UK advice needed -- taking the first step with my doctor

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I am a 52 year old woman, of the generation that went largely undiagnosed, and after years of putting this off, I've decided to approach my GP to inquire about being referred to the specialists who can evaluate me for possible autism spectrum disorder. Or whatever else comes up. I just have to know for sure what's going on.

It's a big, big step for me, because I've spent my entire life knowing I struggle and don't fit, yet simply having to get on with life as best I could.

I've been afraid of getting formally evaluated because even though finally knowing, either way, would be a massive relief, I'm new to all this and I'm afraid of the doors a diagnosis may close rather than open. I don't want anything to change. I want to be able to do all the things I already do, have car insurance without anything affecting it....I just have so many fears. I don't want anything to change, I just want to know for my own peace of mind and to be in a stronger position regarding knowing instead of not knowing why I am the way I am.

So, finally to my question:

Is anyone out there, who is in England specifically, a person who was diagnosed as an adult?

What was your first step? Did you put your concerns to your GP first?

If so, did you have to prepare a list of reasons why you felt that an evaluation was justified? I've read about people compiling a written list of specific incidences in their childhood and on through their life, which illustrate something that made them suspect they may be on the autism spectrum.

Should I make a list like this, in order to "make my case" for why an evaluation may be worthwhile, or did you find it was just a question of asking your doctor, and then he or she referred you to the proper specialists?

An extra factor to all this is that I have zero family members to ultimately attend meetings with specialists. I know that part of evaluation of an adult usually included speaking to parents if they are still alive, or at least siblings and other family members. I have no one. My parents have both long since passed on, and I'm estranged from my siblings. I would have nobody to bring with me if the day should come that they want to ask family about my childhood.

All I do have are my own memories (vivid ones), and I have also kept a diary since the age of 11. I'm assuming a specialist in autism spectrum disorders could probably get some kind of handle on my younger self by at least being able to look through these diaries and read about my special concerns, issues, interests, challenges, etc.

It's not great but it's all I have to give someone a picture of my earlier, developing self.

Do I have no chance of getting to see specialists, since I have no family members to describe my childhood, and there's only me to tell them what I remember about myself?

One more question:
How long does the process take, in England, once you get the ball rolling? I am in East London, so I'm assuming there are plenty of specialists trained in evaluation of adults in the whole of the London region.

I have read about the NHS taking two years to put an adult through adult diagnosis (or not) of autism. I ask just so that I know what I'm in for, as I get a lot of anxiety when I can't know what's ahead in an endeavour like this.

Thanks to any UK adults who went through this as adults. I'm just so scared. I want to do this but I have so many worries and I have no idea what I'll be facing.

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From East London

I was diagnosed at 26 in 2012 after watching a documentary on tv and thought oh my god that's me.

After about a week i finally went to see my GP and i did take a list with me. Just random things i thought might help.

He didn't seem to care. I said i think i might have autism and he said ok i will get you a appointment with a specialist and that was it.

For me the process was quite quick. I got a letter about 2 weeks later from a hospital not to far from me with a appointment.

I went along on my own. Saw a woman and she just asked me loads and loads of questions about me and my life etc. Probably there about 45 minutes.

Then went back about 1 week later and done the same thing with a different person and had to do a lil questionnaire.

Then was told when i come back for the 3rd time to bring someone with me that knows me really well. Was told it doesn't have to be family just someone that would be helpful answering questions about you and stuff.

Then about 2 weeks later went back with my mum and saw a different person and he had read the notes from the other 2 and didn't really ask my mum much just asked a few more questions and then said yes i would say you have autism and explained it.

My mum then asked him some questions and that was pretty much it.

I went back about 2 months later for a check up and chat. He then took me to meet a woman who worked there who helps people with work and benefits and things and she helped me apply for a benefit [because i have trouble staying in work] which only lasted a month then i got cut off.

I went back about 3 months later and he said there was really nothing else they could do for me at this time so they would sign me out for a year and then send me a appointment through in about a year but if during that period i needed to see someone i could phone up.

I phoned up about 6 months later when i was going through a bad patch and was told my doctor was on holiday and i couldn't see anyone else, so they took my details and said when he gets back we will be in touch with a appointment and i am still waiting to hear back from them.

Good luck

If you have any more questions feel free to message me. You might get sent to the same place i did.

DanDaMan, thank you very much indeed for your reply; this is really helpful to have it outlined to me what your experience was like.

I think I have a friend, a mother of two whom I help out, who can come along and tell them more about me. She happens to be even more convinced than I am that I'm on the spectrum, lol, so, they might find her information interesting.

Thank you again for your help. I will PM you about where they sent you; it will put my mind at ease to possibly even know where I might be expected to travel to and get a handle on that journey ahead of time. It may not turn out to be the same place but in case it is, it would be nice to know.

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I am not diagnosed yet, but I am an adult currently living and working in the UK (though not a British), and I just saw my GP this week for that precise purpose. It went well and I am being referred. I can at least tell you how I got there and share the information I gathered




I only realized I probably have an ASD a few weeks ago. I have been undergoing counselling for a few months, so the first person I talked to is my therapist. At that moment I had became quite obsessed with AS, and I put forward two documents I had written. The first isthe diagnosis criteria for Asperger's Syndrome in the DSM-IV manual, with some comments on how I thought various items related to me ; it took about 2 pages. The second is a much more detailed account of all of the aspects of my life and past history I found related to autism (11 pages). We discussed things and at the next session she had read everything and advised me to seek assessment if I thought it could help me. I then made an appointment with my GP. In the meanwhile the only two people I spoke to about this are my girlfriend, and a friend who is a doctor (not a psychiatrist, but in my opinion she is a very good doctor, and also an insanely smart person).



As I mentioned I wrote two documents. The big one was mostly to structure my own thoughts on the topics and to show the members of this forum ; I ended up giving it to my therapist but it was not the original goal. The small one I wrote specifically to show medical professionals. I wanted to print it and to show it to my GP, but I couldn't print it because the print shop I wanted to go was unexpectedly closed (it caused me much anxiety). But finally since it is an electronic document I could access it through my phone and just used it as notes when speaking with my doctor.

I strongly advise you to read and follow the procedure and advice highlighted here :
http://www.autism.org.uk/about-autism/a ... nosis.aspx

You have to "make your case" but it is not a formal thing. I guess it depends on your doctor, but he is not a mental health specialist so if you did yosomesomeur research on autism it is likely that you actually know more on the topic than he does. According to both the previous web page and to what my GP told me, what they need is :
- Some information about why you think you may have Aspergers or an ASD. Compiling a list of occurences is probably a good idea.
- To be sure that having a diagnosis will actually be helpful. My GP was concerned about that, he asked me if I wanted to live with that label. I explained him that for me, that "label" could explain many things that didn't make much sense otherwise despite years of therapy and self-analysis, and that merely reading self-help books for autistic people had already begun to help me.



I am wondering about the same thing. My parents are well and alive but my relationship with them is sometimes problematic, and they don't live in the UK though they sometimes come. Getting them to an assessment would be possible but complicated and slightly unpleasant. I know it depends on the diagnosis tool used by the specialist ; maybe some techniques don't require the parents.

Anyway this is not something I discussed with my GP and I don't think he is aware of those details. It did not prevent me from getting referred. I'll see what the specialist I see will tell me. Your diary will surely be useful anyway ; I would love having such a document for myself.




I have read the same stories, but my GP told me it will be much quicker. He told me to expect around 6 weeks of waiting before seeing something, and that the complete assessment process could take up to a few months. I also live in London, but in the western part. I suppose this depends a lot on where you are.




I hope I have been useful even if I am not assessed yet If you haven't done it yet I advise you to read the web site of the National Autistic Society, they have a good amount of accurate information about autism and Asperger's in the UK. They also have a help line ; if you don't mind the phone call you can probably ask them about any specific question you have.

Thank you ouroborosUK for that great post also -- this is really reassuring and helpful to me. Just to get some idea of what it's all going to be like. No worries that you are still in process; it's still helpful that you can tell me what it was like to bring the whole question to your doctor at the start.

I too am having the experience of finding that books about Asperger's/HFA have already been helpful to me. I will check out your link to the page about adult diagnosis.

Thanks so much for taking the time to reply, both of you.

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Good luck with this (and I do not mean that in a sarcastic way). I am another one who has come to strongly suspect I have AS after I started researching it following my son's diagnosis in November.

I know that this may not be an option for you but I made the decision to go private as I simply cannot wait for up to 6-12 months to get the answers I need. Ever since I suspected I have been researching like mad to the point it has become an obsession -reading books, internet pages, writing detailed notes on myself.

I am currently in touch with someone in Woking, Surrey who has a lot of experience of assessing people with/for ASD, especially women. At the moment I am panicking and anxious is she does give me the diagnosis and panicking even more if she doesn't as I then I will be left with all the questions but no answer.

Hope you don't have to fight too hard for your referral

Falcor, thank you so much, and no worries, I took your wishes of good luck in earnest (another Aspie trait, hahahah)!

I have wondered about going private so that there isn't as severe a wait -- my only hesitation is if I should ever have to avail myself of services for helping those on the spectrum. I must emphasise that it's not that I plan to have to do that, as I have been independent all my life and have every intention of remaining so. But I have cracked under the strain at times lately, and if it should ever be that I need any form of government assistance even if only for a while, do they accept privately gained diagnoses as opposed to those of the NHS?

Thank you again so much for this; it's reassuring to hear of others' experiences. I really hope things go well for you and whichever way your diagnosis goes, my very best wishes for whatever happens after that.

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I have come across this same info as well and it was one of the first things I asked her in my initial email. She assured that that any diagnosis she may make is recognised by the NHS (she is a registered clinical psychologist).

Again, like you I had to decide why I wanted the assessment and my main reason is for peace of mind but also so that I can approach Occupation Health where I work as many of the traits I struggle with have affected me mostly in the workplace. Like you I do not feel the need to access NHS support services at the moment but I know this could well change.

Quick response as I'm off to bed....I'm female, about 40, realised I was on the spectrum and got myself diagnosed through the NHS a few months ago.

* NHS diagnoses are preferable if you want to use the diagnosis to access services. Sadly sometimes it might be felt that you've 'paid to get' a private diagnosis.

* Make sure you are seen by someone experienced at assessing adult women on the spectrum. You might also want someone with experience of differential diagnosis mental health vs. ASD (you mentioned cracking under the strain). I'd wrongly been given a serious mental health diagnosis when my problems are indirect effects of ASD.

* I agree with advice given about going through your GP and writing it down. Perhaps send the letter in advance of your appointment and book a double/extended appointment if that's possible at your surgery. GPs nationally are now more aware of ASD, but unfortunately that doesn't mean that yours definately will be.

* You have a right to access diagnostic services, if there are grounds for thinking you might be on the spectrum. So don't take no for an answer.

* In my case, once my GP and I had finally found the right referral pathway, I got the assessment appointment booked for a month later. I was diagnosed using DISCO but also first exchanged emails with the assessor. The main assessment appointment was 3 hrs long and I chose to do it as 1 session. We then spent a further hour in a second session finalising this, before moving on to discussing support.

* Yes, they probably really would like a corroborating person (I know when I investigated doing it privately, one likely assessor wouldn't do it without), especially if you don't present as obviously autistic (which women like me with mild Asperger's often don't). I didn't have someone suitable who'd known me as a young person, but got input from someone who'd known me from age 14 and the assessor was very happy to talk to them on the phone. So it sounds like that between your diaries and friend you've got that base covered.

* It's given me a lot of piece of mind being told by an expert that I'm on the spectrum and that's why I have certain difficulties.

I hope it all goes smoothly for you and you get the answer you want.

Thank you Pandanus for your reply; this is all helpful.

I worry about the fact that the friend I have in mind has only known me for a couple of years, and so she can only corroborate my behaviour as an adult. It's this whole "no family/friends from youth" thing that has been one of the reasons why I hesitate, as essentially an assessor only has "my word for it" regarding early life behaviour and experiences. The diary writings may shed some light and give enough of an impression to assess by, but also may not!

But one thing the diaries can do, also, is that I can actually provide dates and descriptions of what I have believed to be incidents of meltdowns, shutdowns, social issues, etc. I'm just concerned that in the absence of any actual human beings for the assessors to speak to besides myself, that this will be "enough"...

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Hi BirdInFlight,

I'm 46 and live in Surrey. I had my assessment on 20th December just gone and was diagnosed on the NHS with an Autistic Spectrum Disorder.

My first step to diagnosis was to talk to a doctor at my Health Centre. I took with me a letter I had written to support my case, a completed copy of the AQ questionnaire I had printed out and a letter from my girlfriend which gave her thoughts on the matter. The doctor had no problem referring me.

It took me just under a year to be seen. I believe that my wait was a bit longer than normal because the service was relocating. It turns out that it has relocated to within 10 minutes walk of my house!

On my assessment day I was accompanied only by my girlfriend. My father has passed on and I have no siblings. I didn't want to get my mother involved in the diagnosis so I wasn't accompanied by any one who knew me as a child (I have only known my girlfriend for 5 years).

I was sent a bunch of questionnaires to fill in and bring to the assessment and on the day I was seen by a Speech & Language Therapist, a Psychologist and finally by 2 consultants together. During the latter session I was told that I had an Autistic Spectrum Disorder and that I would be sent a report detailing where I am on the spectrum when all of the test results have been combined. I was told that this would take a few weeks and I am still waiting on this. A place on a "newly diagnosed" course was mentioned.

It therefore seems as though you can get a diagnosis without a parent or sibling present so I hope that you get satisfaction - good luck

Side note: Although I was seen by Surrey and Borders Partnership, I work for an NHS Trust that covers Hounslow and they run an adult ASD service that you can self refer to so it might be worth checking to see if your local one has something similar.

I'm in Central London and was referred by my GP for an Asperger's assessment in November 2012. I initially self-diagnosed and brought a list of my AS symptoms to the GP, who first listened to me talk about the symptoms and then kept the list. In the summer, I received a letter from the Asperger's/autism centre where I had been referred saying that my GP's referral letter first went to a wrong institution (something to do with attention deficit disorders), but they had it now and would use the original referral date to speed up the process.

I knew my assessment wasn't going to happen immediately, but I've been waiting for well over a year now and am very disappointed with the NHS. Luckily, in the meantime I was able to get an assessment in my home country by a psychologist who specialises in AS in adult women. I won't bother with the NHS assessment now.

Thanks Falloy and SDB, these are both really helpful and interesting to know.

SDB, I'm sorry to hear about how difficult your dealings with the NHS process has been. This is partly what I dread, that the NHS are going to be problematic to use, either because of waiting times, or getting referred to someone not as experienced with adult women (who can present differently or who have learned as I have to mask well in order to function).

I'm glad to hear all sides of the story with the NHS as it seems even the area one is in can make for a different experience with them.

Thanks for telling me what you have found.

Thanks also for reminding me about print-outs of online tests; that is certainly "grist for the mill" in justifying why investigation may not be worthless. I'm hoping I won't get a fight from my doctor, but I'm just going to arm myself with as much "evidence" as possible in case the doctor is in a cost-cutting mood and doesn't want to refer someone for a fund-draining process that they don't think is worth the assessment. I'm sure it won't be that bad but you never know.

Dear BirdInFlight, I'll keep my fingers crossed that your assessment process goes smoothly. NHS seems to be a lottery, really. Good luck!

Hi

Good luck with all this. I wrote an account of my experience with the NHS in Scotland, which you might find useful.
http://www.wrongplanet.net/postt154420.html

Thanks for your best wishes, SDB, I'm crossing my fingers too.

Niall, thank you for the link to your experiences -- I have just read the entire thread and it proved very interesting, informative and helpful.

As SDB said, the NHS does seem to be a lottery which all hangs on geographic location and the services or specialists available there. I congratulate you in keeping on with your pursuit of your diagnosis and finally receiving confirmation! I can already imagine how much that must validate one's own suspicions and gathered evidence, and the relief of the explanation for a lot of difficulties throughout one's life. I'm hoping for the same sense of relief and explanation of myself, if of course it is what I'm diagnosed with.

My latest update is that I contacted a specialist whose name I found on the National Autistic Society website; I was surprised to find someone very local to me, just a couple of miles away in a location I already frequent. He is private and does adult diagnosis using DISCO among other things.

I enquired about fees, which he told me what they were per hour, but he suggested to me that since I am low income (I work self employed but presently don't have a ton of hours and an income to boast about, exactly!) he suggested I go the NHS route by seeing my GP for a referral to an NHS specialist, but he said he'd be happy to give me an "initial consultation."

I'm not sure what that would achieve if I'm still meant to just go NHS instead of continuing on with him for a fee, but I just wrote back thanking him for the information and that was that. I am planning a time now to book an appointment with my GP.

I will have to give some time to writing out a list of anything relevant from childhood, and scanning and printing relevant diary entries from my younger years to illustrate childhood issues.

I feel a bit overwhelmed as I already have a few things "on my plate" this month -- I have to file my tax return, go to the CAB for advice about something -- it all feels like a bit much, as I seem to always have this invisible border checkpoint beyond which, if there are too many things I have to deal with, I go into shutdown and depression because I feel overwhelmed. I have dealt with a lot of things in my life very capably but it seems I can only get through them unscathed as long as it was just one thing at a time!

But I know I have to stop putting this off any longer, so.....


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