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The Magenpie

Adult Aspergers and the law

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I have a 25 year old stepson with aspergers who still lives at home. One of the difficulties we have is the fact that the law treats him as an adult even though it is becoming clearer that his emotional age (if we are generous) is probably 15. We have discussed with him the need for him to have some form of counselling (one issue is his mental health is deteriorating due to lack of association outside the home). He agrees then when push comes to shove he then tells anyone (counsellor, social services etc) he is not interested. So we are in a bit of a Catch 22 legally. He had a diagnosis at age 17 by CAHMS but is not classified as disabled as he is regarded as at the high functioning end of aspergers. How do other parents on this forum cope with adults in this situation? Any suggestions would be welcome.

Edited by The Magenpie

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I have a 25 year old stepson with aspergers who still lives at home. One of the difficulties we have is the fact that the law treats him as an adult even though it is becoming clearer that his emotional age (if we are generous) is probably 15. We have discussed with him the need for him to have some form of counselling (one issue is his mental health is deteriorating due to lack of association outside the home). He agrees then when push comes to shove he then tells anyone (counsellor, social services etc) he is not interested. So we are in a bit of a Catch 22 legally. He had a diagnosis at age 17 by CAHMS but is not classified as disabled as he is regarded as at the high functioning end of aspergers. How do other parents on this forum cope with adults in this situation? Any suggestions would be welcome.

 

Hi -

This is a difficult one, because while it's sort of generally acknowledged that there is 'gap' between emotional and chronological development in autism it's not as simple as 'has a mental age of...' and there's no sort of 'rule of thumb' that works across the board. Just like NT people, autistic people develop emotionally at different rates and there are all sorts of additional factors that have to be taken into account too. Circumstances can make a huge difference, and (again just as within the NT population) an (i.e.) an autistic person who is living independently at eighteen is likely to be much more emotionally mature and independent than one aged 25 who lives with parents but treats their home as an hotel...

Having said all that, even if some of his emotional behaviour is similar to that of a fifteen year old there is absolutely no reason to lower your expectations beyond that: you just have to be firm and consistent about what those expectations are.

One thing you do need to consider, though, is what informs the judgements you are making: The things you consider he needs may not be things he actually wants or needs, and the assessments you make about his mental health deteriorating may have more to do with how you perceive his life (in comparison to other 25year olds) rather than how he perceives it. Certainly it's good if you can persuade him to socialise more because this does have all sorts of benefits even for people who aren't 'naturally' sociable (even if it's just practice for when there's no avoiding it!), but different people have very different needs and ideas in this regard. Some people are naturally gregarious and regard almost everyone they meet as a 'friend' while others may only develop one or two close friendships in their entire lives and be perfectly content with that. Others might elect for hermitude and be perfectly happy too, and that could have nothing to do with autism whatsoever.

There's no rights or wrongs - just what works for the individual and what doesn't work. If he agrees - albeit reluctantly - that he is 'missing out' to some degree then that's half the problem solved: all you have to do is work with him and build on that understanding by finding some social opportunities he can access and offering him support, guidance and gentle 'nudges' in accessing it.

 

Hope that helps

 

L&P

 

BD :D

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Hi you can challenge your local authority of the their criteria of disability and also they can not suggest that his high functioning Autism in grounds to refuse him support, services that he does actually need.

 

I recieved support from NAS who gave me a list of solisitors that know the community care laws.

 

Your son should have his needs assessed usually throw social services.

 

In that assessment they look at what support your son requires, so for example they may offer a sessional worker that could take him out to activities, swimming, gym ect or a specialist respite centre where he can access recreation and activies.

 

There is also assessments for the carer so they get a break and also assessments for Holidays so that the family can enjoy a holiday.

 

There is also direct payments that can help pay towards social and recreational activities.

 

They can not use the grounds of his higher functioning as a way of rejecting his needs for sure.

 

JsMumxxxx

 

 

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I have a 25 year old stepson with aspergers who still lives at home. One of the difficulties we have is the fact that the law treats him as an adult even though it is becoming clearer that his emotional age (if we are generous) is probably 15. We have discussed with him the need for him to have some form of counselling (one issue is his mental health is deteriorating due to lack of association outside the home). He agrees then when push comes to shove he then tells anyone (counsellor, social services etc) he is not interested. So we are in a bit of a Catch 22 legally. He had a diagnosis at age 17 by CAHMS but is not classified as disabled as he is regarded as at the high functioning end of aspergers. How do other parents on this forum cope with adults in this situation? Any suggestions would be welcome.

 

i had a breakdown in 1999 and then nearly another one in 2005. i decided to go gluten and dairy free also cutting out MSG and Aspartame.

 

Would he be willing to attend a local asperger group?

 

Social services should be able to work around the fact that your son wont accept help. One booklet i would recommend you read is

http://www.autism.org.uk/nas/jsp/polopoly....544&a=19053 which is £2 from the NAS.

Also the "taking responsibility: Services for adults with Asperger syndrome" report which highlighted the areas in which autistic adults

are lacking. Have you tried as his parents getting a carers assessment?

 

One book i would recommend for him is "how to be yourself in a world that's different" another "what is Asperger syndrome and how will it affect me?"

 

i found out more about myself once i was willing to read up on Aspergers.

 

Alexis

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I have a 25 year old stepson with aspergers who still lives at home. One of the difficulties we have is the fact that the law treats him as an adult even though it is becoming clearer that his emotional age (if we are generous) is probably 15. We have discussed with him the need for him to have some form of counselling (one issue is his mental health is deteriorating due to lack of association outside the home). He agrees then when push comes to shove he then tells anyone (counsellor, social services etc) he is not interested. So we are in a bit of a Catch 22 legally. He had a diagnosis at age 17 by CAHMS but is not classified as disabled as he is regarded as at the high functioning end of aspergers. How do other parents on this forum cope with adults in this situation? Any suggestions would be welcome.

 

Nice to see you again Magenpie :)

 

What is your son doing with his time these days? Is he at college or working?

 

One thing I have found with my adult son is the need to be flexible in terms of what we expect of him. For example, he's not doing as well as he was on the life skills front at the moment...but he has been given more responsibilty at work, often works late and does all the over-time going. He's extremely concientious, and before Christmas went in even though he had a chest infection.

 

So I'm thinking that although I still nag about encourage his life skills, he's probably pretty maxed out through work at the moment and things will come together later.

 

Having said that, I think flexibily is fair enough if they are doing something. Otherwise even is your DS isn't at college/work he would benefit very much from a structured day involving helping at home, appropriate socialising, etc.

 

Bid :)

 

 

 

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Hi you can challenge your local authority of the their criteria of disability and also they can not suggest that his high functioning Autism in grounds to refuse him support, services that he does actually need.

 

JsMum has a point there, they arent legally allowed to refuse to assess yourself or your son.

I received support from NAS who gave me a list of solicitors that know the community care laws.

 

Your son should have his needs assessed usually through social services.

 

Please can you send me that list so i can pass it onto people in the community and lists i attend?

In that assessment they look at what support your son requires, so for example they may offer a sessional worker that could take him out to activities, swimming, gym ect or a specialist respite centre where he can access recreation and activities.

 

Asking the NAS for a befriender for your son or the family is another idea. Some mental health charities accept asperger folk for advocacy.

There is also assessments for the carer so they get a break and also assessments for Holidays so that the family can enjoy a holiday.

 

My carer got home help so i could cook with a support person, i then started doing other activities with that support person. Eventually i got accepted on a housing scheme designed for LD (i am under LD for this housing scheme but MH for support go figure!) and ive been here since May 08.

There is also direct payments that can help pay towards social and recreational activities.

 

They can not use the grounds of his higher functioning as a way of rejecting his needs for sure.

 

JsMumxxxx

 

Also direct payments can pay for you to employ support workers. You could always say to mental health organisations "my sons autistic but his depression is spiralling out of control please help us". Dont mention the aspergers at all but just call it autism.

 

Alexis

 

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As I understand it we are talking about a 25 year old who is refusing any help offed. This is his right and without his cooperation there is very little that can be done to help.

 

Even people at the lower end of the spectrum and/or with profound disabilities have this right. At work we have to balance the best interest of the residents with their right to refuse treatment etc. If we were to go against their wishes we would be guilty of abuse.

 

The only tool you really have is persuasion.

Edited by chris54

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Thank you all once again for your replies and suggestions. To clarify a few points:

 

The Lad has suggested some ways forward himself (types of voluntary work, counselling with a member of his peer group). However he won't carry it through, so we ask if he wants us to start the ball rolling (e.g. contacting the organisation he is interested in). He agrees then when something is firmed up, drops out. He never gives a reason for this. As for attending an asperger help group, his attitude is that he has aspergers and is not disabled.

 

We have used a family member who is an IT specialist to chat to him to identify where he has shortcomings in his IT knowledge (he is self taught). Following this The Lad found a course at a local college on the internet but wouldn't phone himself to see if there is a place left. When asked why, he said the course had just started so there wouldn't be any places - I asked how he knew as he hadn't been in touch and that some courses will take late entrants - he still did nothing - he is convinced his way is the right way. He says he wants to design websites BUT he doesn't have the vision or creativity; those he has designed for others he has never been paid because they said it wasn't what they wanted - and I can see this when I look at their specification and his final product. This also happened when he was asked to design one for my company.

 

A similar example of his pre-conceptions happened when he needed specialist injections from the GP which are not free. So we asked him how much they were - didn't know - so asked him to find out from the surgery - he said the receptionist won't know - I said how did he know the receptionist wouldn't know - "because she won't" is the reply. So infront of him I phoned and asked for the receptionist, who promptly gave me the cost !!!! He just stood there and looked blank.

 

He is neither in college, work or doing anything other than the PC all day - World of Warcraft is on permanently. We had an interview with Social Services to ask for their advice and guidance, NOT any financial support. They have failed to even follow up our visit despite them agreeing to do so in the interview. WE have chased for over three months with no success; they don't return calls or emails. JsMum, thank you for the suggestions as to a way forward with Social Services, we will take these up.

 

His Dad has tried persuasion for years, all The Lad does is fight ALL types of authority, be it family, Job Centre, Remploy or whoever. As for basic house rules (e.g. please put your dirty linen in the linen bin), FORGET IT - it results in arguments as to "it's my life, I do what I want". He will not help around the home no matter how we ask. Short of physically dragging himout of his room we are coming to the end of our patience.

 

Recently we decided to stop buying his food and give him an allowance, if only that it forces him to go out to buy food and communicate with people. The allowance is based on his previous consumption, so he isn't being short changed. Now we find the allowance is being spent on computer equipment etc rather than food. The knock on effect is that he is suffering from ill health in the form of several colds in succession.

 

I know we have one course of action which would get his attention; restricting his access to the internet. We have tried unplugging at certain times but this isn't a deterrent, he then sits downstairs watching the tv. I admit I am so frustrated with him I want to take the access out of his room completely, if only to get his attention. We are currently looking at a form of young adult sheltered housing to get him into the community as we are both retired and need to sell this big house and downsize.

 

Thanks once again fo your help.

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Hi,I definatley think he needs to go to some form of adult sheltered accomadation.If he doesnt learn to do simple things,like budgeting,now on his on when will he learn?You and his mum prehaps do alot for him (I would do the same) but its not fear on either of you and he probably knows if he wont do it you will,so moving out will be the wake up call he needs.If he gets proper support he can get some guidance on how to spend his money,so he will buy the necessities first and then luxuries,that way he wont get sick cause he will have food,which hewill also eventually learn to cook.It will probably be a long process but he will achieve it.I used to work in a care home that had a separate wing for adults with learning disabilitys,mostly downs syndrome,all of the are independent,do their own shopping,budget,cook, clean etc.Some go to outside activities and one even had a little job.So I know it can happen.

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I'm gonna add my two cents here from my perspective, which should be similar to his.

 

He sounds like me to varying degrees, although a much less mature version of myself. I'm currently 26. I have in the past been addicted to Internet usage and World of Warcraft - when I was between the ages of about 12 and 15 I ran up Internet and phone bills of thousands of pounds. I had my savings (a LOT because saving was another minor obsession) and this did nothing. My dad was away a lot and told my mum to remove the modem cable, she didn't and just tried shouting at me. Didn't work. When my dad was back he removed it and I couldn't go on it any more. This happened numerous times until eventually I learnt that if I controlled myself then I wouldn't have it taken away. With World of Warcraft I was much older and had nobody there to control me - what eventually happened was I played it so much until I got bored of it, and now I can't even go near a MMOG (mass-multi online game).

 

I had a similar issue with my first serious girlfriend. I was very obsessive with her and eventually it drove her made and she finished with me. It took my some years after the event but I eventually learnt that it was my behaviour that killed it off - this was somewhat damaging because I then never took the risk of going after girls I liked and ended up being chased my girls who...well, let's just say the way it seems at least is that they saw my weaknesses and took advantage of them. With my last girlfriend (we broke up 1 year and 3 months ago) she got me £16,000 in debt. I've learnt things the hard way but I learnt them well (eventually) and have gotten myself back on my feet all on my own.

 

I'm very stubborn and will pretty much do the opposite of what my father tells me to - even now sometimes, although I have recognised this in myself and try not to do it anymore - and he recognised failures in my ex-girlfriends and pointed them out at the time but I refused to see them. I find it hard to see things from another person's perspective and often need it explained and, preferably, likened to an event that I have personally experienced.

 

I don't like to speak to people on the phone and will avoid it at all costs, although if pushed then I will eventually do it myself. In work I will often ask my receptionist to make calls that I don't have to personally make. Why? I'm not entirely sure, it's hard to explain, I just feel very uncomfortable. The same comes to talking to people out and about, although I'm a very sociable person. I'm usually ok if people start talking to me or if I have something to focus on but certain things I find difficult.

 

In terms of feeding myself, this can sometimes be a bit of a chore. I struggle to pick something to eat. At the moment I'm finding it difficult to go shopping because there's such a plethora of choices that I don't want to choose and also I just don't want to be in a supermarket. Over the last few months I've really lost my routine for shopping, but before I was able to do it fine - I should probably start making up a list and just plough through it and then I'll be fine.

 

Oh and with authority I was never very good when I was younger and was very much opposed unless it was something I was really interested in. Something that really helped me there was Taekwon Do which is a military based martial art and quite strict. I really enjoyed it and it taught me to observe authority. I'm still not perfect but I'm a hell of a lot better.

 

Obviously I'm highlighting all of my issues here so it probably looks quite dire and you can probably see the similarities. The difference though is that I've got two very good jobs and I'm capable of living on my own. In fact I think part of the problem that I've regressed slightly is that since splitting with my ex I've had to move back with my mum and she does most things for me - when I was with my ex I was supporting her as she didn't have a job half the time and refused to do things about the house; so essentially I'm very capable.

 

Therefore from my own experience I would maybe suggest taking a step back in terms of doing things for your son. Obviously shouting doesn't work, so just say "fine here's the things you need, go ahead and sort yourself out". It's obviously your decision what to do and he is not me so I can't guarantee anything but I'd say it's worth a try.

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Hi.

As your son is twenty five I think it is likely that mental health services and social services will regard him as able to make decisions for himself regardless of the AS diagnosis.

Any form of talking therapy is very much dependent on the willingness of the individual to engage with professionals anyaway.So it is unlikely to be worthwhile if your son does not consider he has a problem that he wants to deal with.

We have Ben who is 11 and has AS.

Ben has just finished psychotherapy with CAMHS.We would have liked some support for Ben to continue because we still think he could do with some support.However Ben wanted to finish therapy and the therapist regarded his wishes as being far more significant than our concerns.As I say that was at age 11.

Karen.

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heya

 

i have depression and anxiety i used to agree to things then back down refuse point blank or run away as from school work experience i carried om fr about 2-3 years volunteering then one day couldn't cope burst into tears with teacher in charge i phoned my mum's at my nan's and told her what i had done she wasn't best pleased couldn't understand why i just decided in split second to 'blow cold' and i never went back they were supportive and understanding of my AS /MH needs ( self harm etc) i still feel bad and guilty as they really did give me good work practice foundation start to work from and learn knowledge /skills and i did that to this day i still questioning myself as to why i chose that option all i can explain it with is emotionally unable to cope at that time with work environment i became stressed etc i sometimes from that job will end up ringing up 'fake' sickness as couldn't face going in felt depressed so stayed in bed all day and on college placements mum struggled to get me in the door without a anger/rage meltdown situation from occuring every day

 

i managed to attend college every day without fail though did struggle to cope with emotional /mental problems i was experiencing and try concentrate and focus on my college course became a hard task to follow through every year i improved that little bit more

 

but first year was the hardest by anything i was such a wreck i was everywhere i relyed on adult reassurance i had to have a couple weeks off as i had to be seen my CAMHS and there pyschtrist to make such i had no mental illness present i officially wasn't real danger to myself or others only then would they accept me back even then my subject tutors had to 'stick up for me' as i wrote the tutor i most close to as suicide note and handed it too her and self harmed in the toilets when i was overhwhelmed and stressed anxious by mum was called up there to collect me and wasn't allowed back on premises until i was properly assessed i had to sign a contract when got back between the head of course and me and subject tutors and hear of course had to have a meeting together to decide what happen to my future at the college and agree on them terms and conditions stated only thanks to my subject tutors i got given a second chance at proving myself i scared myself of thinking i was so near and close to losing my future of gaining qualifications in child care

 

my last year of college i did course not my only seperate placement as didn't do the whole diploma course so i decided to do some voluntary work placements locally i did one at severe learning difficulties service/centre on a thursday in the mornings and worked on a friday for 4 hours 12.30am-4pm i was then approached by the boss and she asked if i was interested in doing bank staff position as 1 staff member seriously off sick for a while she is now back working but i work part time under 16 hours so my mum gets DLA benefit and i can cope emotionally though have my days which i struggle when MH playing up to give work practice properly my parents asked me stick in voluntary work as keeping me busy and also give me personal experience /knowledge i needed i was ready to leave but said keep at it i did and now i am due to get a contract soon for 15 hours so i never thought voluntary would lead to this opened my eyes so much

 

the boss even put me in for in house training yestoday as she wanted me included not left out as part of them team now ...... i still feel annoyed frustrated when i have no choice but to work at slower much different work levels to my colleagues the boss wants me to ' be myself' but i get so angry .... grrrrr

 

i wanted this so much and so bad ambition determination to progress and improve ....................

 

i do sometime feel like staying at home as feel depressed anxious etc MH playing up this only make me feel worse and i get used that becoming my routine and structure i'd get bored and that when things go downhill and out of control quickly

 

XKLX

 

 

 

 

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Hello everyone.

Sorry to rake up an old thread of mine but something has happened this week and I would appreciate your advice or thoughts.

 

The Lad has been involved in voluntary work since we took him to counselling. He has met a young lady as a result. A week ago he said he was going out for the day, we haven't seen him since nor does he answer his mobile. He went without his laptop or camera so we assumed he had gone to see the young lady. We know he is still in one piece as he is somewhere posting on his facebook website (last posted Wednesday).

 

Bearing in mind he is technically an adult (and he likes to point this out to us on many occasions) at what point should we become concerned ? He didn't take any clothing and his netbook is almost the equivalent of Linus's blanket (from Peanuts). I know he is in debt with his mobile as I have had a debt collection agency after him (he is 2 months behind with the subscription).

 

His Dad says leave him, I agree to a point but my concern is how long we leave it.

Thanx

M

X

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You could ask for advice at the police station. He would probably be classed as a "vulnerable adult" because of his AS diagnosis. They may try to trace him and check that he is OK.

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I have AS myself and I work with people like your son quite often, so I may be able to shed some light here.

 

If your son is in trouble in a legal sense - i.e. if he is arrested for example, he would be treated as a vulnerable adult and would be given a Appropriate Adult, who could be either yourself or someone qualified to deal with vulnerable adults. In some areas this may be a mental health social worker or NAAN (National Appropriate Adult Network) trained individual. The appropriate adult would be contacted as soon as your son enters police custody because the Custody Seargent has a legal duty of care to vulnerable adults in his/her custody under the Police and Criminal Evidence Act (PACE).

 

Secondly - emotional age. Reguardless of his emotional age there are somethings that your son must learn to take responsability for, these include learning right from wrong, considering the results of his actions, and financial responsability. In this I feel his Dad is right, it is his responsability and he must learn to face the consequences of his actions. Sometimes tough love is the only way to make people understand and with AS this is all too often true.

 

As for dissapearing without telling you, that is simply unacceptable AS or not, and you need to make it clear to him that this kind of behaviour is unacceptable and it has nothing to do with his condition or age, it has to do with the fact that it is upsetting to you and his dad. If he doesn't show up inform the police, they will pick him up as a vulnerable adult and he may learn a lesson, you never know.

Edited by zenemu

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You could ask for advice at the police station. He would probably be classed as a "vulnerable adult" because of his AS diagnosis. They may try to trace him and check that he is OK.

 

An autism alert card would have a section about an appropriate adult being present if they need to be interviewed.

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I spend hours on my own and this was certainly so when I was in my early-mid 20's too.

 

I used to go for long walks and bike rides without telling a soul. I also used to spend hours in my bedroom playing video games. Where I was, etc I didn't really think was anyone's business.

 

The trouble now is we all carry mobiles with us and we're all expected to be 'online' 24/7 and yet in reality we all have the right to turn our mobiles off (good thing really) and we all have the right to travel, etc.

 

Sure it is reasonable for a parent to be worried. But at 25 he's well within his rights to do what he wants to do.

 

Give him some space and maybe open some communication channels with him to check things are OK etc. Everyone will remember what it was like at that age - come on think about it! What were you doing at 25? Who were you with? What did you get up to? Would you have been happy being interrupted??

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I think back to when I used to go off walking in the mountains and would stop overnight in bothy's and go camping etc and then imagine being disturbed by helicopter search lights in the black of night because someone got worried after only a few hours.

 

Ok, ok if it's out of character, etc then one has to apply common sense and do what they feel is right in the circumstance. There is no 'one' answer to all situations but I know in my own case when I was in my early 20's I regularly went for trips on my own and I sense it is commonplace for others too because afterall we are all individuals and we all have our own plans and goals in life. We all live our own lives and we're all entitled to our own space.

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