Headline BBC Autism

[JsMum]

Saw this on the bbc website about transiting into adulthood for those with Autism are not given adequate support, interesting reading.

 

http://news.bbc.co.uk/1/hi/health/6897908.stm

 

 

 

JsMUM

Edited July 14, 2007 by JsMum

[pearl]

Thanks, Jsmum. This is RIGHT where we are at at the mo. JP has left college, & our safety net has gone. I am dreading the next meltdown as I know he cant go to college & talk to his counsellor.

 

So far I've found v little "out there" unless you count specialist counselling at �60 per hour.

 

We are lucky in that his apprenticeship seems to be well supervised. He got his induction pack this week & they make it clear they welcome partnership with parents which is a huge relief as I was wondering what if any my role would be.

 

If all goes to plan, he will get a permanent job following the apprenticeship, save hard, then either buy his own place or share a bigger mortgage with us so we can get a place with a granny flat or something for a few years till he can afford his own place. And we are very, very lucky to have such a hope in our lives. But it feels very fragile, I have no idea how he will cope with the world of work (and how the world of work will cope with him)

[Neil Young]

Thanks, Jsmum. This is RIGHT where we are at at the mo. JP has left college, & our safety net has gone. I am dreading the next meltdown as I know he cant go to college & talk to his counsellor.

 

So far I've found v little "out there" unless you count specialist counselling at �60 per hour.

 

We are lucky in that his apprenticeship seems to be well supervised. He got his induction pack this week & they make it clear they welcome partnership with parents which is a huge relief as I was wondering what if any my role would be.

 

If all goes to plan, he will get a permanent job following the apprenticeship, save hard, then either buy his own place or share a bigger mortgage with us so we can get a place with a granny flat or something for a few years till he can afford his own place. And we are very, very lucky to have such a hope in our lives. But it feels very fragile, I have no idea how he will cope with the world of work (and how the world of work will cope with him)

 

A piece of work is going on currently regarding transition and ASDs. Please contact

 

philip.bannister@blackpool.gov.uk

[pearl]

Why thankyou, Neil

[mrs.ddh]

...we can get a place with a granny flat or something for a few years till he can afford his own place. And we are very, very lucky to have such a hope in our lives. But it feels very fragile, I have no idea how he will cope with the world of work (and how the world of work will cope with him)

 

Hiya Pearl,

 

My son is 14 (ASD) and told me a few months ago that 'Mum, I'm always going to live with you, right? You can get a house with a granny flat.'

 

He has it all planned I guess! Heavens me, I cannot even begin to think about him working... how would they feel about him breaking into song? Or dancing at the drop of a hat?

 

ddh

[pearl]

Yes JP has a Grand Plan. His involves living on his own eventually though. I may get my empty nest yet.

[Canopus]

Saw this on the bbc website about transiting into adulthood for those with Autism are not given adequate support, interesting reading.

 

http://news.bbc.co.uk/1/hi/health/6897908.stm

 

Who exactly do you want to provide support to adults?

 

In my experience of things, most support organisations for adults are either very localised, run for only a limited period of time, are built around bad compromises, or are very small and ineffective.

 

The NAS really is a dog with no teeth that probably gets in the way of forming more effective organisations.

[pearl]

Who exactly do you want to provide support to adults?

 

In my experience of things, most support organisations for adults are either very localised, run for only a limited period of time, are built around bad compromises, or are very small and ineffective.

 

The NAS really is a dog with no teeth that probably gets in the way of forming more effective organisations.

All JPs support has come through education. So now that he's out of education, all support stops. It would have been nice if Connexions, for instance had got in touch. Unrealistic to expect Health Service to get in touch as he's had no contact with them since dx at 5! (They said they'd be back in touch if they wanted to do any research - in other words, if we could be of any use to them, not the other way round). And we've never had any input from Social Services.

 

My major concern is that if he struggles in work, who does he turn to? Pretty sure there will be counselling services in such a large organisation, but doubt they do long term stuff & have much experience of AS.

[TheNeil]

My major concern is that if he struggles in work, who does he turn to? Pretty sure there will be counselling services in such a large organisation, but doubt they do long term stuff & have much experience of AS.

 

When I announced my AS dx to my (then) firm I was totally disappointed with the response This was a firm with 3000+ employees worldwide (over 1500 in the UK alone) and I got nothing back for several months. When I finally pushed and kept pushing I was told that the company lawyers had investigated and hadn't found anything.

 

Let me just write that again the company lawyers - the <insert VERY rude word here>s made sure that they knew the legal side of things but couldn't give a <insert another VERY rude here> about actually investigating or providing any sort of help for me.

 

I hope that he has more luck than I had Pearl (I really do) as it seems to be totally down to individuals and firms rather than some sort of concerted effort or widely recognised support system.

[pearl]

When I announced my AS dx to my (then) firm I was totally disappointed with the response This was a firm with 3000+ employees worldwide (over 1500 in the UK alone) and I got nothing back for several months. When I finally pushed and kept pushing I was told that the company lawyers had investigated and hadn't found anything.

 

Let me just write that again the company lawyers - the <insert VERY rude word here>s made sure that they knew the legal side of things but couldn't give a <insert another VERY rude here> about actually investigating or providing any sort of help for me.

 

I hope that he has more luck than I had Pearl (I really do) as it seems to be totally down to individuals and firms rather than some sort of concerted effort or widely recognised support system.

The signs are good so far, Neil. His new supervisor has been very proactive in contacting us, attending a parents/students meeting at JPs college, getting the details of an aspie employee & line manager from the county council who were there, & organising an extra meeting with us before he starts. She's keen to learn, & hopefully her attitude will trickle down to the rest of the organisation. Fingers crossed.

[Canopus]

I hope that he has more luck than I had Pearl (I really do) as it seems to be totally down to individuals and firms rather than some sort of concerted effort or widely recognised support system.

 

Even trade unions do next to nothing to support people with AS or raise awareness of the condition amongst employers. They really could put in more effort but their bosses are more obsessed with other less important matters like fighting the B*P.

 

The problem I find is apathy as nobody wants to get off their butt and do anything unless there is an immediate (financial) reward for them.

 

This is a bit cynical, but my real world experience is that most parents of AS kids are just interested in the welfare of their own kids at whatever school they attend as opposed to contributing to a larger scale AS support movement.

[pearl]

Even trade unions do next to nothing to support people with AS or raise awareness of the condition amongst employers. They really could put in more effort but their bosses are more obsessed with other less important matters like fighting the B*P.

 

The problem I find is apathy as nobody wants to get off their butt and do anything unless there is an immediate (financial) reward for them.

 

This is a bit cynical, but my real world experience is that most parents of AS kids are just interested in the welfare of their own kids at whatever school they attend as opposed to contributing to a larger scale AS support movement.

Yes, it is a bit cynical Canopus. I know loads of parents who are involved in the wider issues, but for most of us its a full time job ensuring our child gets equitable treatment, that has to come first imo. And by fighting for our own children, we are hopefully paving the way for those that follow. JP's schools, for instance are much more AS friendly as a result of his trailblazing over a decade ago. We have to sweat the small stuff as well as the big stuff.

[mrs.ddh]

Yes, it is a bit cynical Canopus. I know loads of parents who are involved in the wider issues, but for most of us its a full time job ensuring our child gets equitable treatment, that has to come first imo. And by fighting for our own children, we are hopefully paving the way for those that follow. JP's schools, for instance are much more AS friendly as a result of his trailblazing over a decade ago. We have to sweat the small stuff as well as the big stuff.

 

I agree with the aspect of trailblazing. For over three years we have been trying to get the LS dept and the SENCo at our son's school to do anything for him (HFA 14) and finally this autumn they will be training up a TA in ASD to work with him and they are bringing in an ASD expert to help formulate his IEPs. I know this is small potatoes, but once the TA is trained she will be able to help others in the future. As for finally consulting experts for help, the gate is open there too.

 

ddh

[pearl]

I agree with the aspect of trailblazing. For over three years we have been trying to get the LS dept and the SENCo at our son's school to do anything for him (HFA 14) and finally this autumn they will be training up a TA in ASD to work with him and they are bringing in an ASD expert to help formulate his IEPs. I know this is small potatoes, but once the TA is trained she will be able to help others in the future. As for finally consulting experts for help, the gate is open there too.

 

ddh

Not small potatoes at all hun, well done you for fighting so hard. I do take my hat off to those who can get involved nationally, but theres only one of me. I work, I look after my old mum and I'm JP's advocate. If I spread myself any thinner I'd be selling him short. So (for now) I leave the Big Stuff to others, & make no apologies for that. Grassroots stuff is just as important.

 

Hope the training goes well xx

[Alyth_mum]

I'm another one who stays close to home ....with all 3 having different issues at school up to now I have concentrated on my own BUT I'm more than happy to try and help others to fight similar battles locally and hopefully with forums like these we can all support one another and pass on things that have worked and thus the knowledge spreads across the whole country (and beyond).

 

Maybe if YS settles into school come August I'll have time to be involved in something with further reach IYKWIM but until my children are sorted I have to concentrate on them. (NO ONE ELSE WILL IF I DON'T)

 

Louise

[Canopus]

Personnel Today have now published my comment. Tell me what you think of it.

[Mumble]

Personnel Today have now published my comment. Tell me what you think of it.

Impressive. What's the readership like - positive comments like this need to reach a wider audience.

[pearl]

Well done Canopus

[Canopus]

Impressive. What's the readership like - positive comments like this need to reach a wider audience.

 

I'm not sure how many people read Personnel Today and the Asperger Technical URL isn't clickable so I can't get a reliable figure from the traffic statistics.

 

I have searched the websites of many trade journals and references to AS are few and far between, hence the statement "it has almost completely passed the business community by" because if the business community knew about AS then they would write about it.

[Bard]

You are well-named Canopus. Not just a star, but a pilot and guide for others!

Excellent response, and a good suggestion as to a way forwards for the business community. Let's hope that they follow your lead.

[pearl]

Is that what Canopus means then?

And there was me thinking it might be something Egyptian, durrrr.

[Bard]

Is that what Canopus means then?

And there was me thinking it might be something Egyptian, durrrr.

 

It's Greek. Canopus was the name of the pilot/steersman on Menalaus' shipwhen he went to Troy to get Helen back. Pilots are guides through tricky waters. It's also the name of a bright star, but I can't remember which constellation. Storyteller, not scientist you see!

[pearl]

Aaah right, I should have asked mr pearl as he's the greek scholar in our house. I must have been thinking of those jars.

[Bard]

I've just googled and found this:

"The other etymology of the name is that it comes from the Egyptian Coptic Kahi Nub ("Golden Earth"), which refers to the way it would appear near the horizon in Egypt and be correspondingly reddened by atmospheric extinction from that position.[citation needed] There is also a ruined ancient Egyptian port, Canopus, apparently specifically named for the star, near the mouth of the Nile; its site was the location of the Battle of the Nile."

 

How nice, we were both right.

Why did you choose the name, Canopus?

[pearl]

Ooh I'm feeling really clever now, & it was all accidental.

[Canopus]

It's Greek. Canopus was the name of the pilot/steersman on Menalaus' shipwhen he went to Troy to get Helen back. Pilots are guides through tricky waters. It's also the name of a bright star, but I can't remember which constellation. Storyteller, not scientist you see!

 

The star is Alpha Carinae in the constellation of Carina. It is out of view from Britain but can be seen below a latitude of 37 degrees N. There is also a town in Egypt called Canopus which at one time was the northernmost town which the star was visible from, and it isn't known whether the town or the star got named first.

 

The USS Canopus is one of the ghost ships that ended up in Hartlepool.

[Bard]

The star is Alpha Carinae in the constellation of Carina. It is out of view from Britain but can be seen below a latitude of 37 degrees N. There is also a town in Egypt called Canopus which at one time was the northernmost town which the star was visible from, and it isn't known whether the town or the star got named first.

 

The USS Canopus is one of the ghost ships that ended up in Hartlepool.

 

So, guiding light or toxic ship that no one wants!

I'll continue to think of you as the former, especially when you illuminate areas that others do not want revealed or to have to consider!

[Canopus]

So, guiding light or toxic ship that no one wants!

I'll continue to think of you as the former, especially when you illuminate areas that others do not want revealed or to have to consider!

 

Sadly employers will think of me as the latter.

 

There seems to be a culture and etiquette in the engineering and IT industries of "the government should keep their hands away from what we do". Most engineers and IT workers are believers in free market economics with minimal government intervention, and people who hold different views are not usually very popular both with management and colleagues. This culture probably explains the lack of interest in engineering and IT companies wanting to employ disabled people of any type. They are deemed bad for business and might possibly bring in people who prefer more government intervention in industry as modern day Trojan horses.

 

This is why for the time being Asperger Technical is focusing primarily on the public sector.