Live Q&A on Talk About Autism about the Autism Strategy

When and where will the details for London/SE be finalised please?  Thanks.

Ooh, thank you Anil A - Mod, I will have a look.

Of possible interest. The Government will be carrying out a range of face to face consultation events. 

"The Government’s programme of action includes events, focus groups and workshops that will be run by the NAS and other organisations. Through the events, the Government wants to hear the views of people with autism, their families and carers, as well as professionals working to implement the Act, and find out how you think it is working. "

http://www.autism.org.uk/News-and-events/News-from-the-NAS/Push-for-Action-encourages-Government-to-launch-investigation-into-impact-of-Autism-Act.aspx 

This is relevant:

http://www.theinformationdaily.com/2013/07/29/post-autism-act-local-authorities-and-nhs-still-have-much-work-to-do

I did actually email as a follow up to the live discussion, and this time got an automated acknowledgement. Maybe they have responded to earlier concerns, but its still unhelpful.

What I emphasised from several angles was the need for this email address to respond and even provide an opportunity for discourse. Otherwise it was pointless fielding the discussants in the live chat with email us with your views - we'd like to hear.

I'm not at all convinced that they are sincere. And if you need proof of that, here's the automated message, signed by "The Adult Autism Review Team" at the other end of "this mailbox" autism@dh.gsi.gov.uk (not withstanding I'm breaching the confidentiality clause at the end forbidding disclosure!).

"Thank you for your email, this reply is to acknowledge its receipt. Your email is important to us, however due to the high volume of correspondence this mailbox is currently receiving we may not get round to replying to you as soon as we would like to.

"Please note that if your email is about the Adult Autism Strategy Review it will be read and considered as part of the review process. You will not receive an individual reply to your email unless you have raised a particular issue we feel the need to send you a reply to, if this is the case you will receive a reply within 21 days of receipt of your email.

"Thank you again for taking the time to write to us. Unless you advise us otherwise, we will add your name to the mailing list so we can update you on news about the review."

---- I like forward to news.  It'll be the first I've had if I do get any this way!

It really bugs me when people offer email addresses and then don't reply.  I mean is it a publicity stunt?  Here is "my" email address, please do tell me what you would like.

We believe that and merrily email off, only to find it's a generic one which probably, as it's swamped with desperate people on the spectrum's emails asking for what we need, they don't bother replying as there are too many of us pointing out they aren't doing anything right.  It doesn't fit with their agenda.  Then they just have a pat response to fob off people who persist, that is, exactly as I describe, a politician's response.

Yes, I agree that he has a lot to learn - but if he's not answering his emails he never will.  Perhaps it really is a publicity stunt "oh look, we are really trying hard with autism, to understand and offer what is needed" (loving the italics function ) when in reality it's an unanswered inbox.

Yes, the NAS should get involved.  Until the points are hammered home, until the right people "get it" they won't approach it from the right perspective and take the right actions.

The government needs to make it clear authorities will get heavy penalties for not doing what they have to by law.

Thanks IntenseWorld and Dream. autism@dh.gisi.gov.uk is the general email for comment on the current review of the Autism Act progress, and the one I used recently to ask a set of questions. I never got a reply, but having copied my MP in on it, he got that first response from the Employment Minister fobbing me off with how the work capability assessments were doing.  I'm still waiting for my reply to that, and another question directed at the Minister for Employment about what they understood about the difficulties facing people in work, to be answered.

So interesting that Mike Swaffield responds to my sensory issues question with a reference to the workplace.

But looks from the answers in general that he has a lot to learn. Can NAS arrange to meet him for an in depth discussion, and let us know the outcomes here?

I think that Michael Swaffield's reply somewhat side-stepped the question, I mean from the off, why aren't sensory issues taken into account in assessment and diagnosis?

My emailed question was asked, but I felt like I got a politician's response and it didn't get the response it needed.

Mr Swaffield kindly provides his email address for people on the spectrum to contact him to tell him what we want out of life: autism@dh.gsi.gov.uk

The transcript is here: http://www.talkaboutautism.org.uk/page/liveevents/adult_autism_strategy.cfm

Dear Longman,

I'm not sure if this is your question or not, but it was (apparently) the first question asked...

12:03
Talk about Autism:
The first question comes through email: Sensory issues are barely considered in the current diagnosis, even now, and the impact of sensory issues on the everyday lives of people on the spectrum seems little understood. What is the Government’s intention, in respect of “Leading Rewarding and Fulfilling Lives”, to increase understanding of sensory issues, and to ensure people on the autistic spectrum receive better support in this aspect of their lives?


12:04
Michael Swaffield:
It is important that we highlight the reasonable adjustments that can and should be made for people on the autistic spectrum, including the impact that sensory issues can have. In particular we need to get this message over to employers so people on the spectrum can reach their potential in the work place.

Thanks Anil A. I've had an acknowledgement from the Pears Foundation at Muswell Hill in London (Ambitious About Autism). They say they'll field the question. Unfortunately searching their website which contains the proposed live chat, I cannot find out any more about the discussion. I suspect it may be better understood if you are inside that organisation.

I just responded to IntenseWorld's pointing it out and challenging me to do something about it. Sorry to be such a cynic. Maybe someone involved here will show me up for being such a miserable old git.

If anyone on here does get to observe or take part, let me know what happens via this thread. But since Pears Foundation have acknowleged they may feed back after. In which case I'll update here.

Hi Longman -  I don't believe we're involved, no. 

But just to show willing, I have emailed him a question in advance about sensory issues. If anyone is able to listen in, perhaps they can relay to me whether my question was asked, or whether it was given any sensible response.

My personal prediction, for what its worth, is the question wont be asked.

Thanks IntenseWorld. To be honest if this is the best publicity they can give for the event, I cannot see much happening.

I will not be around tomorrow to engage directly, but what sort of question can I ask in advance that would be suitable to be selected?

From the little explained, and Michael's mere 2 years experience (is that full time? or couple of hours a week on top of his other roles? or just a nominal title?), what's this going to be about?

Basic questions about what "Leading & Rewarding Fulfilling Lives" does? Or even basic questions about autism? How do you get the pitch starting from next to nothing?

NAS, if you're involved in this you need to wake up your ideas. No-one can be expected to pitch in to something like this with no other background.

This just comes over as noddy, to me. Sorry to be so cynical....