Adult Diagnosis/Support?

[jungle_jim01]

Hi, I'm trying to find out how best to help and support my girlfriend's brother. He's 24 and has been living by himself in 'housing association' accommodation for the last few years. His family has suspected since a young age that he has aspergers but a recent assessment by social services came out negative. I'm well aware that this is an extremely complicated area and it would appear that the test given was fairly shallow, based largely on a single face to face test. (I apologise for the length of this post but there's a lot i want to cover...thanks to anyone who has the time to take an interest)

 

As you can imagine, the family find it very difficult, making the balance between supporting and fostering independence. Although he does live alone and looks after himself, i loose the phrase very loosely...the flat is a complete mess, he rarely washes clothes, himself, dishes etc, so constantly smells bad. To an extent he is aware of this but isn't embarrassed by it as the rest of us would be. His mindset is very similar to that of a teenager, egocentric and quite short sighted in that he doesn't think ahead to tomorrow and today's consequences.

 

Keen to spend some time with him and also to provide a change of scenary and hopefully establish some basic routines etc, my girlfriend brought him to stay with us 2 weeks ago. In some respects he's done very well. Whereas usually he won't go out, he's spent quite a few hours walking and cycling, exploring our local area, which he is very pleased with. But unfortunately there are a range of deeply embedded traits that i think we he will struggle to change. Spending time with him has given us a chance to assess him quite closely but in my mind i'm not sure that it 'fits' entirely with Aspergers. The main traits are: low self esteem, lack of social responsibility, egocentric, possible depression, introversion, social anxiety, apparent laziness, appears to be OCD with climate change research/conspiracy (at the moment), also OCD with reading books which he uses as his main reason for not bothering with a job (he will loose reading time). His diet is very poor, ie; mostly he lives on eggs and beans although we've made some headway with this over the last week (hopefully some of it will stick when he goes back home).

 

In contrast to Aspergers, he does appear to have understand jokes and holds a fairly good conversation. He is aware of facial expressions which he uses quite a lot.

 

In general his attitude is similar to that of a teenager: We went to B&Q a couple of evenings ago which took a lot longer than anticipated (typical DIY!) All the way back, he was slumped in against the door in the car with a frown and barely responded to any communication from either of us, almost like a stroppy teenager. (it's the first time i've seen this in him).

 

As you can imagine it's incredibly frustrating for his sister and family who don't know what they can do. He receives benefit but doesn't manage his money well (for example with 2 weeks left until his next benefit he's already spent all of his cash and forgot that he still needs to pay council tax.

 

Since he's been with us we've tried putting together a timetable for him to follow, which includes basic things like getting up at 8am, going for a walk, washing his clothes, cooking dinner (planned with him), but so far he won't do it unless we're there all day telling him what to do and is quite defensive about his routine, health, hygiene etc.

 

My reason for posting on here is to look for some advice in terms of diagnosis, but more importantly steps forward. We'd like to be able to help in such a way that when he returns home in a week or so he can make some significant changes to the way he lives. Sometimes he seems receptive to the idea of a job and our goal is for him to be in employment but when it comes to the crunch in the past he hasn't turned up to interviews, jobs etc.

 

Personally i'm struggling with whether it's aspergers that needs addressing, or depression which seems to share many traits.

 

Once again, thank you for taking an interest, i look forward to any responses and advice. Please feel free to ask more questions.

[darkshine]

the only question I have is did you get anywhere with all this?

[leeds_demon]

Hi Jim

 

I was diagnosed last year at the age of 40. When I was being assessed, I explained that I can understand people's facial expressins and that, (in the main), I get jokes. I also look people in the eye, when I'm talking to them, (most of the time). However, I alos laugh at things that people might find normal and not funny. For example, when my parents came up to visit me, after my discharge from the Sheffield Asperger's Unit, I mentioned something that had been in the discharge letter and I started to laugh. My Dad asked me what was so funny. Today, I also laughed when, opening up the security gate, my cat, who I wanted to come inside the house, wandered off. I also, (when undertaking a work placement), changed the computer desktops on all the computers at the workplace in which I was undertaking the placement; my colleagues were slightly ticked off ot say the least. I changed the computer desktops, because I knew I could.

 

I also have a very good long-term memory, (not to the point where I can remember times and dates, which some Aspies can), but I can remember every-day incidences from 35 years ago. At school, I had very few friends and the friends I did have, I didn't keep. This carried on into college and university. Today, I don;t have any friends from my school/college/uni days.

 

My house is a bit of a tip and I have dirty dishes left on the kitchen worktop. However, I don't have issues with personal hygeine. I do spend most of my day in my nightclothes, as I find them less constricting. I very rarely venture into the city centre - min fact my 'world' is made up of the street in which I live, Harehills Lane and the trip to Tesco.

I don't like the thought of staying in hotels/b&bs asI have an issue about using strange tiolets. I passed up the chance of watching Heather Peace in Nottingham, last year, as I was worried about using the loo in the house in which I was staying - my brother's girlfriend's house. I also have issues about strangers -i.e workmen using my bathroom, or me using the loo when there's a workman in the house.

 

Re: the work issue. I had holiday jobs in college and when at university, but I haven't had a proper full-time job, since leaving university. I spent a month after leaving college working for the DSS as it was then, in my home town. It was for a trial period, but I wasn't kept on after the trial period. When I left university, I went to a number of interviews, but was never offered the job I was going for. When I moved to Leeds, I went on a couple of work training programmes, the New Deal and Step-Up. I made up my mind that I didn't really enjoy the workplace; now I am self-employed. But I do lack self-motivation - which means that if I do some telemarketing, I'll make a couple of calls and hen spend time surfing the Net.

 

I could go on about my quirks. The thing about AS is that it affects people differently. The best thing that could happen is that your girlfriend's brother obtains a concrete diagnosis from a consultant psychiatrist/clinical psychologist who has experience of diagnosing Asperger's. When I went for diagnosis, my parents were sent a lengthy questionaire and the assessment took two hours - this involved me being interviewed and my parents being interviewed. My parent's questionaire answers, to me, didn't confirmn that I had Asperger's, however, after my assessment, the Clinical Psychologist who interviewed me drew the conclusion that I have Aspergers's, after lsitening to my answers and observing me. I also had follow up appointments and the psychologist who I saw, (even though still training), came to the conclusion that I have Asperger's.

[KezT]

well, there are a number of sues here I think:

 

firstly, social services are not qualified to make any kind of diagnositic assessment - their job is to assess what his needs are, not what is causing those needs! You need a medical professional to start on the road to any kind of diagosis. I suggest a trip to the GP is the first step - probably with you/someone else to explain the situation. The GP will have to refer him onto further specialists - they have to pay to do this so are not always obliging, but you can INSIST on a referral! Highlight the personal hygiene/safety issues and the nutrition concerns.

 

Secondly, it is impossible to give any objective kind of view as to his AS from a forum post, regardless of how detailed, but IMO he sounds immature, rather than AS. Has he had any assessments for learning disability? Mental health assessments? diagnosis of or management for his OCD? My brother-in -law was very similar at 24 years old (except that he still lived with his parents) - and now he's 28, with a girlfriend and a job and his own place, he still doesn't cook, clean, wash much or tidy anything at home:wallbash: But there is nthing wrong withhim- he'sj ust quite lazy, very immature and male

[Karen A]

well, there are a number of sues here I think:

 

firstly, social services are not qualified to make any kind of diagnositic assessment - their job is to assess what his needs are, not what is causing those needs! You need a medical professional to start on the road to any kind of diagosis. I suggest a trip to the GP is the first step - probably with you/someone else to explain the situation. The GP will have to refer him onto further specialists - they have to pay to do this so are not always obliging, but you can INSIST on a referral! Highlight the personal hygiene/safety issues and the nutrition concerns.

 

Secondly, it is impossible to give any objective kind of view as to his AS from a forum post, regardless of how detailed, but IMO he sounds immature, rather than AS. Has he had any assessments for learning disability? Mental health assessments? diagnosis of or management for his OCD? My brother-in -law was very similar at 24 years old (except that he still lived with his parents) - and now he's 28, with a girlfriend and a job and his own place, he still doesn't cook, clean, wash much or tidy anything at home:wallbash: But there is nthing wrong withhim- he'sj ust quite lazy, very immature and male

 

 

Sorry.

I am not absolutely certain.However I think GPs can now under latest Government changes have an agreement with whoever they wish for the provision of services.They do not have to have an agreement with a medical professional.

 

In any case a diagnosis of AS would in practice lead to any input coming from SS or the voluntary sector.

It does not matter whether an individual has an underlying medical condition or diagnosis it is still Social Services who are involved in the assessment of and provision for Social Care Needs.

 

An individual cannot insist on as referal.There are people all over this country who believe that they have a level of need which justifies medical treatment,surgery or assessment.Those people can make a clear case.However it is purely up to the GP to decide whether there is a case for referal and if it is an efficient use of resources.If a GP decides there is no case a patient cannot insist otherwise.Also the GP has to have someone to refer to.In many parts of the country there is currently no provision for assessment and diagnosis of adults with regard to ASD.

 

jungle-jim.

Hi.

I think an awful lot depends on what support your girlfriends brother wants.If he is 24 and would be regarded by mental health professionals as able to make an informed choice [not mentally incapabable] then it is up to him how he lives his life.He may want to request a diagnostic assessment or talk to his GP about the difficulties he has.However he would have to make that choice.

 

A GP would not usually even discuss the case with relatives if an individual is 24.

It is very frustrating for family members who feel there is little they can do to change what appears to them to be a less than ideal situation.However the indivual has the right to decide how to live their life.There are many people who live in houses that are a mess and don't wash as often as they might.Unless they recognise they have a problem and ask for help things have to reach the level where the mess is considered a risk to others before the LA would be interested.Even then the first step would probably be to take action to ensure the house was cleaned up.

 

In my area there is a clear policy to encourage people into work who do not turn up for job interviews regardless of whether they have a diagnosis of anything or not.Benefits are stopped all together if the individual is deemed capable of any work and not to be making adequate effort.

 

I think that is harsh especially when all benefits are stopped but it is the reality unfortunately.

 

 

Karen.

Edited July 29, 2011 by Karen A