Mimanifesto – Jaye’s weblog

Posts Tagged ‘Scottish Autism

 You know something’s a bit different about you. All your life you’ve been perpetually anxious about the simplest everyday things…you know, will you catch the  bus, will you be at the station or airport early enough to make your train or flight. Will you get a decent seat, will it be crowded, will you make it through to your hotel on time, will you get a parking space near your work, will you get the dinner cooked, or get the housework done, a seat at the cinema..????? The list gies on and on. You dread social occasions or networking meetings, or going out with work colleagues. You’ve never made friends easily, preferring your own company, collections, obsessions even. Everything has to be in it’s proper place, desk has to be ordered with everything arranged just so… Routines are very important and fear of the unexpected is ever-present. Socialising on line is easy, but meeting those online friends face to face at conferences or social meet-ups is nerve wracking and fear-inducing. Folks think you are unhappy because you hardly ever smile, and find social chit-chat impossible. Failed relationships characterise your personal life and you end up being scared to get close to anyone for fear of rejection.

Anxiety takes you along to your GP eventually. It affects your life in a huge way. Or problems with relationships takes you down a counselling route. Either way, anti-anxiety drugs or anti-depressant medication gets prescribed and a referral to community mental health is made. This leads to an appointment with a CPN or Psychiatrist. Each stage of this involves long discussion reaching back over whole life experiences and things start to slowly fit into place rather like pieces in a jigsaw puzzle. Because we understand a lot more about certain developmental conditions now than we did even ten or twenty years ago (let alone thirty years ago when you were growing up and at school where you were just that weird kid who did strange things with her hands, collected the strangest stuff, had an almost encyclopaedic knowledge of music, couldn’t keep still, dropped things or griped over her own feet and just wanted to be left alone) and this is no truer than with Autistic Spectrum conditions.

You get a referral to an adult Autism diagnostic service, and over the course of two or three meetings, your whole life comes under the microscope, and you finally discover that at least there’s a reason for all this, and that you’re not just weird or strange, anti-social or depressed. Being given a diagnosis of Autism or Aspergers is not the answer to your problems, but it makes it just a little easier to deal with knowing it’s not your fault that you behave in sometimes strange ways…in fact, a diagnosis is just the start, not the end, of another journey.

Now, that’s just my story, but there are thousands like me out there in the world. Undiagnosed, struggling with the things in life that most folks don’t even think about. We find ways of dealing with our lives and at least accept those things about ourselves we don’t understand. Some of us are lucky and have people in our lives who are prepared to accept the differences, the rigid thinking and quirky obsessions and behaviour, but many are not so lucky and spend their lives alone and unfulfilled. Most of us manage to get by, modelling behaviour and using intelligence to develop ways of reflective thinking and an ability to rationalise unfamiliar situations (indeed, high intelligence is a common factor amongst adults who have undiagnosed Autistic Spectrum Disorders and manage to lead fairly successful lives). We develop strategies to help us function. I used to arrive for meetings and conferences just a couple of minutes before the start to avoid the registration and coffee beforehand, and lunch breaks would often be spent catching up on work rather than socialising or networking. Strange staff rooms could be a nightmare scenario, but there is always somewhere to disappear to.

With current funding cuts, adult autism diagnosis and support services are threatened ironically at a time when they are more necessary than ever before. An uncertain future lies around the corner. Autism service providers and charities need support to satisfy an increasing demand for their intervention and support, not just for those diagnosed but for their extended families as well.

- Posted using BlogPress from my iPad

We had a lovely chat with the ladies from Scottish Autism ( used to be the Scottish Autistic Society, I think) yesterday afternoon in the showroom :-) They talked about their plans for the future and the services they provide to people on the Autistic spectrum and their families and friends, and the tough times ahead for all charity service providers and agencies, as well as the struggle to raise awareness and fundraise for what is sometimes a really hidden condition.

Now its easy to understand the devastation this lifelong condition can have on people and families. Those affected often look no different from anybody else on the streets of our towns and cities, but when you know a little more about Autistic Spectrum Disorders and Aspergers Syndrome, you start to realise just how it impacts on everybody connected to the person affected. Most often, care is provided by these families with little or no outside help and little or no funding ! Indeed, the families save the government millions of pounds annually by providing this care with little respite from the daily struggle it can sometimes become.

Imagine not being able to leave books, magazines, or paperwork anywhere because your child rips it up, removes the pages, and rearranges them in reverse order. Or insist a on straightening up all the DVD’s and CD’s inside their cases before leaving home everyday…

In our family, we have two youngsters affected by Aspergers and one profoundly disabled autistic adult with profound learning and behavioural difficulties. They all need special care with their needs and their safety, and one needs round the clock 24-7 care as he is unable to dress, clean or feed himself. All of this without ever…. ever, having any respite care provided in eighteen years ( the age of the oldest)

Organisations like Scottish Autism do fantastic work in service provision and helping parents and carers fight for better treatment and care, even if this is just a weekend of respite care here and there to give them a chance of a short break. They are, like most charities of this kind, grossly underfunded. I sometimes wonder how lives would change if just nine or ten ‘bankers’ donated their obscene bonuses one year to Scottish Autism? I gave up my job, in part, to help care better for those affected in my family. Many others are also forced to do the same by a system which continually fails the most vulnerable and needy members of our society. I worry about what will happen to our kids when we’re gone. Will their brother and sisters have to take up the responsibility, and what help will they get ? Its a constant worry for sure.

So next time you see a collection box for Scottish Autism, please give a thought for the families right here in Scotland, like ours, and imagine what your own lives would be like if your loved ones were affected by something so devastating and lifelong…

For further information go to http://www.scottishautism.org/

- Posted using BlogPress from my iPad


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