Seeking Diagnosis in the UK: My Diary

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Hi, everyone.

I know that so many of us here on WP don't have a diagnosis or will be seeking one. I wanted to create a little diary to explain the NHS process for me, as I go through it, with a place where people can ask questions if they have any.

I will include some facts, figures and feelings, but not too much detail as I understand that many, like me, would like to know more but don't want to be 'influenced' by knowing so much that it changes anything or provides an option to rehearse for what's to come. If I get a diagnosis, I want to be sure it's accurate, and I'm sure others are the same.

Hopefully this is allowed, and might be helpful to someone in future.


Background info:

In the past I had heard about autism, and I thought that I had many of the signs but never thought that I actually had autism myself. This is down to three things, being entirely honest and hoping not to offend:

- That I thought autism went far beyond the traits. I thought 'I seem to have these traits, but I'm not autistic'.

- That my view of autism was very much influenced by the media at the time - the typical 'mental health patient' portrayal that's slowly changing - and I didn't fit with that view.

- That I was, admittedly, in the judgemental camp that saw autism (though ADHD moreso), as an excuse for bad behaviour and a lack of discipline. Sorry, everyone!

I only fairly recently came to understand myself as autistic, after pushing it out of my mind. It happened when my toddler started to show my personality traits, coupled with meltdowns in busy places and fears of all sorts of noises (from pigeons to kettles). She's shown no other signs as yet, but looking into things for her made me realise that I really did fit. So I joined online communities, learned more, got to understand myself better and eventually joined WP. I had no intention to get a formal diagnosis at the time, because self-diagnosis was helping enough, but I recently reached a point where self-diagnosis could no longer do enough for me and I realised that I needed to think about the future as well as the present, so I decided to seek a formal diagnosis.

Where I am:

I have a GP appointment booked for either 18th or 19th of April. I think it's the 19th. I wrote a note when I was booking the appointment by phone, but I was focusing on the conversation and don't know if I wrote my note right. I wrote '19th April' but came off the phone convinced that I had a Monday appointment, so I don't know which day I'll be updating this thread. I haven't built myself up to phone back, but the GP usually sends a text 24 hours before an appointment so I'm waiting for that!

I have created a folder of supporting evidence which I'll take along. The GP probably won't need to see this but it will help me, and I can use it if I'm referred. It contains:

- A list of some of the core traits and signs that I think indicate autism, along with my husband's additions and things that he's noticed.

- Test results, specificaly the AQ-10 (I score between 6 and 8 depending how the questions can be interpreted), the AQ test (I score 32) and the RAADS-R (I score 119). Also the Confounding Factors Questionnaire indicating a 'low probability of confounding mental conditions'.

- An extensive two page letter about why a diagnosis is important to me and what I'd get from it.

- Details of a local adult autism specialist, though her website hasn't been updated since 2013 so I don't know if she's still working. I want to be confident in my diagnosis so want to be seen by someone that will know what to look for in adult women. I don't know much about how I'll be referred and who to, but wanted to have this information in case I can use it. I've also read that only NHS diagnoses will count as evidence for some accommodations in future, so I need to be sure that an NHS referral to this autism specialist would count as that, otherwise I would rather be referred to someone else under the 'NHS' umbrella.

- School reports from Years 8, 9 and 12 (only ones I have), indicating that I was socially inept and distant, and also that I was terrible at organising, planning and prioritising at that time.

I struggle with communication. I script every conversation in my head, but the words can't get out when I'm talking, so my husband is coming along to this initial GP appointment as my advocate and to make sure that my concerns are taken seriously. If I do get referred then I don't believe that I'll have him in for the rest, even if it's an option. Part of me wants him to hear about what I go through on a daily basis and don't talk openly about, and to have him there as my advocate again, but part of me thinks that I'll clam up in his presence and in particular won't talk about some of the more embarrassing or difficult aspects. I will ask him to be available to answer questions directed at him, though.

I'll be going into this without someone to talk about how I was as a child. I remember very clearly but I know that I don't count as a reliable witness to my own childhood, so that might bring some extra complication. We shall see!

Next update after my GP appointment, as long as this post is allowed.

Hi ArielsSong

Great post, not sure why it's in this section though I'm guessing mods will move it?

Funnily enough I've got my GP appointment on the 20th to ask about a referral. You're a lot more organised than me, I was just planning to turn up. Although I have no intention of pursuing an NHS assessment, for various reasons. I need a letter to be seen privately, which luckily me & my partner can afford. I intend to see Prof. Digby Tantam who is a very well respected autism specialist in London. I phoned up on Friday and was told the waiting list is 6 weeks and I'd need a referral letter from my GP.

Maybe I should think about taking more info with me though, I've never seen this doctor so no idea how they'll react. I know a lot of GPs still don't think autism is something an adult, especially a woman, can have. But you may get lucky and find a GP who knows their stuff.

Let us know how you get on, and good luck

Oh, thanks crazybunnylady! No, I'm not sure how it ended up in this section either. Oops. I've reported it in the hope that it can be moved.

Thanks for the post. I'd love to hear how you get on, too, though I hope if it's private you shouldn't have too much trouble getting seen as you're paying for your own diagnosis process?

Really at this stage the folder is just for me. Unless I feel well prepared I simply won't be able to go in there and ask; I need to feel like if they ask me anything I can refer to something in my folder. Though, honestly I'm expecting my husband to jump in if I start to panic.

I've been with my GP surgery for years but barely use the service. The few times I have, I've seen one specific GP and he's essentially called me a liar (twice for ear problems, because he couldn't actually see anything wrong with the ear when he looked, and once with my daughter who was struggling to breathe at night with a bad cough and he told me to 'get over it', basically calling me an over-protective new mum). So I've specifically requested NOT to see this GP and I'm seeing one that I've never met before - hopefully the experience is a better one and I'm taken seriously.

Good luck to you!

The other questionnaire you might want to take with you is the EQ. Typically both questionnaires are used to screen ASD.

If you have any trouble getting a referral, take the NICE guidelines which state your right to the autism pathway.

I filled out the AAA which maps the AQ and EQ onto the diagnostic criteria (admittedly the DSM IV criteria but there's not been drastic changes between the two). It has has boxes which I used to put traits and examples into.

This was sent off with my referral form. It saved me from forgetting lots of details as I tend to do at appointments. My assessor found it (and my childhood videos) very useful but I was unusually prepared for my appointment.

In any case, best of luck.

Thank you.

I've just done the EQ and also filled in an AAA spreadsheet which did calculations for me.

I will print all of that off for inclusion. If nothing else, it will be nice not to have to answer the questions all over again - I can spend more time explaining why I chose each answer, as some questions were a bit difficult.

I had my GP appointment this morning. I was extremely nervous last night, but much calmer today.

I went into the appointment with my husband. I sat down, she asked me what I was visiting for and I kept it fairly simple.

"I think that I might be on the autism spectrum and wondered how I'd go about finding out".

Of course, she asked me why I thought that. I mumbled out how I'd been doing lots of research and it all seemed to fit. She then asked if I minded her asking my husband his thoughts, I said that was fine and she moved on to him. Whilst he was filling in how I've always been a little 'awkward' and he hadn't done as much research as me, but thought it was a very real possibility, I pulled out my folder full of details.

She looked through it all and said she was impressed and pleased at the amount of research that I'd done. She wasn't interested in test scores and the like, but she was happy to see a big two-page list that I'd made of all of the core reasons that I thought I was on the spectrum. Obviously, that's what she'd been asking me earlier but I couldn't verbalise my answer - luckily, that's exactly what I expected to happen, so the list really helped and she asked if she could keep it to look through.

I'd also written in there the details of the autism specialist that was local to me, in case I could get to see her. Included in my folder were the referral forms that were on the specialist's website. My GP was pleased with all of this - she said she'd heard of this specialist before and how good she was, so it made her job easier to know where I could be seen. She took the referral forms and told me that she was happy to refer me and would send everything off, but that it wasn't going to be a quick process, which I knew already.

All in all, very easy and a comfortable experience. My own folder really helped me, and was very helpful when I just couldn't find the words to give her the reasons why I was there.

So, I've been referred! This was the part that I expected to be the hardest hurdle to jump, and I've done it. I'm feeling very relieved and thankful for finding an understanding GP that took me seriously, even when I couldn't explain my thoughts and feelings very well.

Thanks for writing about your diagnostic process, it's really helpful for me to read about. I'm a 39 year old, and currently a few months into research about HFA/Aspergers and how that might fit with me. I don't feel ready to contact GP yet, but hope to in the future. I also don't have a family member with knowledge of my childhood to call upon and wondered how that would affect the diagnostic process.
Good luck with all your future appointments, I hope they are beneficial to you.

Today I've received a letter to say that I'll be seen for an assessment on 5th August. Exciting! It feels great to know that I have a date for this. Waiting has been tough and has really affected me emotionally, flipping from "I know I have autism, I just need to have this confirmed so that I can move forward" to "What if I don't? Actually, I was probably wrong. Maybe I should cancel". But the truth is, deep down I know that the research I did was thorough and I do owe it to myself to go through with this. So, that's the next step. I'm also happy with how long it took. Waiting felt like torture, but I was honestly gearing myself up for a minimum wait of 6 months so this is very impressive.

The letter came with EQ and AQ questionnaires to fill in, but I'd already done these and put them into my file with all of the calculations, so this wasn't difficult. I've just copied my answers across and will send those off in the mail next week, since they want to see those before my appointment. Also included was the CAST for someone that knew me growing up, but it does say that they can work around this at the appointment if I don't have anyone I can ask. Since I'm estranged from my immediate family and don't want extended family to know that I'm going through the assessment, I'll have to leave this blank and explain this.

The letter does request that someone that knows me comes along, but this doesn't necessarily have to be someone that knew me as a child. My husband has known me for 10 years, so hopefully he has some useful insight. He's agreed to come with me.

A little update to my diary with just over a month to go until my assessment.

I'm still flitting constantly between "I know I have autism, I just need to have this confirmed so that I can move forward" and "What if I don't? Actually, I was probably wrong. Maybe I should cancel". That definitely hasn't changed in recent months.

Some days I feel like I'm functioning extremely well, and with the help of self-diagnosis I've even found ways to 'get over' some of the things that have always been troublesome, so understandably I end up thinking "I'm not autistic, I can clearly work through this stuff".

Then I spend time on the forum again, or I think back over my life, and I'm always reminded why I'm doing this. I have to remember that I have done A LOT of research and a lot of immersing myself, and of course I wouldn't be wasting my own time, let alone anyone else's, unless I really believe the conclusion of my research.

Personally, this stage is a mixed bag.

On one hand, I'm feeling more confident in myself. I'm learning more and more ways to provide accommodations for myself - I'm now happy wearing sunglasses in public on some overcast days, I'm learning different approaches to problems at home and I'm learning to second guess myself and ask myself "Why?" when I'm thinking rigidly.

On the other hand, I'm definitely experiencing fear about what's to come at the moment. I was previously very optimistic and hopeful, believing that the diagnosis would be mostly positive for me and would help me to access accommodations that I might need in the future.

Now, I've started to really see the downsides. For the first time, I've heard friends make sarcastic jokes about autism in my presence, unaware of what I'm going through.

Just as I'm getting more confident with my sunglasses, which have helped me hugely, I had a friend comment that she knew some "person that thought they were cool, wearing sunglasses on a not very sunny day, a bit of a weirdo". I've also noticed a few funny looks from strangers, and sideways glances to their friends in public, when I've worn my glasses indoors.

I'm noticing my own awkwardness a lot more, too. I have such a heightened awareness of my own 'autistic' behaviour and that's hard to deal with. I'd grown up believing I was just shy, never understanding why I couldn't fit in, and now I'm becoming quite self-aware. I'm realising when I say something, do something or act in an unusual way, and it knocks my confidence.

Then, yesterday, we invited a friend over to our house for lunch. That friend then started ranting about his job and the people that he works with. He was telling us how one of his colleagues has Asperger's, and was saying angrily that when they hired him they knew he had Asperger's, and now he's not performing well at work and is exhibiting some unacceptable behaviour towards women. Our friend was saying "And it's their own fault. They knew he had Asperger's when they hired him. What did they expect? Now I'm left dealing with this guy because they hired someone that obviously would behave like this and shouldn't have got the job". Hearing that is hard. I run my own business, but if I wanted to go back into the world of employment in future then I'd made myself believe that an official diagnosis would be helpful - they'd see the real me and how capable I am, but would also be able to provide the accommodations that would help me. Now I'm seeing the other side; the assumptions that people make when they hear the word Asperger's.

I guess the hard bit now is hearing first hand that many of my own friends have negative views. I've been wondering a lot lately about who to tell and how to tell them, weighing up who I want to be open and honest with and who doesn't need to know. And hearing the negative comments from some friends is making me wonder if I should keep it entirely to myself if I do get diagnosed. I want to be honest with certain friends and family - I want to be able to be open about this aspect of myself - but I'm starting to appreciate that telling people about my diagnosis could lead friends to think negatively, talk about me behind my back, perhaps cut me out of their lives.

I still want to go through with this. I believe that if I am autistic, it's better to know and understand than to take the 'ignorance is bliss' approach. But I'm certainly seeing a darker future on the other side of diagnosis now, when in the past what I saw ahead was lighter.

Hi Ariels Song, just caught up with your updates, great that you have a date for the next stage of your assessment, still a few weeks to go, but getting nearer! I don't really have many close friends, so don't worry about their opinions on asd, it must be hard to hear those comments you mentioned, but maybe you can choose with any diagnosis to tell only those you believe might be supportive. People often say judgmental things in my experience without much forethought or real understanding, so if they had a friend with asd perhaps they may be able to gain a bit more understanding and see that their judgements are unfair? Anyway, I hope that you are able to leave them to their opinions and focus on getting some helpful outside insight into yourself with the assessment process.
Good luck for the 5th!

Hi ArielsSong,

I find myself (Male 42) in a very similar situation as yourself and would like to offer my understanding of your situation and to empathise(lol no Really, from a logical perspective of course) the processes that you are going through.

My realisation that I'm an Aspie(as I like to call it) is only 2 weeks old and I'm starting to understand that the challenges we face in everyday life can only truly be understood by fellow Aspie's, Asperger's Syndrome, Autism Higher-Functioning, although in no way do I want to belittle the work and understanding of neruotypical people providing support within this area.(Thank You NT's .

One aspect of my journey I'm going through at the moment which is extremely interesting/intriguing is the total egregious reaction from my Mother, Father and Sister, to my claim of being an Aspie. I don't think it could of gone any worse especially considering how I thought the situation of informing them of my discovery would be met with nothing short of total understanding and acceptance. Lol how wrong I was!

However I have gained something amazing, the level of support and understanding as-well as resources of other fellow Aspie's and NT's within this community is outstanding!

I think I have a new emotion/feeling to comprehend, one that I've never had before one of belonging…

I hope that by sharing this info it in some way provides something for you, however as an aspie(even on this Forum) there is still a chance that i've got things totally wrong and have infact insulted you.

Hi,

Thanks for the messages!

It's lovely to have the support here. And as much as I'm now worrying about who I'd tell and how I'd tell them, my husband has been commenting recently that I seem so much happier and more confident, so this must be doing something right even if I do have all of those concerns.

I agree that post-diagnosis, if I do get diagnosed, I will need to carefully consider how open I am about it all. I have never been a closed book - I consider myself to be an honest person, proud of who I am, and so I certainly won't want to hide this aspect from people that I consider to be friends or from members of my own family, but it will take important evaluation that is best left until afterwards. No point thinking too much about it now, because in a few weeks I might be told that I'm not autistic and I'll be left adjusting to that instead! Regardless, my husband has agreed to talk through the people that I'd consider telling and to help me to make a few decisions.

Oakling, how is your experience going? I know that last time you posted, you didn't feel ready to seek diagnosis. Are you still planning not to, or are you making the decision?

With less than two weeks to go, my husband and I had a long talk about everything that I've been worried about.

To be honest, a lot of it had been brushed aside as our lives got in the way. My husband hadn't seemed that interested in learning about autism, but said that he'd support me through the process.

We had a chat, and it all came out that he sees himself as the 'practical' one. He doesn't need to learn about autism yet, just support me and then tackle it with the professionals if I'm diagnosed. In his mind, there is no reason to get wrapped up in a condition that I might not have.

However, I'd heard him over recent weeks questioning my behaviours more and saying "this seems like an autism thing" when I did something that fit the bill. When I picked up on this, we discussed how when I introduced the idea of autism it felt very out of the blue to him, and he initially thought that it was a possibility but nothing more. Apparently, since then he has been properly thinking about my behaviours (and questioning them with me) and he's now convinced. He believes that if I don't receive a diagnosis of autism, I should definitely go back and ask what else my 'problem' is, because he now understands that all of those little things that he'd always considered to be my 'odd quirks' and 'overdramatic behaviours' are not an intentional choice.

We also discussed who I would tell, so I'm happier about that. We approached the idea of telling family members, and how they would react. We don't see this as being successful, initially, though he believes that people will come around to the idea. I will find telling family members particularly hard, because I've always tried to forget my childhood behaviour and avoid the fact that I behaved the way I did. I've gradually moved on from that and I feel that I'm significantly easier to communicate with now, but telling them that I've been diagnosed would mean accepting that behaviour and would potentially bring up the past. At least, it's acknowledging it. I can't kid myself into thinking that they've forgotten how I behaved as a child, but I've always treated it as 'in the past' - if I'm an easier person to get along with now, then we can ignore the fact that I used to be like that.

I also said that I was worried about losing friends over this. He reminded me that the friends that back away after a diagnosis like this are not friends that were worth keeping. I had concerns that the people that I'd considered to be good friends would give up on me, which is particularly hard as this is the first time in my life that I've had good friends. He pointed out that they already know the autistic me, whether it's labelled as that or not, and so hopefully their attitudes won't change.

I explained to him how I've spent my entire life unable to relax around people, because when I relax I slip up and drive people away. I told him how I'm ok at the superficial level of socialising now, but if people talk to me for too long then the cracks start to show. I'm no good at keeping long-term friendships. I spoke to my husband about whether going public about my autism would make that worse. His reply was as follows:

"You say that you mask your behaviour and that it shows as soon as you relax. Personally, I don't think you're as good at masking as you've convinced yourself you are. There is no sudden line when you relax. You don't go from non-autistic to autistic. All of those autistic behaviours are always showing, just in slightly smaller doses. The friends that matter, the ones that you choose to spend time with, have already seen those behaviours and haven't been put off".

I hope he's right about this. Even though it's hard to hear that I have never passed as NT like I believed I had, it does at least explain why people continually seem to dislike me and I can never understand why. That's another hard bit, going from believing that "It's their problem if they don't like me, not mine", to "Actually, it's my problem". I hadn't believed that it was my problem for years - as I reached my late teenage years, I worked hard to convince myself that it wasn't an issue with me, and I believed that. It's been hard to go back to the mindset of childhood - "there is a reason that people don't like me". Hopefully, things will be significantly better, not worse, when I can tell close friends that reason and can let them know that I'm fully aware that I'm a bit 'odd' sometimes, and that it's not intentional.

Hi ArielsSong,

Thank you for posting about your search for diagnosis in the UK. I am going through the same thing at the moment, having my initial GP appointment in 2 days time. I can't pretend that I'm not nervous about it.

About a year ago, a friend with Aspergers told my partner that he believed that I have some form of autism. I have felt different from other people my whole life and have had major problems fitting in, despite trying very hard to be accepted. I have been wondering why this is for as long as I can remember, but had never considering autism as a possible reason.

When I started doing some research, it all became clear and I spent a week sitting at my computer in a state of shock. I told my oldest friend who gave a loud, sneering laugh and said 'are you going to get yourself diagnosed? Ha! Ha!' and ' there's a woman in our office who has it and you're nothing like her, so you CAN'T have it'. I've been too scared to tell my partner until a few days ago in case I got a similar reaction, but to my surprise he agreed immediately.

I've been reading everything I can lay my hands on about the subject for over a year and I am now seeking a diagnosis as I need to be 100% sure. I also need to be able to prove it, as the though of being mocked/disbelieved is intolerable.

I am slightly concerned with the possible difficulties involved in diagnosing adult women, particularly as I have had 49 years to practice blending in. Although, if I have to be totally honest, I don't think that I'm very convincing!