Living Independently

[The Magenpie]

Hello again.

 

Has anyone experience of moving an adult with aspergers out of the family home into a flat or room ?

 

I have described our situation in previous postings with my 25 year old stepson (in a nutshell he won't do anything other than live in his room and play on the pc ALL day).

 

We have been paying for a specialist counsellor to see my stepson each week with the aim of getting him to see that there is life outside the bedroom. She managed to get him to go to the local young adult volunteering group as this is a route to a job or placement or training. Additionally she encouraged him to register with a local college but in his typical fashion he doesn't bother.

 

The counsellor has told us that we are most of the problem with his behaviour as we have spoilt him (her words). But when we have withdrawn his internet access for failing to follow the house rules she has told us to give it back. Now my stepson says to the counsellor that he wants to leave home and get a room BUT he isn't making any effort to find a place. We are prepared to pay his rent for up to one year but after then he has to either sign on or get a job.

 

He is not on the housing list because he won't apply, so Social Services say they can't help. We have even tried the local Law Centre who specialise in dealing with housing, community care and benefits but they can't progress anything without his permission. Additionally he comes across as very capable despite his aspergers so is not eligible for any benefits.

 

So, getting to my point, do we find him somewhere to live, pay the rent for the first year and push him out ? The counsellor thinks this is what he needs to get him to take responsibility. We are also preparing to put the family home up for sale as it is too big to maintain on our limited incomes and we wish to move from the midlands to the north of england.

 

Are we being cruel to be kind - or not ?

 

Thanks

M

[baddad]

I think at 25 he's certainly of an age where moving out and living independently should be on the agenda, but finding him a flat and paying the rent for a year isn't, IMO, the way to go about it.

Of course, a lot depends on how able he actually is - If it really is he can't be a*sed, and he actually is very capable rather than just appearing to be then a sharp shock/kick up the jaxx may be exactly what he needs. Many young people do, and it has nothing to do with AS whatsoever.

There does, however, seem to be an undercurrent of resentment here ('in typical fashion he doesn't bother', 'he isn't making any effort to find a place') and while that is in some ways understandable given his behaviour it may mean that genuine support needs are being overlooked.

My nephew, now 21, has been working and living semi-independently in supported accommodation for almost three years. He has autism and MLD, and to have approached independent living with the same 'sink or swim' expectation you're proposing would have undoubtedly seen him sink. He's now, with a gradual reduction in support as he's developed life skills, coping skills, social networks etc, preparing for the next phase, which will take him out of the 'supported' accommodation to his own place with casual support from his friend/family networks and occassional paid support to give independent confirmation that he is managing (i.e.) his finances and cleaning etc.

What he's achieved in the past three years is amazing, but he could not have done it without support.

That said, his situation was not one where he was capable but 'lazy', which seems to apply to your stepson if your evaluation of his abilities is correct. Under those circumstances 'tough love' has to become part of the equation, and I don't think any parent should beat themselves up when forced to that conclusion. Enabling a child to live safely, comfortably, happily and independently is and end that, IMO, justifies the means, even if in the short term the means are perceived as unpallattable. Enabling a child to disable himself by removing those expectations, is, IMO, a much greater abuse.

 

L&P

 

BD

[trekster]

Hello again.

 

Has anyone experience of moving an adult with aspergers out of the family home into a flat or room ?

 

I have described our situation in previous postings with my 25 year old stepson (in a nutshell he won't do anything other than live in his room and play on the pc ALL day).

 

Sounds like the big bad world scares him and he needs to go out with folk to me.

 

We have been paying for a specialist counsellor to see my stepson each week with the aim of getting him to see that there is life outside the bedroom. She managed to get him to go to the local young adult volunteering group as this is a route to a job or placement or training. Additionally she encouraged him to register with a local college but in his typical fashion he doesn't bother.

 

Does this counsellor understand ASD? It is good that he has managed to engage with a local young adult volunteering group. Couldn't he enrol on a course involving studying computers?

 

The counsellor has told us that we are most of the problem with his behaviour as we have spoilt him (her words). But when we have withdrawn his internet access for failing to follow the house rules she has told us to give it back. Now my stepson says to the counsellor that he wants to leave home and get a room BUT he isn't making any effort to find a place. We are prepared to pay his rent for up to one year but after then he has to either sign on or get a job.

 

Doesnt sound like the words that an ASD friendly counsellor would say. http://www.sacramentoasis.com/docs/8-22-03/taking_responsibility.pdf

is a report about adult services for autistics and how sadly lacking they were in 1999-2001. i am writing a report about how the situation is these days and it;s not looking hopeful. Sounds like he has major problems making decisions. He wants to leave home but doesnt know how to go about leaving home. www.advanceuk.org is one such housing scheme that could help him.

 

He is not on the housing list because he won't apply, so Social Services say they can't help. We have even tried the local Law Centre who specialise in dealing with housing, community care and benefits but they can't progress anything without his permission. Additionally he comes across as very capable despite his aspergers so is not eligible for any benefits.

 

Why wont he apply to get on the housing list? i didn't because i was worried about where i could end up, i applied but fortunately the housing scheme ive been in (for the past 3 years) came up 1st. Social services are patchy at finding help. My family got help because i was living with my elderly carer (my gran) and she had to beg them for help. The support i got was 2 hours per day (weekdays) except bank holidays on the grounds that my gran needed it not me. This is the dire state of affairs in the UK for many families affected by autism. i wouldn't take anyone's word for it about not being eligible for benefits, Aspergers is still on the autistic spectrum and still a lifelong developmental disability. It doesn't hurt to try for DLA and see where it takes you;

 

http://www.autism.org.uk/en-gb/living-with-autism/benefits-and-community-care/disability-living-allowance/dla-guidance-for-adults-with-an-asd-completing-the-form.aspx

 

So, getting to my point, do we find him somewhere to live, pay the rent for the first year and push him out ? The counsellor thinks this is what he needs to get him to take responsibility. We are also preparing to put the family home up for sale as it is too big to maintain on our limited incomes and we wish to move from the midlands to the north of england.

 

i think the authorities have to take responsibility to help your family. Liverpool has some good support in areas for aspergers.

http://www.autism.org.uk/en-gb/living-with-autism/benefits-and-community-care.aspx

 

Are we being cruel to be kind - or not ?

 

Thanks

M

 

 

i think you need a different and better counsellor who understands ASDs and severe depression. Your stepson is in his room because he cannot cope with even the slightest changes in his life without much support from others.

[bid]

My 21 year old son with AS, Dyspraxia and ADHD moved out of home this summer, to another part of the country about 2 hours away from us.

 

He has been working since he was 18 for the same company, initially part-time and then full-time. He decided he wanted to move to another city where he had friends from special school/college, so he organised a job transfer and then found a little studio flat.

 

He is able anough, and motivated enough, to do this by himself. However, he still needed a lot of support with the practicalities, e.g. we organised the actual move.

 

It seems an awful lot to expect your stepson to just move out and live independently in one go if he hasn't been working on his independence skills. My son has wanted to leave home for about 2 years, but it took this long for him to establish the relevant skills, and he was already working full-time.

 

Have you thought of a phased transition, with living independently as the ultimate target? I would have thought he needs to start by getting some kind of work, even if it's voluntary/part-time to begin with. Or if you feel this is unrealistic for his ability, he would stil need some kind of transition programe based on independent living skills. If he doesn't cook for himself, shop for food, wash clothes, etc, already he can't really be expected to be able to do all this suddenly just because he has moved out.

 

The only other tip I would give is to go for some kind of flat with inclusive rent, so that he doesn't have to budget for all the different bills straightaway, just the one inclusive rent then food.

 

Personally I be would be very wary of just moving him out. My son has just spent the last few weeks sorting out an old friend who had nowhere to live and no money after leaving home, so he slept on his floor for a whiile. Although I was really proud that my son helped him, I did worry that his friend, a vulnerable young adult with difficulties, was in that situation.

 

Bid

Edited October 8, 2010 by bid

[Kazzen161]

My son has been learning to live independently over the course of the last 6 years, and he still needs some support and monitoring. I do understand how frustrating it can be, as at your son's age no-one will do anything without his permission.

 

Perhaps it is time for a serious talk - to explain that you will be selling and moving to a smaller place, and that that means he will need to move out. You could give him a date when this will happen and then work out an action plan with him, of what he needs to learn/do in order to be ready by that date. Then you can support him to learn these things. There are some things he could do now (eg: his own washing, cook a meal).

 

You could try Connexions, but I am not sure if they work with 25 year olds or just up to 25 years old.

[The Magenpie]

Thank you for your replies.

 

Connexions only helps up to the age of 24 unfortunately.

 

He does not meet the criteria for DLA nor for Advance housing.We have offered to make a contribution towards any form of sheltered housing but in our area there are no vacancies.

 

We have told him of our intentions and offered an action plan for him to consider independent living, but his attitude is "I will meet that when it happens".

 

He is capable of independent living as he attended a specialist college in Birmingham. In the third year they moved him to a shared house without supervision and he was ok.

 

He will not apply for any courses, despite the counsellor or the voluntary agency offering to help in the application.

 

 

We can't say whether he has depression or not as he refuses to go to the GP or for a mental health assessment.

 

 

It isn't resentment on the part of his dad and me, it's utter frustration and weariness, exacerbated by the fact that at his age he can legitimately refuse to co-operate with authorities and does.

 

We don't know where to turn for any further help.

 

Thanks

M

[Tally]

It's difficult to work out what's going on with him. But if he says he does not have mental health problems, then I think you have to treat him as though there is no reason why he can't do more.

 

It sounds like he does have a lot of independent living skills, since he has shown them before. He may have forgotten some of them through lack of practice, but you certainly should not need to start from scratch there. Perhaps he needs to take on some responsibilities around the house.

 

I don't think that offering to pay his rent for a year is actually helpful. Most landlords will check references and ensure the tenant has sufficient income to afford the rent, so I don't know how it could work anyway. If he is going to have to apply for a job or benefits in a year, then why not now before you have moved away from the area?

 

If he feels able already to meet all the parts of the action plan you have suggested, then maybe you can bring the deadlines forward.

[smiley1590]

how about llloking into N.A.S ( national . Autistic.Society)supported living support worth researching and finding more about here web links with more info :

 

 

 

http://www.autism.org.uk/Our-services/Adult-and-community-services/Supported-living.aspx

 

http://www.autism.org.uk/Our-services/Adult-and-community-services/Residential-services.aspx

 

does your step-son suffer with depression or anxiety?

 

XKLX

 

hope the web links helps in some way!

[smiley1590]

only he can make steps forward for GP or MH assessment when he feels 'erady' 'secure' and hits 'rock bottom' then he'll realise it reached such a stage something needs tpo be done but both you and your husband hands tied behind your back i can see your battling struggling to get him right treatment MH dxs etc but if he dragging his heels on the floor and resisting any help support treatment it's frustrating annoying hard to watch though i'd say he is depressed but what you've wrote he trying to deny the fact anything going on 'behind closed doors' he battling struggling with himself and his MH needs and probs he sound scared afraid he'll be seen as 'weak' if he admits hold his hands up he needs support help etc and hard thing to do .... but he'll get there in his onw time ... he get tired of if fed up he'll have enough ....

[The Magenpie]

Smiley1590.

Thank you for your replies.

Unfortunately I have spent 2 days trying to get in touch with The National Autistic Society by phone and they tell you to phone back. There is a Coventry branch but when I phone the number it tells me the phone is switched off and to try later. I haven't had any replies to emails either I sent last week. I appreciate they will be busy but even an acknowledgment of receipt would be a help. But they do not have any assisted living in our area.

 

We have decided to camp on Social Services doorstep to get a mental health assessment as the stepson refused to do basic chores around the house so we have to assume he is suffering from depression.

 

Thanks again to you all

M

x

[smiley1590]

sorry that the leads i have given havn't worked out and turned cold and stale sometimes have to make yourselves stand out nuisance so they will take appropriate action as this sounds like very emergency crisis situation that you are all in ... once made to face up to reality of independence is scary anxious time but also important wake up as know you need work on daily life skills and know to achieve successfully you going to need support along the way his insistence to learn when i need too when i move out i'm have to admit i exactly the same as him on that one as that pure factor of feelings rising of being scared anxious of level of independence and unpredictablity involved with it even though you know have parents guidance support etc so much involved becomes pressured strained overwhelming and tense so many obstables to beat down and get caught up fed up frustrated ....did you get any names of who spoke to at N.A.S on the phone when you rang up? as i would keep track record of when you rang who spoke to you as then you got this to fall back on .... to go back at that ....!!! he does sound lost confused frustrated all leads back to MH probs of depression and anxiety too!

[smiley1590]

refusing to do basic of tasks the source is normally depression based .... very legathic tired lack of motivation energy drive etc .... just wanting stay in the house all time in bed on PC ... but hard to seperate A.S and depression as so close in some areas ...

 

XKX

[Special_talent123]

If its a council home he is after then the waiting list could be 4 or 5 years long to get a place unless becomes homeless then its an urgent case.

 

also social services should be intervening- they at least need to do a care assessment or whether he be able to live independently and whether he cope. he may need some support coming in to help him with things.

[Special_talent123]

[quote name='

 

Connexions only helps up to the age of 24 unfortunately.

 

it should be 25 because mine is

[Tally]

refusing to do basic of tasks the source is normally depression based .... very legathic tired lack of motivation energy drive etc .... just wanting stay in the house all time in bed on PC ... but hard to seperate A.S and depression as so close in some areas ...

 

XKX

 

I disagree that refusing to do tasks is normally caused by depression. Depression certainly could be a possibility. But it can also be caused by laziness. Unless there are other signs of depression, I don't think anyone should jump to the conclusion that depression is the cause. If someone is refusing to seek treatment, I think you have to treat them as if they are not ill and force them into either getting off their backside and doing some chores, or admitting that they are not capable.

[Bluesbreaker]

I disagree that refusing to do tasks is normally caused by depression. Depression certainly could be a possibility. But it can also be caused by laziness. Unless there are other signs of depression, I don't think anyone should jump to the conclusion that depression is the cause. If someone is refusing to seek treatment, I think you have to treat them as if they are not ill and force them into either getting off their backside and doing some chores, or admitting that they are not capable.

 

I disagree with Tally on this, Depression does cause a lack of activity and willingness to do tasks etc, thats how i was 4 months ago.

 

The Lazyness bit.... I don't want to cause offense but May i suggest a metephorical boot up the rear end? I can be on the computer for hours each day sometimes, depending on what im doing, naturally it will be longer if research needs to be done etc... but I still find something else to do, Like going for walks, cycle rides (yes I am an Asperger's who can ride a bike), Play guitar, Read, go and meet my bestones, go downt the pub.... spend money as well for that matter... I think like the other have suggested, Look at the NAS support or hints tips, even some local Asperger's experts (if there are some around) and see about more social clubs, more social interaction, but within his interest field. I know this maybe difficult because ASD's as we know, tend to get 'obsessive' about some interests (for me, music and Railways) and this can lead to that blockage preventing the person from interacting with others (a common interest point or open mind is very useful)

 

If you see what i mean?

[Karen A]

I agree that people with depression may lack an interest in doing things that previously motivated them.However as Tally said this would usually be accompanied by other symptoms of depression.A person who is truly depressed would not be able to summon enough motivation to refuse to do things.People with depression may be so unwell that they are not motivated to do anything at all and cannot even accept the need for treatment however if a person was so depressed it would be very obvious to relatives.

 

I admit that AS might make things more complicated.However a person with AS may well be motivated to do things that interest them and less motivated to do things that do not interest them...this is different to being lazy [although I am sure people with AS can be lazy too]If they were depressed one indication might be a lack of interest in even things that they previously enjoyed.

 

Going back to the original post I would hope that any counsellor would be able to identify depression in a client they had seen a few times at the most.Even if the individual has depression that may not even change the advice the counsellor gives that the individual might benefit from being more independent.

Edited November 4, 2010 by Karen A

[bid]

Hmmm...I've suffered two bouts of clinical depression during my adult life, when I was really very unwell. But I still managed to hold things together just about enough to do my job, although it was part-time during both instances. I appreciate that many people hit the 'next phase' of clinical depression for want of a better phrase when they are unable to do anything as described above...but just wanted to clarify that it is possible to be suffering from clinical depression and still just about struggle through doing necessary tasks.

 

Bid

[Karen A]

Hmmm...I've suffered two bouts of clinical depression during my adult life, when I was really very unwell. But I still managed to hold things together just about enough to do my job, although it was part-time during both instances. I appreciate that many people hit the 'next phase' of clinical depression for want of a better phrase when they are unable to do anything as described above...but just wanted to clarify that it is possible to be suffering from clinical depression and still just about struggle through doing necessary tasks.

 

Bid

 

Yes it was a bit of a generalisation and I did not explain very well.

Even as I posted I was thinking about a friend.Last year he was so depressed that he was given a course of ECT which was a last resort after all medication had failed.He is doing better currently.However even when very unwell he continued to run a business.

 

I managed to care for two children under five when I could have been sectioned if my husband had not ben warned to keep me out of hospital.

 

However the important difference in all three cases is that we did continue to struggle to do things even when not really well enough.

In the case described in the original post the individual appears to perhaps be depressed and yet able to refuse to do some things whilst still able to do others.I know this does not rule out depression.However the counsellor does not appear to be suggesting it ia a major issue.If any counsellor with any experience had seen yourself,myself or my friend for a few minutes they would have been concerned.

 

I do not in any way intend to suggest that it is not a very difficult transition for any teenager becoming more independent.However even if depression is an issue I think a counsellor might still be suggesting strategies to increase confidence and independence in gradual steps.

 

Karen.

Edited November 4, 2010 by Karen A