Independent living for son with Aspergers

Valerias said:

Hi

I'm new to the website/forum but I'm beginning to run out of ideas.  My son was diagnosed at 17 has had little help from Social Services and has recently been assessed as able to make his own decisions and therefore outside of their scope for support. 

My thoughts have now transferred to perhaps its me that needs the help.  We are a 4 person family my partner, myself daughter and Son.  He is the eldest.  Didn't do well at school and didn't do further education.  Got a job window cleaning and has since become owner, though this sounds good it's not quite the success story that it sounds.

I feel that if Social Services can't support me to develop Owen further at home then realistically he needs to move to independent living at 23 he still thinks that as a mum I should pretty much do everything for him still.  He does have some domestic skills but they are limited and won't improved with the attitude he has.  I am looking to find somewhere for him to move onto but don't have a clue how to get this properly moving.  He has no financial ability and will spend all his money.  As far as he is concerned he is alright at home (though we aren't).  We have thought about supported living but I perceive Owen to be a bit like an alcoholic in denial - he thinks he's ok and that his friends don't know he's different.

At this stage it looks like he won't go of his own free will, we aren't coping at home either so I'm at a loss.  I will be going to see the CAB next week, but any hints and tips will be most gratefully received.

Certainly in England he is entitled to a community care assessment and you are entitled to a carer's assessment because (it sounds like) you are providing support to him.  (See Fulfilling and rewarding Lives: The strategy for adults with autism in England, Implementing "Fulfilling and rewarding lives": Statutory guidance for local authorities and NHS organisations to support the implementation of the autism strategy).  From the NAS website it looks like this is the case in Wales too.  So you can ask social services for a carer's assessment for yourself even if they've done a community care assessment for your son and found that he is not eligible.  A community care assessment should look at more than whether he can make decisions though.  The eligibility criteria include the ability to carry out domestic tasks and maintain social relationships etc. too.

If social services where you live are anything like those where I live just getting a proper assessment could take some determination and stubborness, even though they should have been offered after diagnosis and are a legal right.  But it does at least give something to aim for and a possible route to support.

After my experiences in shared houses I wouldn't ever want to live in one again unless I knew the people well.  Keeping yourself and your possessions safe and secure can be very difficult with some kinds of housemates!  I can remember one university holiday at my parents' house thinking how nice it was not having to always keep my wallet on my person.  There may be the risk that if he has a bad experience he'll be even more reluctant to live independently as a result.  I was "eased into" living in my own place by halls of residence and then shared houses, and then when they drove me nuts moving home was no longer an option.

Studio flats are one option.  By this I mean cheap ones that are "studio flats" because they're too small to be worth separating into a living room and bedroom rather than to be swanky, modern, and "open plan".  It gives you your own space, your own front door, and your own kitchen and bathroom, which I found invaluable, but can be easier to manage than a full flat.  (This could be very important if you're likely to have to help him manage it).  Whether noise and neighbours are a problem depends on the design of the building and where it is and it's not necessarily going to be the cheapest being the worst.

I can understand you being exhausted with having to keep fighting though.  It gets very draining, and the "professionals" are often less than helpful.

Has your son any difficulties settling in with your partner?  That sort of thing can cause friction anyway, but can be a lot worse where autism is involved.

Your partner may be trying to befriend your son in a bloke to bloke way (rather than surrogate father to son). In an NT context he is likely to try to do that by being jokey, matey, sizing each other up, trying to find common ground.

Your son however may have great difficulty understanding this approach, especially if he is poor at reading facial expression and at showing the right facial expression. He may be getting very different messages from what your partner intends, and may be giving back messages that suggest he cannot make allowances.

On top of that your partner, if a relative newcomer, is taking over, and you are expecting your son to move out and find his own life - lots of scope for misunderstanding.

The problem with independent living is that the options are fewer, and it is bad enough for young NTs currently, which is why a lot stay on in the family home past thirty.

House sharing is one option, either renting a house. or where one of the sharers is the owner. That's hard if you are on the spectrum. When a room in a share is advertised you've virtually got to go and be interviewed, and "your face has to look as if it fits" if you are to get on amicably in a share. I tried it a few times after leaving university and found it immensely difficult to get a place, and usually managed only with other eccentrics who were finding it hard getting anyone to take the room when the candidates saw how things stood. But surprisingly there are a lot of shared houses out there occupied by misfits who manage along sort of....

The other option is bedsit accommodation, which can be really grim. I've seen bedsits with shared loos and where everything else is crammed into one room. Attics are often best, but some bedsits are a shock to the system. The point though about bedsit land is it is full of people who cannot find anyone to share with - ie. your son would be living in some old house with lots of other not easy going people.

If you are in a university town the private sector accommodation sometimes allows for non-students to share with students.

If you can get small flats, including those designated for disabled, and they are affordable, the main problem is they are often thin walled and noisy, and in not so nice neighbourhoods, or near busy streets. Several of the regulars in here are in this sort of accommodation and while hard to get them they may not be as blissful as they seem.

Certainly agree with that, again I think will ask CAB about ability measurement.  I've been biding my time before going I need to be clear about what I want to ask for otherwise they are just going to get a gushy emotional woman ranting about anything and everything : ) 

He has talked about it in principle but the reality is going to be more scary, of course.  I want the transition to be right for him but by the same token we are arriving at the point where it has to happen and it could be right for him and us now.

Thank you

Hi - sounds like things are difficult at home.  CAB may be a good place to start, as well as getting info from this site via the home pg, email etc.  I'm no expert on the mental capacity act but are you sure he's been assessed accurately?  It's also going to be really difficult if he doesn't want to go so I suppose you'll have to get him on-board with the idea of having his own place.  I do think you need to keep hassling your adult social services dept, however disappointed you are with them, purely because they may be able to help, however reluctant they may seem.  For example, if things are breaking down at home then they may have to step in?  So I think you're right to get all the info you can because that will then, hopefully, give you and your son some options for the future.  It is important that if he moves that wherever he goes should be suitable for him or it could make things very difficult for him and your family.

In North Wales a person aged 17 or over is designated to adult social services - so I found out the hard way.

I have just emailed our local branch NAS and hope for a response soon.  As a "blended" family we are struggling right now.  My son has become more and more difficult in the last 4 months, not in the traditional ways I have recently read about on the forum.  More to do with inability to understand his decisions are impacting us detrimentally.  My daughter is also in denial about his aspergers which often makes me wonder if he is manipulating me and finally the boyfriend up until approx 1 week ago has had difficulty accepting that my son isn't doing things on purpose.

I so need the help - off to CAB this next week to see if they can offer any ideas but truthfully I have battled with and on behalf of my son all his life and I'm tired emotionally and feeling the strain significantly

It is so sad that this sort of thing keeps cropping up. If you are deemed to be able to cope and not need support, there is a massive step down between supported and unsupported. This makes transition from school age to adult all the harder.

Added to which I worry that NAS, for all the campaigning, still thinks in terms of those needing support as adults as being the issue. There is also an opinion out there that if you can manage you don't really have autism.

The situation is now made worse by the Welfare Reforms, which expect even supported people on the spectrum to find work and is cutting back on DLA in the move towards PIP.

Look on the Community page of the NAS website for local services, bottom right hand corner. Its a fiddle as many search word choices just provide huge pointless lists, but if you are patient with it, you should be able to find if you have a local NAS group or a Parents Group for Autism.

Trouble with these is that they tend to be for parents of children, not for adults. Some are more progressive and have implemented adult facilities, but often you can only join as a parent, not as a person with autism.

But your local group may be able to direct you to services that you could then contact to get help. Its a roundabout way, but lots of parents have had to follow such searches and there ought to be more responses to help. The discussions are a bit thin on the ground at present, it is usually a lot livelier (I keep wondering if I post too much and scare people off).

Also contact your local authority adult services - often a mixed bag, but sometimes they are able to help.

Hi

I'm new to the website/forum but I'm beginning to run out of ideas.  My son was diagnosed at 17 has had little help from Social Services and has recently been assessed as able to make his own decisions and therefore outside of their scope for support. 

My thoughts have now transferred to perhaps its me that needs the help.  We are a 4 person family my partner, myself daughter and Son.  He is the eldest.  Didn't do well at school and didn't do further education.  Got a job window cleaning and has since become owner, though this sounds good it's not quite the success story that it sounds.

I feel that if Social Services can't support me to develop Owen further at home then realistically he needs to move to independent living at 23 he still thinks that as a mum I should pretty much do everything for him still.  He does have some domestic skills but they are limited and won't improved with the attitude he has.  I am looking to find somewhere for him to move onto but don't have a clue how to get this properly moving.  He has no financial ability and will spend all his money.  As far as he is concerned he is alright at home (though we aren't).  We have thought about supported living but I perceive Owen to be a bit like an alcoholic in denial - he thinks he's ok and that his friends don't know he's different.

At this stage it looks like he won't go of his own free will, we aren't coping at home either so I'm at a loss.  I will be going to see the CAB next week, but any hints and tips will be most gratefully received.

Thanks for your helpful replies, guys! Apologies for delay - I had problems logging in for a couple of weeks. It's really helpful to hear different perspectives.

Scottish Autism is centrally located, also in the South & West of Scotland, with no services in Moray and the North at present, unfortunately. But we will meet with a social worker this week, and hope to find out what is available.

Wishing you all the best for 2014!

Is Scottish Autism any good (http://www.scottishautism.org/ )? It is supposed to be doing what NAS does but in the Scottish context.

I'm always a bit wary of "wha's like us?" copies that don't often do anything like as much, but I've not explored it in any depth. It seems to be OK in some places like Moray, and thin on the ground a lot else.

If you Google (or look on the NAS website) for Asperger's social groups in your area you might find something he can regularly attend so that he has a life outside of you and widens his experience.

Hi - my son's in supported living.  I've learnt a lot over the yrs about what "works" for him.  He isn't aspergers.  He gets his support from an autism-specific organisation.  I think, from experience, that it's important to go down that route, rather than use a generic care provider, even if they have an "autism section" within their organisation.  We were able to examine a "preferred providers list" from social services, draw up a shortlist + then have presentations by the organisations.  We were then able to choose.  Social services arranged things once we'd shortlisted and again once we'd decided.  Secondly, think hard about sharing accommodation.  That's not to say there's anything wrong with sharing, it's who he'll be sharing with + how many?  Quite often in shared houses the only place he'll be able to go for a bit of peace + quiet will be his bedroom or maybe in the garden or for a walk if it's in the countryside.  He'll need to be assessed by social services for supported living via his social worker.  Bear in mind that funding is tight, altho I don't know if things are easier in Scotland.  I think it's certainly worth pursuing.  Having to move home at a time of crisis (such as a parent becoming ill etc) is never a good thing.  Better to discuss, make plans + then start putting them into action.