What happens after diagnosis in the UK?

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I’m wondering if things will be any different after I get a diagnosis. I’m really struggling with my life at the moment. I’ve been working full time since September after working part time for 5 years and not working at all for the 10 years previous to that. It’s hard and in particular my boss is hard to deal with . Some days she is ok but other days she talks to herself constantly which makes it hard for me to concentrate and sometimes she gets annoyed with me over trivial things, which causes me anxiety.

When I worked part time I could have several hours alone which I needed to gather my thoughts. I didn’t realise at the time but this was making life bearable. Now my life is unbearable. I cannot even look forward to weekends either because every other weekend my stepson is here and this causes me anxiety because I don’t like people in my home touching things and sitting on my furniture. This is an OCD thing which started about a year ago and is getting worse. I don’t mind people who I know practice good hygiene but if I find out they don’t then I don’t want them in my home. I know it would be unfair of me to expect my partner not to have his family round or for his son to make him a cup of tea but this causes me massive amounts of anxiety and because I’m having to work full time now I don’t get time to clean the house to a standard I’m happy with. I just don’t see a way out of this situation because I only have my partner, I don’t have any other family who would help me. I’m constantly worrying now what will happen to me if my partner decides to end the relationship. I split up from my childrens father a month before the millennium and since then I’ve made a total mess of my life and my childrens. My children have a very bleak future because I couldn’t cope with motherhood and I’m too childlike myself to make adult decisions.

I am looking for a part time job but because I cannot bear to travel more than a couple of miles this seems unlikely that I’ll find anything else. Even if I did chances are there would still be difficult people to deal with which causes me anxiety.
I’m looking forward to getting more support with my issues after my diagnosis but I wonder if I’m living in dreamland and nothing will change? Can anyone advise please what happens in the UK after diagnosis?

What do you think your diagnosis would change?

It won't stop your boss from being weird or quirky.

It won't address the issue with your partner and his kid. Infact, if you are as bad as you say you are, I wouldn't want my child over there. I'm sure you are in continous near melt down mode from the OCD. That isn't healthy for anyone. The stress vibes coming off your body must be incredible. I feel horrible for you. Your whole post felt like dread and panic.

I live in the states, a diagnosis for you would get you work accommodations (maybe). You wouldn't get disability because you are actually working. It wouldn't even get you any services, since it assumed you have something under your employer (mental health). And I'm guessing you have your own place, so no housing help there.

You need help for the OCD. You partner may or may not leave, and he will ways have his son in his life. That means holidays, life events, maybe grand kids, and who knows what else. Unless you totally check out of all of that, you need some coping skills more than just white knuckling it.

When I felt how you do right now, I went inpatient psych for help with my issues. Nothing slams the brakes quicker on life than that, which it sounds like you want the diagnosis to do. I don't think being diagnosed will solve any of your problems. You boss doesn't sound horribly abusive by average boss standards, the stuff with your partner...whether it is OCD or Aspergers, none of that will magically change short of him visiting his child somewhere else.

Are you in some kind of therapy?

Don't misunderstand, getting a diagnosis leads to insight, which is wonderful. My husband felt better understanding why he did things, but it the diagnosis didn't do much for his day to day living. Especially when the things weren't overt. Like you boss isn't singling you out for abuse. You knew your partner has a kid, and usually most people don't go, "Yeah me! I get to entertain someone else's kid, who I have no real relationship with every other weekend." Believe me NT's hate weird bosses and dealing with their SO's kids. It's life.

My husband has severe OCD and anxiety, until he worked on those, the Aspergers diagnosis was on the back burner. I hope your diagnosis leads you to get help for the OCD and anxiety, because who wants to feel like they are always looking for life rafts?

I'm hoping you get something like CBT/DBT which can really help with the OCD.

Wishing you the best outcome....

I'm really sorry to read about everything you're going through.

I live in England and there's a three year waiting list for a diagnosis where I am; the adult diagnosis service has only recently been set up and it's hugely oversubscribed already. I've been waiting for a year. From what I understand, there is little post-diagnosis support so I wouldn't hold out for any miracles.

Are you able to afford private therapy? If so, I'd recommend contacting the national autistic society and asking them for details of therapists near you. Or as you're unable to travel, ask for details of therapists who can do therapy over Skype.

It is possible to see your GP and ask for CBT or counselling, but the way it works where I am you only get six sessions and if you don't get someone who understands autism than it's more stressful than helpful. At least, that is my experience. I would recommend seeing your GP so he/she knows you're going through this; he might be able to get you referred for CBT/counsellor with someone who knows about autism, or he might be able to write to the diagnostic team and speed up your diagnosis appointment.

Are you able to listen to music at work? Maybe you could say to your boss that if you could plug in earphones and listen to music, you think that this would help you in your work. If your boss is reluctant, you could ask if you could just try it for a week. When you get your diagnosis - and this is a good reason for your GP to get things sped up for you - you could say, due to my autism I have difficulties and listening to music will help. Under UK law, employers have to make reasonable adjustments for disabled employees and being permitted to listen to music would certainly help.

Best of luck and please let us know how you get on xx

Hi,

I live in the South east of the UK and I was diagnosed in October so I can offer you some helpful advice. The first to note is that in the UK there is not much support for Adults with Autism. But, there is support out there if you spend time looking for it.

Once you get the diagnosis you might feel depressed, angry, and start to think about what would my life be like if I didn't have ASD. However, it also feels like your life make sense and you understand yourself better.

There are several support things you can do after you get your ASD report.

Once you have your report then you can talk to your employer and ask them to make 'reasonable adjustments' such as moving you to an office away from everyone else, dimming the lights, getting special software to help you do your work. Whatever it is that they can do to help make your life more comfortable at work.

Note: This is part of the UK Equalities act.

The next thing you can do, after getting diagnosis, is you can look at getting financial help by applying for PIP (Personal Independence Payment). PIP can be paid to you if you are employed or not. The PIP form is quite complex so you might need help to fill it in by going to your local NAS branch or going to one of the information hubs that have popped up all over the UK. These hubs have advisers to help you fill in the form.

Note: PIP replaces the Disability Living Allowance.

The last thing is to see is to join your local branch of the National Autistic Society in your area. The Surrey Branch has talks and group for Aspies of all ages and for parents of children who are Autistic.

Below are a links to the NAS and for information about PIP.

The National Autistic Society
Personal Independence Payment (PIP)

Hope it helps and good luck with your assesment.

Regards

Data001

I was diagnosed in the UK with Aspergers a few years ago. I was working for a university, so I went to Occupational Health to hand in the diagnostic report. They weren't very proactive at organising adjustments for me. The seasonal part of my job that was the most stressful (and had motivated me into getting tested for AS) was about to start, but nothing was happening, so I divulged my diagnosis by email to the people running that part of the work, and finally a meeting was arranged to look into adjustments. The meeting seemed rather blurred to me, and no minutes were ever produced, but I found the hard part of the job got reduced to a small number of specific tasks, and my lunch breaks were respected (previously there had always been pressure on everybody to put the work first) thanks to a supervisor there who seemed to understand a bit about autism. The rest of my job didn't change, except for a general feeling that I'd be fairly immune from disciplinary trouble if I had to take an unofficial break because of (social) fatigue.

So what happened was that I felt safer, but I was dissatisfied with the vagueness of the adjustments, and didn't feel I was truly being included. I asked for things to be looked at in better detail, but nobody lifted a finger to help. Luckily I was quite close to retirement age, so I could afford to quit, and that's what I did. I wouldn't dream of going back into the jobs market. University science jobs are supposed to be a good choice for Aspies, as everybody's so nerdy, and they've got web pages by their own autism awareness teachers, but they seem to be only for the students.......so I reckoned if that was the best the world of work has to offer me, I was better off without it. If I had to work for money, I'd only work part-time, and one sniff of a horrible boss would be enough to put me off. I've had enough of those.

Apart from the workplace adjustments and the decision to retire early, nothing else much has happened. The hospital wrote to my GP explaining how to deal with Aspies, but I've seen no change. The GP said that sedatives and antidepressants were pretty much all they had. I tried to get the cooking component of the Disability Living Allowance but was turned down and couldn't be bothered to appeal. Socially, nobody but my partner (who also seems to have AS) seems remotely interested in any details about my condition. Previous partner did a runner a couple of days after my diagnosis, but it's hard to be sure of her motives for leaving.

What else happened after diagnosis? I joined Wrong Planet, which was very helpful socially. I had some feeling of being in an identity crisis, with so many of my assumptions about myself being suddenly open to a new interpretation. A lot of things became clearer. It also got me down, knowing what my likely weaknesses were. Getting shut of the stress of the workplace has been very useful, but I'm still struggling with independent living - I can do it, and always have been able to, but with executive function issues it's still a struggle.

Thanks for the replies everyone, I now have a clearer picture in my head of what I can expect after diagnosis

Thank you Data001 and apologies for not replying sooner, I've been feeling quite overwhelmed by the whole work situation so unable to think straight and feeling sorry for myself I have an interview for another job next week which I feel will be more suited to me and shorter hours so fingers crossed