being diagnosed in the uk?

Post Reply New Topic

I've been looking into getting a diagnosis for what I consider to be autism, but I'm worried about how things would change if I did.
If it were the case that I am autistic, it would explain a lot and hopefully help me to understand my behaviour. I spoke to a helpline and I was told that you have to tell your employer about a diagnosis in the uk. This worries me, because they might see me as different, I've spent so long trying to blend in, and make myself fit in that that's the last thing I want.
I guess I'm not sure if there is any real point to getting diagnosed, I've read about support groups for people with autism, but I can't imagine going to something like that, I dread events like that weeks in advance. Just the thought of making small talk with people I don't know for a whole day with no escape would be torture. I tend to only be able to talk well to people when I'm ranting about my area of expertise, music. When I was younger I didn't know how to respond to social situations at all, I'd be totally silent while everyone around me was having 'fun', people would ask me if I was ok, but I didn't know how to say anything so I'd just smile trying to be polite. parties seemed like the most pointless things in the world, I don't understand how anyone could enjoy that. ..

Getting a diagnosis is good but its nice to really know, rather than having that nagging feeling that you may be wrong. Also situations may arise where having a diagnosis would be a good thing. Don't know about the rules in the UK, but I doubt you HAVE to disclose to your employer, not unless you are seeking accomodation on the basis of that diagnosis.

I may be wrong about this, so don't take my word as legal advice, but as far as I know there is no law or regulation that forces you to disclose your autism diagnosis to an employer. I gather that it's completely at your own discretion whether or not to choose to tell a boss, co-worker, etc.

Some people never disclose. Others disclose to an employer or for university/college in order to be granted certain reasonable accomodations that would help them perform better at work, for example if you have to explain that the reason you need a quieter office space, or to be away from harsh lighting or noise, is because your autism makes you less able to cope with those conditions. Then I believe your employer is legally bound to make attempts to meet those needs as long as they are "reasonable accomodations." But you are under no legal obligation to reveal your diagnosis unless you need to obtain this kind of help in the workplace, or you need benefit assistance etc.

This is as far as I'm aware, anyway.

If you obtain a private diagnosis instead of NHS, the privacy of your diagnosis is even more under your control, although again I'm not sure but if you ever need benefits or other more formal, legal assistance due to your autism, I gather only the NHS diagnosis is accepted as qualifying you, but I'm not 100% sure.

Hi quietowl. I'm in the UK and work with young adults on the spectrum, and as far as I know there is no legal obligation to tell your employer about a diagnosis for ASD or any other condition. Of course, as BirdInFlight rightly points out, if you were to want some form of support in your job or allowances to be made, then you would almost certainly need to disclose - unless there was a sympathetic manager or other colleague who you could tell informally. But that isn't very likely. You could ring the National Autistic Society, and I think they will confirm that you are not obliged to inform your employer, but if you do then the legal onus is on them to accommodate your needs. There are also agencies who act as an intermediary between employers and people with ASD to ensure that both sides are happy.

I'm currently going through diagnosis via the NHS and am likely to be Broader Autism Phenotype - i.e: an NT with Aspie traits. There is no denying that, as a process, it has its traumatic sides, but the advantage is that it should take away those nagging doubts that you talk about. As for support groups, these can be very helpful. I volunteer with a social group for people with AS/HFA, and the members (who run the group themselves) thoroughly enjoy it and make good friends - but there is no obligation to stay for long or to even talk to anyone, people's individual needs are respected. Perhaps you could look for a group in your area.

Since we're both in the UK, if you'd like to have a chat then by all means send me a pm.

You don't have to tell an employer.

Employers aren't legally allowed to discriminate against you if you do, even in the hiring process. Of course, they might quietly do so anyway, but many actively try not to.

If you disclose, you are legally entitled to reasonable accommodations, both in the hiring process and in day-to-day employment.

If you're facing difficulties in one way or another and require accommodations, get yourself tested. If you don't feel you need anything different and you're not sure what it'd bring for you, don't. If you're doing well and want to keep at it there's no reason to change that, but if your situation changes (and obviously the autistic brain doesn't like change) and you're in need of extra support then you can always get tested. Just what I think anyway.

To the best of my knowledge, there are only a handful of organisations in the UK that require applicants and/or employees to disclose their disabilities, and are permitted to discriminate on the basis of disabilities and/or mental disorders. The UK military (or armed forces) are the only ones I know of who will not accept people who have autism and/or Asperger's syndrome. The intelligence agencies (MI5, MI6/SIS, and GCHQ) will not employ people who have ever received a diagnosis of bipolar disorder and/or schizophrenia, but they will employ people with autism or Asperger's syndrome (provided you can fulfil the requirements of the job).

Some of the information and links in the following old thread may also be helpful:
"Guidance for UK Assessment & Diagnosis through the NHS"
http://www.wrongplanet.net/postt227311.html

Dear Quietowl, I'm recently dx'd in the NW of England, feel free to pm me if you wish.

I'm being diagnosed in East UK, but it may be through CAHMS rather than the adult system depending on how fast their decision is processed. If they decide in less than a month, CAHMS, more than a month then the adult system (whatever that is, no idea).

To be honest, I found the whole process absolutely horrible, I decided to take a break from thinking about it. It was affecting me really badly, frustration and I felt that my 'symptoms' were getting much worse. I find it amazing that a health professional could dismiss my concerns after 30 seconds, despite the fact that I'm nearly 30 years old, I've been working on not showing my intense discomfort in situations for my whole life! After 30 seconds she said I seem normal, I could have cried. It's like, I'm not going to melt down and turn catatonic in 30seconds am I??! ! the few weeks after were hell inside my head. I've kind of come to terms with the fact that that's the end of the road for me, I'm not putting myself through that again. But it really shocked me, and I feel for anyone else who might be in a similar position. I have to say this site really helps to know I'm not alone. So, thankyou all

Dang.

I would say a diagnosis will not really do anything for you unless you are requesting some accommodation or benefits of some sort. Telling any employers will hinder your progress career wise- no matter how what they tell you about being anti-discriminatory. It's all a facade.

I would say, only get diagnosed if you feel like it will help you be at peace in your own mind. However, I think it is really quite weird how they would go about diagnosing an adult on the AS since they have learned how to cope and hide their true nature for most of their lives. If YOU feel like you have it and that there is something different about you, then that is all you really need to know.

Hope this helps.

Hello Quietowl,
You are definitely not alone. Trying to get a referral in the UK is similar to playing the lottery. Unless you have a spare £2000+ burning a hole in your pocket. You are still the same person, with or without the diagnosis, and there's lots of support here and on the web if you need it.
Best wishes, NW.

...Have to tell ?

Hi Quietowl

I'm also in the UK and my GP said I don't have to tell my employer.

I agree though that if you don't tell you can't use it if, say you needed to stop them firing you due to a meltdown.

I'm not out at work though I say things to describe me - I'm often self deprecating about my pedant tendencies! And joke about talking too much.

I was 41 when diagnosed in the Summer and also found the process difficult and feel it acserbated my symptoms.

I was diagnosed (in NE Scotland) privately and it cost less than £500. You get what you pay for though and I suspect have other related orders but the dx didn't go there.

It is tough processing it all - best of luck and like the others you are welcome to PM me.

I also went to my first meetup a couple of weeks ago and it was great to meet others on the spectrum. If you aren't on Asievillage yet it's worth having a look. There are lots of lovely and supportive people on there too (as well as here of course!)

hello
uk here and was diagnosed last year, south east of england.
best thing for me about the formal diagnosis was that i COULD tell my employer- this led to the reasonable adjustments i needed to be able to carry on in my job (wouldnt be there by now, for sure, would have melted down/been sacked)....and also you have the law on your side from the equalties act 2010 which means that if you suffered any discrimination, your employer would have to declare that they knew of your condition.
another good thing is that my absences are not monitored on the same absence monitoring thing which can lead to disciplinary as it is linked to a disability and i've had a fair bit of time off which again i'm sure i would have been sacked for my now.
i also was awarded a grant from access to work which has given me a support worker at work now.

the downside of this is that i still face discrimination and harrassment every day in my work place from co workers that fail to understand and think i'm making the whole thing up which is devastating for me having fought so hard to get through life and try to seem NT.... it has backfired but i am making peace that they are all ignorant and it's not my problem.