Experience of adult autism diagnosis process

A couple of days ago I finally attended a formal adult diagnosis session for autism.

I decided beforehand to behave what I considered to be my normal self.  And unsurprisingly I failed by passing.

By this I mean I passed their tests so I failed to be diagnosed as autistic.

In real life people consider me to be an oddball, mental, anti social, reclusive, aloof, unemployable etc etc etc.

The formal diagnosis found me to be not autistic.

I start at the beginning.  I have though long practice and observation of normal people, learnt to fake normal behaviour.  Although many people have told me that I give off uncomfortable vibes and there is always something wrong about me.

The invitation to the assessment mentioned a multidisciplinary team being present.  This turned out to be only two people, a psychiatrist I met before and a social worker.

The assessment!

I managed to find the place and travelled there alone using public transport.  Normal, not autistic!

I was offered a drink, asked and accepted coffee. I'm guessing this was part of the test.  Again normal behaviour, not autistic.

Formal test started with statement that test was designed for small children but they adapt interpretation for adults.

I was asked to place pieces of soft plastic shapes onto a paper outlines.  I wasn't given all pieces and social worker refused to give me rest to complete task.  I asked her, are you treating me like a child and trying to get me to throw a tantrum or have a meltdown?  I also askef her politely for the other pieces.  So failed meltdown test.

She asked me about my last holiday and got me talking.  Then dropped hints about her holiday.  Obvious attempt to see if I was able to hold a two way discussion and pick up social hints.  In this artificial test i can.  But in real life I can not.  So failed conversation test by passing it?

Gave me sets of photos of people with various expressions and asked me to describe what I thought they thinking or expressing.  Found this easy.  But in real life I fail because I fail to distinguish between people being genuine or wearing a mask or just taking the Mickey.

I maintained the appropriate eye contact throughout the session.  I have had years of practice and I make a conscious effort to do it.  In the past I was reprimanded for not looking at people at all when I was speaking to them or when they spoke to me.

I was given a children's story book full of drawings and asked to make up a story based on the drawings.  I made a good attempt so failed this autism test.  Although as a child I was totally lost with these kind of situations and had almost no friends and failed school exams in English language and literature ( I was ungraded. Grade U.  That bad).  

Last page of book had quote : " when pigs will fly" I was asked if I understood what it meant and explain it.  I explained it successfully and added that it was an idiom.

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

As for my personal problems of dealing with people and life in general, there is very little written proof.  And other people's opinions, again very little.  Since most have passed away and I have lost what little contact I had with other people during my life.  And I have always been reclusive.

So end result.  They decided I am not autistic.

 

Parents
  • 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?

Reply
  • 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?

Children
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