Autism Act 2010

A friend went to their friends Autism appointment and was told there's a lady who can give you counselling and all the help you need. Except she can't. The lady is the local NAS branch officer. I have an email from her which says "we can't offer counselling" and explains that the idea of the group is to exchange views and to advise each other. (some of us have developed coping stategies and pass them on)

She's also on the spectrum and has had to cancel some meetings due to have meltdowns.

Hope said:

Even with diagnosis, support is patchy. I count myself lucky in that I have a trained Autism support worker, but I am struggling to get autism specific therapy for my on-going chronic anxiety and fear. There is no help here, in short, there is nothing that provides a proper solution. This needs to change. Lives and potential are going down the drain.

 www.dpm.cabinetoffice.gov.uk/.../clegg-pledges-400-million-improve-mental-health-nation

Your local Primary Care Trust should be looking into obtaining part of the £100 million per year over 4 years.

You could do something crazy like write to nick clegg if your support worker can't obtain any information. 

Even with diagnosis, support is patchy. I count myself lucky in that I have a trained Autism support worker, but I am struggling to get autism specific therapy for my on-going chronic anxiety and fear. There is no help here, in short, there is nothing that provides a proper solution. This needs to change. Lives and potential are going down the drain.

Silver100 said:

I think the problem is that services for Autism Spectrum are structured around children and their families [where they exist]. The authourities don't seem to realise that when the children, with a different neuro-development but who are not intellectually impaired, become adults they still have problems. From the forum posts I can see that some have support workers but I don't know of such a service in my area. At the moment my support is provided by a friend, but she is 70 this year and I worry about the future. There is a lack of a consistent approach.

I've noticed this. It seems that if you're a child, you get everything thrown at you. You can get assessments for Autism and related conditions. But if you're an adult, no such support exists. And university won't help because Autism is a medical condition (in the same way that being deaf is) and not a learning disability.

I don't know about anyone else; but if I had a proper diagnosis and the support I need, I wouldn't be in the mess I'm in now, which is about to cost me a friendship.

quote stuffed "

You will notice the deafening silence of NAS and nobody who is from the NAS has stepped up to say lets learn from feedback and improve.

So far the only response is deafening silence in the hope that either it will decend into impolite conversation or discussion will gradually subside."

DITTO !

The main problems

1) children are manipulated to conform and cognative behaviour therapy is seen as the answer, really embracing individual for who they are instead of hoping to mould them to something alien and cause anxiety and mental health problems. From my personal exprience 16 years old your on your own.

2)champion special skills instead of either using individuals as a cash cow or as they have no revenue stream supply no assistance

3)written off by society instead of focusing on what we can do, to suffer discrimination and neanderthal like support from people who simply do not have the capacity to understand. 

One of the problems in society is the need for mass conformity over individuality- while we talk about autism act, Disabled persons act and equalities act are all mere words.

From the responses on this forum it is obvious adult autism/aspergers sufferers are discriminated against by very organisation that claims to support us.

The reason for this is we have no monetary value-a shocking indictment of NAS and society as a whole.

You will notice the deafening silence of NAS and nobody who is from the NAS has stepped up to say lets learn from feedback and improve.

So far the only response is deafening silence in the hope that either it will decend into impolite conversation or discussion will gradually subside. 

None of us begrudge those less able than us or expect endless support, but the common irritation for adult autism diagnosed people is the complete lack of any tangible offerings to those of us that can't be monatarised

Urspecial

CQUIN TARGETS are insentives supposedly for excellence, the foundation trusts self collate evidence to gain payments.

www.institute.nhs.uk/.../cquin.html

I was forced to attend a meeting while stricken with diahrea and my direct payments were cut to force attendance when they had hospital consultants letters stating I was ill.

The meeting wasn't completed as second part the following week canceled as lady asked to do it thought it inappropriate will me visibly ill, that was mid December. 

My crime against dwp was to stand up to atos and say I was ill and they had hospital letters and carers letters-told I was refusing until I told them I was recording call.

Atos suddenly decided to read notes and told they had information and no need to attend.

5 hours key worker and socIal worker tried to get dwp to accept fax of atos letter or crisis loan.

Dwp called and annoyed I recorded atos call and said home assessment to which I agreed and said I wanted it recorded as my legal right. I also queried how aspergers and diahrea making me housebound a Health Care Professional asking me to sit and bend had any bearing- the woman had no intention of helping.

Dwp have locked my file so job centre can't access it and  since 25th feb I have rent arrears and no money comming in.

Ids www.express.co.uk/.../Tory-sneers-at-disabled

My personal opinion is the NAS funded by government and accepting donations will never stand up for adults without a revenue stream attached.

If I'm made homeless I will do my upmost to get press involved and as much adverse publicity as possible.

Stuffed said:

The autism act and equalities act etc are all great in theory, the problem particularly if the nhs trust is foundation status is the CQUIN targets rely on self collated evidence. There is a conflict of interest and the recurring theme with this is revenue streams. For all the fine words unless you are a revenue stream-your an inconvenient cost. Having had the benefit as a child being diagnosed and now 34 I can tell you that other than lip service promises to assist will never materialise. Also since Ian Duncan Smith has been on the scene it is abundantly clear by his views on disabled worker factories we are scum. While the NAS sit back and I stand to be pennyless and homeless- I have tried all angles and got knowwhere. Disabled genocide in my opinion

Hi Stuffed,

My mh trust has Foundation Trust status , so large parts of the Autism Act 2009 doesn't necessarily apply to them.

What is CQUIN?

I didn't know that they have to self report, but agree with not being in their revenue stream.

As having recieved my diagnosis from CAMHS, soo lucky I did, as now aged 19 it's a lot harder even with with the different Acts

What has IDS done now?

What is it with the forum and the NAS bashing.

Now I must admit that the NAS having £90m income is shocking and some of their services are crap

And I am being a bit ignorant here, but what are the particular concerns you + others (seeing other posts) have with NAS (apart from their revenue issues)?

If you don't mind me asking, why are you at risk of becoming homeless?

Have you approached Shelter for any advice?

Take care  

urspecial

autismtwo said:

Does anyone know, does the Autism Act cover Scotland ?

Why is Autism treated like a mental health disease with prescripted medication. I spoke to the disability side of social work today and they stated that they don't have social workers for people with Autism,, it is the community mental health team which deals with this side of things. I stated that Autism was a growth and development disorder not a mental health condition, only social difficulties under high level sensory stimulas. 

It seems,  I have been classified as MENTAL !, I have spend no time in a mental health hospital ?

I am confused ? Am I a spastic, mad or just some one with social sensory difficulties ?

Please someone enlightenment ?  

 

The Autism Act 2009 only applies to England, sorry  

The Autism Act (NI) 2011 applies to Northern Ireland

[See http://www.lawcentreni.org/component/content/article/63-policy-briefings/829-autism-act-northern-ireland-2011.html, if anyone's interested).

I do believe a Bill is in progress in the Scottish Parliament with Richard Wilson [actor] supporting it too. 

Can't really say the more about the mh/asd issue as everyone else has really covered it.

Take care,

urspecial

The autism act and equalities act etc are all great in theory, the problem particularly if the nhs trust is foundation status is the CQUIN targets rely on self collated evidence. There is a conflict of interest and the recurring theme with this is revenue streams. For all the fine words unless you are a revenue stream-your an inconvenient cost. Having had the benefit as a child being diagnosed and now 34 I can tell you that other than lip service promises to assist will never materialise. Also since Ian Duncan Smith has been on the scene it is abundantly clear by his views on disabled worker factories we are scum. While the NAS sit back and I stand to be pennyless and homeless- I have tried all angles and got knowwhere. Disabled genocide in my opinion

I think the problem is that services for Autism Spectrum are structured around children and their families [where they exist]. The authourities don't seem to realise that when the children, with a different neuro-development but who are not intellectually impaired, become adults they still have problems. From the forum posts I can see that some have support workers but I don't know of such a service in my area. At the moment my support is provided by a friend, but she is 70 this year and I worry about the future. There is a lack of a consistent approach.

The Imp of the Perverse

Surfing the net...yes, it does seem to cover Scotland. When I went for a diagnosis it was to a community mental health unit but in fairness to the powers that be...how else can they fit autism and Aspergers into their little categories? I don't think they can deal very sympathetically with people who genuinely feel they live on a different/wrong planet.

Apart from an initial scream into the wilderness, I think all that adult Aspies can do right now is to be as informed as possible, be absolutely adamant about what you want, and if it can't be had then to start something outside the mainstream services.

I have a fantasy of a town called Aspieville...which is quiet, the houses are well spread out, everything runs on time or not at all, and where Aspies and those who understand them look after themselves in a sympathetic community. Alas, there would need to be a small army to keep normal people out who would be desperate to get out of their rat-race lives...

Autism, as you rightly said, isn't a mental illness. Some people with Autism may have depression; so are on medication for the depression.

I don't know about Scotland; but the way social services in England works, means that if you have an IQ over 70, you're under the mental health team of social services and not learning disability and if you want a diagnosis as an adult, you're seen by the community mental health team.