Adult diagnosis- a personal reflection....

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.


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Glasgow to Vietnam: Inspirational Fundraising for Scottish Autism

Alison Hood from Glasgow, has been fundraising for Scotland’s autism charity, Scottish Autism since 2002, and to date has taken part in 5 overseas events to places as far afield as Malawi, China and Everest’s Base camp in Nepal. Alison also spends many weekends in Glasgow fundraising at supermarkets, shopping centres and venues such as Hamden, Ibrox and Celtic Park. Over the last nine years Alison has raised many thousands of pounds and encouraged and inspired many other colleagues and friends to get involved.

Alison said “I started fundraising for Scottish Autism because my friend’s two children were diagnosed as being on the spectrum. I saw first-hand how the charity helps her and her family and also how desperately Scottish Autism needs funds to support the helpline, advisory and information services they offer.

This November I am off to Vietnam to do a 400 km bike ride from Ho Chi Minh City to Cambodia. Next year I am doing a husky trail in Lapland and a cycle challenge in Cuba. The challenges have allowed me to experience cultures in some of the remotest parts of the world, and the challenging physical and mental aspects combined with the satisfaction of raising money for such a worthwhile cause make the experiences second to none. If anyone would like to join me on any of the up and coming adventures please visit Scottish Autism’s fundraising page at www.scottishautism.com”.

To acknowledge and celebrate Alison’s efforts she is being awarded with Honorary Membership of Scottish Autism at their AGM on 29 November 2012 and presented with a gift made by Art Opportunities. Also receiving this award is Elizabeth Neilson, who has been raising funds for Scottish Autism for 18 years by selling their Christmas Cards in Perth Library and organising events at her local golf course. Carolyne Nurse, Fundraising and Marketing Manager at Scottish Autism said “Without the remarkable efforts of fundraisers, Scottish Autism’s Support Team would not be able to provide invaluable information and advice to the many hundreds of families and individuals who contact them. We are indebted to Alison and Elizabeth who devote such a lot of time and effort, helping us to enable those living with autism in Scotland through the whole life journey. Between them they have raised over £30,000, and hopefully this award goes some way towards saying thank you.”

For further information go to www.scottishautism.org


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QR codes

Most of you will have noticed the increasing number of these funny black and white boxy things with what looks like crazy line patterns inside them. Well, for the uninitiated, they are called QR codes. The QR stands for quick response. The idea is that you use your smartphone app (downloadable for free from all app stores, whatever your operating system/platform) to scan the code, and this then opens up a website or weblink. Its a very quick way to access specific websites when you're out and about and very useful to businesses who want you to look at their on-line spaces.We've started using QR codes here at Scottish Autism. Have a go with this one above from us....:-) Its our text to donate code...so if you can, please, please, please remember its nearly Christmas, be generous, and help us to carry on with the work we do and the vital services we provide which improve the quality of life for so many folk with Autism and their families !

Scottish Autism Announces Fresh Approach to Charity Partnerships

Cargo Nightclub, Fountainbridge, Edinburgh     Edinburgh’s popular venue, Cargo Nightclub, has chosen Scottish Autism to be its charity partner for 2011/12 to mark the start of its new ownership. Cargo are keen to support Scotland’s autism charity to help raise awareness of autism and are planning all kinds of events at the club. First off is a St Andrews Day Pre-Supper and Quiz on Tuesday 22 November and a Student Night on 23 November.  Situated in the heart of the student & corporate district, Cargo Nightclub’s fundraising effort will be supported by a team of students from Napier University as well as its team of staff.  Alex Drinkell,  Fundraiser for Scottish Autism said “We are delighted that Cargo Nightclub has agreed to partner Scottish Autism on various exciting future events starting with a fantastic corporate St Andrews Day Celebration on the 22nd November and a Scottish Student Night on the 23rd November.  Students from Napier University are being very pro-active, helping with logistics and making sure these and other events are a huge success.”

Sainsbury’s new Biggar Store chooses Clannalba as their charity of the year

We're delighted to announce that staff at Sainsbury’s new store in Biggar has chosen Scottish Autism's Clannalba Respite Centre as its Charity of the Year.

The store’s manager, Craig Kelly, recently visited Clannalba based near Biggar, which is a 'home from home' for children and young adults with autism. On offer are residential short breaks, specialist support, team weekends and opportunities for leisure activities which are often inaccessble for people with autism.

Craig is looking forward to a variety of fundraising events over the next year and will be presenting Scottish Autism with its first donation of £500 at the stroe's opening launch, on Friday 18th November at 9.30 am in Biggar.

Clannalba’s Regional Manager, Adam Brodie said, “We are very grateful to Sainsbury’s staff for supporting us in this way, and helping us to provide a unique autism respite service for children and adults. Clannalba’s holistic approach allows our staff to focus on both the service user and carer. We are able to offer advice to families on specific difficulties and to work on developing certain skills. The support of individuals and companies within our local community such as Sainsbury’s is very important to us.”

Wonderful news, and thanks to Sainsbury's who are great friends to Scottish Autism with their fund-raising support :-)


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Press release...

Here is the press release from Scottish Autism yesterday in response to the launch of the new Government strategy for Autism...


NEW STRATEGY IS A STEP TOWARDS A ‘FULLER LIFE’ FOR PEOPLE WITH AUTISM

Scottish Autism has welcomed today’s launch of a strategy for autism for Scotland by the Scottish Government saying it is an important step forward in enhancing the lives of those who are affected by the condition.

Today’s unveiling of the national autism strategy by Minister for Public Health, Michael Matheson MSP was welcomed by Alan Somerville, Chief Executive of Scottish Autism, a charity which helps those with the condition lead a richer and fuller life.

Mr Somerville said: “As an organisation focused on quality care provision, we believe today’s launch is great news for people with autism and their families. It is an important step towards further enhancing the quality of life of those with the condition, especially as they progress into adulthood, and addressing the inequalities that many currently face in accessing health, education and everyday opportunities.

“The strategy will help us reach a point where people with autism lead fuller, more productive lives with the appropriate standard of required support - which varies across the spectrum of the condition. This approach can ultimately benefit us all - if people with autism are better cared for we can help them maximise their potential and reduce the negative interventions required to deal with those who slip through the net.

“This can ultimately mean, for example, a reduction in the number of people with autism in Scottish prisons, a figure which is currently disproportionately high. It can also lead to better management of healthcare resources with early intervention services to avoid shoring up major health issues in future. Overall, it moves us towards a position where people with autism can access the same level of opportunity for participation and citizenship that others do.

“Of course, we’ve a long way to go until we can put in place a model that delivers for the needs of people with all the differing forms of autism but today’s announcement is a welcome step forward.”



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A Strategy for Autism in Scotland

Those of you who live in Scotland might have see Scottish Autism Chief Executive Alan Somerville talking from the New Struan School near Alloa about the Scottish Government's new Autism Strategy on the Evening news last night.

There is going to be funding of £13.4 million ( an extra £3.4 million than originally planned) to be spent on, amongst other things, a network of local 'co-ordinators' whose role will be to provide information, support and advice for people with Autism and their families and more drop in centres. A development fund is also being established to provide grants, to which local groups and national organisations can apply.

The strategy which has been launched will be welcomed by charities and the estimated fifty thousand individuals affected by Autism in Scotland. And it is very much needed. A recent survey showed that many people can wait for over two years just to get a diagnosis, and many fail to get the help they need because those who are expected to provide help in local authorities and other organisations are just not fully aware of their needs or don't understand the impact Autism can have on those who are affected or on those around them...


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Not so random facts...number 2

Autism diagnoses growing in the USA by 10-17% each year !
Times-Tribune

Surprised ?


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Not so random facts ..

1 in 110 children born each year will be diagnosed with autism. 30% of autistic people are unable to speak ( from @60minutes on Twitter)

Do these figures surprise you?


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Write not wrong...

A quick apology to Billi Love, one of the authors involved with the writers project facilitated by Scottish Autism. Bill was one of the writers whose work was included in the 'Write not Wrong' anthology of creative writing published recently. Billi's name was somehow omitted from the press release and from this blog post which was all about the book launch. Apologies to Billi for this unfortunate oversight :-(


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Brain Weather- A poem from a carers point of view

Hello! My mame is Melinda Smith. I am mother to two boys, aged seven and five (there has been a birthday in the family since the last post !). My seven year old has autism spectrum disorder. I am also a poet...
 
This is the sixth in a series of seven autism poems I'll be sharing as guest posts on the Scottish Autism blog. This poem is in the voice of a parent / carer / friend of an autistic child, looking on helplessly while the child has a total meltdown.
 
In case you're wondering, the extra spaces are intentional.
 
I should also note that this poem was written with the support of ArtsACT.
 
Brain Weather
 
    :autistic meltdown ground zero
 
Think of                hemispheres:    Western, Left;
the wind-flows                 that connect them; the currents                       of sea; of electricity.
 
When was  it that             your frontal        lobe
Cauterized          itself against your       will
leaving  you endless       atomised local                   storms
with no way       to blow them    -selves out?
 
The last words you          said before the clouds came
stutter on            your small           tongue;
settle    in like cat-and    -dog rain, the syllables
hammering down, fixing one      thought with      a dozen stabs of lightning.
 
The miracle is not that it                stops, but how afterwards you can be so              calm and charming
- and puzzled that the rest of us still        drip and shiver from the rain.
 
(c) Melinda Smith 2011

Building up your networks...

This is a post about PLN's...or for the acronym shy, thats a professional (or personal) learning network. We all have them, and most of us don't actually realise it, but think about it for a minute.. there's your friends. And their friends, who you may know slightly less well. Then there's your work colleagues and professional and business contacts and probably access to specialist organisations and people through these connections. Then there's the on-line communities to which you might belong. This might be through social networking on Facebook and Google Plus, Twitter, MSM and Skype. Blogs you read and their comments also form apart of your PLN as well as professional networks such as LinkedIn and KILTR. Clubs, societies, alumnus organisations, even those who prop up the same bar as you! (there's always someone who knows 'how to' anything in a pub). All of these make up your network, either personal, professional or both, and these provide help, support, information, recommendations and contacts for you. You can visualise this by using circles which overlap filled with the names and groups and organisations. Go on, try to draw one for yourself- you'll be surprised at the extend of your own PLN

Now I guess the real point of this blog post is about joining Scottish Autism. Membership potentially forms a great addition to your own PLN. If you're a parent, carer, relative or friend of someone with an Autistic Spectrum condition then membership gives you access to valuable help and advice. Or maybe a teacher or educator, social worker, care assistant or play worker, a GP practice or community nurse, a lawyer or court official, a JP, Sheriff or Judge, a police officer, security worker, ambulance paramedic or technician, if you work in Local government in any public offices or places, a local councillor or MSP/MP/MEP or on the staff of any of these, or a bus driver, a taxi driver. All of these folks are likely to have some contact or involvement with someone with Autism or Aspergers and the likelihood of this is increasing with improving diagnostic regimes picking up more and more adults who have struggled all their lives to make sense of a confusing and sometimes hostile world, and whose sometimes seemingly odd little ways and behaviours might have made them stand out or even worse, lead to them becoming either the butt of some stranger's stare or finger point, or being misunderstood by the police, courts, or other authorities, with perhaps devastating consequences for them and their carers. Wouldn't a little knowledge, information or help and support be useful? and maybe a dedicated helpline to answer questions and make suggestions? A website with links and contacts? Social networking for more instant help and support? Training and networking events in most parts of the country, and access to internationally renowned researchers at our conferences? All for £15 per year for individuals, or £25 for families. There's more information here

So make a positive contribution to the work of Scottish Autism, and a valuable addition to your own PLN...



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Autism poem: The Impossible Blindfold

Hello ! My name is Melinda Smith, and I am mother to two boys, aged seven and four. My seven year old has an Autism Spectrum Disorder. I am also a poet. Read more here

This is the fifth in a series of seven autism poems I will be sharing with you as a guest poster on the Scottish Autism blog.

This poem is in the voice of an adult with ASD, and explores his / her ambivalent feelings about working with a bunch of neurotypicals.

It was inspired by the writings of Edgar Schneider (Discovering my Autism) and Temple Grandin (Thinking in Pictures).

The quote from the Bible used at the beginning is one that Schneider returns to again and again in his book.  If you look carefully, you’ll see I have hidden one word from the quote in each line of the poem.

(I should also acknowledge that this poem was written with the support of artsACT)

For my thoughts are not your thoughts, nor are my ways your ways
– Isaiah  55:8

The impossible blindfold 

an autistic adult prepares for a day in the workplace

 

Today again I’ll strap on my mask for you;

zip up my ludicrous human suit;

force most of my thoughts into small closed boxes

so that when I speak, you are not made uncomfortable.

When I am not trapped in a room full of chattering

sometimes I can pass for one of your kind.

You few who reach for me with well-meaning thoughts:

even you have no clue how hard this is, nor can you.

If you are sighted and want to try blindness,

bind your eyes for a day, a week – you might come close.

But there are no easy ways to shut down your radar,

lock yourself in my clumsy robot cage

and be. For my thoughts are not your thoughts, nor are my ways your ways.

(c) Melinda Smith 2011

News and events...

Some bits and pieces of news and information in this week's blog post.


First up is a heads up for our Delicious page. This is where you'll find links to some of the latest research on Autism and Autistic Spectrum Disorders.Whilst we don't necessarily endorse the research linked to, its important to provide a resource which helps those of you with an interest to keep up to date with work being carried out in this area of research. If you're on Delicious yourself...please link to us and our page :-)

Next, there's our Scoop.It page. here you'll find all the latest news stories as well as some of the research summaries. This resource displays the infomation in a pictoral tabloid style so it's easy to read summaries of the stories before opening the full article. Try it out and become a follower...

Our facebook page is where you'll find details of all our community and fundraising activities, as well as our photo albums of past events. We've loads planned in the near future, including a Clyde ZipSlide this weekend, a Forth bridge Abseil, the Big 5K fun run, the Tune in to Autism concert at St Andrews in the square (Glasgow) and many more. If you have'nt already done so, please 'like' us over on Facebook :-)


Don't forget our twitter stream for up to the minute news and chat. Its a great way to engage with us, share resources, or just chat ! Follow us and we'll follow you back...

Our website is full of information and resources to help those affected by Autism, their families, friends and professionals who wish to access our services. Latest additions include the full text of our Chief Executive Alan Somerville's interview in this year's Holyrood review, and up to date details of our training events.


If you've accessed any of these sites, let us know what you think, or of any suggestions for improvement you might have. We'd love to hear from you :-)

Autism poems: Autistic Acrostic and some AutisTweets by Melinda Smith

Hello ! My name is Melinda Smith, and I am mother to two boys, aged seven and four. My seven year old has an Autism Spectrum Disorder. I am also a poet. Read more here...

This is the fourth in a series of seven autism-poem posts I will be sharing with you as a guest poster on the Scottish Autism blog.

Today's post contains a number of shorter autism poems: one called 'Autistic Acrostic', and five 'AutisTweets' (what is an AutisTweet ? Explained below).

Autistic Acrostic is in the voice of a mother who experiences a small moment of clarity during one of her autistic child's meltdowns. It is also an acrostic, meaning the initial letters of all the lines spell out a word or message.  Can you read what it is? 

Autistic Acrostic

Any day now, it will lift.

Under your mask of howls, I see

Two knowing eyes reproaching me,

Incensed that I should try to shift

Some blame, for this, our hell, to you.

Mummy feels like howling too.

(c) Melinda Smith 2009

               

(First published in Quadrant, Volume LIII, No.4, April 2009)

This was the very first autism poem I ever wrote - more than two years after our son's diagnosis. It took me that long to feel at all able to write about it. Even so, this poem cost me a few tears.

***

AutisTweets: Since getting onto Twitter three months ago (yes, I know, a little late…) I have been exploring the 140-character format, complete with #hashtags, as a way of writing condensed poems.

The following autism 'micro-poems' were all originally 'published' as tweets from my Twitter account, @MelindaLSmith. The slashes between phrases show where the linebreaks would go if Twitter allowed linebreaks.

I should also acknowledge that they were written with the financial support of artsACT.

Here goes:

1.

my boy perches on the pool’s edge/flapping his wet hands/people are staring/he sees only me, and grins:/’I caught an imaginary trout’ #ASD

2.

#micropoetry #ASDparenting #firsteverjointsleepover Both sons away tonight/after 7 years/I don’t recognise this quiet/or this calm

3.

#autism #newdiagnosis #bewilderment with that one word/a glass wall traps me/i thump and plead/the doctor looks away

4.

The arrivals board/says my plane has landed/your brother hugs me/you won’t let us go home/the cascading numbers/are too beautiful #ASD

5.

#micropoetry #ASD #autism #anxiety "I still have a 'drenaline feeling'"/so I walk u down the hall/7 years old & terrified/of Bugs Bunny

(c) Melinda Smith 2011