Non-diagnosis

Deepthought said:

I learnt as a child to use my peripheral vision rather than my central focus as most people have not liked it when I have.

This is very interesting because usually NTs think that we avoid eye contact because it make us feel uncomfortable. You are saying that you avoid eye contact because you think it makes others feel uncomfortable. I also avoid eye contact and I think it was once more for the second reason than the first, though it has become such a habit that I can't honestly define with certainty what the original reason was for it. I think making eye contact now causes me discomfort just because it is against my usual habit and for no other reason.

The fact that we would avoid doing something because we perceive that it might make others uncomfortable (whether or not we are correct) suggests that we have better theory of mind, on average, than we are expected to according to the diagnostic criteria. I think that theory of mind thing is more for children than adults, anyway, because, whether or not we started out with good theory of mind, most of us developed it before we reached adulthood.

Is it not true that any small child will think that they cannot be seen when they themselves cover their eyes? Isn't that why they find peek-a-boo so fun? That suggests that theory of mind is learned, not innate. I have tried to remember a time in my early life when I didn't have good theory of mind. For me it's just a logic thing. Someone will know or not know something depending on their own experience. I don't remember thinking that everyone knew exactly the same things as I did. I do remember believing for the first years of my life that adults knew everything and were always right, probably because that's what I was told, but is that a trait of being on the spectrum, or just of being a child?

The same thing happened to me, apparently , according to the lady testing me, because i made facial expressions showing that i understood what people are saying to me, means that i don't have Asperger's / autism.

every online test i have taken comes out very high that i have autism, & on the NHS ladies diagnosis report, she said that i show many autistic traits, but she didn't consider me autistic ?

that statement, to me, contradicts itself.

I to would welcome any suggestions, is it possible to ask for a second opinion via the NHS ?

I actually wonder if, due to budget constraints, the NHS has been instructed not to diagnose adults with autism where possible, & concentrate on getting the support for children, i was about 46 when i had the diagnosis ( i'm 48 now ),& i wonder if the way they see it, i have managed to get thru life so far, so to diagnose me now may be a strain on welfare resources ?

the thing is, i haven't managed at all, & my life has been blighted by my mental health.

Since writing this I've been contacted by someone else who also had a negative diagnosis from the same NHS Trust, within the last month.  She is also perplexed, and annoyed at the very evasive and non-specific nature of the diagnostic letter. 

I didn't realise that the "NHS is only really now (since 2017) diagnosing ASD in terms of Low Functioning social criteria ~ due to the lack of funding and all that". That could be the case in Gloucestershire and would explain a lot.

Regarding relationships, I'm probably quite unusual to have managed to remain in a stable relationship for so long.  Lack of ToM does cause problems at times, but my wife knows it's just 'me'.  It helps that she seems to be higher 'up the spectrum' than the average NT person - she has a similar lack of social skills to me, and is of a similar intelligence.

That said, of the 4 people I know with a formal diagnosis of Asperger's/HfASD, one is in a long term relationship with my daughter (and I find her pleasant company), another is married, the third single and the fourth (a relative) was married until they both died in a car crash.

Curiously, my daughter's partner is partly influential on me seeking diagnosis.  It started a year ago, when I had to pick her up on the way to a gig we were all in, but my daughter was going to make her own way there.  I'd been told she had HfASD and I think we were mutually expecting to spend an hour not talking - I hate giving people lifts because I have to be sociable and the stress builds up.  We're both musicians (she's a student), so I started with a polite question about her studies.  Then the conversation just took off, talking about music in depth then I asked about Aspeger's and got honest, open answers.  I asked because I wanted knowledge and she gave me the information. There was no polite dumbing down.  It was later that day that I found the C4 questionnaire by Baron Cohen that we all took - and even later we both found we had severe astigmatism - my daughter was being teased on the way back for not only being NT, but being Visually Typical.

When it comes to employment, I would say my early careers were more typical of me than my current stability.  I fear what will happen to me if and when the current company closes, as I doubt I'll find anywhere quite so accommodating.  That's partly why I wanted to get a diagnosis so that at least I'd be partly protected under disability law in the future. 

Deepthought said:

interactions, especially in groups, confusing

Every time I have to go to meetings I will always try and get into a place as inconspicuous as possible.  I went to a cardiac rehab group and even though we were sitting in a semi circle, my seat was always further back, or I sat at the end and could never join in the discussions - I could never work out how to break in to the flow of speech  or by the time I'd formulated what I wanted to say, the subject had moved on twice - apart from when they got onto 'Cholesterol medication' which has been one of my obsessive subjects - then I kept correcting the nurses leading the group as their information was a couple of years out of date.  Even at a Heart UK medical conference, I found myself sitting at the back of the lecture theatre with rows of empty seats between me and the next person.

Deepthought said:

have any hobbies or interests which take up a lot of their time

According to the Clinical Psych, "did not feel that the interests you described were abnormal in their intensity, content or focus. The interests you described do not cause significant interference with functioning, and when required, you are able to redirect your focus away from your interests".  Which I find a little odd. I do get obsessive interests, including, bizarrely, ASC/ASD/Asperger's.  Trying to break me away from creating my 30 page list of reasons I may have Asperger's was interesting.  I kept forgetting to cook dinner, I left others at work to answer the phones whilst I typed, and so on.  Morris Dancing is quite an obsession - I'm one of the top musicians in that rather obscure field and have played for >20 teams.  At one point I was out 3 nights a week and all most weekends, driving from Gloucestershire to Windsor for evening practices, and Kent for weekend ones. But obviously not obsessive enough.

Thanks everyone for the advice - if anyone has more, my ears and eyes are open, as is my mind.

capers123 said:

I had the second half of my NHS diagnosis in January.

It didn't go the way I was expecting. I was told that I don't have an ASD. I'm still rather annoyed with that non-diagnosis, and disagree with a lot of what I was told.

I can well understand that you're rather annoyed with the non-diagnosis session.  

capers123 said:

Admittedly, the outcome looked likely at the start of the first session, whe the person conducting the interview said that their criteria for diagnosis was very high - they were looking to prove a disablility.

The NHS is only really now (since 2017) diagnosing ASD in terms of Low Functioning social criteria ~ due to the lack of funding and all that. Getting an NHS diagnosis for being on the spectrum is increasingly excluding people with Higher Functional presentations of Autism regarding Social Communication, Interaction and Imagination.

Check perhaps or if your not up for it perhaps not the following link from the Independent as reported on 30/05/17:

https://www.independent.co.uk/news/health/nhs-autism-diagnosis-south-west-london-st-georges-mental-health-trust-concerning-national-autistic-a7762866.html

capers123 said:

When I said that I thought of myself as having abilities rather than disabilities, she nodded.  There are a lot of things that I have problems with - social interaction, taking things literally and the like, but I don't class them as disabilities - they're just 'me'.

Well technically speaking, when someone loses or has lost the ability to do something they once could, such as going deaf for instance and not being able to hear, they are as such disabled. ASD does not always then involve being disabled, as it is a social interaction 'Disorder', although complications from which do prove 'Disabling' ~ in terms of psychological depression, anxiety and breakdowns, and physiological stress reactions involving digestion, skin and exhaustion problems etc.

As far as having problems with social interactions, taking things literally and the like goes, and stating that these are not disabilities, you are correct, but the actual concern is disorders involving social interactions, not taking things literally and so fourth. So your understanding and comprehension of how others relate and interpret things, is not a developed component of your thinking ~ so basically your Theory of (the social) Mind is more personally exclusive than it is socially inclusive. This may be indicative of something maybe ;-)

capers123 said:

The reasons I was given as proof that I didn't have an ASD:
1) I am in a long term relationship.  Yes, I am married. My wife also exhibits many Aspie traits. We have no close friends, only acquaintences. Actually starting the relationship was quite awkward.

One problem involved with having Autism is that as such long term relationships are for some difficult, and for others impossible. I suppose that being single or having a trail of unsuccessful relationships is in part a requisite for being diagnosed with ASD on the NHS now, for the time being.

capers123 said:

2) I have held down a job for 25 years.  I swapped jobs every 6 or 9 months for my first 10 years of employment - I just couldn't hold one down, often being 'encouraged to resign' as it was easier than firing me.  It wasn't just swapping employer, but changing from Bank Clerk to Music Teacher to Signalman to Fruit Machine company security analyst to Compter Programmer.  I was lucky to find this job 25 years ago, as I have a very tollerant boss who seems to realise I don't like interacting much and have allowed me to sit in a corner getting on with my work without interrupting me too much.  Noise cancelling headphones have helped recently, as has telecommuting..

Having long term employment for 25 years is no evidence in itself of not being Autistic, and the nature of your employment history prior to your long term employment is also not unusual for someone with HF Autism. Therein of course lies the problem with getting diagnosed via the NHS, as you do not seem to have LF Autism but much more HF Autism. 

capers123 said:

3) I pointed at things I was describing in a picture book during the session with the OT. Yes, my finger pointed to things whilst looking at the book. I do this if it's just me, but apparently this showed I was pointing it out to the OT thus displaying theory of mind.

So you were using your finger as a focus of your attention rather than as such for the Occupational Therapist's. Oops on the OT's part methinks. When I was diagnosed, the specialist clocked and tested everything I said and did, but stated I used good eye contact in the diagnostic report ~ even though I only looked at the specialist's left eye for a fraction of a second, before the specialist hurriedly looked away like just about everybody has. I learnt as a child to use my peripheral vision rather than my central focus as most people have not liked it when I have.

capers123 said:

4) I was quite happy chatting during the diagnosis, thus proving I have no problems with interaction.  I know that had the topic of conversation been something other than one of my favourite subjects (in this case, about me), the conversation would have been far more stilted and interrupted.

From the NAS fact pact on Asperger's Syndrome, "A GP's guide to adults with Asperger syndrome ~ Questions to consider when talking with adult patients who may have Asperger syndrome" ~ with the most relevant here being:

"Does he or she:

> find many social and interactions, especially in groups, confusing (even though he or she may seem OK one-to-one with a doctor)?"

> have any hobbies or interests which take up a lot of their time (or had these when they were younger)?

So either seemingly being happy chatting about yourself during the interview was not correctly assessed in relation to ASD or Asperger's Syndrome, or the NHS diagnostic assessment criteria no longer includes HF traits.

capers123 said:

There was no consideration of the 30 pages of ASD traits that I'd submitted in advance. My very high score in the AQ50 and very low score in EQ60 were put down to 'having learnt how to answer it'.   I was answering the tests truthfully, as often as possible without considering the answers, and not trying to skew the results of the tests.   What would the point be in not answering them with the answers I feel.

Having a high score on the AQ and low on EQ tests being put down to 'having learnt how to answer it' . . . ~ I got the 'your just a wannabe' session myself actually, on two separate occasions by two separate psychologists. Instead of letting it get me down though I used the frustration of which for getting organised and getting diagnosed.

capers123 said:

Those around me are sure that I am an Aspie, as am I.  Even the other people I know who do have formal diagnosis think that I have a high-functioning ASD/ASC. 

If I can raise the money, then I may go for a second diagnosis, ideally with someone using a different diagnostic criteria; I don't think it fair to ask my GP to refer me to another NHS clinic.

But at the moment, I feel myself to be in a limbo. Grrr.

Any suggestions would be welcome.

I so know what you mean about the limbo. I have had loads of experiences getting ignored about my problems, so many many many many times. My suggestion is be as stoic about it as possible, and recycle the 'Grrr' for getting really focused.

I would start by writing a letter to your GP (much as you have above) disagreeing with the assessment, stating (if you do) that you wish to get a second opinion, and even discuss this with your GP too perhaps. And maybe do away with the 'if' business on raising the money for a private diagnosis, and go for it as an Aspergian with all the Aspie power you need. 

Consider perhaps:

The private route often involves the person referring themselves to the diagnostic service.  The cost of an assessment range from approximately £200 to over £1,000. The National Autistic Society has details of professionals all over the UK who have autism expertise.

Copied and pasted from:

https://www.different-together.co.uk/diagnosis

If any of that helps any?

capers123 said:

whe the person conducting the interview said that their criteria for diagnosis was very high - they were looking to prove a disablility

I find this a strangely illogical statement.  Surely their is a criteria (listed in the appropriate DSM or ICD manuals) that says when the criteria for a diagnosis should be given.

One particular diagnoser (for want of a better term) should not have either higher or lower criteria since that would bring the whole process into disrepute.  If you meet the criteria in the book you are autistic, if you do not, then you are not.  Simples.

I would suggest you appeal against the decision on that basis - that they were using their own criteria not the set criteria in the relevant manuals. And I would also think you should report them to the relevant body (the HMRC if a psychiatrist, unsure if a psychologist but I'm sure it will be directed to the right place if you send a complaint to HMRC or the hospital/clinic where you had it done).

This is not to say that you would get a different result should you have a review of your diagnosis, but it would ensure that it was done correctly.

On some of the other points, none of them appear to prevent a diagnosis on its own.  I think a lot of the 'not wanting change' is not wanting change inflicted upon us.  I know when I initiate a change myself for whatever reason I am more happy with it, and that could explain your varied job history.  Autism is a lot of conflicts, one can be 'quiet' or one can bore the pants off someone with conversation on one's own interest.  And this can also be 'learned' behaviour - you may have 'learned' to talk although the result may not appear that coherent to other people and they keep wanting to leave (I am like that myself!)

It appears to me as if you have had the same sort of diagnosis interview that they give to children.  Adults have had many years to 'learn' traits of NTs which doesn't make them NT.  It just means they have learned a script.  And this can manifest itself later in severe anxiety, suddenly being lost for words when the 'script' isn't there, stuttering and delays in response and meltdowns.

This is the reason that terms such as 'mild' and 'severe' autism have little reason.  Someone with 'mild' autism often has their needs overlooked, someone with severe autism often has their abiities overlooked.  Despite the fact that someone may not appear to be affected much, deep down there are huge problems. 

And while I wouldn't think you want to be diagnosed as autistic if there is another reason for your being the way you are, I think you deserve to be fairly assessed so that you may get the right support.

Thanks.  I'd spent the last few months trying to persuade myself that maybe I didn't have an ASD.  I think the final straw was yesterday when I went to pick one of my daughters up from Uni, and found myself flapping my arms onto my sides and bouncing in happiness at seeing her.  Didn't phase her at all - her partner, one of partner's parents have HfASD as well so she's well used to many people   But it convinced me that all things considered, the NHS clinic were wrong.

Well, I say wrong - but it is possible that they were correct by their very, very narrow criteria. The big problem is that "if you've met one person with ASD, you've met one person with ASD" - none of us are the same.

I think you should ask for a second opinion. I'm not sure if you are entitled to one under NHS because I don't know the rules, but if you are, I think you should go for it. You want to be fair, but it would not be fair to you not to get a properly reasoned diagnosis. The reasons you were given seem lame and contrived. Just because you are high functioning doesn't mean you don't have ASD. It's little kids who are on the spectrum that have trouble with theory of mind, not so much with adults, who have learned to behave in the way that is expected of them. I would also point at pictures in a book, but that doesn't mean I'm not on the spectrum.