Support for those much olchder adults with ASDa

A lot is written about children on the autism spectrum.  A lot has been written about employment for adults on the autism spectrum.  But there seems very little written about those who, due to non-recognition of symptoms, have gone through their lives with problems and only in late middle age begun to realise that they are on the spectrum.

'Adults on the Spectrum' seems to concentrate on those from early adulthood to below middle age.  I feel for these, since obviously I have been through that stage.  And without support I suffered the problems they have - not being able to obtain work, continually being rejected at interviews, being socially inept, made a figure of fun for being 'strange' and not being able to understand certain ways the major part of the human species have.

So I am not denying anyone the right to have support, and society needs to learn that anyone on the autistic spectrum has feelings, needs, and may have invaluable skills and that the way they put these skills into practice might just be different, possibly superior, but probably not inferior to any neurotypical person.

So to the point of my post.  I have been recently diagnosed at 62.  I have suffered throughout my life with attitudes of others who thought I was 'strange' and deliberately being awkward.  Many years of unemployment.  And now have an employer who basically just couldn't care less about equality law and whose attitude seems to be 'that is the way we work and we can't alter our model'.  (I might add that my employer changed due to a TUPE (a term for when one employer takes over a service and takes all the employees with their terms and conditions into the new employer). 

The office changed, the system of working changed, and most fundamentally my job role changed from something I had a flair for, to something that I didn't, with frequent changes from one task to another without being allowed to finish one task before being shifted into a new one.  And when these new tasks included dealing with telephones in a multi telephone room, the telephones constantly ringing but not in a ringtone which I recognised from a telephone.  The results were that I drove everyone mad, that I was told about my performance and that 'everyone' had to take their turn on the phones as 'that is the way that the company wants to work'. 

I don't think it takes much imagination to work out what happened.  Although I suspected I had an ASD, I had not been diagnosed.  After being absent from work for nearly six months due to the stress my work was causing me, I decided to refer myself privately for a diagnosis.  My GP was not interested in referring me for an NHS diagnosis, he seemed to be of the opinion that I had reached my age and if I had the condition he didn't know how a diagnosis would be any help at all.  So I was refused an NHS referral.  In any case, I could not have waited the two years it may have taken as relationships with my employer were not good and I think I would have been out of a job.

My employer referred me to an occupational health service.  I will not give the real name of the Occupational Health Service, I will call it ShamefulAurum Health. (some of you may be able to decipher this to its real name, but I will give no other clues as to what it is)  ShamefulAurum Health  seem to have one objective only - to follow their own agenda and not get to the root cause of the problem. 

On my return to work, although I was still seeing (and still am for that matter) a psychotherapist for help with severe anxiety and depression, thought that I was fit for all duties and did not think any adjustments were necessary (despite my saying that a major trigger for my anxiety was working in an open plan office and dealing with phone calls from the public).  I was only a month away from my diagnosis appointment at the time, and the ShamefulAurum doctor was aware of that fact.  He said to me that he was not conversant with the job I did and as I had returned to work I could obviously do all the tasks expected of me! 

Even if I did not have an ASD (which obviously I did even though it was undiagnosed), the fact that I was suffering from chronic stress (I had suffered from clinical depression and anxiety for a period of over forty years and probably more) should have made it obvious that some adjustments were necessary.  And then when they get the report, the employer just thought I was 'making everything up' because what I said did not tally with the report.

Just before I had my diagnosis, my employer again referred me to ShamefulAurum Health.  I did wonder about their motives in doing this, I think they just wanted a 'confirmation' from them that I just wanted to pick and choose the jobs I wanted to do so then they could 'let me go' in the parlance of employers as they could not accommodate that.  I delayed filling in forms agreeing to the referral until after my diagnosis, and have now sent the forms back to my employer with confirmation of my diagnosis and saying that I do not think that company are competent to judge.  I have also referred myself to Access to Work and this seems, on first impressions in the contact I have had, to be a more positive way to proceed.  It remains to be seen whether the referral to ShamefulAurum does go ahead, but I have told my employer I will not go to any interview with this Occupational Health Service without my trade union representative being present.

The point in me going on at this length on a specific point is that the attitudes of those who should know better - my GP (and the NHS for that matter) who are of the opinion that older people do not need help if they have not been diagnosed, and the Occupational Health Service who comes to a conclusion based on no evidence whatever and would not even entertain the fact that Autism may be the cause of my problems (they did not even contact my GP despite permission being given by me for them to contact him).

I am positive about my diagnosis is going to be a great help in getting the adjustments I require.  It will not get me back to the jobt I really enjoyed, the one I had before the TUPE (and I am sure I may have been given this job had I had a diagnosis eighteen months ago).

And apart from work, the diagnosis explains to me a lot of the way things have panned out in the past.  It is too late for regrets at those, and with hindsight things could have been different.  But hindsight is a wonderful thing.  What is really needed is for Autism in older people to be thought not as something that they have learned to cope with, but as something which can cause difficulties at any time should the personal circumstances change.  And in the end, it is society that pays the price for these poor attitudes, poor support and poor education in those in positions of authority about autism.

And finally,  has anyone else had problems with an occupational health service?  I would be interested to know if any other occupational health services act like ShamefulAurum.

Parents
  • Thankyou random.  As usual, you make a lot of sense and put things very succinctly.

    Your final paragraph is exactly right.  We all need support and get to have a 'normal' life.  I cannot say I ever thought I didn't have a 'normal' life.  It was 'normal' for me, I didn't know anything else.

    However, in retrospect, my life was not 'normal'.  I had a period of twenty five years with no paid employment.  I did go on some government schemes supposedly to help me find work but these were not geared for someone like me.  And as I was married and my wife was drawing a wage deemed sufficient to support me I was in that position that the jobcentre was not that bothered about me, I wTas drawing no wage, drawing no benefit except my 'stamp'.  And not getting the self confidence that a job gives you.  I was 47 before I got a proper full time job.

    My ASD must have been a major contributor to this.  Difficulty with interviews, accusations from others that I was being 'negative' all the time me wondering why.  And no matter how hard I tried I could not change things.

    Things are no different now though.  Because no one can tell just by looking whether someone is autistic and because society wants every one to conform, this makes things difficult for those who don't know why we behave the way we do.  Authority figures whether they are job interviewers, managers, people in authority or government officials or whatever do not ever think "Perhaps that person is on the autistic spectrum", they just see someone who seems to have a difficulty with communication, someone who is trying to hide something (lack of eye contact), someone who is being deliberately awkward and someone who is socially inept.  And although they may know of the condition in younger people, from adulthood you are increasingly on your own.

    Yes, there are coping mechanisms and adaptive behavour that can be learned, but my life then started being one great act.  I was just in a world where I had to appear on a vast stage, the parts being many according to what the situation I was in.  But this acting is not without its problems.  Sometimes I thought I was in one play, only to enter the stage door to find out I hadn't learned the right part.  And it is in those circumstances that anxiety occurs.  A situation in which I had no control, and not knowing what was coming next.  Others think the odd behaviour is either funny or being deliberately obstructive. 

    If anyone is concerned about the thought they may be on the spectrum and are wondering whether to have a diagnosis, I would say go for it.  If you cannot get the diagnosis on the NHS or cannot wait the time, consider going private like I had to.  It was money I could ill afford but it has gone a long way to me understanding the person I am. 

    And I do believe we need to lobby our members of parliament, make our position known, publicise how important having a diagnosis is, write to newspapers, broadcasting organisations and other publications.  And make it known that autism is for life, it affects all ages and it is always in the background ready to cause problems when the opportunity arises. 

    And despite this, I would not want to be anyone else. I just want to be accepted for what I am.

     

Reply
  • Thankyou random.  As usual, you make a lot of sense and put things very succinctly.

    Your final paragraph is exactly right.  We all need support and get to have a 'normal' life.  I cannot say I ever thought I didn't have a 'normal' life.  It was 'normal' for me, I didn't know anything else.

    However, in retrospect, my life was not 'normal'.  I had a period of twenty five years with no paid employment.  I did go on some government schemes supposedly to help me find work but these were not geared for someone like me.  And as I was married and my wife was drawing a wage deemed sufficient to support me I was in that position that the jobcentre was not that bothered about me, I wTas drawing no wage, drawing no benefit except my 'stamp'.  And not getting the self confidence that a job gives you.  I was 47 before I got a proper full time job.

    My ASD must have been a major contributor to this.  Difficulty with interviews, accusations from others that I was being 'negative' all the time me wondering why.  And no matter how hard I tried I could not change things.

    Things are no different now though.  Because no one can tell just by looking whether someone is autistic and because society wants every one to conform, this makes things difficult for those who don't know why we behave the way we do.  Authority figures whether they are job interviewers, managers, people in authority or government officials or whatever do not ever think "Perhaps that person is on the autistic spectrum", they just see someone who seems to have a difficulty with communication, someone who is trying to hide something (lack of eye contact), someone who is being deliberately awkward and someone who is socially inept.  And although they may know of the condition in younger people, from adulthood you are increasingly on your own.

    Yes, there are coping mechanisms and adaptive behavour that can be learned, but my life then started being one great act.  I was just in a world where I had to appear on a vast stage, the parts being many according to what the situation I was in.  But this acting is not without its problems.  Sometimes I thought I was in one play, only to enter the stage door to find out I hadn't learned the right part.  And it is in those circumstances that anxiety occurs.  A situation in which I had no control, and not knowing what was coming next.  Others think the odd behaviour is either funny or being deliberately obstructive. 

    If anyone is concerned about the thought they may be on the spectrum and are wondering whether to have a diagnosis, I would say go for it.  If you cannot get the diagnosis on the NHS or cannot wait the time, consider going private like I had to.  It was money I could ill afford but it has gone a long way to me understanding the person I am. 

    And I do believe we need to lobby our members of parliament, make our position known, publicise how important having a diagnosis is, write to newspapers, broadcasting organisations and other publications.  And make it known that autism is for life, it affects all ages and it is always in the background ready to cause problems when the opportunity arises. 

    And despite this, I would not want to be anyone else. I just want to be accepted for what I am.

     

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