getting a formal diagnosis - Good or Bad?
Submitted by tinminer on Wed, 06/20/2007 - 21:50.
I instigated a private medical diagnosis for myself in August 2005.
I can honestly say it was worth the expense, and put myself at ease, and was in some ways the culmination of a few years of a voyage of discovery about myself.
I have always known I was different from most of my peers (e.g. at school, even Primary), but it was not until I got that diagnosis that I had official confirmation.
How was it for everyone else?
Tinminer
diagnosis does help
I was diagnosed with AS in July 2007. It has helped me alot and will in the future. In my experience it is only when you get officially diagnosed that you get help and because of my experiences I believe that is the way it should be. I didn't know what AS was 12 months ago, I never self- diagnosed even though it was clear I had AS as soon as I knew about it. From my experiences, of the diagnosis process ( extensive back ground checks, multiple GP visits, sitting with your mother and telling her you see her as 'just another person, just a friendly one', etc. etc.) of the last 11 months I would say that no-one should assume they have AS because it's a bigger thing than reading it in a book and thinking 'that suits me'. I recently informed my sister's and the stress of it has been crushing. Thats when I realised that self-diagnosis is worthless.
Relation to Work
Michael
Good to hear from you again and to learn that your formal diagnosis has helped you.
Would be interesting to hear how you feel this has impacted upon your work situation? Have you divulged your condition since being formally diagnosed and, if so, what has been the impact of doing so?
It would be worthwhile hearing of any benefits that have you have accrued in the workplace as a result.
Has it enabled HR to provide any specific support mechanisms?
Malcolm
Employers and work
I have informed my employer and it has been positive.
The important thing to remember is as a disabled employee you can ask for 'reasonable adjustments'. This is a very broad term so I would recommend anyone seeking to do this to contact the National Autistic Society for advice about your specific circumstances.
AS diagnosis
I was diagnosed with AS back in November of 2001 after having symptoms of it since I was 4 years old. At the time the Psychiarist at the time advised me not to mention anything about my AS, he did not even want to give me anything in writing about it. He felt despite my problems that I was very high functioning for someone with AS and it would be difficult for me to explain the disorder.
I have only told a few people at work about my AS. No one questioned me about it and they show some understanding when I mentioned it to them but things did not change. Things did not get better or even worse. There are some people in work and even in my life that I would probably never mention my AS for various reasons.
I think disclosing your AS depends on the situation. There are some people who just don't care, some people just don't understand what it is, some people might disrespect, some people might actually feel bad and some people might not believe you. Be cautious and think about it. That's my advice.
When to Refer
I think that all of this is very sound.
Leading on form the overall points of whether to seek a diagnosis and telling your organisation/work colleagues, is whether you "use" the diagnosis when specific difficulties arise.
A number of people have told me that the response that they have received is something along the lines of "don't think that you can use this as an excuse for poor performance or not doing something"!
I think one has to guard carefully against this and - again - make a judgement based on specific circumstances. A lot will depend on the manager in question and ones' relationship with them.
However, there will be times when it is appropriate to say that "I am struggling or cannot do this". I can remember a time at the BBC when I had a meltdown over writing up a project: I got stressed and just couldn't see the wood from the trees.
In this situation I wish I had asked a colleague to help. I couldn't mention my Asperger because I had never divulged it to anyone, but asking someone would have been a legitimate tactic. (typically those with Asperger don't do this of course!).
My only other thought on this matter is that this approach should only be instigated as a last resort. Use it as little as possible and try not to make it common pratice.
Personal Circumstances
I think that this is very much down to the individual and personal circumstances, especially in a work context.
Personally, I have never felt the need for an official diagnosis. I have been unofficially diagnosed (via the Cambridge Autism Research Centre's online questionnaire process) but that has given me enough information personally.
I know what I am, what areas I need to address and believe that I am doing them effectively. The more I know and overcome the more I progress. Its hugely self-confidence building.
I think that who you work for and the type of context is also critical. I would have thought that working in - say - the Police, would mean serious consideration about divulgence; working in a religious context less so.
There are some managers I simply wouldn't feel happy even discussing the issues with, others where I think it would be beneficial.
My ex-boss at the BBC fell into the latter category. He was always supportive, knew why I acted in some ways and assisted as a result.
I think that it is a case of evaluating each circumstance carefully and acting on personal intuition. I think you know when something is right.
to Tell or not to tell
Getting an official diagnosis was certainly one of my better life decisions. It isn't for everyone, as Malcolm shows. However, in my case, I first researched autism and Asperger's syndrome on behalf of my youngest son, who had had difficulties at school from within an hour of his first day. By the time he was 7, he had been permanently excluded from 3 infant schools. He spent 5 years at a special school for children with behavioural, social and emotional problems. Why they didn't look at wider causes for his frequent bad behaviour when he started is baffling but they were very good with him and Martin made excellent progress. It had been mentioned that he had traits of AS a few times and, at an annual review meeting for his Statement of Special Educational needs, I expressed a request for Martin to be diagnosed and set about learning more about autism. It was quite a shock to realise that I was highly likely to have AS myself. I genned up and went to the GP. The 6 month wait for my appointment was agony as I imagined every conceivable alternative to having AS, including munchausen syndrome.
I got my diagnosis and informed school and suggested a high probability of Asperger's in Martin. Getting my own diagnosis helped me to be heard at last and Martin got his own in August last year. My eldest son is currently part way through getting diagnosed.
As a rule of thumb, if knowing for sure, officially, that you have an ASD is helpful to yourself personally or within your family, then go ahead and do it. It can be traumatic and I know people who have dropped out.
An official diagnosis opens the possibility of further help. I am starting university in September and I am able to get special help and support. Okay, I got by for 44 years but I don't believe in suffering for the sake of it.
I have also been a reasearch subject at different universities around the country, which has only been possible because of my diagnosis. I get paid but, more importantly, it helps to broaden professional understanding of our complexities. In the future, other people may not have to suffer as I and other people I know have.
Laurie
My Doctor did advise me not
My Doctor did advise me not to try and talk to work about AS on the basis that they ( and people generally ) would not understand/ comprehend what I was saying. I did try to talk to managers about AS, despite her advice, but it was a mistake and the Doctor was right. The managers I spoke to listened but didn't want to hear. I suspect it was too much for them. It is important for me to have an official diagnosis as the issues of anxiety and lack of confidence around people I have need explaining. It will not be an easy day though but I hope it will be a difficult start to a more positive future. I think my advice to others in my position would be to talk to understanding medical people and not managers ( except where work is effected/ causing problems ). I think AS is such a personal thing that discussing it with managers in my case was a mistake.
What I do think would be a good idea would be to write to your HR department head directly so that they have something on file about it. That is what I now plan to do. That way the company will know without anyone I work with regularly knowing. However I work for a large, multi site company and so I couldn't comment on the circumstances within a smaller single site firm.
Getting a Formal Diagnosis
I also work for a large, multi site, multi national, company. When I joined this team, I gave my new manager loads of information, as I did on my previous teams. It didn't make any difference. I hate this team. My managers are all Essex boys and I can't figure them out. I've never had much to do with southerners but they work differently: all big teeth and shiny cufflinks, so to speak and I never know whether or not they are being sincere. I wish I hadn't told them now. Another time, I'll do as you are planning and just slip a note under the door of HR on the offchance that something goes horribly wrong, in an autistic way, and we need the back up.
Laurie
Is it possible to get moved
Is it possible to get moved to another team away from these guys? I don't trust people with acres of shiny artificially whitened teeth. They remind me too much of game show hosts and bad used car salespeople.
I agree very much with
I agree very much with Malcolm - for a high functioning adult with a working career, a diagnosis is a two-edged sword. My life experiences have taught me to err on the cynical side, hence, particularly for professional and managerial situations, I suggest - never assume you won't be subtly discriminated against or 'got rid of' for having an awkward disability, if you volunteer your AS status. Even when people are au fait with the condition and don't intend to discriminate, they can patronise you, eg "Let's not have X in on this, he might not cope well".
I told the near-psychopathic a-hole of a general manager in my last job I had Aspergers. He seemed to confuse it with Klinefelter's (XXY) syndrome, that makes males ultra-masculine and potentially dangerous.
A lot of good that was.
Peter
I have found that when I do
I have found that when I do tell my bosses, it is good to go to them armed with some papers and website showing the positives of AS. It helps them to know I think exactly what it is. Then I talk to them about some of the challenges I have personally faced and how I have either overcame them or learned and moved on. Then we can talk about my strengths and weaknesses and plan for different duties or support systems accordingly. Of course there will always be those that are scared or ignorant and don't want to work with someone that has 'mental problems' or has 'a disability'. I have told my bosses that I don't view this as a hinderance, but that I do have some special needs, and that I really want to be treated like eveyone else.
disclosure - not an option for others!
I just would like to add, as a thought, the experiences of other disabled folk.
We have a choice whether to 'out' ourselves to our employers and others, or not, and I can see the arguments both for and against doing that.
I think it is worth considering the fact that we, with AS, have the luxury of a choice.
Think for a minute.
You are totally confined wheelchair.
You go to a job interview.
The interviewer asks you have you a recognised disability, and how does it affect you?
You cannot say that you are not disabled! You have to say that you have.
You have no choice in the matter.