Filed under: asperger's syndrome, autism | Tags: A Scottish Autism Strategy Bill, AS, asd, asperger's syndrome, autism, Hugh O'Donnell MSP, NAS Scotland, Scottish Government, The National Autistic Society Scotland, We Exist
I have an ASD (Autism Spectrum Disorder) yet I consider myself very fortunate that I have had little need to access any support services. Had it been possible to have received a diagnosis as a child perhaps I would have had support and my life may have been different. Whether it would have been any better I can’t say, I like my life and I have no complaints. However there are many people on the spectrum whose autism is a serious impairment to living a full and productive life around half of whom it would appear are not well served by support services. When I say “around half” that is a guess because without accurate recording of people with autism, their requirements and provision of services we really don’t know how inadequate the provision is. We do know from a recent survey by NAS Scotland that 48% rated their overall experience of services to help them with their autism as either poor or very poor and that a third of people have had to go to a tribunal to get the right support. The same survey found that 95% of people believe it is necessary to create a legal duty on local authorities and health boards.
Hugh O’Donnell MSP recently launched a private members bill entitled A Scottish Autism Strategy Bill which is supported by The National Autistic Society Scotland (NAS Scotland) which will if passed address both the gaps in reporting autism and in the provision of autism services. I am lucky that I live in Maryhill in Glasgow where we have a dedicated Autism Research Centre which provides many services to people with autism and to those involved in their care – most of Scotland is not so fortunate. The introduction to the bill says, “Owing to a lack of a national autism strategy in Scotland people with autism and their carers face something of a postcode lottery in terms of service provision. This Bill will ensure national standards of service and provision and guidance to local providers”. It is wrong that the quality of service provision should depend on geography rather than need and this must change. Scotland is the only part of the UK without a national autism strategy.
As long as we lack a national strategy we all suffer from the cost to society of the resources we waste. Services need to be properly targeted to achieve effectiveness and cut waste. Early intervention in autism saves us from costly care provision later particularly as many people with autism are capable of a variety of useful jobs if given the right support. By equipping people on the spectrum to lead independent and productive lives we free resources for those who cannot. The bill will enable many people with autism to access education and employment and particularly to make the transition between the two.
Without proper provision of diagnostic services it is impossible to properly provide services. The National Audit Office is of the opinion that “if local authorities identify and support just 4% of adults with
Asperger syndrome the cost of services will be cost-neutral. The more people who are identified and supported the greater the savings will be.”
PROPOSAL FOR A SCOTTISH AUTISM STRATEGY BILL
The proposal is for a Scottish Autism Strategy Bill that would place duties on
the Scottish Government, local authorities and health boards to improve
support for both adults and children with autism:
The terms of the proposal would place a statutory duty on the Scottish
Government to:-
• prepare and publish a strategy to meet the needs of children and
adults with autism;
• consult with appropriate organisations and people;
• issue statutory guidance to local authorities and health boards on:-
• the provision of diagnostic services;
• the identification of children and adults with autism locally;
• the assessment of their needs;
• the planning and provision of services;
• the training of staff;
• leadership at local level.
I don’t need much support others do. Please help them and ensure your taxes are not wasted in the provision of unnecessary care instead of timely and focused intervention. Most people with autism want to contribute to society. Please help us to play our part in society, please support the bill and tell your friends.
To get involved in the consultation please visit the “We Exist” campaign website at http://www.autism.org.uk/scottishautismbill
or contact:
National Autistic Society Scotland
1st Floor Central Chambers
109 Hope Street
Glasgow G2 6LL
Telephone 0141 221 8090
Email scotland@nas.org.uk
Filed under: Uncategorized | Tags: Firefox, internet, Linux, logical steps, Mandriva, on-line forums, PC, Registry Mechanic, technical forums, Ubuntu, Wifi, Windows, Windows XP, Wireless, XP
So here I am running Firefox in Ubuntu on my old PC. Why am I running Ubuntu instead of Windows which I have used since Windows 3? It’s been a funny old week. I had given up using my old PC because Windows XP had stopped displaying properly and so I could do nothing with it but I realised the display worked because the Bios read OK. In a moment of inspiration I tried booting from an Ubuntu CD, Windows started perfectly and so for about a year I have happily been using XP – I was a little disappointed that I had lost my excuse to try Linux – safer to stick with what you know!
A few weeks ago my wife signed us up to O2 wireless as it’s cheaper than the cable modem package we had been using. Oh what fun I had trying to set up my desktops. I tried everything I even bought a telephone socket extension so I could move my router upstairs to the PC and connect it via Ethernet. Just before I moved the router I discovered Wireless Zero Configuration and within minutes had both desktops connected to the Internet. Why could not either O2 technical support of the lovely folk in the O2 shop – and they are nice – have told me? Fortunately I am of the belief that everything is ultimately logical it’s lust a matter of step by step experimentation.
I was happy with my Internet connection and decided to update my software including Registry Mechanic – I’ve been using it for years on various PCs and I love it – over 500 errors to repair, I okayed the repair. when I next rebooted my PC Windows would not reboot. I am logical so I took a step by step approach.
I tried to reboot to last good configuration – no joy. I tried Safe Mode – all of them in turn – still no joy. I remembered how my Ubuntu disk had saved me before but this time Windows would not work. I knew the hardware was sound as a rescue disk for the other PC started but would not work with my XP, sadly I could not find my – several years old – rescue disc. I tried a selection of disks – still no success. I tried Rescue CD, I tried Trinity without success. Panic was beginning to set in, my language was becoming increasingly colourful. I was using words I had never used before…picked up in my searches of on-line tech forums (should that be”fora”?).
In desperation I installed Ubuntu 8 but I couldn’t work out how to configure the Internet. I installed Mandriva 2009 from a cover mount and the Internet worked until I rebooted – I realise that was my mistake. At last I downloaded the newest Ubuntu opened it with Nero and burned it to CD, I checked the forums again – obviously using the other (my wife’s) desktop.
I installed Ubuntu and found the network drop down on the top right of the notification bar – my mistake had been to try and configure it from the system menu – it was so quick and easy, it starts every time I reboot. I have now got my Google running and most of my favourite in browser apps. The only fly in the ointment is not being able to use Tweet Deck in Linux – I can manage without it.
So that is why I am running Linux on my old PC – she’s never ran so fast I am a happy man! All I’ve got to do now is to work out how to set up my wireless keyboard again.
Filed under: Film Reviews | Tags: AS, asd, asperger's syndrome, autism, film, film review, Ian Durie, John Lennon, Nowhere Boy, review, sensory processing, Sex and Drugs and Rock and Roll, Sherlock Holmes, St Trinians 2, The Book of Eli, The Legend of Fritton's Gold, Up in the Air
This has been a good month so far for films. Since recovering from a horrible virus at the turn of the year I have seen six films none of which I regret. I have added a note to each one for those with sensory concerns.
I enjoyed “Nowhere Boy” A film about John Lennon’s relationships with his Aunt Mimi and his mother prior to the rise of the Beatles. Directed by Sam Taylor Wood and starring Aaron Johnson as John Lennon, Kristin Scott Thomas as Aunt Mimi, Anne-Marie Duff as Julia Lennon and Thomas Sangster as Paul McCartney. I think it’s fair to say that Thomas Sangster is shaping up to be one of the best of the young British actors with a solid body of work behind him, he rather overshadows the hogwarts crowd. The relationships of Lennon with the two dominant women of his youth are sensitively explored as is Lennon’s transition from rebellious schoolboy to musician. This is not just a film for Lennon fans as the story would be as powerful were it about an unknown. Contains loud music.
“Sex and Drugs and Rock and Roll” is the biography of Ian Dury during his time with the Blockheads Directed by Mat Whitecross and starring Andy Serkis as Ian Durie with Ray Winstone, Olivia Williams and Naomi Harris amongst a slid British cast. This is a very entertaining look at the unconventional domestic arrangements of Durie and his relationships with his father and son as well as the women in his life all to the accompaniment of the Blockheads songs sung by Andy Serkis with the Blockheads. Andy Serkis is excellent and convincing as Durie. The story doesn’t shy away from painful issues of disability, child abuse and drug abuse but manages not to get heavy or preachy. I loved this film. Contains loud music and flashing lights.
“The Book of Eli”. Directed by Albert & Allan Hughes and starring Denzil Washington, Gary Oldman, Mila Kunis, Ray Stevenson and Jennifer Beals is set in a not to distant future in a world devastated by war. Civilisation has been destroyed and through the wasteland a man walks determined to follow the voices in his head and get “The Book” to the West. The film is about the trials he encounters in the last few days of his journey and has some great plot twists. Contains violence, gunfire and references to cannibalism.
“St Trinian’s2 The Legend of Fritton’s Gold”. Directed by Oliver Parker & Barnaby Thompson. Starring Rupert Everett, Colin Firth, David Tennant, Gemma Arterton, Kelly Jones. A load of hokum but very watchable light entertainment. David Tennant (Dr Who) as a baddy is fun and Rupert Everett is once again magnificent as Camilla Fritton. Usual St. Trinian’s escapades as always worth a chuckle. Contains loud music and flashing lights in the final scene.
“Up in the Air” Directed by Jason Reitman starring George Clooney, Vera Farmiga, Anna Kendrick, Sam Elliot as the Chief Pilot. This is George Clooney doing what he does best, being charming. It is described as a romantic comedy, I don’t know about romantic but it was amusing and very elegantly conceived. To be honest I found it a little sad I don’t like loose ends and this film was left with several. Fairly loud party scene.
“Sherlock Holmes”. Directed by Guy Ritchie. Starring Robert Downie Jr., Jude Law, Rachel McAdams, Mark Strong. I don’t normally like Guy Ritchie’s films but I thoroughly enjoyed this! Robert Downie Jr is a more athletic Holmes than we are used to and has more weaknesses but very watchable. Jude Law’s Watson was a better Watson than most, more dynamic and intelligent a better foil for Holmes and more like the army officer he is supposed to have been. I am not sure Rachel McAdams’ role added anything to the film other than female beauty but Mark Strong was a suitably evil baddie. The story was not a Conan-Doyle and appeared at first to be something other than it later proved to be – it is worth waiting for the unravelling of the plot – there are plenty of clues scattered through the story which will all make sense in the end. I think the technical term for a film like this is “an enjoyable romp” this was well paced and highly entertaining. Contains some gunfire and explosions also a noisy fight scene.
Filed under: autism | Tags: Andy Serkis, AS, asd, asperger's syndrome, autism, Ian Durie, Spasticus Autiaticus
“Spasticus Autisticus” is the name of the song Ian Durie wrote as an anthem – a war cry for the disabled –for the UN Year of the Disabled. There is a wonderful scene in the new film Sex and Drugs and Rock and Roll. Where Durie played by Andy Serkis is arguing with the (able-bodied) representative of The Spastic’s Society – God. that sounds so dated! – because the song is not getting played. The response is that some people find it offensive to which Durie replies that none of the disabled people he knows is offended. At this point it is made clear that it is offending the sensibilities of able-bodied supporters and Durie shouts back, “I didn’t write it for them!” Durie goes on to point out that the disabled,”don’t want sympathy we want respect”. Earlier in the film Durie is criticised for his inappropriate language, he says that he uses stereotypes because it saves time. Much of the film is a study of how limited and limiting stereotypes are even when the evidence reveals their emptiness.
There is no stereotype that can cover the autism spectrum so the proposal to remove some diagnostic labels and have a catch-all diagnosis of “Autism Spectrum Disorder” or whatever the form of words ends up being will cause stereotypical problems. Just now there is a stereotype of autistic people as being silent and graceful whereas those with asperger’s syndrome ain’t. We may not be able to walk a straight line but we will tell you how many degrees we are off, how we calculated it, how we might also have calculated it, how historically it would have been calculated and how improvements in computational technology will change how we do the calculations. Pretty soon you will wish we were silent and graceful. There are good reasons not to divide the people on the spectrum but these labels also help to give definition to the elements of the spectrum. A spectrum is multi-coloured not beige. Perhaps there should be name changes but for whom are these changes being made? They may help carers claim benefits and services, they may be convenient for the psychiatrists, our views don’t really enter into consideration. I look at warring groups of parents, advocates, therapists and researchers each stridently attacking anyone who disagrees with their viewpoint. Perhaps people should start by realising they can’t see into the minds of other people, they don’t know what we are thinking and feeling – I don’t know what I’m thinking and feeling most of the time – we are human. We are not chess pieces, we are not puppets. We may not want to be cured, we are who we are. Nowadays it is generally considered offensive to talk about people in wheelchairs in the third person – “does he take sugar?” – the same goes for us. If I can’t answer your question I can ask my wife but I prefer you ask me first. Still it is good that so many people care regardless of their points of view there is lots of hope plenty of “Reasons to be Cheerful”.
If you haven’t seen the film. see it. Andy Serkis is amazing as Ian Durie!
Filed under: asperger's syndrome, autism | Tags: AS, asd, asperger's syndrome, autism, blogging, blogs, personal development, thought process
As some people may have noticed for some months now I have had an obsession with Autism and particularly with Asperger’s Syndrome. I have read and watched so much since I started on this road, what happens to it? I seem to be a bit of an infosponge I absorb much but I have little idea just what I have absorbed. Information floats around in my unconscious undifferentiated until it surprises me by reappearing. I am not sure why information re-presents itself. It seems that when enough ideas have connected to form a critical mass they just need the right stimulus to come pouring out. The I cannot claim the ideas in my blog are original – some may be – they may be put together in new combinations, they have been processing for some time. I have had other obsessions which gave rise to similar bursts of intensive reading but then I did not have a blog although I frequently find pages of notes dating back to whatever obsession.
Often the stimulus for a blog is reading a comment or a recollection which directly reminds me of my own experience. I do not have a facility for spontaneous recall my recollection demands a prior stimulus. I love quizzes because I am constantly surprised at the questions I can answer correctly without knowing how I know the answer.
I know why this blog has come about. Some months ago I read a Donna Williams book (I think it was Donna Williams) wherein she wrote that she didn’t recognise her thoughts until she wrote them down. A few days ago as I was reading her blog I recalled her comments about her thought process and realised that my blogging process is related to some extent. I find things make more sense when I see them written down. Sometimes they don’t, sometimes they bear little resemblance to English. I sometimes return to what I have written and wish I had a translator so now I try to edit for coherence immediately after writing. When I see my thoughts written down I can sort them and make sense of them and see some of them as ridiculous and dismiss them or accept them – I reserve the right on occasion to be illogical!
Filed under: Uncategorized | Tags: asd, asperger's, asperger's syndrome, autism, Autism epidemic, self empowerment
Recently I was reading the blog of someone who propounds that Autism is an epidemic. They asked the question, “Where are the adults with Autism?” To which I reply.
We are here living amongst you. More of us are in your psychiatric hospitals and psycho-geriatric homes. Some of us were born before Kanner identified Autism, many of us were born shortly after. We were born before you knew to call us autistic instead we were called, “strange, shy, antisocial, mentally retarded, childhood schizophrenics, disruptive, bad”. The more socially adaptive of us were tolerated to an extent, others were shunned and the rest of those who survived were locked away out of sight.
I remember a particular patient in the psycho-geriatric hospital in which I worked in the 1970s. He was non-verbal and he stimmed the whole time – a rhythmic movement of his right hand in front oh his right hip – I cannot remember what his diagnosis was. I wonder, had he been born fifty years later whether his diagnosis might have instead been one of autism.
You are right to fight for your child. You do not have the right to ignore us for your political ends. You ask where we are, why don’t you look? Look in the asylums, look under railway arches and in shop doorways, look in the repetitive and menial jobs, look in lonely rooms at the end of the Internet connection. Look further, we are your parents, your grandparents, aunts and uncles, we are the cousin the family prefers to forget about, we are the one’s they don’t talk about. You have the right to fight for your child but when you ignore us, when you dismiss us and discount us you become no different from those against whom you fight. We may have been born too early for a diagnosis, we may be differently diagnosed but we hae lived and yet do live. Do not you dismiss us! It may be too late for any treatment to make a difference to us but at least you could see us, we are here! We have as much right to respect as your child. We do not claim the same right to resources, we are older, we have made our lives and reached wherever we are, we will not deprive your child.
All I ask is, do not sacrifice us to your cause. Our Autism has been invisible, see us now and respect us for who we are whatever we have become. We have been the outsiders, if you care so much about Autism perhaps it is time to reclaim us, accept us, make us visible too.
