On the road to a diagnosis - UK
I wanted to share this because it's the kind of information I would've liked to have had in September last year, and I think it would be helpful to hear other people's stories about the road to diagnosis - or why they don't want to take that road.
27th Aug 2011 - I watched a film that touched me deeply and lead me on a journey of information gathering and self-evaluation. That film was "Temple Grandin".
The more I investigated, the more strongly I suspected that I had Asperger's. I decided I wanted confirmation. I found out the following from the UK Autism website:
The UK government passed some legislation at the end of 2010. It states that all adults who suspect they have an Autistic Spectrum Disorder are to be offered a clear route for a diagnosis regardless of their IQ.
You should be able to get a referral to see an expert via your GP. When you see your GP you should not try to talk to them about anything other than getting a referral for a diagnosis of Asperger’s during that appointment, because general knowledge about the condition is not good and you may not be taken seriously otherwise.
15th Sept - I saw a Dr with a view to getting a referral for a diagnosis of Asperger's. It was a very unpleasant meeting. I asked to be copied-in to any correspondence.
25th Sept - I received a copy of the refferal letter. It was suprisingly decent given how badly I thought the appt had gone.
29th Sept - I received a copy of the response letter. Here is an extract from it
"Mental Health svs within the Trust do not offer assessments for possible Asperger's Syndrome. Contact OATS panel re referral to outside agency."
30th Sept - I booked an appt with a different Dr at my surgery to discuss the letter.
8th Oct - I received a letter from the original Dr asking me to book a double appointment to fill in the OATs funding request form. This was also the day of the appt with my new Dr.
By this time I had found various conversations with people about Asperger's so distressing that I decided to write a self advocacy letter which I could hand to people as necessary to make sure that I could get my message across if I got too distressed to discuss it calmly. It was entitled:
"Asperger’s Syndrome - why I feel a professional diagnosis is essential for me" and it provided details about daily difficulties I experienced in my current life and work, and my relevant history up until that point.
I was especially interested in being forearmed before talking to a new Dr.
The new Dr was much better. He read my long letter very quickly (he's a speed reader apparently) and seemed satisfied with it. He asked me to book a double appointment so we could fill in the OATS funding request form.
13th Oct - I had my double appointment. The Dr was running late and couldn't see me for the whole appt. As it happens he agreed with me that the letter I had written pretty much answered all of the questions on the form. We agreed to enclose a copy of my letter with the form. I was very happy with this outcome - filling in forms gives me the heebie-jeebies!
7th Jan 2012 - I finally received a response! I was scared to open the letter in case it was a rejection of some sort or it was overly complicated in any way. I opened it. The first thing I saw was a letter confirming I had an appointment. Heartilly calmed I sat down to read the rest.
The next thing I saw was the appointment card, and it was so touching it brought tears to my eyes. It had all the usual details on it (time, contact details etc) but it also had a picture of the outside of the building and of the face of the person I am going to see. It's hard to express in words how thoughtful those extra details are. To do so I would have to convey the years I've spent struggling to get on with things in a world where neither myself nor the people around me have ever fully appreciated just how painful I find relatively simple seeming things - like finding a building for the first time.
This even softened the blow of the 3 forms I had to fill in - all of them taking the form of "how do you feel in 'x' situation" - my least favourite kind!!! I was so heartened by the appt card I only procrastinted for 10 minutes before taking the forms back out of the envelope and filling them in.
My appt is for the 26th in the ASSIST Godalming Resource Centre. Let's see where we go from here.
x
TP
Hi Molly, thank you for your comment.
One of my least favourite things about going to work is anticipating the journey. It's only a 15 minute drive if traffic is reasonable, I always know where I am going to park and I actually quite like driving, but the anticipation does my head in.
Going to pick my son up from school is the worst part of my day. I love my son, but the variables drive me crazy.
And on really bad days I literally can't plan my way out of bed. Not had any of those for a while (not on days where I've had to get out of bed anyway).
I'm still on a journey with all of this. I guess the main benefit I've got from it so far is discovering a whole world of women who are just like me. Women for whom the world is a lot harder to live in then they generally let on.
I'm a sharer by nature, so I will be looking to help educate the people around me as I learn stuff. That's quite hard at the moment because most of the people in my life can't see my differences. They see me walking and talking but they can't see what it costs me to keep doing that until those costs build up and I just stop functioning for a while - and then it looks like I've just had a weird collapse for no reason!
Before I discovered Asperger's I really didn't know what on earth was up with me. Now I think I do, and that's something. If I get the diagnosis, the people around me are going to hear about it and then some! Not so I have an excuse to hide away, but so I can make the world fit me a bit better so that I don't get to the point where all I want to do is hide.
I too read that Asperger's manifests differently in women than in men, so I decided to get a book that would give me a good idea of what Apergic women are like. I would very much recommend that you read the book "Aspergirls" by Rudy Simone. It may also be a good book to share with your family.
I would also very much recommend writing down how you feel Asperger's affects you. I have revised my letter a few times as new thoughts occur to me. It helps me placemark what Asperger's means to me. Which is important, because until I have an official diagnosis I have to carry it all by myself, and it's too easy to forget things or get lost in different ways of seeing things and lose confidence that there is a reason why I find seemingly normal things harder than the people around me!
Funnily enough, reminding myself of this stuff makes me feel less like pushing the people in my life away - and that has to be a good thing.
Good luck with your journey.
x
it so nice to communicate with someone who is seeing the world from a similar perspective. so much of what you say i could copy and paste and apply to myself.
it is the anticipation, exactly. usually, once i manage to actually get to doing whatever it is i need to do, i am amazed at how easy it is, but thinking about it before hand causes so much anxiety.
i really liked what you said about it being harder to get by in the world than many of us let on. that is one of the hardest things. and while figuring out that my brain was actually working differently than others explained so many things in my life, nobody else can see it and frankly, they don't want to hear about it.
that's not completely true. my dad has been interested and supportive. i think he has wondered why life has been so hard from me.
i just read Aspergirls and really enjoyed it. i think i will pass it around.
do you find yourself 'diagnosing' others around you? i think one of my brothers is aspergian, i actually diagnosed him before myself. my own children each have some of the attributes, my son-in-law, several of my friends - i see it in literary characters (not AS specific characters), we are not alone - we just don't connect very well.
nice connecting, have a great day!
Hi Molly,
There is something amazing about connecting with people who seem to see the world through similar eyes. I feel I've spent most of my life trying to fit in, but learning about Asperger's is gradually giving me more of a heads-up as to which bits of me are just me, and need to be accepted rather than changed. If it was possible for me to change so that I could finally fit in with what I think of as the normal world, it would probably have happened by now :).
I have definitely found myself diagnosing people.
I spotted myself first because I was turned onto the whole thing by watching Temple Grandin. But as I started to read up about Asperger's it quickly became apparent that my 6 year old son should probably get tested.
I was surprised when talking to my dad about it for the first time that he was very late to start talking and so seemingly "out of phase" with the world that his dad burned him with a cigarette at age 5 to try to wake him up! In fact my dad said that he only really felt he woke up when he accidently received a couple of large electric shocks around the age of 6. That description seems closer to Autism than Asperger's.
When my dad revealed this I realised it put some of the stories he has always told about his mum into a more recognisable light. He has always complained that she was cold and not very motherly. He's also said she worked for the council most of her life and was presented with a special clock when she retired because she'd never been late the entire time she'd worked there. I remember her from when I was little, she was not warm with children. She didn't seem to be unkind, just very matter-of-fact and a bit nervous and reserved around really short people :).
I shared with my dad that his mum had many of the traits that might indicate a women with Asperger's, and I think it may actually have helped relieve him of some of the bitterness he's been carrying around with him.
Several women I have met relatively recently (in the last year or so) also seem to me to have strong Aspie attributes - and interestingly for all the talk of Aspies being socially inept I find myself drawn to these women because of their Aspie attributes not in spite of them. I find them more comfortable to be around and to talk with than most regular seeming people - probably because I don't feel I have to reign in my conversation to things that'll make me sound normal. I feel I can be far more free in talking about the things which actually interest me, and the conversation just seems to flow better.
I have also enjoyed the game of spot-the-Aspergian whilst watching films and TV progs. Here's a little list of fictional ladies whom I think might benefit from reading Aspergirls:
Lisa Simpson - The Simpsons
Ellie Arroway - Contact (the film - I have loved this film for years!)
Amy Farrah Fowler and Leonard's mum - The Big Bang Theory
Hermione Granger - Harry Potter
Can't think of any more just now, but I bet there are loads.
It's very nice writing to you. Very relaxed. On that note, I have another book recommendation. If you've not yet got it, check out "Women from another planet?".
The book starts with print-outs of many of the email conversations which preceded the idea for the book. I found that section pretty unreadable, but very Aspie (must include all the details!). I will probably go back and give it another go at some point...
Most of the book contains short vignettes from women with Aspergers. The stories are mesmerising. I wanted more! I definitely warmed to those women and wished I could meet them and talk with them! Maybe one day :)
Well, I could write, read-back and revise this post for hours more (it's just something I love to do) but It's really late and I know I'm going to be grouchy tomorrow as it is...
Good night!
Talking about anticipation being the worst bit...
The diagnosis meeting is this Thursday and I am feeling epically awful.
It’s at 6pm. Technically I could easily make it after work, but there’s no way I’m going to work that day. I’m not sure how I’m going to stick it out at work the next couple of days as it is.
I have been struggling with my daily anxiety levels for some time now. Long periods of stress and anxiety have really drained my reserves so I am now tired much of the time. The subsequent combination of tiredness and anxiety means that I basically feel like I’ve been scooped out from the inside.
I’m worn out, body and mind, and that leaves the door wide open for depression.
All this means it is very difficult not to get carried away with stupid thoughts just now.
Essentially, any thought that has at its end that the world would be a better place without you is a stupid thought. Any logic that leads there is not really logic – it just the kind of thought pattern you get into when stress chemicals are overwhelming your system.
I know this.
I’ve tried to make a rule for myself that if I manage to get myself into a truly wretched train of thought that I will write said thought down and break it into logical chunks before I let myself worry about it another second.
This has worked very well a work. I made myself a spreadsheet in excel and I go there and fill it in whenever I sense I’m getting a bit crazy. This is the kind of thing that NLP encourages you to do (Neuro-linguistic programming). Basically, don’t sit and stew in your thoughts and think that if your first impulse is to worry then that must be correct. Instead, write down your thoughts and break them apart logically. Things are never as hopeless as they first seem and there are always options.
It’s harder to do out of the office. I think I may need to print myself off a little chart and carry it round with me to fill out.
Just now, writing this post is very helpful.
I think I love this website. Here is a place where I can be honest outside of my own head. Finding an outlet to share this stuff is truly life-affirming.
I’m on facebook, but that really isn’t an appropriate forum to write about severe stress related mental health issues as you’re experiencing them.
And as understanding as my partner is, sometimes it’s too much to deal with the stimulation of speaking to someone directly when you’re trying to sort this stuff out. I’m much more fluent writing to myself than trying to speak just now.
This way I get to lay it out my thoughts and review them, and give myself a good pep talk besides. And also perhaps offer some relief to others who struggle in similar ways to me. It’s certainly a great comfort to me to read about other people’s experiences.
I’m hoping that I will feel much better after the meeting on Thursday. If not, then it’ll be time to go and see a Dr. It’s great that that option is available to me.
In the meantime, I’ll get on with trying to get enough sleep, putting reasonable food into my body, and trying not to get lost in stupid thoughts.
I started writing a song to myself today. I had to drive for an hour and a half and I needed something to keep me going as I was struggling to push aside negative thoughts with a tired mind. It went like this:
I’m gonna find me a rainbow.
I’m going looking for the sun.
Oh honey, I may not be able
to stop the rain coming down,
but I can go looking for the sun.
I’m gonna find me some silver,
edging round a cloud.
I may not be sailing under
blue, blue skies
but my head won’t be hanging down
It’s not Shakespeare, or even Elbow, but I sang it over and over and the time melted by in a reasonably mellow way.
xTP
my mind has been waking me up early in the morning just to pester me about stuff that i cannot change, or don't want to deal with or is bothersome in one way or another.
having something so major coming up would definitely amp up the anxiety vibe for me too, but try to remember all those things that you have been scared to do that have turned out great or at least fine, almost always way easier than anticipated. this meeting with be awesome.
i agree with you about this being a sweet place to share thoughts, worries, anxieties, triumphs and such. this is only the second forum i have ever posted in and the only one i have posted more than once. i am ridiculously shy. but this feels safe.
depression stalks all winter, i am super susceptible to dreary and have to pay attention and eat right to keep my head above the dark waters. i write to help sort things out, to work through a thought, to analyze my prespective. i journal but not regularly and not to record my life, i journal to see what is in my mind.
thank you for your posts, rest assured that they are helpful to others as well. find yourself some peace, keeping singing your song and have a great meeting on thursday.
i found this article last night about fear and anxiety, http://opinionator.blogs.nytimes.com/2012/01/22/anatomy-of-fear/. i really enjoyed the article and it also ends with a song by the author's band, the Amygdaloids, i love it.
have a peaceful day :)
Hi Molly,
Thank you for your posts.
What pesky brains we have! I will keep trying to give mine enough leash to express itself without giving it so much that it runs around in excited circles and strangles itself! It's a balancing act every day just now. Hopefully I'll get better at it in time - all this diagnosis malarky should help because it'll allow me to define what direction I should take my efforts in.
I am an avid journal writer, and when it comes to what I write it sounds like I take much the same attitude as you. My journals are a place to get my thoughts out and see where they want to go. I have stacks of them now. They're definitely useful if my brain won't let me sleep. Sometimes I just use them to make a list of all the stuff crowding my head so I can let go of it for a bit.
I am feeling much calmer now that I've had the meeting. And you're right, it went fine :). Thank you for your well wishes.
Interesting article you posted. I thought the way the author defined fear as opposed to anxiety was potentially very useful. The way I understood it he was saying that fear is a response to an actual stimulus, whereas anxiety is the brain tripping over pathways created by previous fear responses.
I can see that when you are thinking about a future event your brain probably Googles it's memory banks for any info that might be useful. Fear is important to survival so any results with the "fear" tag will appear high up in your search and can potentially really colour your thinking. I guess the trick is to use any info with the "fear" tag to take sensible precautions rather than letting it make you so anxious that you can't function.
I like it.
Crazy song at the end! Don't hear many pop songs by mental health professionals.
Hope all is well with you. Winter days can be very beautiful, but it is much easier to be sunny when you can feel the sun. Wouldn't it be easier if we were allowed to hibernate...
x
TP
The Diagnosis Appointment - 26th Jan 2012
I saw my sister after the appointment. She said to me, remember, even if it had gone really badly, the point is you did it. You identified something you felt you needed and you made it happen. Well done you.
It was a perspective I’d lost. I was grateful to be reminded of it.
By that point I was very tired and a bit spaced out. My body was relaxing from weeks of pent-up tension, and my system was being flooded with all the toxins my muscles had been holding onto. I’m glad my partner was waiting for me when I got out of the meeting otherwise I would have found it quite difficult to keep it together for the drive home.
The meeting itself went pretty well.
The ASSIST office in Godalming occupies the top floor of the building it’s in, and is a smallish converted attic with a low ceiling. It was all a little careworn but had a friendly feel to it. I was directed to go inside a room and wait a little while. The room had one or two computers and several lockers – clearly it’s used for a lot of things.
The woman I was there to meet turned out to be calm, professional and friendly.
I started by asking her if she would move her chair so that she wasn’t sitting directly under the strip light in the middle of the room (so that I wouldn’t be facing into it), and she was happy to oblige.
From what she said at the beginning it was clear that my assessor had a lot of experience dealing with people on the Autism Spectrum but I forgot to ask her how much experience she’d had with Aspergic adult females with a normal IQ.
Women are generally better at using learned behaviour to cloak their differences then men are and are therefore less likely to be successfully diagnosed when it comes to a relatively mild Autistic Spectrum disorder such as Asperger’s. It is therefore important to me that my assessor should have some experience in this area so that I can feel confident that I can accept her diagnosis.
I may well send an email and ask. It’s as well to know, and I’m sure she wouldn’t mind.
I told her at the outset how moved I was by the fact that the appointment card had a picture of the building on it – just mentioning this to people brings tears to my eyes, and this time was no exception. It shows such consideration and understanding. And it made a real difference to me.
When she told me I didn’t have to look her in the eye if it made me uncomfortable I blubbed like a child. Just writing about it now has made my eyes tear-up and my face crumple. I would never have expected that comment to get to me. But the fact is, no one has ever said it to me before.
I think it touched the place in me which has spent a lifetime trying to read people in order to give them what they want whilst trying not to give them more than I can afford to give. What she said spoke to that place. It said, it’s ok, you don’t have to play that game here.
Tears done with, we spent an hour with her asking questions and me answering them. I got lost whilst going off on a few tangents but she was very patient.
I felt oddly conscious about the eye contact thing throughout the interview.
I told the assessor that I struggle with eye contact because I find it too intimate. I get too much information from people’s eyes. It swamps me. And I feel very vulnerable, like I’m giving too much away. But I still make the effort, because the information is useful, and it’s a very lonely world if you don’t ever look people in the eyes.
I did catch her eye from time to time, but I was very self-conscious about it and obsessed a bit about what affect doing so would have on my potential diagnosis.
I spent most of the time staring at various patterns in the room. There were little white flecks on the carpet, they were widely spaced in a pattern that was almost a connect-the-dots “R”. It was comforting to stare at them, my mind gently trying to resolve the pattern into a shape.
I don’t know what the result will be. I was concerned beforehand that the diagnosis would provide a sharp yes or no, and that as I am an intelligent adult woman who can act “normal” for a time if she wishes, and as I experienced a very extreme childhood and therefore might be expected to be a bit unconventional, that I might get a falsely negative result.
As it turns out, If my assessor is certain of a diagnosis then I will get a yes or no. If my case is not so clear cut then I will get referred for a more in-depth (and apparently significantly more expensive to the tax payer) evaluation.
Either way, some advice for how to proceed will be offered.
This is good to know – I guess I might suggest to ASSIST that they make this a little clearer on the otherwise very helpful “What you should expect during an ASSIST Screening appointment” document that was included in my appointment pack.
Some info about local parking would also not go amiss…
I have between 4 to 6 weeks to wait for the results of my assessment. I should then receive a “Screening Report” which will summarise what was talked about during my appointment, and also let me know if they think I have Asperger’s or not.
If it’s a no I will not be able to challenge the diagnosis unless I can provide more evidence.
So I am currently dealing with a significant amount of uncertainty, but at least there’s nothing I need to do!
Whether it’s a yes or no I will report back here. Either way I’m pretty sure my experience will be useful for others.
At the end of the assessment I told my assessor about an article I had come across in New Scientist (15 October 2011) entitled “Your clever body” which, to my mind, may shed significant light into the difficulties that mildly autistic people have with making and maintaining friendships.
I hope she finds it as interesting as I did.
I am in the processing of writing a post to share the contents of that article on this website.
To conclude, I have reviewed what was said in the interview rather a lot in my mind. I find it quite a challenge not to re-live things over and over when they affect me strongly. It’s a testament to the skills of the assessor that I can find nothing in my many reviews to worry too much about.
I would like to say that I am very grateful for the people who have dedicated themselves to understanding Autism in all its forms and who continue to work to improve the lives of people with the condition.
And I am also grateful to all the brave people with the condition who have come before me and who, by persistently sharing their unconventional view of the world, have made the pathway to understanding myself so much easier.
x
TP
I don't work on Fridays. This is something of a relief. I generally stay home. However I always find myself feeling a rising tide of anxiety as the clock ticks past midday and I anticipate going to get my son from school.
Where will I park? Will I find myself in an awkward social situation with the other parents while I wait in line to collect my son? Will he be in a bad mood? Will I? I don't like the whole coming and going process.
I am rather low on nervous energy just now as I have experienced a prolonged period of anxiety recently.
The time was 14:00. I need to leave at 15:00 and I found myself with such a heightened fear response I didn't really know what to do with myself. It's called a panic attack. I needed to do something. So I googled for help!
I found this article. It seems knowledgable and well written, and I think the advise is sound and practical:
http://www.anxietynomore.co.uk/panic_attacks.html
Hope it helps others too.
x
TP
thanks for posting. i have not taken any steps towards getting a diagnosis but while researching aspergers to be a better advocate for my grandson who was diagnosed upon entering the school system, i read an article about girls with aspergers and there i was. my grandson and i have very different personalities so i hadn't really made the connection before reading about how girls tend to present. i have gone back and forth on getting a diagnosis, i don't have insurance or money to spare and i don't know what the actual benefits would be. it would be nice if others in my family would take me seriously when i try to talk about it. i think they see it as an excuse for my life being like it is, for me its an explanation that i have been seeking for along time. the letter idea is a good one, i always lose track of what i want to say and have a hard time explaining - partly because my mind seems to just go blank when i am nervous or socially stressed (which is any time i am around someone i don't know well). i also have that problem of not wanting to go out in the world if i am not completely sure of where i am going - what route i will take, where i will park, who i will have to talk to...and even tho' i usually manage just fine it continues to be really scary to do anything new. i hope all goes well for you and i hope you will keep posting about your journey. thanks again for sharing your experience.