When AS is not "significant impairment"

longman said:

I would like to introduce a thread that deals with AS/ASD with lesser impairment - when those diagnosed do not strictly meet the requirement of "significant impairment". These are the people with ASD/AS who are able to manage their lives or who have not been successful in claiming support or whose access to support is being challenged under the new constraints.

Like most people (I think) I tend to look at the problems related to being on the spectrum by the way they relate to me.  I was able to work up  to retirement and have a successful personal relationship but I feel it would have been easier if I had had the support of a Behavioural Therapist to help me see what I needed to do (or not do) to deal with living in a NT world.  However, up to the last couple of years until I left work I wasn't aware of AS in adults.

 Now I am retired (and have a dx) a BT might still be a help, since I'm not good in social situations and - apart from my partner - have only three real friends but I can understand it if there is just not sufficient money available for me to get this support.    

Hi Longman,

I would like to assure you that I would never quote anyone directly without permission.  I asked permission to quote True colour and Hope, because I am aware that it would be inappropriate to do so without permission.  I hope you continue to feel safe to express your thoughts in this venue.

I'd rather not be quoted for anything I've said in this thread. I was confused and deeply concerned about the issues raised.

Caro, I've emailed you to confirm that I'm happy for you to quote from some of my statements on this thread.

Hi again,

I'm glad you seem to share my view Longman, I am not a regular visitor here and tend to dip in and out.  Although I subscribe to discussions that I contribute to the feature does not seem to work for me so I don't know when there have been further contributions.

I agree True Colours that research into how effective help for people diagnosed with ASC is would be helpful.  I think a comparision with those who are undiagnosed and unsupported would be difficult as they would be people who have subsequently been diagnosed and thus would have been operating in a different employment/educational context.

I would also like to ask True Colours and Hope if I could quote some of your statements from this thread.  I give some training about autism and it is good sometimes to be able to quote statements from those on the spectrum - I  tried to contact you outside of this forum but there is no way to do this.

*edited by Jim V - mod to remove email. 

Caro said:

I think that the premise that AS is a "lesser impairement" if someone is in employment, or superficially "normal" is unhelpful.  It seems to me the categorisation on a scale of less or more is less useful that thinking of differenct challenges and strenghts.  As mentioned by Hope many with AS pay a significant price trying to appear 'less impaired" or normal, and would be more inclusive to try and understand how each person could be best and most approrpiately accomodated and able to work to their strenghts rather than placing ourselves on a "less" vs "more" type continuum

It would surely be useful if research were to be carried out into the way adults with AS who were diagnosed when young and received support cope with the adult world of work/relationships compared with those who were undiagnosed and unsupported.  It would also be interesting to know if those who received help from childhood are still bedevilled by the chronic anxiety which seems an intrinsic  part of AS.

It's true, as Hope says, that many with AS pay a significant price by trying to appear "less impaired" or normal but that is surely true of any person with a disability - mental or physical.  Like many with AS I found it a terrible strain  to leave the house each day to go to work and it's not easy, either, to learn all the copying/acting/ faking necessary to interact successfully with "normal" colleagues and the whole thing might have been quicker - and less stressful - with some support from a professional who might have made the process quicker and easier.

I also stress that there is currently a difficulty for many people on the spectrum getting benefits and DLA under Government Review policies.

There does seem to be an important issue about "when is AS not a significant impairment". If we don't debate this fair mindedly how can we criticise government for turning away peploe claiming support for ASD?

Also read the discussion sequence under Living on the Spectrum - re people with ASD being disabled. There was a lot of contention therein that people who had any kind of success in their lives couldn't possibly be "significantly impaired".

I'm glad that we seem to have got back to the idea that if people are diagnosed with an ASD it is because they have some recognised disability even if that doesn't clearly fit the requirements to claim for having a disability. As we know people are getting declined support because the NT establishment decides there's no case.

I don't think it is fair to make out that there is over-diagnosis going on, unless some evidence can be presented (other than a personal opinion whether a relative's ADHD diagnosis was bought).

But I guess the debate could go on and on.

Merry Christmas everyone.

Hi Caro, I take your point entirely. However this thread was created out of frustration with another thread about private diagnosis, during which certain arguments were put forward about whether people who secured employment or were successful had "real" aspergers.

Strangely certain of the previous discussants now appear to hold a completely different view in this thread 

I would agree the use of "lesser impairment" is unfortunate. I was trying to create a space where those being termed "borderline" in the other thread could discuss their issues.

Seems I cannot win. But I was just trying to create a more balanced debate.

I think that the premise that AS is a "lesser impairement" if someone is in employment, or superficially "normal" is unhelpful.  It seems to me the categorisation on a scale of less or more is less useful that thinking of differenct challenges and strenghts.  As mentioned by Hope many with AS pay a significant price trying to appear 'less impaired" or normal, and would be more inclusive to try and understand how each person could be best and most approrpiately accomodated and able to work to their strenghts rather than placing ourselves on a "less" vs "more" type continuum.

What often gets lost in the research is the manifold different ways that AS can present itself: the individual  gets lost in the category. AS  as a medical condition is overlaid by a unique personality which could determine how the person copes with their AS and how obvious their symptoms are. For example, I am naturally quite an extrovert person, although this was not obvious when I was at school - I was mislabeled 'shy'.  But I do enjoy social contact, the caveat being that it is on my terms and that I remain in control. I cannot deal with spontaneous, informal social interactions which is why making friends is so difficult despite the fact that I can assume a social persona when I am in a formal and/or one to one social situation.  It is the hidden dynamics of social discourse, the way in whch most people automatically move with the flow, whereas the hidden meanings in the social situation evade my grasp.

On the other hand, I am very confident and sure of myself whenever I am centre stage delivering a lecture, so long as I have planned what I am going to say. This part of me hardly deserves to be called 'shy', but when I was at school,  I was never given any opportunity to deliver speeches to the class, and my confidence was dashed. It is only recently that I have learnt what gives me enjoyment and what is best left alone.

I think that my out-going personality, which is camouflaged beneath a surface exterior of chronic anxiety, has motivated me to learn as best I can the social rules and to gain insight into my condition. I have intellectually grasped how to pass as NT, but people don't see the hard work that has gone into this and I seldom get credit. Instead I am often told that my AS is 'mild', which it is not really because  my need for routine and my anxiety prevents me from always doing what I want to do. It is simply that my personality and perseverence - and perhaps my late diagnosis - have made me keen to ape normality, but at a sizeable emotional cost.

I'm always surprised that that the researchers and doctors working in the autism field show so little interest in those late diagnosed, since one would have thought  that the experiences of the latter would be important in understanding what is a very complex syndrome.  Maybe, as more and more come forward and request (and hopefully) receive diagnosis more attention will be paid to them.

Unfortunately this resentment of adult diagnosis persists in many guises, and often emmanates from parents groups, who are very energetic on behalf of members' children with AS, but many of them lack strategies for those children when older. In some you cannot usually be an adult member with aspergers unless your parents are members.

I think it is most unfortunate as we need to discover how to improve the chances of adults on the spectrum to lead fufilling lives. The experiences of those not diagnosed until adulthood may be valuable in understanding longer term outcomes.

Childhood diagnosis, when support is successfully accessed, supposedly cushions the child from at least some of the pressures those not diagnosed had to face. However we now have insufficient reference data for unsupported individuals, apart from in books by people diagnosed late.

To understand how to help all adults on the spectrum cannot surely be achieved without including the experiences of those late diagnosed.

longman said:

...What makes it difficult for AS people in the workplace though is the NT obsession with difference. This has to do with hierarchy and each individual's perception of their place in the hierarchy.  The workplace is not greatly removed from school.

They get worried if one member of the group might not play along with every aspect of the "game", and they seem bound to explore the extent of any weakness...

..The NT curiosity about anyone who might not fit seems to be obsessive. I frequently had complaints raised that I was unsuited to being in the team, in many different job situations. It never came to anything, as they couldn't produce any meaningful grievance. But the process was disruptive and uncomfortable.

Hence I often wonder how far people in the spectrum's experience of insurmountable difficulty in the workplace, which forces them to quit, or gets them dismissed, is that NT colleagues/workmates cannot let difference rest. Of course if the AS disability is known, they wont put themselves at risk by being openly prejudiced. But they find ways.

I know exactly what you mean but I'm not sure how it can be dealt with - except by faking and/or copying responses that hide the differences between those on  and off the spectrum.  I didn't like socializing with my colleagues outside office hours.  Once the working day ended I wanted out but on a number of occasions it was made clear to me by my boss that I upset my colleagues by being (as he put it) "stand offish".  I never did understand why this should upset them. I'm only thankful that I escaped those appalling and compulsory "bonding" weekends that became so popular after I retired.

With regard to the question of support for those diagnosed in adulthood, I've noticed on another AS webside that there are many parents of autistic children who resent the idea of diverting funds to those who have been diagnosed as adults.  One poster put it quite bluntly.  He believed that anyone who was in work - and had a well-paid and prestigious job - shouldn't seek NHS funded support   nor ask for "special treatment" in certain areas of their working life which caused them stress since this might cause prejudice and difficulties for young people trying to find work.   

Sorry to be so snappy with my last posting. I had got too involved with another thread and got rather down about it.

I agree it is about finding a route through internal relations in the workplace, by building up what you can do, and strategising to minimise or evade what you cannot, assuming they make it easy for you to make the distinctions. There's an NT obsession with "pulling your weight" which often focuses on all the wrong things.

What makes it difficult for AS people in the workplace though is the NT obsession with difference. This has to do with hierarchy and each individual's perception of their place in the hierarchy.  The workplace is not greatly removed from school.

They get worried if one member of the group might not play along with every aspect of the "game", and they seem bound to explore the extent of any weakness.

I recall in one working environment in the early 80s, one colleague spent inordinate amounts of his day just quizzing me about what I'd do in certain situations and trying to catch me out. My difference fascinated him so much he couldn't do his job, or maybe would have found another excuse for doing nothing.

The NT curiosity about anyone who might not fit seems to be obsessive. I frequently had complaints raised that I was unsuited to being in the team, in many different job situations. It never came to anything, as they couldn't produce any meaningful grievance. But the process was disruptive and uncomfortable.

Hence I often wonder how far people in the spectrum's experience of insurmountable difficulty in the workplace, which forces them to quit, or gets them dismissed, is that NT colleagues/workmates cannot let difference rest. Of course if the AS disability is known, they wont put themselves at risk by being openly prejudiced. But they find ways.

I confess I've written a number of times to ask Government departments to look into whether this process is necessary, if it prevents many people with difficulties of one sort or another from holding down a job. But I haven't had any answers. Britain is still too geared up to "stiff upper lip"...."play the game"....don't snitch" etc to actually ever countenance how many working days are lost to this sort of behaviour.

"Ah I see. So everyone with "real" aspergers is condemned to dependency."

No, I'm not saying that at all - I'm just not sure what support will help the "less impaired".  Like you I survived because I had particular skills to offer but I was lucky in that I could move around and by doing this learnt what I was - and more significantly what I was not - suited for.

Checking  through "some work related issues which will not support the AS employee" on a webside relating to AS in adults I ticked the following:

1. Obligation to inter-act with co-workers.

2. Co-workers need for small-talk.

3. The lack of punctuality in their boss or co-workers.

4. Working as a  team.

5. Unanounced changes in company policy.

6. Working in an office with bright lights, background music, or phones that keep ringing.

7. Sharing an office with co-workers who keep talking with each other or on the phone.

8. Making deadlines while depending on others to contribute to the work.

9. Absence of visualized work plans or schedules.

By trial and error I was able to find work situations that suited me but this meant that jobs that were more prestigious and higher paid were not open to me and when I was younger - and less knowledgeable about my limits - these were the jobs I wanted.  My experience with counsellors/therapists in the years before I was diagnosed with AS (in fact before it was known about) is that they try to help you achieve what you think want rather than help you see what would make you happy.  

Ah I see. So everyone with "real" aspergers is condemned to dependency.

I had hoped to create a dialogue for those with lesser impairment to explore more positive solutions.

I'm not denying the "real" ASDs the rest of the site to play with.

Like it or not, we exist in an NT run society. The privilege of being able to refuse to cooperate is in your imagination True Colors.

Where people can demonstrate that disability does prevent them working will I'm sure be able to get support without question, even if it doesn't seem that easy at the moment. 

I agree I survived because I had particular skills to offer,even though I was constantly being challenged by people who claimed my face didn't fit and I should go. 25 years ago one boss was severely reprimanded for trying to get me sacked on the grounds if he didn't want my skills he should have offered me first to other departments. I spent the next year on the management floor doing competitor analysis.

So I understand what your saying. I just wish some people would stop trying to run Aspergers like a private kingdom.

But there has to be a way forwards to make it easier for those less impaired who can. 

"Those with "lesser impairment" who have had greater success in gaining employment or have been able to secure continuous or fairly continuous employment, encounter workplace issues."

The problem is that workplaces are designed for NTs.  Those with AS who can offer a particular skill and who would be difficult - or impossible -  to replace  will be tolerated by their colleagues and accommodated by their employers but those who can easily be replaced by someone who fits into the work environment will be.  That's the reality of the situation.

One of the issues I feel needs space to discuss is managing in the workplace. For many people with significant impairment, obtaining long term fulfilling employment is immensely difficult.

Those with "lesser impairment" who have had greater success in gaining employment or have been able to secure continuous or fairly continuous employment, encounter workplace issues.

Because the emphasis tends to be on getting those significantly impaired into work, the issues facing those less impaired do not get much attention.

I only know two books on employment. One is Malcolm Johnson (2005) "Managing with Asperger Syndrome" Jessica Kingsley. More recently in the Adults Speak out about Asperger Syndrome Series is Edmonds, G & Beardon, L editors (2008) "Asperger Syndrome & Employment.

I find Johnson's account of life in a sales and marketing team difficult to follow, though worth persistence. Edmonds & Beardon use the experiences of individuals with AS to explore suitable jobs, suitable work environments, applying, coping and dealing with NTs.

Aside from these I don't think enough is being done to address how abler ASD/AS individuals can prosper in the workplace.

This has become critical as the Government is putting pressure on the benefits system and making it harder to claim that someone on the spectrum cannot take on employment. Those with "lesser impairment" are often prevented from working due to the problems of fitting in.

Could this be discussed more on here, with the emphasis on people coping and managing, and getting the right advice and support.

I am not trying to detract from the needs of those with significant impairment. But I suspect many parents reading these discussions have hopes that their AS children could one day be securely employed, and perhaps their expectations are not being met by a forum that only seems to deal with the barriers facing those "significantly impaired" even in adulthood.