The day was hosted by the Autism Alliance. The chair of the Alliance, John Phillipson welcomed everyone to the event and gave an assurance that our voices, would not only be heard, they would be listened to throughout the day. said that if we did not have an opportunity to ask questions during the day that there would be an opportunity to do so via a video camera during the lunch break. Many people (including myself) took that opportunity. I made the case for advocacy loud and clear and in addition to that I also spoke about the need for accurate statistics regarding the number of adults with autism we have. How can you ensure that you are providing services to meet the needs of adults when you have no idea in reality how many adults there are with autism?
Scott James opened the event with his song 'Through my Eyes'. Scott then went into a question and answer session about himself and his autism and how he now works hard to raise awareness of a condition that impacts on so many lives.
There was a good mix of speakers who covered many topics, including experiences of diagnosis, beyond diagnosis and the challenge of assessment, awareness understanding and training, and commissioning post Winternourne.
I would have liked longer to process some of the information we were receiving. We were told that all of the presentations from the day would be available to us after the event, and I think that they will be worth watching, even if you were not at the event.
There was a really powerful presentation by Nigel Archer who has a son with autism and is himself an ex policeman. He spoke about the criminal justice system and the dearth of understanding about autism within that system. He spoke about 'mate' crime, which is when someone with autism is befriended by people who are purposefully looking to set the person with autism up to take the rap for a crime they did not commit.
Martin Knapp gave an interesting account of pooled budgets and the pros and cons of such. Falling through the cracks was something he spoke about a lot during his piece, and yet I personally could not grasp how someone who had consistently fell through the cracks would benefit from a pooled budget. You would surely have to have a budget first?
'Making it Real' was video feedback from some of the focus groups that had been held around England. during the last few weeks. For me that was what the whole event was about.
The video was shown just after Minister Norman Lamb arrived and before he addressed the conference. I was very pleased that the Minister was in the building to hear and see what adults on the spectrum had to say about their lives, and mostly what the strategy had so far failed to do to improve the quality of their lives. "Making it Real" certainly made it real for me and underlined the reason why we were actually there. The important thing that came across in the video to me was that the adults with autism commenting were not young people with autism. They were adults. One man spoke about how he had been consistently failed throughout his life.
Norman Lamb then addressed the meeting and made it clear that the autism strategy was everyone's business. This appears to be a point that the Government really wants to hammer home. Norman Lamb underlined that there were no excuses for people being without the provision they require. He asked us to consider 5 points throughout the course of the day which were.
• How can we make more people aware of autism. Including GPs and health and social care professionals.
• Diagnosis and how it can be made more accessible and straightforward for those seeking a diagnosis.
• How do we ensure that adults with autism receive the right support.
• Employment - and everything that we know goes hand in hand with employment.
• Empower local organisations to make reasonable adjustments, which are the law.
Maybe the lack lustre performance implementing the autism strategy by some of our Local Authorities has something to do with the massive cuts to their budgets?
The afternoon session comprised of more speakers and workshops. I opted for the transition workshop because transition is something that is very important to me locally where I live. I admit to being shocked to hear two professionals saying that it might be a good idea to start and reduce provision that children receive gradually as they increase in age because there are no matching services for them to access in adult services. I personally think it is hard enough having to lose services (if you ever had any) when a child transitions from children's to adult services, without the rug being pulled away before it is absolutely necessary.
During that workshop we also looked at the great many children with autism who do not receive any services, who often have no specialist input at all around the time of transition.
The end of the day was given over to a panel comprising of the Director General of Social Care, Local Government and Care Partnerships - DOH. The Deputy Director of Special Educational Needs - DfE. The Director of Independent Living and the Office of Disability Issues - DWP, and the Autism Lead - Association of Directors of Adult Social Services.
The panel were sending out the same message as the Minister Norman Lamb that the autism strategy was everyone's business and that, that, had to be acknowledged.
Localism appears to be the buzz word regarding the strategy. Although how that is going to work when some Local Authorities (mine) have taken a hundred million pound cut from their budget over the next three years, I have no idea.
We were encouraged to ask our Local Authorities why we do not have a specific service to access in the way that perhaps a neighbouring Local Authority might have. This strongly suggests to me that adults with autism and their parents and carers are going to have to both lobby and police their Local Authority to commission the services that they require.
I felt that some of the things that were said by members of the panel were misleading. This was especially regarding transition and how we can ensure that more children with autism continue into post 16 education. The Deputy Director of Special Needs cited the new education and healthcare single plan as being the way forward for successful transitioning for young people with autism.
I felt it necessary to ask if every child with autism would now be eligible for the new single plan? The answer to my question was of course no.
We were informed by the panel about new policies and other pieces of work that are currently underway, that will have a positive impact on the lives of adults with autism when running alongside the autism strategy.
When the strategy was first published it was peppered with references to all different policies that applied to adults with autism. They running alongside the strategy were supposed to make a difference. They never have.
Several adults wanted to ask the panel questions at their end of their session. Some were frustrated by the lack of representation on the panel of adults with autism. Quite a heated discussion erupted and I saw very little in the way of the reasonable adjustments that Norman Lamb had spoken about earlier in the day, being made for more than one adult with autism.
A day that started out full of hope, ended for me in the way that these events tend to do, with an overwhelming sense that nothing is really going to change. Please note that this is purely my view of the event.
Maybe the panel discussion should have started the day. At least that way we would have had an overview of what we could reasonably expect from a reviewed, or as we were told on more than one occasion refreshed strategy. I would like to hope that there will be some meaningful changes to the strategy when this review comes to an end.
Four years ago I was part of an external reference group that was helping to inform the Department of Health as to what needed to be included in an autism strategy. What was finally published was about a million miles away from the draft strategy that the external reference group handed over to the Department of Health.
Four years after the publication of the strategy, the consensus of opinion from the people at least whom I have had the pleasure of sitting around tables with and speaking to online during the last few months about the strategy, is that it has achieved very little for most of us.
Last Wednesday we heard from the Autism Lead for the Association of Directors of Adult Social Services that although in some areas there had not been much progress in implementing the strategy, in other areas a great deal of progress had been made. I look forward to reading about those areas when the strategy review report is published.
My own personal take on the strategy is, and has been for the last three years, that autism was simply in the wrong place at the wrong time. 'Fulfilling and Rewarding Lives' has failed to impact on the lives of those who live with the condition in the way that they so desperately needed it to. Had the strategy been published even two years earlier we might not be sitting in the same boat as we are right now.