Fairly depressing Time Magazine article about severe autism in adulthood

[saintlydamemrsturnip]

Here. Something that I've learned from some of my email lists is that we are actually much better off here in the UK when compared to the States with adult care provision. I think in part this arises from the almost total inclusion policy in the States, where there are no special schools, and very limited adult care provision.

You should write an article Mrs Turnip. You'd get the balance right between realism and not using words like "burden".

Crikey - that's grim reading. Must be pretty bad in the States if that's the experience of a family that was actually trying their best for their son. How awful to be a parent and know that you are going to be leaving your son in such a tenuous position. I don't want my ds to be a burden on his siblings but I do like to think they would WANT to be there if I couldn't. Sorry rambling...

I think tbh adult care is pretty non-existent in the States. Judging by articles I've read and an email list I'm on for parents of individuals with severe autism. I suppose their social care system is pretty poor, so it's not surprising.

Locally we have some excellent adult care provision. Expensive, so you have a battle to get SS to fund, but at least it exists.

WRT the siblings I think it depends really Seuss, I hope ds2 and ds3 look out for ds1 but I really don't expect them to look after him. It is more than a full time job and needs more than one person. As an adult his needs will be even greater. It is beyond one person's means imo.

Thank goodness we do have a choice- I see it as my job to get him into a great place, and then for his siblings to take on that - make sure he is somewhere well supported and happy. Thank goodness those places do exist here.

I noticed the 'burden' thing bullet. TBH I'd be pretty upset if ds2 or ds3 grew up and spoke about their brother in the way the guy in the article has, but then I know we've had a lot more support than his family had. So I don't want to judge iyswim - but does remind me to keep making use of that support.

What sort of places have you been looking at MrsT? I haven't done any research on adult provision yet (ostrich mentality mainly) but think it would be good to have an idea, if only with regards to possible financial planning.

Blimey, that's a depressing article.

Oh I haven't done huge amounts yet sphil. But the Priory are good (pay their staff well and train them) and someone who runs Coombe House - a Priory residential unit for adults from 18-35ish came to school to talk to parents. It looks brilliant tbh (and I know a pro who I trust who has seen it and she says it's great). There are animals, and climbing walls and education, and a dance study and lovely rooms. The guy who runs it was very positive and said that places like it will increase due to parent demands. He also talked about supported living house which would be able to access the facilities but give a greater degree of independence (maybe suitable for your ds2?). Its half way between us

There;s also Spectrum locally which runs some pretty good homes. Although they don't support ds1's end of the spectrum quite as much.

that is something I am giving serious thoughts ,to as am considering a stateside move and something weighing up against support get in childhood .

Thanks MrsT - will look up now. While I'm feeling strong!

I think you're right Mrs T, I see it as my place to make sure ds1 is settled somewhere appropriate (not sure what we'll be looking at yet?!?!) but like to think that his siblings will keep that going.

Good point about the increase in parental demand, I'm noticing that already with some of ds' friends who are moving on to secondary school - parents are demanding improvements and adjustments be made, whereas in previous years I think parents haven't felt able to. Like on here, we are all far more aware of what can and should be done for our children and far more likely to demand it, than parents in the 70s. That and the fact that there are more of us now!

OMG that is really awful - thoroughly depressing.

Phoenix- do you have dual nationality?

Another good place to look at adult provision is the ads in Communication Magazine (if you can bear to join the NAS )

The Autism Trust (??) there are 2 - one is Scottish, but it's the English one I'm talking about - is also campaigning for and setting up adult provision.

The Autism Trust

Mrs T, what an emotive film on that website, I managed to stay dry eyed right until the end witht the little boy talking about his brother.

I know i've posted about him before, but my cousin with severe autism & now an adult is an example of how with the right support & provision the future is good.

He has always been non verbal & as a child had soem very challenging behaviours & his future looked to be very scary. Certainly it was thought it would involve institutionalised 24/7 care.

Whilst he has wonderful family & parents his turning point was definetly residential school. With that continuity of care & stability his behaviours settled his life skills improved & he was able to grow in to a much calmer young man.

He lives in an assisted housing scheme near to his parents & works part time at a garden centre, which he loves.
He is an adult that contributes to the community & is just wonderful company.

I know his story will not be the same for everybody but it is about having the best support & places available to meet the needs of the person & family.
Even for a severely autistic child adult life can be good.

oh that's lovely anon.

I think you hit the nail on the head as well- ds1's quality of life is affected so much by his calmness. When he's calm he can access all sorts, when that goes his world becomes so much more limited.

His mum honestly believes if he hadn't gone to residential school, he would be a very challenging adult & they would eb looking a tfull time residential care for the future.

He did require 2 adults to take him anywhere as a child.

Residential school isn't for everyone but for my cousin it gave him the constant input he needed to learn, he was not a child that would learn a new skill easily & it took many months of repetition & teaching for him to develop any functional life skills at all, family life just doesn't allow that level of constant input.
Residential school did as day to day family life doesn't interupt the learning process.
TBH (as i understand it) very little time was spent on any sort of academic learnig but it was all spent doing the activities that he needed.

That's a lovely post Anon - thank you.