Seeking Diagnosis in the UK: My Diary

Post Reply New Topic

Thank you.

Yes, I was diagnosed as Autism Level 1 - she said it would be what used to fall under the Asperger's umbrella, but that they are now working on the term autistic for this as well. I knew that was the case in some places, but hadn't known that it was the case in the UK. She did say that either are still 'valid' terms so I could use either one. I have been using 'autism' when telling people today, because for me it feels right to use the current 'accepted' term.

I have been told that I'll receive my full report in roughly four weeks, giving me a chance to look through, and I also have the option of therapy sessions which I believe I'll take up but have asked to keep 'on hold' for now, whilst I decide what it is that I can use them for to get the most out of them. I don't want to waste these in any way, for my own sake or for hers (or, in fact, for the NHS who have agreed to pay for these for me). I'm taking some time for now to let it all sink in, and will see from there where to go next. I have been told that it is up to me how these sessions are used - whether I use them just to discuss my feelings, or to come up with practical solutions and goals to work towards.

I definitely had big concerns about telling people and losing friends, but everyone just responded with "Wow! What does this mean for your future? How are you feeling?". I only got one apology, a "Sorry to hear that", and even then that was followed with "Unless this is a good thing for you?". I fully understand that perspective, too - I may have said the same to someone before realising what a relief it could be to know.

How did the day go? Was there just a lot of talking and questions? Tests to take?

Where did you go for the assessment?

Interested as I am UK too and looking at maybe going for an assessment in the next couple of months

I hope this knowledge/validation works well for you. It always nice to see when your hard work and effort gets results.

Thank you. I went to see a specialist here in Lancashire (Preston) - it was a referral through the NHS, so the GP applied for funding and I then received the appointment in the post. It was question based, primarily - she would ask questions, and then based on my answers the conversation would move off on a tangent, with her constantly taking notes based on what I was saying. Again I am keen not to go into too much detail, but some of the questions I could clearly link to what I recognised as being 'autism' focused, e.g. "How are you with bright lights?", whilst some others appeared more general with a broader scope for answering.

She did have a basket of objects available, but these were not included specifically in the test - my daughter was in the room and ended up playing with these, so whilst I was passed a few by my daughter (and played with them a little whilst chatting), they weren't included in the assessment. I think they more there as sensory fiddle toys. I was asked at one point if I was the type of person that 'fiddled with things' and I said no, which made her laugh because at the time I was sitting there playing with one of the toys whilst talking to her. That's not usually me, though.

I'm unsure of the name of the assessment, if there was a specific name for the one that she was doing (presumably there was).

Once I have the detailed report, I will be happy to post up a bit more information from it.

ArielsSong - congrats on finding out, and knowing that there's a reason for the way you are. I was also surprised as my own reaction to my diagnosis. I was expecting relief but I think I already knew. So in the end, it was just a man telling me that I was correct. I think that had less of an impact than I thought!

You're welcome, if I understand what you are thanking for.

The one thing you are confusing me on is the autistic term thingy. What is that suppose to mean? There is no term in the DSM-V that I'm aware of of autistic. It's just what people with autism refer themselves to, if I am correct by that meaning. In the DSM-V, all the old PDD diagnoses fall under the autism spectrum disorder category, being placed in level 1-3. So if your region refers to this, then everyone who is diagnosed with the DSM-V will be diagnosed with autism spectrum disorder - level x.

My report had a bunch of other things in it, since it wasn't just for autism, but half of it included stuff for autism. I was reading it and didn't realize half the stuff I did to be honest. It was so weird. Like, apparently, when talking about a map, instead of talking about trips, I would talk about facts. Apparently you are suppose to talk about your trip with someone according to the test, so I found this different.

Take the therapy sessions of course. But I'd ask how long you have before they "expire", or if the sessions do "expire. But there are books you can read or do some research on what is recommended to treat autism. I'd personally get a self-help book, and then branch off from there with the therapist if you have enough time to read the book before seeing them.

I don't think people should see you differently if you told them this, but our society is sadly like this for the most part. If you told someone your arm is broken, would they react about something that doesn't matter? No.

Anyways, I would work on treating it myself if I were you. Communicate with your husband on your needs and what he can do to support you. Like, one of the things it says in my report is that if I am having a bad day or am anxious, I may read someone's neutral face as being negative. So I would tell my friends if I am complaining that they are angry with me, ask me if everything is okay, just as an example. I think I told one of my friends this, but not all of them. But stuff like this may help your partner understand when they are frustrated at you. And work on it by yourself so your life isn't as impaired by it. Join a social group or something. I don't know.

Hope this helps

I sometimes wonder if my diagnosis was accurate, but I won't contest it because the Tory government in the UK are very harsh on people with anxiety, and the media bully people saying they're just making it up.
I had an abusive childhood with no confidence. It was so abusive I don't think I will ever get over it, and I had agoraphobia which made life difficult to work or leave my abusive husband. He made my anxiety worse too.
I don't have any sensory problems. It was my adoptive mother who was more sensitive than me as she couldn't walk through a department store without saying the smell of perfume was affecting her.
I wanted to leave my husband but I was being bullied and harassed by the government to get a job when I had agoraphobia. All the doctor did was made me sit through hours of cognitive therapy with an annoying therapist who kept telling me that it was my fault I get anxious, and if I didn't think about bad things then I wouldn't be anxious. I was put on a completely useless work programme by Job Centre which made me more stressed and depressed where I felt like killing myself.
Then when I had an asperger's diagnosis they stopped harassing me and my anxiety has lowered to the point that I could go back to work part time at first, which increased my confidence and I don't have threats of having what benefits I do have taken away so I end up homeless and starving.

from a GP get referred to see a psychiatrist with a psychologist

Apologies. I realise what you're saying, there, and I didn't explain myself well. You're right, I was diagnosed with 'Autism Spectrum Disorder - Level 1'.

However, when diagnosing she said that my diagnosis would have once been 'Asperger's' and now it's classified as 'Autism Spectrum Disorder - Level 1' within the DSM-V, so she suggested that I could choose to refer to myself as 'autistic' or having 'Asperger's' (or, obviously, variants of these such as a 'person with autism' if that suited my preference better). I have chosen to describe myself as autistic because I feel the most comfortable with that, because it fits with the actual diagnosis I was given at the time. I hope that makes sense, but I may still be failing on the clarity here.

And thank you, I had already been doing a lot of self-help and have been finding it hugely successful so I am definitely continuing with that route. I feel like I don't want to miss my opportunity to make use of the therapy sessions, however, though I also don't want to waste them. I am spending time thinking about what I can get out of them, and what I really need.

Oh okay. I get what you are saying now when you explained it like this. The psychologist who diagnosed me said I would be classified as Aspergers, but I had speech delay, so by definition, I can't, I'd be considered HFA if diagnosed by the old DSM.

I just recently bought a book, and I wanted to get started two days ago, but have procrastinated. I also bought a book about executive functions, and one of the things in this book is about how to have better time management. It's ironic in this sense. I feel if you actually do what the self-help book is saying and you understand what it's asking that you can improve yourself. It may take a lot of time, but it should be worth it if you followed to two things i said before previously.

Good luck at your sessions when you them then

Here's to your milestone, ArielsSong.
Yours was the first UK diagnosis 'story' I saw on coming back here after my own, so it really caught my eye. Your posting style is relatable, too.

My interest in the variation in the UK is only really just beginning, but this is very curious already! In the course of my lead-up, assessment and diagnosis the only term used was Asperger's Syndrome.
I wonder how the culture of the specialists' works - as in, who decides to base their work on the DSM and how? And so on. My impression up to this point was that UK specialists used the ICD and not the DSM, but it looks more like they take influences from everywhere, more so from one than the other (or neither?) depending on where you are.

The course of the follow-up is also interesting, since that looks different, too. In my case I was automatically booked 2 follow-up sessions with a nurse-specialist to talk through the 'meaning' of the diagnosis. I think therapy type sessions can follow that, I'm not sure.

I wonder if the DSM influenced scheme is the dominant one - or perhaps is growing, making your diagnosis the new standard, or whether things will stay patchy all over the country. I'd really like to see it on a map. I suppose the teams who do diagnoses would be happy to share that information and they shouldn't be hard to find. It could be a sort of project to work out the wider picture.

I got my report last week. My feelings were mixed. I was vainly hoping for numbers and thresholds and so on, like a previous Neuro report - highly objective - to give me a stronger feeling of validation of their decision, but it isn't like that. It contained only one score, the rest was descriptive and seemed really equivocal in many places. The wait for the report felt very long!

I hope you keep updating.

[/quote]

Hi Voynich,

That is really interesting. I had read when I started researching that the DSM was not commonly used in the UK, but at the same time it seemed like things were moving more towards it, so I wasn't too surprised when I heard her explain that. However, I hadn't realised that it hadn't changed across the board.

The National Autistic Society website says that:

Although not the most commonly used manual in the UK, DSM-5 is likely to have a significant influence on the next edition of the ICD. This manual has recently been updated and is also used by diagnosticians.


That does show the variance across the UK, I suppose. As soon as I have the report I'll be very happy to share what extra detail it goes into. I have no clue how it will look or what it will include just yet, but I'll be sure to update.

I was diagnosed with Asperger's syndrome. They told me it's difficult to diagnose in females because they're usually better at learning socially.
While I was being diagnosed I read up online about what is it and saw that in the USA they have taken away the label Asperger's, so when I said that during the diagnosis, they told me it's only in the USA they don't class Asperger's as a disorder in its own right, but the rest of the world still go by the official WHO classification

I wasn't diagnosed at any Level. They just told me I have Asperger's syndrome.

Thank you for sharing your account.

I was reading through the whole thread on the day of your diagnosis. It was a useful insight on how the process worked in your case and also an illustration of the value in preparation. I have no doubt your homework and the information files will have made things very much easier for your GP should another patient approach as an adult seeking a referral for Diagnosis.

I also found it personally helpful. It gave me a prod to consider taking a strong suspicion towards seeking a diagnosis, and I spent some useful times going through making timelines of how my suspicions came about and timelines through my life to spot where various blind spots and traits became apparent both strengths as well as weakness which would all be necessary in any information folder put together to help a GP in making a judgement on whether to refer or not.

It all proved very useful to keep my thinking clear and a sense of proportion

been referred by my GP now. spoken to the neuropsychologist, she is sending me some paperwork to complete and then she will call me with a date for my assessment.