Diagnosis: What to Consider

SEEKING A DIAGNOSIS – ISSUES & REPERCUSSIONS

Background

Martin is 37 and was diagnosed with Asperger syndrome when 30. University educated with a degree in Law, he originally sought a legal career but was unable to realise his ambition.

Instead, he commenced work with a Local Authority in London, an environment he found acceptable and in a role he was initially successful within. He did not at first divulge his condition.

However, after being seconded to a special project he encountered difficulties, which set him on a path that concluded with him successfully prosecuting the Authority under the Disability Discrimination Act. The process meant his having AS becoming common knowledge.

Exact details in this case study have been changed for confidentiality reasons. The views expressed are personal, for illustrative purposes only and should not be related, or automatically applied to, other situations or scenarios.

Case Study

I was diagnosed with having Asperger Syndrome (AS) seven years ago at the age of 30.

My motivation for seeking a diagnosis resulted from relationship issues, which I had been experiencing both inside and outside of work. Like many people with AS, I had a conscious feeling of being “different” and I was not responding effectively to the person-centred counselling (PCC) I had been undergoing.

During the PCC I was unaware of my AS. However, the Counsellor whom I was seeing mentioned my symptoms to his supervisor who thought they reflected those of somebody who had the condition.

As a result, a process was instigated that led to a formal diagnosis. This initially involved my GP who was very helpful, but who had to battle with my local NHS Trust who were initially reluctant to pay for a referral to another Trust with personnel who specialised in AS.

No concrete actions arose out of my diagnosis. As a consequence of it, however, my GP recommended – and I commenced – a course of Cognitive Behavioural Therapy. This involved describing specific events that had occurred to me, with the therapist then suggesting ways of responding and coping better. Though useful, the irregularity of the sessions (once every six weeks) were, in my opinion and experience, insufficient to realise any meaningful, long-term, beneficial changes in relation to the ingrained symptoms of Asperger.

I was also to learn that, compared to other adults, I was lucky to even get a diagnosis on the NHS, let alone any therapy. Compared to the early interventions, support and intensive therapies which are available for children and teenagers, NHS provision for adults with AS is woefully inadequate.

For the first few years after my diagnosis I was highly conscious of having being diagnosed, and of being “labelled” with the condition Asperger syndrome. I told very few people during this time as I was personally wary of doing so due to the response I might receive. I was conscious of acquiring a – negative – personal stigma. Although I thought most people would not view me detrimentally if I had been diagnosed with Diabetes, I felt pretty certain that would not be the case with a mental condition such as AS. Revealing my condition to others presented a risk, particularly in an organisational/business context where trust could not be guaranteed.

I have since found out that when I tell people who I get on with anyway, they are perfectly reasonable about it, whereas if people who dislike me find out about my AS they are far less understanding. Compared to comments such as “thanks M, that’s very useful” I have had “don’t think you can use this as an excuse to justify bad behaviour” or “can’t you take medication for it?” In no case has anyone who disliked me beforehandchanged their attitude towards me as a result of subsequently learning of my AS.

My current role within a London Borough Council is the least stressful environment that I have worked in from an organisational perspective. Because of this, I did not feel any need to inform my employer about my condition initially and did not want to do anything that I felt could rock the boat by being a catalyst for difficulties: e.g. people holding my condition against me or sensing that I was susceptible to being taken advantage of.

However, a series of incidents with colleagues led me to divulging my condition to my employer. My manager had taken me aside and criticised me for alleged rudeness to colleagues in a way which gave me a strong feeling of ‘déjà vu’ from previous jobs. To give myself some protection from what I thought might follow i.e. getting the sack for being rude to colleagues, I felt it prudent to formally notify the Council (via Occupational Health) of my condition.

The reaction of my boss, with whom I had often had a complex working relationship, was not particularly positive. Instead, his response was one of informing me that I would not be able to use this as an excuse for bad behaviour! In his view, my behaviour towards my colleagues (tones of voice, body language and facial expressions) was bad even though it centred on how I said things rather than what I said. This manager’s stated position was and is that I am at fault by not doing more to combat my condition.

He did, however, make some form of positive response by setting up a series of three-way counselling meetings between him, Occupational Health and me. During these meetings, we would discuss and resolve issues that had cropped up. On the face of things, this did assist our working relationship to an extent.

I was then seconded to a one-off project which necessitated working with colleagues from other departments and – more importantly – outside consultants. I enjoyed this work and felt that I was making a very important and worthwhile contribution.

However, difficulties arose when the consultants accused me of having a bad attitude. When asked for elaboration, one of them replied “I can’t put my finger on anything specific – it’s just a general feeling.” This set in motion a chain of events which led to further difficulties with colleagues, to another manager picking on me and humiliating me and to my ultimately resigning from this project and returning to my old post in Oct 2003. All of these difficulties were due to my AS.

Subsequently the consultants and the manager concerned resigned and the job on this project was renamed and re-advertised in Feb 2004. When I applied to rejoin the project, I was turned down without even being granted an interview. This led to my bringing a case of disability discrimination against my employers, which I won.

I have learnt a number of important lessons from my experience, ones which have enabled self-reflection and the instigation and implementation of ameliorative actions.

Firstly, I personally would have informed my employer about my condition sooner. The decision as to whether or not to do so is very much a personal one and should be determined by each individual and related personal circumstance. If, for example, one feels uncomfortable about doing so, or has concerns that the aftermath may be stressful or detrimental, then refraining from doing so may be a better option. My personal circumstances were that I joined my present employer before being diagnosed with AS; I am not looking forward to the next time I apply for a job and have to disclose my AS on the application form.

In my case, I believe that doing so eased personal anxiety. It also motivated my employer to act to meet my needs.

I do not regret bringing the action. However, I wish I had not been in the position of having to do so. I would have preferred to have got along with my employer and not had to endure a fractious relationship with them. This would very much have been better from my personal perspective. I would like to say that with hindsight I could have acted in a different way and not brought this situation about, but in all honesty I believe the only way I could have acted differently would have been to demand more specific reasonable adjustments (like not criticising me for my attitude), to emphasise more of a connection between my AS and the way I was being treated and to record all this in writing. This however would only have bolstered the later Tribunal case I bought; I do not believe it would have made any difference to my treatment. I do not believe there was anything I could have done to help that. It is impossible to correct a perceived bad attitude when told it is nothing specific.

Avoiding formal recourse would also have lessened the impression of being confrontational – which inevitably one is regarded as, as a result – or of such recourse being linked and associated to my condition. Having AS doesn’t necessarily automatically mean having to revert to formal routes to resolve contentious issues. However, it does make informal resolution far harder as most people with AS – and I am no exception – lack the necessary inter-personal skills to handle conflict.

However, being ultimately proved right and justified, and having a feeling of not having stood back and allowed others to get away with treating me unfairly, has been hugely important to me. Having the sense of fairness and justice inherent within the AS personality trait meant that standing my ground was justifiable. Doing so has also raised my self-confidence and willingness to stand up for myself – important personal development facets in the corporate world.

In addition, the Tribunal also explained certain points that would need to be fulfilled to secure a more comprehensive win in the future. When I brought the case, against my lawyers’ advice I complained not only about being turned down for the new job but also about the bullying and various other things. I actually won only on the being turned down for the job part – a relatively minor point. I fought the claim on all the things I was aggrieved about because, in my mind at least, all these things were due to my AS.

However, I quickly found out that it is not enough to show that one has AS and that one has been treated badly; one must show that one has AS and that one has been treated badly because of the AS. To stand a better chance of winning such a case in the future, I would emphasise more of a connection between my AS and the way I was being treated and I would record all this in writing. I would also ensure that all the people I dealt with knew I had AS and would explain to them exactly what its effects were and would demand more specific reasonable adjustments. I found the actual win, plus the Tribunal’s advice on how to win on all the other things in the future helpful and, overall, the outcome has increased my feeling of protection, which has reduced my level of anxiety.

However, the action has to a degree inhibited my ambition. Being labelled as having a disability – and more pertinently having a heightened conscious awareness of having one – has made me more wary of seeking more senior roles and positions where I could possibly be more exposed. Simply moving to find a better working environment is, I feel, less of a realistic option.

Against this there have also been benefits. Prior to the diagnosis I could always point to reasons why relationship difficulties were the fault of others and why there was a persistent theme of others picking on me because of personal dislike. Since then I have become more self-aware and have identified steps that have improved my relations with others. One of these is telling people about my AS at the outset, before they have had a chance to form any opinion of me. Another is to be a little more forgiving of those who pick up on the symptoms of my AS, and to be a little more aware of its symptoms. In this way, I can do a little to mitigate the specific things that may cause difficulty.

Going forward, a key issue is the need to consider whether I tell a future, prospective employer either immediately during any application process or after. With the former, there is the perceived and actual risk that it could be used against me; with the latter that I would be regarded as less than truthful having not done so earlier – something not naturally easy for someone with Asperger of course! Being known as someone who has sought judgement in a tribunal also runs the risk of being marked out as a troublemaker.

All these issues mean that the most important lesson I have taken from my experience is that the end result of any disagreement needs to be resolution not retribution. Having “won” a formal case has meant I secured a feeling of satisfaction and one of having “got them”.

Though I personally feel justified going down this path given the wrong I felt had been done towards me, this I have learned, is not entirely beneficial going forward for some the reasons outlined above.

It should be a matter of last resort if every other avenue is explored and every effort made to avoid it so that the decision can be really explained and justified in the future. What is morally justifiable may not be practically ideal in a business context meaning that compromise or giving way may be the better option.

Finally, legal advice should always be sought before embarking on (or suggesting) any course of legal action and, if my own experience is any indication, the discrimination complained of needs to be very explicit. I derive no comfort from knowing that I basically won my case only because a director was injudicious enough to go into print about his prejudices towards ‘someone with my disability’.

Managing with Asperger Syndrome