Autism assessment - ADOS Module 4

I remember that book as well.  Cheltenham, in January.  Actually I quite enjoyed the book.

I was told I couldn't be autistic as I used my finger to point at the frogs (I was working round the page, and it helps to have a finger there). "You were pointing at them to show the other person".  Err - no I wasn't. 

I was also told that being in a long-term relationship, and holding down a job, also made it unlikely for me to be an Aspie.  They also didn't have my parents there (dead) but did have my wife and I'd sent a 26+ page doc of problems during childhood & youth.

The whole assessment seemed to be based at proving a deep level of disability, which as a 56 year old, high-functioning person, doesn't strictly apply.  I do have many problems that inhibit 'normal' behaviour, and are hard to work around.  I also have developed coping mechanisms (masking), but am less stressed if - for instance - I'm talking about a specialist subject, which includes talking about me.

Unsurprisingly, they didn't give me a diagnosis.

I went private a few months later, was tested using Baron-Cohen's AAA assessment (of which the AQ/EQ questionnaires are just the basis for the diagnostic interview), and was told I was Autistic wth problems at a clinical level, some severe.  Which fits in with my life experience.  Curiously, my wife was present at the diag interview, and said she would have answered most of the questions the same as I (apart from not being me, of course). 

After this, I went back to the local NHS Trust who said that ADOS 4 wasn't 100% reliable, and offering me a second opinion.  I declined as I didn't want to go through it a third time.

Many thanks.  That's really interesting to me.   I am already planning my response to a non diagnosis and the probability of getting a second opinion or going private.  I can't remember whether I pointed to the frogs.  I do remember my elderly mother telling them that I never pointed as a child, though, and also that I was a very fussy eater.  However, I've held down a job for 30 years and been in my marriage for about as long so, on the face of it, I have the trappings of "normality."  That said, I have always felt different, never fitted in, have no long term friends and longstanding anxiety issues.  For me these are significant factors.  Apparently the multidisciplinary team will do soem kind of formulation before arriving at their conclusion.  I do hope they share this formulation with me and that, if it doesn't indicate autism, it goes some way towards explaining my lifelong difficulties (incl. with people, in the workplace and with many kinds of societal expectations).

Many thanks.  That's really interesting to me.   I am already planning my response to a non diagnosis and the probability of getting a second opinion or going private.  I can't remember whether I pointed to the frogs.  I do remember my elderly mother telling them that I never pointed as a child, though, and also that I was a very fussy eater.  However, I've held down a job for 30 years and been in my marriage for about as long so, on the face of it, I have the trappings of "normality."  That said, I have always felt different, never fitted in, have no long term friends and longstanding anxiety issues.  For me these are significant factors.  Apparently the multidisciplinary team will do soem kind of formulation before arriving at their conclusion.  I do hope they share this formulation with me and that, if it doesn't indicate autism, it goes some way towards explaining my lifelong difficulties (incl. with people, in the workplace and with many kinds of societal expectations).

Hiya, I know this is an old comment but just wondered how you coped with your family & friends disagreeing with your diagnosis? 

It never occurred to me that that I might have autism until my work organised a Dyspraxia assessment for me and the assessor recommended that I get assessed for ASC. I'm awaiting my assessment at the moment but my family have been pretty open about the fact that they think it's a waste of time as they don't think I'm autistic.

It frustrates me a lot because although I'm unsure about it, I trust the assessor who raised it, she obviously saw something in me and the more I read about ASC, the more i think there could be something in it. It's just upsetting to be told by others what they think about it because they are not in my head and don't share my experiences and they are basing their opinions on the version of myself that I present to the world but they don't know how hard I work to be that version. 

Yes, I'll see what they come back with and probably go in armed with loss of questions.  I wish they could have told me straight away as I've been waiting a very long time, with smaller waits between each appointment.  

I probably don't come across as autistic in the way that most people expect either.  However over the years my "weirdness" has attracted comments.  

When I had my two stage assessment just over a year ago at age 55, they didnt bother with any of the weird frog nonsense because I joked about having read online what the assessment entailed & hoped they weren't going to ask me to do any daft childish things like reading children's picture books.

She said that I wan't really supposed to have looked it up online, but I said that I do that with absolutely everything, especially medication or anything health related. The second stage of the assessment just seemed to consist of chatting for an hour on a variety of subjects, after which she confirmed my diagnosis straight away. My automatic masking & social skills are generally quite good , but obviously not enough to fool a trained professional.

My parents & several of my friends still think it must be some sort of mistake, because my autistic traits don't manifest in the ways most people expect, e.g. I like socialising & meeting new people, much preferring it to being on my own which I find very difficult. I know that the diagnosis is correct though, because it explains so much about why my life has always been so volatile & unpredictable.

I know that Autism in Women is sometimes considered harder to diagnose, because they are often better socially adapted. Despite not being in the least bit feminine (I really do look like Santa), I have been told that I confuse people because I mostly manifest 'Female Autistic Traits', but that didn't stop me from getting a successful diagnosis last year & I hope that you manage to do the same.

Sorry if I am going off topic, and  as I have not been formerly diagnosed yet I can’t comment on the testing which to my mind sounds wrong if it is tailored to children! Do they not think we have the ability in my case fifty five years to learn certain things even when I don’t agree with the answer?

I have held down my job for over thirty years, started as a labourer when fairly young,,soon learnt how to operate mechanical excavators which gave me a side line, carried on doing labour and operating machines on our own jobs, moved onto hire jobs so in effect became my own boss,,driving to and from each job was slow but I have many memories good and bad to shareLol. I was solely responsible for “my” machine.

moved up to big track machines which adds responsibility as one wrong move and big damage,,I also got a company van to go with it.

When I started to suffer various muscular related health issues I switched to being a foreman, a role I was already doing in our jobs and at times using my skill and knowledge to run sites I was on hire too.

I now rarely operate machines but have been told my skills are amazing. Well knowing all about hydraulics and  principles of leverage etc certainly helps get the most out of them.

What I will say is I settled for a menial job which didn’t demand much of me mentally,,physical ability and a good grasp of common sense.

I always felt I should have been a mechanical engineer or a designer as I cannot stop reinventing the wheel as such...Sadly my early school days were a disaster,,,I left with no qualifications, had no idea how important it all was TO ME.

just got through each day best I could, as I had always been treated harshly I decided if it was going to happen it would be on my terms. So i rebelled,,,They soon didn’t bother with me at all.

so chasing a career that was not over stressful worked for me, sadly more admin and being a junior boss has took its toll..I mask well and often succeed, but at times I struggle so much interacting and keeping everything going,

well long post after a very long absence,,

Hmm...  My ideal jobs would be gardener, beekeeper, writer, artist etc, basically anything which might allow me to be more of a hermit whilst freeing up my creative side.  I thought, as I entered the world of finance, that there would be a good chance I could hide in a corner doing some bookkeeping and end of year accounts.  Alas, offices became noisier and noisier.  Open plan, hot-desking, loads of computers humming, phones ringing, people chatting intermittently or walking through to other offices etc.  In summer, due to health and safety, the windows could only be opened a little.  Cue the small army of whirring fans!  All this plus increased demands for networking, leading staff training, attending meetings, giving presentations, driving off to do courses in other cities etc.  I think I had unrealistic expectations based on a very outdated view of the world of work combined with an inflated idea of what might be achievable for me because I was able to do well academically at school.  I think that if I could gave just had a back room job with just me and a computer, it might have been OK.

Teacher of Computer Science - enjoying particularly the programming side and new and emerging tech.  Self confessed geek and I get to meet a lot of auties in my job! :)

I am so happy for you that you found an ideal place to work where you are also very much appreciated.

I work in IT as well, but made the mistake of specialising in programming & data analysis for marketing purposes. It was great until ten years ago, I earned decent money & found it very easy to get work.

Sadly, once the financial crash started, the types of agencies I worked for decided that handling data properly was far too expensive & time consuming, when good old fashioned 'lying to clients' was much cheaper & easier.

Since then it has been increasingly hard to find reliable work & currently I am taking time out in a vain attempt to get my head together after becoming badly depressed. I doubt I will ever get back into IT though, as my programming skills are now considered 'Too Old School'. Most employers assume that 'An Old Dog Can't Learn New Tricks'  as well, so at 57 I couldn't even get an interview for jobs I would be technically overqualified for.

Such is life though

I started my current job in August 1992, and apart from a brief/grief hiatus in 1996 when I went to another company for 6 months (before I walked out) have been in it ever since.

Before that, however, the longest job was 18 months, with most being around 6 months.  And very diverse - bank clerk, music teacher, BR signalman, IT support, programmer, trainee accountant (1 week before I walked out).

I'm lucky, I think, that the company I work for tollerate me.  In the early days, I sat on my own well away from others. The company has shrunk, so I have to be near others. The headphones help, and  (being the IT guy amongst other things) have sorted it so I can work from home at least 2 days a week.

I do the work exceptionally well and fast, which is why they accept me - but I still get the odd bollocking for being a bit 'curt' with the customers or remote colleagues.

My wife once said that one of the best places for Aspies to work is either a large government IT department (where she works) or in local government (our County Council has many iteresting people working for them).

Just as an afterthought, my husband has been in a similar position and, over the years, I would say we became dab hands at fighting organisations over probationary periods, proposed redundancies and restructuring/reorganisations.  We often successfully fought our corner and yet, of course, it all took its toll emotionally.  There remains a longing for a workplace that doesn't feel like a battlefield.  

Ah.  The thirty years were mostly in the same line of work but not the same job and I had to keep moving around to get the next position all the time. it rapidly became obvious to me that I was unlikely to get a promotion if it was internal.  As an external candidate I could excel.  It took a lot out of me to do so, but I could target the application to the job and person specification and also survive a half hour to an hour interview.  (I only had to lie in a darkened room for several hours afterwards to recover!) When I actually got the job and had to pretend to be the confident, decisive, competent and sociable person they thought they'd employed for nearly 40 hours/week, that's when the problems started.  I could almost feel people wondering what had happened.  Nevertheless, I did all of this to survive and pay the mortgage etc.  I should add that all of my  jobs were in the NHS so, in effect, I had continuity with my terms and conditions, in spite of being made redundant 3 times and never being a successful internal candidate.    

You held down a job for 30 years!!!!!!!!!

My longest job was 2 years.

I have been forced out after 4 weeks, 3 months, 6 months etc.

Asked to leave training schemes after 1 week.

In my current job the probationary period is normally 6 months.  They have bought my final probationary/disciplinary meeting forward to only 4 months in the job to try to get rid of me.