Live Chat with CEO Mark Lever - 2 April

I have only been a forum member for 24 hours and already I have had discussions with people who really arent moaners or worriers.

I have had experience of a son with high functioning autism for 30 years. One thing I do know is that its difficult for anyone to give hints or tips about individuals; all people are different, even those with autism. You may have got off on the wrong foot but maybe it is because you are frustrated trying to find answers or solutions. I think that the most important thing that anyone can offer you is support and empathy for your situation.

Having a child with autism is probably the most difficult job in the world, only because of peoples ignorance and judgemental attitudes.

I know that if you ask a question on this forum, you will get answers and hints and tips; they may not work but its worth a try.

I have 30 years experience, ask me anything, theres nothing much I havent encountered but there is probably more to come.

Take care

Paull said:

yes, its only half the issue - the NAS ice wall might be broken but the local authority has a 10 inch steel wall - when I contact them their excuse for breaking the law is that this is all in progress ! It's of no help to me that something may or may not be pencilled in for 2016 or whatever date. Someone else is supposed to be contacting me back, but I don't hold out much hope, will propable have to seek legal advice next.

the named autism person coordinater in the local authority should be the first point of contact,, if they can not provide or supply that information, then you have legal case.

I have asked my local authority for the same information, which they have to respond to under the request of information act within 20 days.

It is good the NAS are on side with you on this, maybe you will be asset long-term to them. Maybe if it does go down the legal route they can support you. Hopefully not just lip service.

yes, its only half the issue - the NAS ice wall might be broken but the local authority has a 10 inch steel wall - when I contact them their excuse for breaking the law is that this is all in progress ! It's of no help to me that something may or may not be pencilled in for 2016 or whatever date. Someone else is supposed to be contacting me back, but I don't hold out much hope, will propable have to seek legal advice next.

Hope@ I think we are trying to work out the ambiguity this is half the issue, 1 + 1 = 3.

Pauul@ At last ! you break the NAS ice wall, well done. And thank you for copying your peers in on this information. I look forward to see want happens with this, as it is paramount to the condition of autism.

Susie163@ hope you feel better soon, but the autism conversations can be varied, autism does bring stress, anxiety and angst, so please be understanding. There is no offence directed at you.

I joined for similar reasons as you MarcOnABike - my son and myself have Aspergers and I was hoping for a friendly place in which to share views/tips etc. It's all getting a bit much for me, I do not need or wish to deal with conflict. Dont get me wrong, everyone has and is entitled to their own opinions but it's getting to the point where I feel worse for logging in!

ok I just want to publish the reply incase anyone else is following this.

Mark NAS:

Hi Paull
The Autism Act statutory guidance puts a number of key duties on local authorities and health bodies in England. Local authorities and local NHS bodies have to follow the guidance so long as there is no good reason not to do so. Lack of resources is not a good reason not to implement the statutory guidance.

On appointing an autism lead, the statutory guidance is very clear on this, saying “each local authority should ensure there is a joint commissioner/senior manager who has in his/her portfolio a clear commissioning responsibility for adults with autism. This is the key leadership role locally and local authorities are expected to appoint someone."

Secondly, however, you mention establishing an autism team. Although this is mentioned as an example of good practice in the strategy and in recent NICE guidelines and although local areas are encouraged to develop such teams, there is no direct duty on local authorities to establish an autism team.

Broadly speaking though, you are right. If a local authority is not seeking to achieve the broad aims of the strategy they could theoretically be challenged by way of an application for judicial review. Challenging the local authority through the courts in this way is quite complicated and there are other ways to ensure local implementation of the Act. We are launching a new campaign in May designed to support people at a local level to hold their local authority to account. Watch this space for how to get involved!

Hope this helps - Mark

thank you Mark,

I am very happy with the reply and it clears a lot of thing up for me.

I will be contacting my local authority again and bringing this to their attention and hopefully they will act on it.

I can't deal with social ambiguity, either. This problem with uncertainly is the sole reason behind all my anxiety.

I am being to understand that the ambiguity of life effects me, not the situation, as you said,, yes or no seems like a simple question to me,, but yes if and no if seem to be the way of it, political negotitions when there should not be. Hence in law people get off from murder due to circumstantial evidence, but the fact remains they still killed someone. I think the autistic mind does not deal well with ambiguity, we are more black and white facts, which is good in some sectors like science, engineering and accounting but struggle in disney social ambiguity world.

Hi autismtwo,

yes, sometimes I feel like I don't exist and am getting fobbed off all the time...but hopefully.the question is here in black and white - as yet nobody else has even asked a question so I can't see how it can be avoided, but I am half expecting a kind of politicians response, where there is no yes or no answer... I would find that impossible to accept, because something either is a law or is not a law, it cannot be inbetween, but have the feeling some words will be weaved !! Yes, next step to me looks like getting a solicitor involved.

Paull, the reason you do not get a response from the council, councillors, NASi & MP is because you do not have any political value to them, it was the same for me, when I contacted my local socialwork on 10 occasions without response. IN PROXY YOU DO NOT EXIST !, however if a political will agenda item came up in the minutes of the NAS  or a councillor or a MP was looking to make a point at this local council,, they would take on board your situation. UNTIL THEN YOU HAVE NO CREDITABILITY,  an other route is one of political destruction, get a lawyer on legal aid case and sue the council for neglect, unequality, discrimination. 

10 points for trying anyway Paul.

Well since nobody has even posted a question yet then maybe I might get an answer, so my questions is

___________________

QUESTION

If the Autism Act 2009 says by law the local authority must make provisions to meet the needs of adults with autism spectrum conditions, and also every local authority should ensure that there is a named joint commissioner/senior manager with responsibility for commissioning of services for adults with autism and there should be a team specifically for those with ASD's, then does this mean if a local authority is not doing these things then they are breaking the law ? - a simple YES OR NO answer, there is no grey area, they either are or they are not breaking the law, there cannot be any inbetween.

______________

Also why when you try to access what I consider the most important page on the NAS website then it does't exist - despite me pointing this out 10 days ago and someone saying they will get it fixed.

The page www.autism.org.uk/.../the-autism-act.aspx

Has a link which says Click here to learn how you can ensure your local authority is implementing the Autism Act. The link is a 404 error and has never lead to the right page.

Why do I feel like this whole Autism Act is not being made clear  - I have wrote to 6 local councillors and my MP - all 10 days ago and still not had the answer - granted the MP said he was looking into it, but still no reply. Is it any suprise that I am starting to feel like those at the top are trying to put up a smoke screen.

Why else does the page not exist, why else do people from my local authority just keep passing me from one department to another never giving me the name of this 'named' person, always saying they will call me back but never do, and always try to direct me to learning disabilites or mental health when I am neither, why else do 6 local councillors not even reply ?

Autism act is either a law or not - if its not a law then whats the point of it ?

Woooah I was putting across my view and experiences of other forums covering different topics. It already seems a clash of opinions has occured. Ah well thats life I guess.

Marc, autism is not a cause, it is a health living condition. People with autism do worry a hell of a lot, it is a fear primary mechanism of the brain function. Sorry, we all can't be as upbeat as you, if you are worrying about  "this place going to be yet another Internet forum full of keyboard worriers ?",  I am sure there is a local pub you can go and meet your friends in. You can keep your high status butt kissing schmoozing to yourself, it will not help your child with autism. The NAS are geared primarily towards child autism support, just wait and see how helpful they are when he is an adult with autism or the government cuts there funding.  There is more to autism than the NAS and especially one person called Mark Lever, if you wish to worship a personality cult go to North Korea you will fit in there or go visit the Queen for tea, we don't need a NAS high priest here to get to Autism heaven or hell !

If you wish to find out about autism why not ask questions and get answers from people with autism,, aka US !,, or are you looking for some NAS goodie handout resources as you know good old Markie boy !

Is this place going to be yet another Internet forum full of keyboard worriers ? I joined the community here to share ideas and thoughts of autism and coping with a child on the spectrum.  

Whilst I agree little has been done to raise the profile of world autism day the live chat with a CEO of an organisation shows how open nas are. Im sure mark will have support on the day as he may not be sufficiently experienced to answer certain questions nonetheless its good to see an open forum for discussion with the leader of such an influential organisation which we all have a personal connection to is cause.

autismtwo said:

thanks scorpion, complaining is a conversation  probably the best one for society. Speaking to Mark Lever would be like talking to the devil to tell him it is too warm in hell. Would he listen,, this is just a PR exercise because it is a UN target policy, the next day it will be business as usual and the party and celebration will be over, whilst the boy with autism stands in an empty hall with a leaflet and holding onto there false promises.

And if you take that stance nothing will ever change.

thanks scorpion, complaining is a conversation  probably the best one for society. Speaking to Mark Lever would be like talking to the devil to tell him it is too warm in hell. Would he listen,, this is just a PR exercise because it is a UN target policy, the next day it will be business as usual and the party and celebration will be over, whilst the boy with autism stands in an empty hall with a leaflet and holding onto there false promises.

Cancel your subscription and keep it for your family, after seeing first hand stuffed's plight- NAS will not get a penny from me.

Autismtwo,

World Autism Day is a UN initiative.

See: www.un.org/.../

Maybe, instead of complaining, you should submit some questions for Mark Lever to answer.

Did not know there was even a world autism day on the 2th April,, sure it is not on the 1st ? Nobody on the forum nor elsewhere has mentioned such a thing ? The NAS has my details, nothing in the post ?  So all you have done here in my mind is tell me about Mark Lever day who I do not even know as a peer, so why would I talk to a stranger behind a stall, basically when we need the NAS, the NAS does not need us. So these terms are one sided NAS, goodbye, no thank you, not listening.