I’m a huge weepy snotty crier. Funerals, weddings, stray dogs, the beginning of that bloody film ‘Up’, the way that Jane Hutt responded to business questions in the last Assembly term and so much more can reduce me to tears. I mention crying because it takes me back to my first ever meeting with a volunteer branch when I started working for the National Autistic Society Cymru. I only went to get a feeling for what was going on but it was bloody awful. Once I left the meeting, I held it together until the car and then I cried all the way home. By the time I was home with Mrs Mathias later that night my ducts were dryer than former AM Alun Ffred Jones’ sense of humour.
These parents had gone through hell, were going through hell and couldn’t see any change in their future. Their journey through hell wasn’t alone, it not only obviously included their autistic children but all members of their families and many of their friends. It was, is and always will be all consuming. There were about fifteen parents there that night and every one of them was on antidepressants. The thing is, they weren’t going through hell just because their children were autistic, they were on that journey because they were being sidelined, ignored and treated like shit by a local authority or a health board or a system that was meant to be there to support them.
In 2008 Wales led the way. An Autism Strategic Action Plan was introduced. In every press release ‘world leading’ featured. It was. Well, on paper anyway. I think of a strategy as I do my approach to an afternoon of house work. I will do all the easy things and then procrastinate on the hard stuff. This is how local authorities and health boards approached it. There were some great things done but a lot was ignored. If you don’t do what is in the strategy then all it is is a bit of fiction writing and that doesn’t help anybody.
You had cases where much needed money earmarked for autism projects was unaccounted for or sent back to Government. You also had the case at the beginning of this decade where LHBs just didn’t respond to a request for information from a Deputy Minister of the Welsh Government. If Government couldn’t get answers, how successful do you think parents were?
Some areas were more successful than others. That was because they had bloody great professionals. I can’t say ALL professionals because I don’t know all but many I have met or know about are stressed, overworked with little support and fewer resources. They go above and beyond, work every hour God sends despite the system they work in being one level above awful. These individuals are so vital that parents would phone up in a panic because they had found out that a professional was due for promotion, had taken another job or that they were going to retire in three years! I know parents out there who know the inner machinations of councils and health boards so well that they could draw you an organogram of the organisations from memory. BBC Wales could use them as experts on all things council-related, thus ending Jeff Jones’ stranglehold on the pundit market.
A strategy refresh is imminent. There was an interim one, it arrived glacially and looked and read as if it had been done on someone’s lap on the school bus. It was decided a couple of years back by NAS Cymru and many others in the autism community that it was time to ask for an Autism Act for Wales. Northern Ireland and England had one while Scotland had a strategy backed up with cash, showing off with their jammy Barnett formula. Thank God that’s all changed and is utterly fair now…
There was cross party support, there are AMs out there from every party that care passionately about the autism community. We have had some great support in the last Assembly term and I can only see things getting better with some of the impressive bright new things that have come in. The Government is unconvinced…sorry, civil servants are unconvinced and I accept the Act would not be a panacea but it would be a huge step forward. At a basic level it would put legal duties on what councils and health boards have to do, giving struggling autistic people and their families a clear indication of what their rights are.
There is hope on the horizon. A new integrated service is in its early stages and it is to be welcomed. It’s on the horizon though and that’s cachu pants time for the autism community. We cannot let it be a holding policy where we will be continually told that everything will be ok ONCE this service is bedded in because in the meantime people need help now. It could be embedded in two years and while that amount of time sprints past me now, for the development of a child – 24 months makes a difference.
There is a huge task ahead, autism isn’t just autism. It’s diagnosis, it’s schools and lifelong education, it’s old age, it’s employment, it’s relationships, bloody hell, think about most parts of your life, then consider how that would be impacted with autism – because it is.
Last month, the Conservative’s put forward a debate asking for an Autism Act for Wales. I know for a fact, hundreds were watching live with about 40 from the autism community from as far away as Pembrokeshire to see it for themselves. I have been in that viewing gallery plenty of times but you could sense the tension and the hope. After the opening statement, the gallery erupted, standing up and clapping. Some in that chamber were so shocked you could see them look up in wonder. What? The electorate? Here? The noise was very un-parliamentary. Tough, it was also very real. Politics is sometimes referred to as a game but those people in the gallery and at home were listening to people they didn’t know, discussing their lives and their futures. The motion was defeated 27-24. ‘Why’ is an essay in itself but the Government and the Labour Party truly believe that everything is in place to make sure that an Act isn’t needed. I hope they’re right, but not as much as those people watching that debate. They told us the results and the parents stood up, shouting shame and shambles. Many said it felt like a vote against them not just the Act. It wasn’t but it could’ve been handled better. Back to the theme of crying because those parents were; because of anger and disappointment, so was I, same reasons but there was pride in mine. Pride in those parents; those fighters.
The autism community in Wales, those autistic people, those Mams and Dads, they will lead the fight as they always have. They never stop, they don’t just fight for themselves, they fight for every autistic person and they fight for each other. They are committed, tenacious, passionate and inspirational. If autism Mams and Dads were in charge we would already have a tidal lagoon in Swansea, we would have 4 local authorities, it would be a pound to cross the Severn bridge and there’d be a proper road from north to south. They need the support of ALL Assembly Members, there are a few who have never been bothered to reply to an email from a national autism charity. We all have a responsibility to support, to learn a little more. Pop along to the NAS website, see the new ‘Too much information’ campaign and take 10 minutes out to learn something that could make a huge difference to someone’s life. I will leave it there. ActNow.
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