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AIBU?

Adults with autism usually cannot live independently on their own

77 replies

RhinoKey · 29/09/2011 18:13

According to the Daily Mail (I know, I know) here

AIBU in hoping that this is wildly exaggerated (for my DS2's sake if nothing else).

OP posts:
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Itsjustafleshwound · 29/09/2011 18:15

Another well-researched, balanced DM article .....

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Pixel · 29/09/2011 18:16

Obviously it depends doesn't it. It is a spectrum after all, some people are very able and others not. My ds will almost certainly never live independently.

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DownbytheRiverside · 29/09/2011 18:18

Ridiculous generalisation, it is such a wide spectrum that it is impossible to say that and be taken seriously by anyone with any understanding of the issues.
Some will, some won't and with most it depends on where they are living and whether they have co-morbids alongside the condition. I know several adults with HFA who live independently and have lucrative jobs.

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NiecieTheTerminator · 29/09/2011 18:23

Well, if we are talking autism rather than Aspergers I would have thought that was roughly true. It does say 'usually' so obviously some will be able to live independently.

My DS has AS and dyspraxia and really, I can't see him ever leaving home. He just couldn't organise himself. I hope I am wrong - he is only 11 so there is time - but I reckon he will stay because it will be easier than struggling through life by himself.

Here is one piece of research with an indication of outcomes -
Here.

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unpa1dcar3r · 29/09/2011 18:25

It does depend on their level of ability Rhino. Pretty much what posters have already said.
I was at university with a very HF autie who got an excellent degree and at the other end of the scale my daughter is a behavioural support worker for a lad who will never ever function alone, no speech and very limited understanding of the world or indeed his won environment.

Only time will tell with your child.

Just as an aside i believe Bill gates, Albert Einstein and a few other famous incredibly clever people has Aspergers, a form of autism.

So that comment was too sweeping and inaccurate.

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HecateGoddessOfTheNight · 29/09/2011 18:30

I would imagine most children with classic autism won't be able to live totally independently as adults.

But many with aspergers, hfa, autistic traits, etc etc certainly will (and do!)

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HecateGoddessOfTheNight · 29/09/2011 18:33

damn it. Always pressing post too soon Grin

My youngest certainly will never be able to live an independend life. He won't even be able to have his own flat with a support worker coming in to visit. He will likely be in a home.

My oldest, otoh, I truly think will be able to have his own flat and just have support workers coming in to help him.

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trailofevidence · 29/09/2011 18:34

Only 15% of adults with autism have jobs, apparently (this figure has been quoted by the NAS as well). The article does say "usually cannot adapt" as well so that figure would support it (can't believe I'm defending the DM either).

However, I think the poor life outcomes aren't necessarily a direct consequence of the condition but rather of poor intervention, as decent quality educational provision and therapies costs money.

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NiecieTheTerminator · 29/09/2011 18:40

Hecate, would you call living in a flat with a support worker independent living though? Not saying you are wrong (how can I, I don't know what you think!) but that isn't independent to me. The individual would be reliant on the support worker.

I suppose the accuracy of the statement depends on what you call independent as well as defining the term autism.

I suppose we can't really expect the DM to get into a discussion of what is autism v AS v HFA and what that means for outcomes. It is a piece about a footballer not about the nature of autism.

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DownbytheRiverside · 29/09/2011 18:44

'I suppose the accuracy of the statement depends on what you call independent as well as defining the term autism.'

I've got a friend that lectures at Cambridge, lives in college. With catering, bills sorted, laundry service and help on tap. All he has to do is be incredibly clever and get to lectures and seminars on time.

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spookshowangellovesit · 29/09/2011 18:49

my daughter had no speech and no awareness of her environment etc and was written off as SDL, she is now integrating in to the main stream school regularly with a view for this to be a permanent goal either while at juniors or at secondary school. she is she highest functioning autistic child in the unit and i think she will do very well in life.
i am preparing her for life as much as possible in the hopes that she will be able to lead her own life when she is older.
sorry but words like "usually" are just poor journalism, it imply's most but leaves the get out of jail free few, so they can say we didnt say all.

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notcitrus · 29/09/2011 18:52

A good friend of mine is autistic (not just Aspergers), has a degree and lives by herself. She has a housing officer to talk to when needed, and a number of other friends she can phone up with anything that is a crisis to her. Assuming her DLA and ESA get renewed (huge terrifying assumption there...), given she can't hold down any job, she can cope pretty much fine.

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NiecieTheTerminator · 29/09/2011 18:55

DownbytheRiverside - I wouldn't like to say whether that was independent or not. Can I be very nosy and ask if your friend has AS or is classically autistic or HFA (although I am never quite clear where that is different from AS)?

I suppose for me, if the the support worker were to disappear (or college staff in your friend's case) would the individual be able to function properly, i.e. eat properly, have adequate levels of personal and household hygiene, cope with money etc in the medium to long term (i.e. for more than a week or 2). If they couldn't then they couldn't live independently. I am sure that there are plenty of NT single people leading a similar lifestyle in colleges but they probably aren't living independently either even though they could.

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FrillyMilly · 29/09/2011 18:58

I would deem living alone with support as independent. I am an able bodied adult and I still need support from people in my life.

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Arabellamilla · 29/09/2011 19:01

I have to change the way I term "Autism" I think, My son is severe no speech, nappies at age 9, limited understanding of the world, SLD school etc etc to me someone with "Classic Autism" just wouldnt have a degree or be working, having relationships etc etc, maybe someone with Aspergers or ASD? I know its a spectrum but to me Autism describes the more affected individuals

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Kladdkaka · 29/09/2011 19:05

Am I not living independently then?

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Kladdkaka · 29/09/2011 19:12

Just out of interest, are you all aware that the different labels for autism (ie hfa, asperger's etc) are being done away with because there is no clinical difference? The new DSM diagnosis will be just Autistic Spectrum Disorder.

(By no clinical difference I mean it's exactly the same condition whether it's Asperger's or Kanner's, although of course the level of impairment varies from one person to the next)

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cricketballs · 29/09/2011 19:30

I don't know; this is the main worry we have about our ds2. I honestly don't know if he will ever be capable of living independently. Whilst he is not on the severe end of the spectrum and as he is only 12 there really isn't anyway of knowing but my gut feeling is that he never will be able to.

I think that my feelings mainly stem from his learning difficulties though rather than his autism....

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Arabellamilla · 29/09/2011 19:30

I think thats ridiculous to be honest. Two of my sons are affected one with very mild aspergers and one with very severe autism. They are completely different on so many levels and need totally different care and support. Its hard enough describing their conditions as it is :(

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MangoMonster · 29/09/2011 19:34

DM is a pile of s**t. It's a spectrum... So I guess it depends on the individuals strengths and weaknesses.

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PeachyWhoCannotType · 29/09/2011 19:37

I think it's true- on the basis that until not that long ago autism emant a severe disorder, the milder variants ahve not been picked up more recntly adn the people with those have mainly been dx'd in what, last 15 years, so within the could well be still at home range anyway.

I expect ds1 to work and leave home, ds3 not a bloody hope. I don;t consider a support worker independent living but I do think it is better than a resi unit and it's what we aim for with ds3 although am not sure it is possible


Kladd not only that, big study not long ago did analysis of behaviours fro aprental reports on people on spectrum and found that the label had no effect on severity of behavioural disorders: which is interesting. Sums up my house but has implications for the' AS is not real get a job you shirking git' brigade! (AKA ATOS)

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Andrewofgg · 29/09/2011 19:40

Daily Hate Mail is what it is and you don't blame a skunk because it stinks.

We have friends whose DS, now late twenties, is ASD - I don't know the particulars. I do not believe he will ever hold down a job or live independently and the parents are just shutting their eyes. They seem to think that they will live for ever. Quite well off but they have two younger NT daughters whom they ought not to disinherit, and in any event if they spend long years in residential care, which is the fate which awaits so many of us, there may be nothing left.

I wish I had any confidence in his future.

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PeachyWhoCannotType · 29/09/2011 19:43

Depends on teh support as well- if NAS worker who pops in every day and is on call for chats then independent

If as where I once worked someone in place 24 / 7 for all cooking / domestic tasks / etc then not really

Atrabella technially ASD covers all individuals; HFA high functioning ASD (that means average + IQ but language issues at or before 3), AS as HFA without language issues; autism languag and IQ diffiulty

But then you get kids like ds3 who are atypical- he has a finctional dx of autism and a dsm one of HFA; no language until 3 but bright- exceot that he is severely imapired by attention issues and phases out a lot, much like ansence epilepsy except that was checked and clearred. A chidl who goes into the distant world is not going to work or be independent as an adult.

To me severe should really refer to anyone who won't be able to get amrried or have a NT independent life; that is surely severely affected? Doesn;t mean there are not degrees of severe but moderate seems sensible to classify those who can get by with a lot of input (dauly) and mild less so.

I can;t see how a condition that steals your life chances so absolutely is not severe tbh

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RIZZ0 · 29/09/2011 19:46

If the work experience journo that wrote it had written "Some children with autism, especially the severely autistic cannot adapt to independent living as they move into adulthood" they might have got away with it.

All very rudimentary, don't expect more from DM really.

Love, however, the thumbnail on the right hand side talking about Imogen Thomas, and inferring what a trollop she is for wearing a bikini in the sun. Now that is classic Daily Fail... "Look at this girl with hardly any clothes on ! Isn't is AWFUL! We've printed not one, but two large photos of it because it's sooo awful!!"

Tools.

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Jamillalliamilli · 29/09/2011 19:48

?but to me Autism describes the more affected individuals.? And therein lies the rub. People are encouraged to see Aspergers as less affecting and autism as more so. But the reality is both conditions are differently affecting, not more so, or less so. Yes, the high functioning ?end? of the spectrum is heavy with Aspergers and the non verbal 'end' is heavy with ?classic? autism but it isn?t an definitive indicator.

While people with HFA are taken as representing the Aspergers population, the reality is the swathe of people with Aspergers who are unable to function well are then assumed to have ?classic? autism, and autistic people who cope well are labelled as Aspergers.

It's a particularly prevalent assumption made over women from both groups, and adds to the problems in gaining appropriate support and overcoming some of the barriers to living well.

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