What can I expect after a diagnosis of Aspergers?

[dekaspace]

I was diagnosed a few weeks ago and been reccomended by the therapist and social worker for a bus pass and referred to an occupational therapist.

 

I am a bit unclear since I saw the same occupational therapist last summer before I was diagnosed who told me that everything I mentioned i.e lethargic and stress and eating pattern could be sorted by myself so not sure if they will be any better now unless they get funding for me?

 

Also told there is a waiting list of around 3 months anyway so not much help.

 

I want to reapply for university but will not get funding for 1st year again unless I can get a letter from doctor stating about depression and similar issues which since I have only been diagnosed I am worried I wont get help but that is seperate issue.

 

Just wanted experiences and a general idea what to expect.

 

I am 29 btw.

[darkshine]

Hi I'm 31 and was diagnosed over a year ago.

 

My experience has been mixed.... I got told was that there was a support group for people with AS. Then I got told that all my problems stem from AS (this is not true). Then I got told that the mental health (MH) service doesn't have anything for people with AS.

 

So this kind of discussion went on for half a year or more until I convinced them that my MH problems were mental health and not AS... Even so, this debate has occurred 3 times in the last 4 months....

 

Now I have to find out if they really put my CBT on hold (I really had to argue for this) and I have to find out if I can be referred for anxiety management.

 

Of course this could just be where I live and not true of every service... however, it does appear that there isn't much "out there" in the way of adult services for people on the milder end of the spectrum... there are AS support and meet up groups though if you think that would help you

 

Best

 

Darkshine

[LancsLad]

Dekaspace, I would expect ver little. A few years back I was fortunate following my Diagnosis for AS at aged 44 to have a couple of months at university and fed into a newly set up AS group. Since I have been back home I have been told there are no support services for AS.

 

I think the hard reality is that there are many adults getting a diagnosis who are simply left to hang out and dry by the system. Getting a diagnosis is one thing coming to terms with what this means is something else. I would go back to your GP and reinforce any needs you feel you might have at present.

 

Post diagnosis is a real problem and there are very mixed experiences on the forum. The only advice I can give is read up on the subject and take time to sit back and reflect on what you have been told and how it might relate to your own life. I think there needs to be an appropriate time when we take stck, reassess out lives if needs be before moving on. I feel there are far too many adults around us in times like this who just think fine youv'e got a diagnosis now get on with your life without really understanding what this means to many individuals.

 

Best wishes and stay strong.

[Sally44]

Do you already have someone from Social Services involved?

 

I think the referal to OT could actually come through now that you have been diagnosed. But find out where you have been referred to, and phone them up and ask them about the waiting time.

 

But overall services for adults does seem very poor and very patchy.

 

It is a fact that anxiety is part of being on the spectrum. But mental health issues may/or may not be due to the way autism affects you.

 

And then, even if you do have MH issues, there is alot of debate which states that those on the spectrum do not respond to cognitive behavioural therapy, and so that referal often does not happen.

 

The best way forward is to always ask to be referred to professionals that have experience of working with adults diagnosed with Aspergers. And also speak with charities that can give you the most up to date advice eg. NAS, MIND etc.

 

I would also advice contacting this organisation for help and advice http://www.ncil.org.uk/

 

It is the National Centre for Independent Living. It is for disabled people. And your diagnosis does now include you in that population [whether you consider yourself disabled or not - being able to prove you have needs via your diagnosis can sometimes help you get the help and support you need].

 

This organisation is all about achieving independent living, and removing the barriers to that. That can include a number of things relevent to your diagnosis, such as anxiety, MH, maybe sensory issues, problems with food etc. So do get advice from them as well.

 

Also try to find out if there is an adult support group for those on the spectrum. They can sometimes be places where you can get alot of information from other people.

[trekster]

Congratulations on your recent diagnosis.

 

The help you can get depends on which county of the UK you live in. Sometimes the NAS website can direct you to some local support groups, social groups or other types of help.

 

I found my lethargy was partly related to what I ate, partly due to chronic pain disabilities (which im hesitant express with an 'ouch') partly a milk/gluten addiction and partly because I have severe insomnia. Can you take Coq10? ive found it helps with some of my fatigue issues.

 

I hope you get your bus pass. Have you considered applying for financial help such as DLA or ESA?

 

University study can count as 'work related activity' (a type of group you can be put in with ESA). I found I got more help at university then I got at home (before I got home help now it's about 50:50). If you would like to join an autism university related list (for those thinking about, or are going, thinking of going to university) then PM me off-list. Thats a good place to ask about applying for disabled students allowance including what to ask for help with.

 

One good book is 'how to live with yourself in a world that's different'.