Experience of adult autism diagnosis process

Hi Robert,

Everything you have written could well fit with an underlying root cause of autism. You may well have other issues that have developed over the years. PTSD and Borderline Personality Disorder are things that can develop in people with autism who do not get recognised early on. These issues are treatable and should not be regarded as permanent behavioural traits in the way that autism is a lifelong condition. It is not always easy to work out (for the individual or for a specialist) what is the underlying autism and what is an acquired behavioural issue.

So, one of the things that can happen is that you can develop behaviours and coping mechanisms that actually mask or distract from the autism. Autism is hard to diagnose - if you see the number of people on this forum that have had other diagnoses before the autism was spotted then the sheer difficulty in diagnosing it may well be a factor in your case.

There must be something that you are doing, that you are obviously not aware of, that is putting the wind up other people. Before I was diagnosed, I was identified as being relentlessly critical, when I was at primary school a teacher once remarked that I always looked serious - many people with autism can have stony faces or faces that never look friendly or happy. In hindsight I can see that my demeanour did not help at all but I was blissfully unaware of a problem until it blew up into a major problem at work. Some autistic people just will not listen to other people and are unable to hold a conversation at all. Some people dress in unconventional clothes or are unkempt and have less than friendly personal hygiene habits. If you can't think what it is that alarms people then I would have thought that your workplace advisers really should be able to give you some clues about the way that you come across to other people. Perhaps it would help if you observed yourself in some video recordings?

I would avoid blaming the situation on quacks or on deliberate attempts to humiliate you - the *** up theory of life is a much better and more likely explanation in my opinion.

PS I added a square bracket to my earlier post to make the quotation thing work properly. You could edit your post with an extra ] to make it appear correctly.

Robert124 said:

So test was a series of tasks suitable for 5 year olds.  I passed so I failed

Your scepticism and argumentative approach support the idea that you have autism.Personally, I would guess that you may well end up with a diagnosis so don't give up yet.

However, I was a bit gob-smacked when watching a program (probably Horizon) on Autism where they showed some tests that they were giving children. I, now aged 59, gave the autistic answers to what were apparently childish tests. Don't dismiss a test because it was for a five year old. Obviously, that doesn't mean that they used suitable tests and that they were properly trained in autism diagnosis. The tests will be mysterious and baffling to people with autism because autistic people lack insight into the social situation that the assessors have to create for their tests.

At the end of my assessment the consultant explained what it was that had betrayed my autism to him and he explained that, among other things, he had been very obviously and deliberately rude to my wife who was present and I hadn't noticed anything. A normal person would have jumped to her defence but the whole thing just passed me by!

NAS18906 said:

Hi Robert,

Firstly you should look into getting a second opinion. This is practically a right that you have with the NHS. Look at the threads returned by this community search community.autism.org.uk/.../"second opinion" for some valuable hints and tips.

There are a few possibilities.

a) the assessment team could be wrong. This is not an exact science and at the moment you have received one opinion that may or may not be true.

b) You don't have enough autistic traits to justify a diagnosis which would lead to some useful intervention. They may have been considering it just from a health point of view but actually your major issues are with employment. It may be worth contacting Access To Work to ask them what you should do given your difficulties in finding employment

c) perhaps autism isn't the right diagnosis if you do have a problem. You have cited a number of things that could fit with autism but I don't think that we have enough information to make a sound differential diagnosis.

Could you perhaps expand on what you were saying about people being terrified of you? Why do you think that was? What was it about your behaviour that made people think that?

I am actually getting specialist help with employment problems tailored towards people with mental health problems from an organisation called workplace "______" I don't want you to know my location!

My social problems go back to my family, school, finding employment, keeping employment.

At school I found it difficult to make friends or fit in.  I was bullied. Physical punishments I suffered were unfair.  I was often absent for weeks and months.  I went to two special schools when I was 8 then 10 years old.  Then back to normal schools.

I found it difficult to cope with change, like new schools and new faces.  In the sixth form I only visited the Common room twice in two years.  Other students went in every day.

I have difficulty remembering people's names and faces

At work I find it difficult to socialise and again just like school I don't fit in.  Most people tend to form small social groups.  I don't. I am usually alone, an outsider.

I find it very difficult to walk into crowded canteens , where people are talking and socialising.  I've even collapsed into unconscious trying.  Then I avoid these situations entirely.

The job training scheme where they were terrified of me !!!

The job centre sent me onto the scheme. Warning me that I had to attend and my payments would be stopped if I didn't go or if I was thrown out for any reason.  The objective of the scheme was employment with a local supermarket.  At the time I was applying for retail jobs and had failed two interviews.

The problems started on the first day when we were each seated at a computer and were told that in the 21st century we all had to be computer literate to be employable.  The exercise we were given was to type a given page using a word processor.  I just got on with it and typed in the page at my normal speed in around 10 minutes.  When I turned round I noticed that a couple of the trainers were giving me very strange looks while they were going round helping the other trainees.

At the end of the week I was asked into the managers office and told politely to leave the course.

I explained that I couldn't because the jobcentre would stop my benefits and could he give me a reason.  Since I attended each day on time and took part in all the activities, why was I being kicked out.

After hesitating he told me.  That there isn't anything that I've done.  Just.

I don't fit in with the rest of the group.

I don't belong there.

The training staff are terrified of me.

And a supermarket wouldn't employ me in a million years.

So there's no point in me staying there.

Eventually I agreed to leave after he assured me that he  would make sure that the jobcentre would continue to pay me benefits.

A couple of years later on another training course I was moving between training suppliers and at the exit interview I was signing forms and checking personal details. When the manger mentioned that he had to write a report about me.  And he assured me that obviously he wasn't going to tell the truth.  I was so embarrassed that I didn't ask him what he meant.  I still regret it today that I didn't ask him to elaborate about, what truth?

NAS18906 said:

[quote][/quote]

Your scepticism and argumentative approach support the idea that you have autism.Personally, I would guess that you may well end up with a diagnosis so don't give up yet.

However, I was a bit gob-smacked when watching a program (probably Horizon) on Autism where they showed some tests that they were giving children. I, now aged 59, gave the autistic answers to what were apparently childish tests. Don't dismiss a test because it was for a five year old. Obviously, that doesn't mean that they used suitable tests and that they were properly trained in autism diagnosis. The tests will be mysterious and baffling to people with autism because autistic people lack insight into the social situation that the assessors have to create for their tests.

At the end of my assessment the consultant explained what it was that had betrayed my autism to him and he explained that, among other things, he had been very obviously and deliberately rude to my wife who was present and I hadn't noticed anything. A normal person would have jumped to her defence but the whole thing just passed me by!

I only started internet research on autism after the mental health team helping me after my last suicide attempt suggested I might be autistic.  And from that research I think I fit most of the criteria.

I am guilty of over analysing situations at times.  As for these autism tests.  I was behaving the way I would behave now when I am trying to be natural. ( Or just being myself) .  At the same time as I was doing the tests, I was working out what the tests were really about (reading between the lines) this is due to very extensive advise I've been given by career advisers and internet advice about job interviews.  Where we were told not to take questions or tests literally, but to think about the reasons behind tests.  Or what is really being tested.

So on each test, I was thinking from an outsider's perspective and an academic point of view.  What is being tested?

Being greeted as I arrived?  By the actual social worker involved in the test.  (Part of the assessment?)

Being offered a drink (by the same social worker) Again part of assessment.  And I was taught about job interviews that one is being assessed on social skills and one handles oneself as soon as one arrives and not just in a formal interview room.

The test with the rubber jigsaws and placing on pattern.  And refusing to give me the extra pieces.  I immediately thought, " looking for meltdown or tantrum in infants". How transparent and juvenile.

Asking me about my last holiday and then dropping hint that she wanted me to ask her about her holiday.  Test of two way conversation ability.  Again I can cope with test.  But in real life this is very very difficult for me.

Looking at photos and describing people's emotions or telling stories.  Again test was easy.  But in real life I am useless.

The flying frogs in the children's story book and making up tale of what it's about.  Testing imagination and story telling.  Again test easy.  In real life and in my childhood I was hopeless.  And I rarely played with other children.

The "pigs will fly" idiom.  It's only in recent years that I finally understand idioms, sarcasm etc.  I can understand it on TV, but in real life I struggle.

Maintaining appropriate eye contact.  Respecting personal space etc.  I am have been taught as an adult what is considered normal and I am constantly analysing if I am getting it right.

So we have this paradox that I fail autism tests because I am always trying to behave normal, or non autistic.  And I can see the reasoning behind the test in order to avoid the autistic response.

But in real life people realise sooner or later that I am faking the normal responses.  And that there is something not right about me.

As for my social life.  It is virtually none existent because I just don't understand people.

Hi Robert,

Firstly you should look into getting a second opinion. This is practically a right that you have with the NHS. Look at the threads returned by this community search community.autism.org.uk/.../"second opinion" for some valuable hints and tips.

There are a few possibilities.

a) the assessment team could be wrong. This is not an exact science and at the moment you have received one opinion that may or may not be true.

b) You don't have enough autistic traits to justify a diagnosis which would lead to some useful intervention. They may have been considering it just from a health point of view but actually your major issues are with employment. It may be worth contacting Access To Work to ask them what you should do given your difficulties in finding employment

c) perhaps autism isn't the right diagnosis if you do have a problem. You have cited a number of things that could fit with autism but I don't think that we have enough information to make a sound differential diagnosis.

Could you perhaps expand on what you were saying about people being terrified of you? Why do you think that was? What was it about your behaviour that made people think that?

Actually my problems are complicated by language issues.  English was not my first language and I have found old school reports which state that when I was eight years old, I still spoke almost no English and paid no attention in class because I probably didn't understand anything that was said to me.

Both my parents also had severe language problems and some mental health issues.

Not saying that you don't have autism of some sort, just being surprised if they would not try to figure out what else the problem is if they don't think it's autism.

Panic attacks are not my only problem.

I suffer from lack of social skills in general.  When I try to join group discussions, I fail and get the cold shoulder.  At other times I am accused of shunning people by not joining groups that I should be socialising with.

Over the past few decades I have got better and some people have helped.  

I was around 20 years old when one friend finally explained to me the concept of eye contact.  Or at least how to fake it by looking at the face of the person I am speaking with.

Then when I was living in a shared house, I had long discussions with a woman (who was a diagnosed paranoid schizophrenic) who explained in detail the concepts of personal space and how to maintain two way conversations by listening to clues in what the other person is saying.  

I advise you to go to all appointments,. If you don't you may lose support from these people.

Indeed, in that case a diagnosis would probably be helpful.

Did you actually get chance to tell them about these problems? And if so, did they suggest what else it may be? I mean, you were obviously not intending to get yourself thrown out of the training and given that you want a job it would seem quite strange for the people assessing you to think that being classed as unemployable because of the way you act with others and despite being otherwise capable of doing the work is just the way it is, with no way of helping you. 

"Unfortunately I am generally honest and straightforward.  I cannot fake a tantrum or meltdown on demand.  My real problems are panic attacks in some social situations where I have lost consciousness." - you probably wouldn't have autism if you could... There may be another reason for panic attacks and everything else, but it's terrible if they just give up on you.

Let me add a few things.

I considered the travelling to be part of the assessment because I know several people who would be unable to do this alone.  I can read timetables, follow route maps, change buses and generally travel independently with ease.  But I know people who cannot understand timetables or travel by any public transport for various reasons.

As for the coffee, my late mother had  drink and food phobias and obsessions.  She would only drink and eat food she made herself to exact specifications.   Milk had to be boiled, not cold or warm.  Tea bags had to be square not round.  She refused point blank to accept drinks from anyone. 

The tests were very superficial and I could see in advance what response they were looking for.  Unfortunately I am generally honest and straightforward.  I cannot fake a tantrum or meltdown on demand.  My real problems are panic attacks in some social situations where I have lost consciousness.

As for the advantage of a formal autism diagnosis.  I have even been thrown off job training schemes because I was told;  "I don't fit in with the group, I don't belong there, the training staff are terrified of me!? And they consider me to be unemployable,. So there's no point in me being there". So I was ordered to leave.   My sister suggested that I am showing classic symptoms of autism.  And with a formal autism diagnosis I would be protected by disability discrimination legislation.

The first part of my assessment involved the same or similar tests apparently designed for children.  The picture book was mainly about flying frogs (though I recall the last page implied a flying pig, as you say).  I also had to arrange the jigsaw pieces over a template (my pattern turned out symmetrical, which may have been significant?) and to make up a story using various toy objects from a bag.  But they told me all this was not particularly crucial in the assessment.  I was diagnosed with Asperger's, even though the report says I demonstrated pretty good social skills.

Fortunately, I had a lot of written and photographic evidence from my 1960s childhood!  And my long-term partner's evidence was also taken into account, even though he's only known me as an adult. 

Hi Robert,

Sounds absolutely awful... That whole kids style test at least. Not sure if the public transport thing and the coffee really was part, guess that's you being (perhaps too) analytical (you do tick that box!). I did the same though, came by train, walked across the town, had a coffee, but then told them that finding it was easy because I had a GPS thingy with me as I searched for and found a few geocaches on the way - red flag, weird hobby!? I kept wondering if that had made them deciding for a diagnosis until I received the letter and it didn't mention it at all.

Sounds like the actual assessment just wasn't aimed at what was called Asperger's syndrome in adults. Maybe you could ask for a second opinion but it sounds like a dreadful experience to go through twice. What would a diagnosis do for you though, other than explaining to yourself why things have gone the way the did? You already kind of know that, isn't it? Think if there is something like problems at work you need help with then it may be worth a try, but otherwise perhaps give your own diagnosis priority and simply consider yourself autistic no matter what the people doing the assessment said? If you want to explain something to someone else you could always say that you have some autistic traits, that's in no way a lie, even if you didn't get a diagnosis.

Somehow this whole labelling or not labelling of people seems to cause a lot more upset than it prevents or resolves...