How about an specialist Autistic Regulatory body ?

Thanks Alex

Hi there,

It's certainly true that the Autism Act has not been fully implemented by the authorities who ought to be doing so. The NAS is running a campaign - Push for Action - to work with grass-roots campaigners to ensure that all authorities are held to account. You can add your voice on the website.

Thanks,

Alex R

Longman, you must have investigated this a lot - and sad to say that you're pretty spot on for my area.  The Commissioning Lead is lead for adult mental health services (MHS), not autism specifically.  There is an equivalent for the children's services too and it's the same set up.  I find it insulting that they start off by viewing autism as a mental health problem and not a neurgological one, yes OK many of us have co-morbid mental health issues too (most of which could be caused by living with autism in a difficult environment without support or adjustments), but some won't and it's a miscategorisation (something that bothers me as an Aspie). They appear to be paying lip service only to the autism Act by having consultations and saying "oh yes, this needs to be done" etc. but fast forward another three-four years and it still hasn't.  They are fine at identifying the problems but crap at resolving them.

The local adult diagnostic service manager stated about 6 weeks ago that NHS NICE Guidelines are "only guidelines and we don't have to follow them" despite the fact that they are backed up by statutory guidance.  A senior psychologist in MHS told me a few days ago that MHS "doesn't specialise in working with Asperger's syndrome" and I have communicated this to the adult Commissioning Lead, of which here is a snippet:

"According to the Autism Strategy 2009 and the Autism Act 2010 and Statutory NHS Guidance (which incorporates NHS NICE Guidelines) the NHS is legally obliged to provide an autism care pathway, so I don't think saying that MHS "doesn’t specialise in working with Asperger’s syndrome" is even allowable.  It may not be a specialism per se, but the duty is there to provide appropriately qualified practitioners (by that I mean trained in ASCs) to provide the therapy/intervention needed by people on the spectrum."

I'm also still fighting my GP for reasonable adjustments which has been going on months now and he's still finding excuses for getting out of.

Basically the Act seems to be a dog with no teeth, no-one is policing this.  If they were, the NAS wouldn't need to have it's red button campaign.

Aspergers Condition may not even seen as existing condition in professional reality has it is classified under the heading of Autism, until social communication disorder is put into the professional diagnostic manual, it is a social manipulation of the word autism.

Aspergers will be seen as a type two autism diabetes(so too speak) condition,, and treated without full attention of the professionals until it reaches type 1 autism diabetes, or in the real case of Aspergers, forms a secondary mental health problem due to lack of support, these secondary conditions will fit nicely into there existing mental health system. So this creates meantime a care gap with Aspergers, until you collapse or become critically ill. Which is half the talk on this forum, lack of support. I would add it adds to the political economical social manipulation just now that the government and agencies are cutting right down on the diagnoses where they can so less people can claim  support due to austerity. Aspergers is paying the price for this in the autism sector, but at the end of the day, waste of time policy, because, it will only get worse and use up more resources later and cost society more. Typical Tory short-term non-social thinking. But on saying that, that is were the ghettos and low income zones come in handy, to hide us all away in these modern open air mental health institutions called ghettos, were the GPs and medical staff are low standard third world influxs. God save the Country.

I am now being to see how this works... I have aspergers, but I do not have recognised Governmental full Autism, the care professionals,,(docs) and only interested in me, because I have secondary mental health issues due to lack of care. Anxiety, O.C.D etc. What these governmental scum, don't realise is,, Aspies if they get the bone between there teeth will not let go !!!!  Government,, watch out the aspies are about ! coming to office near you !

This situation is cruel on people with aspergers, or half autisms. Sorry this is the only way I can explain it . Sorry for anger in words,, no offence.

phew ! Longman, that does not make good reading but the information you give is eye opening.

Basically the austistic community is caught between a rock and a false government.

Who is our champion ? NAS ? Time ? the person who proposed the ACT in the first place ?

Or as I have said previously,, post code lottery, there is healthcare and there is healthcare, same with Autism if you are living in a high income area, the services will be better. The same way..., (this cracks me up),, take a train, flower baskets hanging in station and as you near the inner cities,, no flower baskets. So basically if you live in a *** area, you get a *** autism service, period ! That is the only way I can look at it.

So who is the point of contact, the one responsible for this shambles ? As you say, speaking to local government or central government, it is just pass the parcel back and forth.

The theory is that the Autism Act will enforce on councils that they appoint a commissioner to requisition services for people on the spectrum, BOTH children and adults, and this includes them having an autism partnership board which people on the spectrum can attend, to ensure their needs are met.

The reality for most local authorities goes against the Act. What the Act was trying to rectify was that autism is hardly supported at all and often falls between learning disabled and mental health.

The idea of an autism partnership board is that there is a body that addresses autism issues. Sadly the act was ambiguous in this objective, as it allowed authorities to use an existing learning disability partnership board as a framework for addressing autism.

In reality however what most councils have done is include autism ONLY if people on the spectrum have a learning disability. They aren't making any provision for those not classed as having a learning disability. This means you can only attend or observe the board's activities if you have a learning disability. So no progress.

Some authorities are claiming to have created a separate autism board/commissioner, but patently haven't, and it is very hard to pin anyone down about what provisions have been made.

Typically for national government they have passed responsibility to local government while severely curtailing local government funds. So its a joke to suppose national government will "lift a finger" (that is make the slightest effort) on behalf of autism. They've placed the responsibility on local government.

Hence the current review of how local authorities have progressed with this, and the opportunity for you to say they haven't.  You need to try and find out if your local authority has an independent autism partnership board and an independent commissioner, whether it has any data on who has autism in their authority area, whether they've provided training for staff, and whether they've taken steps to educate the police, health workers and educators.

It will be hard to find this out. Most local authorities will lie about it. But then National Government knows this. It is harder to pin down lots of local authorities than get one national government (or even one ridiculously highly paid Government Minister) to answer a straight question accurately.