What are your long term dreams for ASD children?

[anchovies]

I have been asked to contribute to our local autism strategy meeting focussing on the future and was wondering if I could get some opinions.

I have a 28 yr old brother with autism/learning difficulty who lives independently with a lot of support from direct payments and the independent living fund. We employ all our own staff and he is pretty happy on the whole. The main things I would say could be considered as "missing" though are employment/voluntary work and also his community involvement is minimal, he tends to do everything one on one with a support worker.

Just wondering what you would hope for your children. Where we live there is very little autism specific housing and social support. Just wondering if for example this would be something you would consider to be important? Thanks :)

My hopes are that he gets an education that enables him to live as independently as possible as an adult. Sadly I feel that is a pipedream with the current resistance against evidence-based practice, measurement of outcomes and accountability.

Thanks Starlight, are you talking about education as a youngster or later on as well?

I think there is a distinct lack of specific skills training for young adults. My brother did fantastically at an ASD specific school, learning skills for independent living. In addition his communication, understanding and general social skills improved massively. Sadly he then found that all of these skills were completely unsupported when moving back to our LA at the age of 19.

Well i thought we were supposed to be in an age of lifelong education so I would say for the whole life of a person. Education should always be accessible too.

Great totally agree. Do you mind me asking if you foresee your ds living independently in the future as things currently stand Starlight?

My db continues to attend (with support) local college courses (cooking, computing etc) but there is nothing available that isn't just for interest. What he really needs is budgeting, travelling independently, dealing with specific social situations, transferring skills etc.

I couldn't say tbh. He's only six. But I do feel that ANY chance of it is going to be down to me, not any services that currently exist including education.

He is in a fought for (and when I say fought I mean selling house, moving 5 times in 7 years, child protection investigations, investgated for DLA fraud allegations as a result of LA reporting, 2 tribunal appeals) school that I feel is just about adequate but not where he will reach his potential. He is safe there which is why the battle was worth it.

Have you heard of Active Support?

Wow starlight that sounds awful, my family went through something similar 20 years ago, seems like nothing has changed

Active support, is that like person centered planning?

DS has HFA and is doing well in MS school, so we hope that he will be able to live a relatively normal adult life, have a job, car, relationship and hopefully live independently. This will need a lot of support though - primarily from us and then presumably whomever he finds as a life partner.

I just want him to be happy and loved.

It's about breaking down all skills into tiny chunks and recording which elements the person can do for themselves and then making absolutely certain that they do, plus encouraging the elements they can'.

So, zipping up a zip for example.

Can the person a)pull the two sides of the zip together, b)attach it, c)slide it up.

Usually if they can't do any one of those then a helper will do it all, but with active support if you find that they can do a and c then you make sure you ONLY help with b, and every time you do b, you also attempt to teach them it iyswim.

Starlight, we are trying to help Bee with independence, I think that Active Support as a framework would be very beneficial for us. Do you have any resources I can share with her team at school?

Thanks Deafleopard, I guess he doesn't have support from social services at the moment then? Or do you not feel he'll need/be entitled to it later?

The happy/loved thing is our main focus for our db. It's easy to get bogged down in what he can't do, can't access, is missing etc. But the fact of the matter is he has so much love from his family, friends (and even his employees!) and is so happy with how things have worked out (his house etc) that we feel content on the whole.

The hardest thing we have found though is the fact you can never relax as the next drama is just around the corner!

If only it was the same for all, not just those with supportive families and who shout loudest...

Thanks Starlight for the info. We spend a lot of time with our dbs support workers ensuring the balance is right between not letting him do things on his own that are potentially dangerous (eg the ironing) and doing too much for him (eg putting the ironing away!) I'll investigate active support further :)

Training for support workers/PAs is definitely something for me to target.

'Do you have any resources I can share with her team at school?'

That would be Moondog's area, I'm afraid. She showed us some on her training day and I saw some more examples for adults at a conference recently.

ds2 is due to finish school soon and my hopes for him are that he is able to access some sort of supported employment and sheltered housing - I have no idea how to find out about this though so my dream would be that once he turns 17 someone like a social worker or equivalent, knocks on the door and tells us what is out there and how we go about accessing it. if the DLA can got themselves organised to send people around to see him as they did when he turned 16 and came to chat to him about his benefits and money and bank accounts etc, I don't see why ss or some other agency can't do the same.

I know that my son (13 S/MLD/ASD) will need quite a high level of support, but I hope that he will be able to live independantly with support. Ds needs to be sociable and busy, so I can see him needing to live alongside others who want to do active things. The social side is important- ds likes going out- watching a film, bowling, eating out. Supported employment would be good - ds likes trees and cooking (although he needs very close supervision at both!), he cannot cope with boredom so would need a balance of routine and excitement. I can see a supported social club with a rota of activities would be useful.
Mostly I worry that he will be not able enough to manage alone but not be considered disabled enough to get support. It is therefore important to us to get him set up before we become to decrepid to fight for him! I am looking at post 16 courses, perhaps with residential at 19. I visited an independent specialist school/college recently and the difference between that and his present SN school made it clear how little support he gets except at home.

Long-term - I can't think past tomorrow. I have a child who can't go to school without me, I can't plan or even work half of the time unless it is at night or at weekends.

I've become a live in the moment type of person because I have no time for anything else.

Inappropriately I was like that for many years (mostly still am), partly out of fear for the future and partly out of lack of time energy to do anything more than survive, but I went on a transistion course which helped me start thinking about the future.

DS is 5, but I hope he will be able to make friends and have meaningful interactions with his peers. I want him to be happy, to reach his potential and when he is an adult have some form of employment and independence, although as I have some experience of supporting young people and young adults with SEN in college, moving on etc I can honestly say that after 3 yrs in FE at the age of 19 there is very little out there (in our area certainly) and unless your difficulties are mild and you have a chance of an unsupported job then often the best you can hope for is an appointment with the disability adviser at the job centre. I really really hope that this improves on a national scale, although I doubt it. Local examples of good practice however would be great to see.

Well, my DS has very severe social communication difficulties but quite good fact-based / areas of expertise communication, and he is clever and luckily not massively rigid so I am thinking that adulthood will be easier for him in many ways, he will find a niche. My main concern is that how he will ever get a job as he cannot talk socially to people at all (he is selectively mute in social interactions). What I would hope for him is that he is understood, that he is happy and that as an adult he lives independently and has a fulfilling job (probably in something highly academic but where communication skills are not a priority!).

DS has HFA and is a bit like yours ilikemysleep, very bright but nevertheless severely disabled by his other difficulties (he has other more complex needs on top of social communication too). I have to frequently reassess my expectations for his future. At primary school he was bright enough for all professionals to think he just needed his quirkiness ironed out, but his IQ would help him achieve independence. But as he's approached adolescence, I'm finding the gap widening between him and his peers and he is far less independent, and more demand avoidant.

Now, my hope for the future is that he'll be able to qualify for whatever funding is available at that time (PIP/ESA and whatever they have then), and perhaps stay in some form of education for as long as possible, as that's an environment where he can be usefully engaged but it isn't as unforgiving as a workplace. I'd be happy for him to spend his time doing things that he enjoys, but I'm not sure if I can see him working in a paid capacity and I can't see it being beneficial to him. We're fortunate that we'd be able to support him financially if he was turned down for benefits, but I'm trying to keep up to date with the various changes as much as possible so that I can advocate for him when the time comes.