Seeking an AS diagnosis/assessment as an adult? Help? :S

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Hi WP,

Thought i'd finally sign up here and ask since I always end up here when googling and i'm really feeling lost right now.
Feel free to skim as after finishing writing this I realise i've written a lot. :S

Here goes a bit of a life story I guess, so i'm currently seeing a mental health professional for anxiety and depression, both my doctor and him are in full agreement that my anxiety etc. are pretty bad and I need to start some kind of therapy for them, the guy suggested CBT.. now i've done CBT in the past and it hasn't really helped and I feel like it won't help, I feel like.. this may be because I may have undiagnosed aspergers which is where the anxiety etc. stems from and that needs to be addressed first, I remember being super awkward as a child (bit of a know-it-all, top of my class, but didn't understand playing or having friends) but NOT anxious or depressed, that came in high school (about the age of 13) once I started encountering negative responses to my awkward behaviour and that has carried on to this day, i'm currently 25.

Only recently have I started to think seriously about pushing for a diagnosis, AS was something i've had in the back of my mind since I was a teenager and a guy I talked to all the time (older than me and had been diagnosed for a long time) suggested that I had it, I never even knew what it was back then but based on our conversations he said I should maybe look into it, I kinda never did it seriously but then recently i've been talking to a good friend about it (same age as me) as he has also been diagnosed since he was a child and he fully believes I have AS and should push for a diagnosis.. I don't think I would have if it weren't for him (I wonder if it's all in my head, but having other people's opinions helps me see that i'm not just imagining things), it's scary how much we are alike and I feel like he's one of the few people that have ever actually understood me, my habits and my thought processes. Reading about AS in the last few months has really put things into perspective for me, it makes me feel like.. for the first time, I might be able to understand why I am like I am, that something isn't wrong with me, my brain is just differently wired, I feel like thinking of myself with AS I make sense and that is such a good feeling, but then i'm also filled with dread because I feel like.. self-diagnosing is like.. I feel like i'm lying, I feel like.. how can I know? Even though all the signs are there and it would make so much sense to me, I feel like I need someone else to confirm it for me otherwise i'm a fraud.. I can't fully believe it until someone tells me it's true. It's like i'm in limbo.

Anyway. This mental health professional i've been seeing that I was referred to by my doctor (who told me I can't have AS because I have GCSEs even though I struggled immensely to stay in school?? She's generally pretty horrible about mental illnesses in general, ugh) is saying that they want to put me in CBT or something first to try deal with the anxiety before they can even think about getting a diagnosis for AS as he's told me anxiety and AS are often confused.
Funny thing, I took a big folder with all the self diagnosis stuff i've done over the past few months (searched and found a self diagnosis master post on tumblr and i've taken basically every test musingsofanaspie.com lists and all my results have indicated that I likely have AS and should go for a diagnosis, I know that tests like that aren't fact just a guideline but yeah..) and he wouldn't even look at it which upset me, although when I was trying to tell him there was something else I wanted to talk about other than my anxiety he was like "the autism?", but I never even brought it up? He just kinda guessed.. which was weird, he mentioned it was because of my eye contact, i'm generally pretty awful at it so I guess he connected the dots when I said there was something else I wanted to speak about? :/ Idk. Confused me there.

So I thought it was going well but then he asks me "do you take things very literally", I mean, becoming an adult you kind of end up learning a lot of things aren't to be taken literally, it was a problem as child but i've generally figured most things out by now.. Mostly. I still have times where I can't figure it out.
So when said "I guess", he does this little test, which leads me to break down because I feel like i'm not being taken seriously, later I google it, it's called the Sally-Anne test (although reading about it he didn't even do it right as he didn't even ask any control questions and he missed loads out which confused me!) if you're familiar with that.. a theory of mind test meant for children which even 4 out of 20 CHILDREN with ASD get correctly (we're talking like, 10 year olds, from what i've read it's assumed that by teenage years and most certainly adult years most if not all are able to get it correct), but because I answered correctly he was like "hmm interesting, people with AS would have answered incorrectly"..
I feel like i've lost a lot of faith in him after he brought that up in that way and i'm worried that he won't listen to me when I try to show him all the reasons I feel like I need this diagnosis.

It's just really frustrating me right now, I know how I feel, I know my life experiences.. and almost everything i've read about aspergers just resonates with me deeply.. mental health guy tells me "oh but there's no treatment for AS", so I say "I KNOW, I just need to understand myself" I feel like a diagnosis will do more for my anxiety and depression than any other treatment, because I can begin to reevaluate my life and feel like instead of having failed at all attempts of having a normal life i've actually done really well to have fought my problems and pushed myself so hard. It would also be relieving to know that if I go back to work (not in work now related to my problems and i've lost jobs and chances at jobs before because of it) then i'll have a diagnosis to back me up so I can feel less afraid of asking people to make accommodations for me because there are certain things I struggle with.
All of that, really would just be a weight lifted off my shoulders and I feel like then I could begin to deal with life properly and I would happily do CBT for my anxiety then but until then I just feel like i'm trapped because people will only believe me if I have a doctor agree with me.. :/

I feel like CBT now wouldn't be great right now because they're trying to treat something that stems from AS and.. I mean, my anxiety comes a lot from feeling "weird" and people treating me differently because i'm awkward, I try to act what I view as "normal" but it's just not natural to me. Also losing out because there are things I genuinely have so much trouble with (all of which are AS related things it seems) but to everyone else it just looks like i'm stupid because I can't pick things up in the way that other people do.. and that makes me feel horrible.

Feel like it's going to be such a nightmare to get a diagnosis as an adult, I feel like I would have been diagnosed as a child quite easily but my mum has a lot of problems herself.. talking to my brother recently she has apparently revealed to him that she was manic depressive when we were growing up, I wouldn't be surprised if she had some kind of ASD herself as she struggles with a lot of things socially and emotionally although i'm not gonna make any assumptions, I just know the way she is would make it very easy for her to miss if something was off about me as a child.. although i'm going to try talk to her when I can get hold of her and see if I can talk about what she remembers of me as a child.
I know she said I was very quiet and I remember from primary school the teacher googling a list of phobias for me to spell because the words the other kids were spelling were easy for me, my grades were always on top but I had no friends. :/ Not because people didn't want to be my friend, i'd gone to other girls houses when they invited me over to hang out before but I just kind of.. I guess didn't understand it? Along with like, being obsessed with factual information too, which apparently is a thing? I used to love reading books full of science facts and such. Even the dictionary sometimes. Exciting childhood.


Sorry this was a huge wall of rambly text and I don't even know if there are any clear questions I just kind of want someone's opinion on it all? Is there anything I should say to my mental health guy? Is there anything else I can do? Has anyone else had a similar experience? Anyone been through CBT before a diagnosis and had that help? Etc. etc.
I really just need opinions on the situation and would like to hear someone else's thoughts because my head is so all over the place and I don't know how to feel about all this right now and can't come up with a plan of action. Not that I ever can normally I guess. :S

Last edited by F0XES on 09 Mar 2016, 9:29 am, edited 4 times in total.

Also please be gentle. :< It's hard enough for me to post this in a public forum. Freaking out a bit right now.

Also for anyone interested in numbers from some of the better known tests I did while researching, I try to take them when i'm at my least anxious so it doesn't affect my judgement;

AQ I scored 43.

RAADS-R I scored 211.0 overall, all of the values were higher than even the results for those with confirmed ASD though perhaps my anxiety adds to it? :S I'm really surprised at just how much higher than I expected a lot of my scores are..

Aspie Quiz on rdos.net; Your neurodiverse (Aspie) score: 169 of 200
Your neurotypical (non-autistic) score: 36 of 200
You are very likely neurodiverse (Aspie)

(I have links for a bunch of them but can't post as a new user but these two I see in a lot of people's signatures)

Yes, it may be a bit tricky, although not impossible. I got mine the first time I asked but it was after a few months counselling that I paid for myself and that helped somehow. BTW when I was having the counselling I didn't know that I may have Asperger, and it wasn't the counsellor idea unfortunately. But that does show that I in fact have something going on if I decided to spend money to deal with it.
So maybe you should go for this CBT and genuinely try to make it work? Try to relax a bit as well, diagnosis is not everything.

Thank you. I suppose it might be all I can do at the moment.
I'm guess even if the CBT doesn't help anyway at least it proves that i'm trying to do something I suppose? So if that doesn't help I can tell them and then they can maybe try something else.. i've hopefully got another appointment soon so can try talk about it more in depth as most of the appointment was taken up by talking about anxiety before I had enough courage to try asking about AS.

I know diagnosis isn't everything but I feel that it would help me greatly not only with feeling more understanding for myself but for example when I get back into work, seeing as there are things (here at least) that protect you, if you have an issue like AS, against discrimination.. it's hard to work for me already with my anxiety etc. but i've had to leave jobs that I was coping with relatively well due to colleagues constantly misunderstanding me (mostly things not coming out right and facial expressions) and missed so many chances at permanent jobs after temp work because i'm "not picking things up as well as the others" and just general negativity towards me, even though i've tried to say that the way they're explaining things to me just doesn't work. I need to be showed how to do something then I need to do it myself with them watching to make sure that's right, and usually I need a list of things to read instead of verbal instructions when i'm sent off to do things, if I don't get those then i'll generally panic and have to ask repeatedly how to do something. :S


Just feel so afraid of facing it all again without something to protect me, having to feel like everyone thinks i'm an idiot because it looks like I can't grasp something they understand as simple. It upsets me but I feel like it's the only way anyone will actually listen when I say I genuinely need help in situations like that because my mind works differently. I would have never wanted to seek a diagnosis otherwise, to me, if it isn't seriously affecting my life then I don't need a diagnosis.. but I just feel constantly discriminated against and that's what has led me to finally listen to people telling me I should do it. :/

Hi foxes,

Welcome to WP.

Don't freak out about posting, easily said, I stress myself out a lot worrying about communication.

I wasn't diagnosed ASD until aged 39, and only after I managed to get the stars to align by finally finding the holy trinity of GP-CPN-Autism specialist unit, which allowed me to finally be tested.
CBT works for some people, personally I think it's useless in my case as I've been forced into it 4 times in the last 15 years I believe, everytime I'd attend and try to please, never made me feel any better, just made me feel more broken than before.
I say bollocks to anyone who isn't specialised in Autism and actually part of an Autism Unit, your local Mental Health team should be able to arrange a proper testing environment with trained professionals. Rather than some idiot psychologist who peers over his glasses and says 'you don't seem autistic, you answered a question different from what I think is autism.'
It's a hell of a battle just to be taken seriously and actually seen by the proper people.

Keep fighting.

This is exactly how i'm feeling about it. The friend I mentioned has already warned me of the nightmares of dealing with GPs and "mental health professionals" who don't understand it.. I feel like shoving me into CBT is the easy option for them, i've done CBT with another professional and on my own with a book before, it doesn't really help me because I feel like it's all about trying to minimise irrational fears, but the problem is a lot of my fears *aren't* irrational, a lot of my fears are as a result of having genuinely been met with negativity in social situations in many areas of my life (and not fully understanding why) and being afraid of putting myself back into the line of fire like that. I think my anxiety is largely due to the actions and reactions of other people to the way I struggle to interact with them and I don't know how CBT can rewire me to feel positive about that?

Anyhow. Thank you! I think this is just what I needed right now. I should imagine it was quite a relief to finally have that. Gives me hope that it's maybe not as impossible to get an assessment as I had feared. Difficult, but possible. The more I hear/read stories of people struggling with ASDs and fighting to get taken seriously by the people that are meant to be helping you, the more admiration and respect I feel for everyone that has to go through that. You have to be so strong to keep fighting the whole way when other people and even your own mind is working against you. So much respect. It inspires me to carry on. <3

Hi Foxes,
I couldn't quite tell from your post whether the frustrating exchanges with this mental health person were
actually a screening or you were seeing that person for another reason. I am guessing that it wasn't a formal screening from what you write?? ANd if this was just some generic mhp, that person wouldn't be defined as capable of doing the diagnosis according to the NICE guidelines.

I can hear the frustration and exhaustion and annoyance of this situation.

I was just diagnosed a couple of weeks ago. It was really important to me to get the understanding that came from it. So I can see where you are coming from a bit.

Are you informed about the UK law, that the GP has to refer you on for screening if you make an appointment and explain why you think it's appropriate? (For this I brought along a paper diagnostic test I'd filled in myself). Depending on the nearest centre, you might have to wait a bit and maybe travel a bit--though you are in a big city, so there's a chance there's a service there. The Dx is done according to set procedures, questionnaire, interview, other stuff. It takes a while.
Good luck to you.

Do you happen to know of a certain old-time movie actor named W.C. Fields?

He used to call his lady friends "chickadees."

Not that I really like the guy. But I like "chickadees" as a sort of pet name for ladies.

Hah! I'm glad the frustration is coming across. I'm just completely astounded by how ill-equipped some of the people i've dealt with are to deal with mental health issues..

The guy i'm seeing at the moment is I think just a general mental health specialist, after his name on the letter I got for my next appointment, which says "Enhanced Primary Care Service Screening" on it so I suppose it is a screening, is just "RNMH", which having googled stands for Registered Nurse for the Mentally Handicapped. Whatever that means. He visits the practice on Fridays and the GP only really referred me to see him for my anxiety and depression etc. which she recognises but she rejects my thoughts on AS as.. like I said, she thinks that because i have qualifications from high school that means I can't possibly have it as if I had a learning difficulty then I wouldn't have been able to complete high school..? Ridiculous I know.

Also that's new to me! There are laws around it? I took a lot of printouts of the tests i'd done and information on why they were relevant with me, because i'm generally terrible at explaining things clearly and concisely, to the mental health person but he wouldn't look at it and that frustrated me so much, but I think i'm going to have to push them to listen next time. Have another hour long appointment in two weeks.
Do they definitely have to if you explain why you think it's reasonable? Is that in writing somewhere so I can take it with me? Though my GP is adamant that no one with qualifications can have an ASD so good luck to me getting her to believe it's appropriate cause to refer me for a screening. *facepalm*

Hi Foxes,

I'm utterly exhausted right now so I just wanted to let you know I'll reply in full either later or tomorrow when I have
the energy to look stuff up.

But basically: the UK passed an Autism law a few years ago saying there had to be a pathway to screening and diagnosis and that GPS had to refer you on if you presented a reasonable case for it. There's a section on the web of the National Autistic Society that explains it all very clearly.

Diagnosis can take a while. First you get referred, then the commissioning body agrees to pay and you get contacted by the local centre. Maybe they have a waiting list. BUt : it will happen.
The actual screening might take from 1 to 3 appointments. You have a choice about if they talk to your parents or a partner, and you can still get a Dx if they don't.

There are set screening procedures. NO one you are seeing in any counselling relationship should mess with your head by saying you might or might not be autistic or by springing some kind of diagnostic puzzle on you without your permission. To me that sounds completely unprofessional and unethical.

It sounds to me as if this mhp is not following professional guidelines and you do not need that. There are set procedures for Dx established by NICE -- usually an interview and some other stuff.

Dx is a strange moment, both helpful and tumultuous in my experience. If you need some good sources of info, you might look up the videos and website of Sarah Henrickx. At least they helped me. I have been to Autismcon last weekend, made contact with some others, and read a lot recently. Most people know the truth about themselves in respect of whether they are Autistic or not. Adult women who've become skilled at masking or have other issues have a different journey from, say, children who are really not fitting in. I also really recommend Chris Goodchild's book about what diagnosis meant to him, and how it can be life-saving.

Keep up your strength and give yourself as much compassion as you can.

Oh yeah, one more thing that probably helped me to get referral:

I have a lot of 'coping skills' which make me look 'normal' at least for people who don't spend much time with me. My surgery doesn't allocate GP so the young female doctor that reffered me actually saw me the first time on that day. I arranged the appointment 2 weeks in advance and a few days before I developed really bad sinus infection so when I went to ask for the referral, I was so knackered that I was basically real myself with no body language or face expression. A bit of a good luck really.

I was diagnosed last May, aged 58.
Originally I didn't want one but changed my mind. It wasn't exactly easy but this is how it went: a woman I know told me about an aspergers support group for carers and Aspies that she sometimes attended, as her son is an Aspie. A guest speaker one night turned out to be the man who eventually diagnosed me, I got their contact details and was told I HAD to be referred by my doctor.
My doctor referred me to a psychiatrist (for depression), he sent me to CBT while telling me that it would be quicker if my doctor referred me to the Asperger's Service. He said my doctor could give me a diagnostic test. (I got the impression that they didn't know what they were doing).
So I returned to my doctor with this information, she asked 'he didn't say which diagnostic test, did he? There's several of them.' He hadn't but she was good enough to search on her computer there and then, we settled on one that had NHS logos on it. It was ten questions and took maybe 30 seconds. We scored it together and I scored 10/10. (I nearly laughed out loud as this is the only test I've ever scored 10/10 in).
I gave her the contact details for the Asperger Service, as she didn't know them, and she referred me. All in all it took about six months of waiting plus 3 or 4 meetings, which included tests and interviews.

All I can say is keep knocking on the door, be a pest if you have to, get as many details of the diagnostic service you need to be referred to as possible as incredibly it is quite possible that your local surgery won't have a clue. I felt like I had to lead them all the way, you may have to as well. Take deep breaths, stay calm. You can do this.

The very best of luck to you, I hope you get there soon!

PS. The doctor who referred me saw me for the first time that day as well, she was a locum, I've never seen her since.

Hahah. Bit of an update..

So last time I saw my GP I told her about a service that existed in this exact area for specifically adult assessment of ASDs and she straight up without even looking told me they didn't exist and then asked "do you have qualifications?" which confused me because I didn't know the context and thought it strange, but she explained and I told her I had GCSEs yes but I struggled with the social side of it all and had some problems with the way I learn, I never took any information in when a teacher would just read things to us or say things, I had to have some kind of written information or even better a demonstration/walkthrough of something.

Anyway. GP told me I can't have autism because I have qualifications from school (even though they were DRASTICALLY lower than what I am capable of as I struggled to attend and complete the coursework part) and even my mental health person told me they didn't exist anymore.

So I actually got the courage to call up the number listed for the service I wanted her to refer me to to check if they do exist and they confirmed that yes they do and no she should not have said any of that. Also that they were only in the last year or active again.

Appointment to see her on Monday and demand a referral with all of your information to back me up folks, thank you for helping me! Hope it goes well.

(also interesting, I was talking about this to my younger brother last night and apparently a few years ago in school he was actually assessed for aspergers, I don't think he remembers much or if it led to an official diagnosis on paper but he remembers having a person come in specially and ask him a lot of questions and then he had a mentor and art therapist afterwards to help him in school who used the term. So it's VERY likely that it's something that's in the family. If it is genetic?)

Diagnosis and the care pathway - The National Autistic ...
www.autism.org.uk/.../About%20autism/.. ... d-the-ca...
Autism strategy guides. 3. Diagnosis and the care pathway. What does the strategy and statutory guidance say? The strategy is clear that there should be a ...

and:

http://www.autism.org.uk/about/diagnosis.aspx


There's a statutory requirement to be referred on. And iq or qualifications are irrelevant.

However, your GP will have to write a letter in support of your referral to the Care Commissioning Group, so
you need the GP on side.
I'd suggest: bring a printout of an online autism test that you've done showing the result; bring the web page about the pathway to diagnosis and the obligation for onward referral.
Ideally, you want to get GP to be your advocate, even though GP is clearly ignorant--that will work best with 'I' language--I need this, it may make a huge difference. Here is what I need you to to do make it happen. Here is
some information.

From what you say, GP is clearly ignorant about adult autism as well as the NICE guidelines and the UK statutory obligation to provide the pathway to diagnosis.
But saying that really bluntly or accusingly won't help even if it's true. (Although you might say, as I did--something to the effect--sorry if Im being a bit blunt and awkward about this, but i guess that's the aspersion way and this really matters to me.)

I would say autism has a genetic element to it--but it's not absolutely genetic in the Mendelian sense.

Have you tried discussing your concerns with the National Autistic Society? I am certain that they could help you negotiate with your GP about finding an adult diagnostician near you.

Your pre-diagnosis self-reported screening-test scores, and research about yourself and autism are consistent with a likely diagnosis. You did good work in getting this far!