what was appropriate or ability to see consequences of my actions.

It was only since I discovered Autism/Aspergers and started putting Autism related tactics in my life that I started to feel calm and centred for the first time in my life, but it's getting harder and harder to manage on my own as I've gone up in my career and am having more noise/responsibilities in my life. I feel I am on the edge and can't do this alone. I don't want to mask so much, I am getting too old for it nd don't care what people think so much anymore.

Welcome to Wrong Planet, Sam64.

First, a little caveat: procedures for autism diagnosis, waiting lists, etc. vary quite a lot across the UK. It's a bit of a postcode lottery, so bear that in mind when you're reading any replies.

To take your questions...

1) Print out what you've just posted - you should have more than enough to go on for the preliminary stage there already.

2) The two questionnaire's linked below are recommended by the NHS guidelines for early screening, and are designed to complete yourself without prompting. They are only a small part of the evidence, but are often used as an indicator of whether a more complete assessment is necessary.
Autism Quotient Test
Empathy Quotient Test

3) Don't try to disguise your autistic traits at all if you can help it (I realise that it can be very ingrained!) If you feel the need to stim, then do so. Don't force eye-contact if you find it uncomfortable. But I wouldn't make any special preparation other than what's mentioned above. Except...

4) Talking about this stuff openly with a stranger will likely leave you feeling pretty worn out. So prepare the rest of your day in advance so that you can just get home and chill out without any other demands pressing on you.

And finally; you have mentioned many things in your biog which are common experiences here; I am similar in many ways myself. We can't tell you for sure whether you should be diagnosed, of course, but so long as you find things in common with folks, you're just as welcome to hang out with us.

Best wishes.

I was in a very similar situation to you, in terms of age, masking, seemingly "ok" on the outside - but things had been getting worse for quite a few years.

I saw my GP in October and got a diagnosis in December - the entire process only took 2 months from start to finish. There is a postcode lottery to assessments though and I was lucky with where I live.


1. The criteria varies from CCG to CCG (Clinical Commissioning Group). For me it was:

*Have not received a previous diagnosis of ASD
*Do not have a diagnosed learning disability (as another service is commissioned to provide this assessment)
*Can evidence that symptoms have been present from birth ie not newly developed
*Score of 6 of higher on the AQ10 questionnaire.

I suggest you look online for adult autism assessment criteria for your local council or CCG.


My psychotherapist uses ICD10 and DSM5, so I was not diagnosed with Asperger's Syndrome, as it doesn't exist in those. I personall identify as Asperger's as, had I been diagnosed under the old manuals that is the diagnosis I would have had. Regardless of whether people agree with it or not, I find it avoids any confusion when I first tell someone as most people in society have a certain view of Autism that doesn't resonate with how I present myself.



2. I printed off the criteria from by CCG and took that, highlighted, along with evidence of each point. Print off and complete an AQ10 questionnaire to take with you, most GPs will want this.
I took a list of my symptoms, behaviors and actions as well as a letter from my wife about how my "symptoms" impact our family life on a daily basis.

There are a number of online tests you can take, they are not official but they can (together with your lists and AQ10) provide a good picture. The ones I took as well regarded in the online community and all showed that I was well beyond any accepted thresholds:

RDOS (rdos.net)
AQ50 (the full version of the AQ test)
RAADS-R
EQ (Empathy Quotient)


3. Be yourself. I mask very well and it is hard to get out of decades of habit, but as I had all of the above evidence and passed the criteria my GP had an obligation to refer me for assessment. I function very highly, I know myself and can articulate well my issues - you may not be in the same position, but from the way I've read your post it seems like you are. Try not to worry about it. The GP is not there to assess you, they are a gatekeeper to the assessment process and are there to ensure that you meet the relevant criteria for onward referral.


4. Agree with previous posts; prepare to feel wiped out and/or very emotional after, so try to make sure you don't have anything too much planned straight after the appointment.

Have an idea of what getting an assessment will mean for you - what do you want to get out of this process? How will it change/impact your life?

For me, it was the knowing and peace of self that I need to get. I've not taken up any of the post-assessment support as I don't feel I need that at the moment,
but being diagnosed has been life changing for me and helped me to understand and manage my behaviors better, and to reduce the impact it has on my colleagues and family.



.....and good luck!

Welcome to WrongPlanet Sam64!

I will give you my impressions. First off, many of the symptoms that you describe matches that of Aspergers/High Functioning Autistics. The advise given by Trogluddite and SoapOnARope are very good. Many times when a person visits a doctor, they are stressed out and find it difficult to communicate orally. So bringing along this written information to your doctors appointment would be helpful. There are many Aspie symptoms and I am sure that if you did some more searching a few more items could be added to your list.

The next item is "what will you do when and if you are diagnosed as an Aspie?" From my perception it is not the quirks of being an Aspie that causes our species to feel so much pain but rather the stress that causes the pain. So the ability to understand and quickly shed stress is the proper method for any therapy. To this end I would recommend two types of therapy that I would feel might be very helpful. These are called Somatic Experiencing (SE) Therapy and Tension & Trauma Release Exercises (TRE). This type of therapy was developed to help individuals suffering the effects of PTSD, trauma victims, and disaster victims. So although it was not specifically tailored for Aspies, it does specifically target the stress that Aspies have to endure during their lives. And also many Aspies swear by it and its effectiveness. I would recommend that you start by reading a book by Peter Levine called "In An Unspoken Voice".

The next point is coping with the stressors. For example you are coping with your audio hypersensitivity by using headphones to limit noise. But there are a variety of tools available. Many Aspies wear sunglasses to limit the effects of light. Some Aspies are overly sensitive to certain colors of light. There are special Irlen glasses that help with that condition. I took a different approach and use mirrored glasses. They have a blue exterior mirrored coating but are not tinted so they are not true sunglasses but they have the advantage of being able to wear them inside. There are a variety of items that can help you with dealing with the stressors. Another example is weighted blankets that can help you to obtain a better nights sleep. So explore the options and experiment and find ones that are beneficial to you.

Thank you all for your excellent advise. Really helpful.

Did you find circumstances had changed or do you feel it was just a build-up of repression over the years? I think with me it may be a combination of the two.



I can articulate my issues individually, but there's so much I'd struggle to know where to start and stuff so will certainly help to have notes.




That's the main reason I want to get diagnosed too and also:
- Legal right to request reasonable adjustments at work if I need them. For instance a quiet place to go too if necessary
- Being able to tell other people I have Autism to help them understand me and my needs/quirks better. I realise it's no guarantee that they will do as everyone's different and you'll still get sceptics/ignorance, but it's a damn sight more solid than "I think I might be Autistic but I've not been diagnosed" and for myself has more sincerity if it's confirmed properly. Even the few people I've told I expect I am I've been able to be more myself around afterwards somehow.



Ohh, I'll look into them, thanks, I've never heard of either of these types of therapy but just looked up some quotes from the book and it does look like an interesting read.



Thanks again. I do have some prescription sunglasses and will research weighted blankets. I am also planning to get triple glazing windows at some point to block out car noise from outside. They're incredibly effective and completely seal out all noise.

A combination of both. Ive always been "a certain way" that was never in doubt, but a house move (and the associated financial butden) was the tipping point that caused everything to come to a head. It's interesting, as I'm aging I care less about masking so you would think things would get better over time. However, the increased stressors at this point in my life and the reduction in what I feel like is energy to apply to my coping means things were getting worse - certainly in terms of anxiety.

I feel a lot of syngergy with your post, I could have almost written it a year ago. I've also been in a position now to declare it to my manager and whilst I'm not activily seeking reasonable adjustment, my colleagues know and I have the option there to persue it if needed. I do hope your GP listens to you and does right by you. There is a lot of focus on adult autism (the lost generation who are now coming forward) and I hope it works out for the best. Personally, seeking diagnosis was the best thing I have ever done.


....I need to get some triple glazing, I sleep so terribly and anything to reduce background noise would be a godsend!

The most important thing is to not just mention your traits but make clear how they impact your life negatively. Same at your assessment. They'll be looking for that.

It's good that you're seeing someone who knows something about mental health. The first doctor I saw said I couldn't have Autism as my speech was too good and I'm not obsessed with trains.

Such "slow-motion" burning out is very common. I wasn't diagnosed until I was 45, and prior to that I had experienced several cycles of picking myself up, biting off more than I could chew (or being force-fed!), and then slowly burning-out again until becoming unable to cope after a few years, often accompanied by the onset of severe depression. Whether this happens, and how fast, will depend upon how much pressure we're under so, as you suggest, there are both circumstantial and cumulative elements to it.

It's not that the autism itself changes, but that the combination of masking, sensory overloads, social anxieties, etc. drains our mental energy. Thus begins a vicious circle - masking becomes more difficult because we're mentally exhausted, so our autistic traits often become more prominent, making us more socially anxious; all draining the batteries even further, and around and around we go.

Although periods of burn-out can easily lead to depression, I think it's important to recognise burn-out as a separate phenomenon, and very few GPs or mental health workers do. Intensive counselling and encouragement to engage more with friends and family can both be very beneficial for depression, but can be exactly the wrong thing to do when trying to recover from burn-out. Resting our body and mind, and limiting the demands that we're under are essential. Ultimately, the best thing to do is to find a compromise where the demands upon us don't push us into burn-out in the first place - but we live in a society which can make that difficult to do. Reducing the amount of masking that we do can be an important part of this, and doing this has massively improved both my energy levels and my mental health. There can be downsides to this around people who are intolerant of autistic behaviours, so I'm still rather selective about when and how much I let my mask down, but on the whole, I find that the benefits have outweighed the disadvantages.

Welcome Sam. This sites a good one.

Totally agree with everything you said and I think it's important to monitor how overwhelmed we are throughout each day. I've noticed my worst days are when I've had multiple changes, extreme sensory input and a lot of brain processing needed with no rest. I can kind of somehow feel in my nervous system now when it's starting to get too much... a slight angry or anxious feeling appears in my chest.

With masking I also found a nice compromise to be to mask when I initially meet someone in a social setting: "How have you been? I've been doing this and that" etc... and then to go more into my shell after. Somehow it seems to work most of the time so long as I break the ice initially. I have a list of topics I can talk about in my head that are planned in advance as I never know what to say when people say "What have you been up to?" otherwise.

Ohh, I also remembered I had speech therapy on NHS in 2008 to improve my communication skills. I'd originally gone in due to throat issues and discomfort, but she said I was using my voice all wrong which was causing the pain. Do you guys think it's worth mentioning that and in my actual assessment? The speech therapist found my voice was too high pitched, quiet and immature and I have an NHS letter from them which states the following:

"Following your voice therapy sessions you are discharged Speech and Language therapy. You have achieved your therapy goals in that you report feeling more confident in speaking and you no longer feel strain and discomfort whilst speaking or after speaking for sometime. Overall you are speaking at a pitch and volume level more appropriate for your age and gender.

You are recommended to:
- Continue to have confidence in the appropriateness of your voice and overall vocal presentation
- Continue the exerises you have been given on a once daily basis for as long as you feel they are of benefit in supporting your maintenance of appropriate voice use in day to day situation
- Continue to seek ways to manage stress and tension"

Yes. Take it with you. You may as well. Nothing to lose.

You may find useful material in this thread from three years ago, when the poster wrote a diary of their journey from suspicion to diagnosis through the NHS in the UK.

viewtopic.php?f=3&t=313210&p=7246621#p7246621

The link drops into the end of the thread and the point where testing and diagnosis had been received.

Hiya Sam,
I'm in pretty much the same situation as you just older
My drs appointment is on Saturday!
I joined a facebook group about a month ago and ever since then I've been learning more and more.
There is a lot of discussion on there about diagnosis, basically the same as you've been told on here, copies of test results etc.
Personally I have copies of the AQ test, the aspie quiz and the ritvo autism asperger diagnostic scale. All the quizes are on aspietests.org.
I’ve also been going through the DSM-5 diagnostic criteria and the ICD-1 and I’ve also stumbled across lots of lists of traits etc that relate to women with aspergers.
I know you can’t have a diagnosis of aspergers anymore but I definitely fit into that catagory.
I’ve basically gone way overboard with the information but from what I’ve read it will all be useful for the actual assessment.
I’ve always thought a lot of the way I am is due to my anxiety but the more I read the more I’m realising it’s not just that.
Anyway, I need to stop waffling!
Feel free to PM me if you want a chat

Thanks rowan_nichol, that's very useful and good luck cheziecat! Yes, the symptoms can be somewhat different for women and people say they're better at masking than men. What's the Facebook group please?

Well I went to my appointment today. I had so much anxiety that my body was literally shaking as I spoke, I was unable to make much eye contact and jumbled my words up a lot. I found it incredibly difficult to talk about all these personal things with a doctor I'd only met. She could tell I was stressed but luckily she was absolutely fantastic... very patient, kind and understanding with knowledge of Autism. She certainly saw me at my worst. I went with a list of reasons I think I have it, how it affects me and why I think a diagnosis would benefit me. She asked for a copy of this at the end so I gave her it alongside my AQ-10 test where I scored 8/10. She will send them off for my assessment.

Last edited by Sam64 on 03 Jun 2019, 3:03 pm, edited 1 time in total.

How long did you have to wait in all between the initial asking and the assessment?