We recently announced our sponsorship of Professor Tony Attwood's workshop on Asperger Syndrome and Autism at Lincoln University on 19th May 2012. We are delighted to be able to offer a limitied number of complimentary tickets (face value £90) which we will allocate on a first come first serve basis.

To qualify you must meet one of the following criteria (as well as be able to make your own way to and from the event)

- Be a person on the Autistic Spectrum over the age of 18

- Be a close family member of a person on the Autistic Spectrum

- Be a professional working with people on the Autistic Spectrum in a role where you are responsible for purchasing support services (eg Social Worker, Community Nurse, Commissioner)

This day long event, organised by PAACT (Parents and Autistic Children Together) will bring together parents, professionals and people with ASC's for an opportunity to hear from a pioneering academic working in the field of Asperger Syndrome and Autism. The workshop will focus on Asperger's Syndrome, 'managing feelings' and the cognitive issues faced by people who are on the spectrum.

Tony Attwood is well known for sharing his knowledge of Aspergers Syndrome. He has an Honours degree in Psychology from the University of Hull, Masters degree in Clinical Psychology from the University of Surrey and a PhD from the University of London. He is currently adjunct Associate Professor at Griffith University in Queensland. Tony has written several publications on Aspergers Syndrome. His book, titled Aspergers Syndrome, has now been translated into several languages.

Autism Care UK is proud to be the key sponsor of this not to be missed event.

Watch out for more details about Professor Attwood's workshop on the blog soon. His own website can be found at http://www.tonyattwood.com.au/

Did you know you can get live update links to this blog? Simply follow us on Twitter @autismcareuk

Check out this youtube link to the first of 6 postings from the 6th US Annual Autism Research Conference whihc looks at the important issues of

- The Family's Role in Achieve Positive Outcomes

- Successful Transition to Quality of Life in Adulthood

ACUK welcomes events such as these that look beyond the issue of Autism in the context of childhood. Please check out these infomrative and thought provoking presentations.

http://www.youtube.com/watch?v=zK4FtIdwdBg

The senior team here at ACUK have comitted to ensuring the very best standards of customer care to the family members of people we support (and of course those individuals themselves).

We undertake an annual Family carer's survey and commit to sharing this across the organisation and beyond.

Here are some of the headlines -

Asked if ACUK staff are consistently polite and courteous - 98% agree or strongly agree

Asked if your realative is supoorted to lead 'a life of happiness, dignity, achievement and inclusion' (The ACUK mission statement) - 95% agree or strongly agree

Asked about being made welcome on visits - 95% agree or strongly agree

Here is what Service Delivery Director Zoe Armstrong says about the results;

"The carers survey has been massively encouraging and gived me confidence that our services are family carer freindly. However we will never bocome complacent and I want the next survey results to be even better. This ecercise has also given carer's the opportunity to raise specific issues with us and we will be following up on all of these. I would also like to thanks all our staff teams for their collective contribution to these excellent results"

If you would like a full copy of the survey results please get in tocuh with us via pete.cross@autismcareuk.com

Could we help support someone close to you? Give us a call or drop us an e-mail over at info@autismcareuk.com

Here is another good CNN article  - as you would expect it is US and Canada focused but is comprhensive and offers lots of perspctives form people on the spectrum themselves.

We really like the idea of finding your 'inner splendour'!!

Its worth checking out -

http://edition.cnn.com/2012/04/01/health/mental-health/autism-asperger-diagnoses-profile/?hpt=he_c1

Thanks to CNN for this article on Autism and positive employment opportunities in the US.

Did you know that having a job has been shown to be the single most important determinant of inclusion in society - and especially so for people with ASC's who are at greater risk of social exclusion?

http://edition.cnn.com/2012/04/01/us/iyw-autism-cafe-blends

In marking World Autism Awareness Day for 2012, ACUK is focusing on positive language and the skills and unique abilities of people on the spectrum. 

We also want to focus on ‘language’ and how it can contribute to negative stereotypes of people who, for whatever reason, are unique or different. Here’s a quick example of how language can discriminate in subtle ways -  

Greater awareness has led to reporting that more people are being diagnosed with Autistic Spectrum Conditions. This is a good thing as it means they are more likely to get the right support at school and in into their adult lives. So, in many countries there is a ‘rise’ in the numbers of people being recognised as having an ASC.    

It is not so great though, when this trend gets described in the media as an ‘epidemic’ of Autism as if ASC’s are some kind of disease.

No doubt many of us can think of similar examples where use of negative language can attach un-necessarily negative meanings or labels. Why, as a parent or a social care worker would you want to talk about a ‘disorder’ when a ‘condition’ conveys a much less negative meaning?

Some people might question the real impact of this on outcomes and even accuse those who stress the importance of positive language of being overly ‘politically correct’. Well, at ACUK we simply don’t agree and here’s why –

Firstly the language we use expresses a whole wider set of beliefs and values (consciously or otherwise).  In daily life we might not notice these nuances - yet for people who require extra support to be fully included citizens the language we use is vitally important and can set the whole tone for how support agencies engage with a person.

Secondly, isn’t it surely logical that seeing (and speaking about) a person in terms of their skills and abilities foremost is more likely to lead to real and positive outcomes in their life? If you are not convinced, try this quick and easy five stage exercise.

1)Make a mental list of the things you are good at, your talents, and the life achievements you are truly proud of - the things that you are admired or respected for. These are your ‘skills’. Think of times when you have felt really good, totally positive, and knew that the important people in your life were there with you, admiring you and supporting you in what you wanted to achieve.

2)Now take a mental snapshot of yourself as this person.

3)Next make another list of things that you find difficult, are not confident doing, or that have not worked out the way you want – perhaps think of times when you were not so well regarded by others.  These might be your ‘deficits’. Think too of the ways that you would not want to be described by others and how it might feel to hear that in the way they speak about you. 

4)And now take a mental snapshot of this person too.

5)In comparing those two images of yourself which one do you prefer?

Would you rather be recognised by others as that first positive person or that second, more negative one? Would you like to be thought of as having ‘feelings’ or ‘behaviours’?

Let’s now extend our thinking to the life of a friendly and popular young guy who happens to have complex Autism and learning disabilities. We will call him Sam. Here’s that first image of Sam;

“People admire Sam for his love of textiles, attentive nature, and wide range of facial expressions.  He is a young man who pays great attention to detail and likes things to be in their proper place. He likes to keep a tidy home”.

That second image, though, might look something like this;

“Sam is extremely disabled and non-verbal. He has an obsession with clothing and will shred clothes if left unsupervised.  He is overly pre-occupied with certain members of staff and moves items around the home in a highly ritualistic manner”.

We begin to get an idea here of the importance of positive language in shaping care and support interventions. If you take the ‘skills’ position you might see the ‘textiles’ in terms of an interest you can plan positive interventions. This could involve helping Sam to get a rag box of different kinds of fabrics and building structured activities around using this.

If you take the ‘deficits’ (or ‘failures’) position as your starting point the interventions are likely to be based around preventing Sam from shredding clothes in ways that may be restrictive and negative. Sam would get frustrated and might act these feelings out in ways that just re-enforced negative language and social exclusion.   

We have Person Centred Planning to thank for its emphasis on accentuating positives, individual uniqueness and for articulating a language that speaks in unconditionally positive terms. Part of the power of PCP comes from the way it introduces the person to potential support staff (…“the things that people admire about Sam are…”).

It is the language we use that sets the tone from the outset and, when it is positive and creative can lead to the best kind of outcomes.  Nowhere is this more valid than in the world of Autism where many people have very notable special interests or talents. We spoke to Pete Cross, head of strategy at Autism Care UK, about these issues; 

“While people may need lots of on-going support to live a positive and happy life, we always base our interventions on people’s unique skills and talents foremost. Designing support plans this way focuses what we do on the positive things that add to the self-esteem of the people we support”

It is obvious that thinking positively (and talking positively), makes a real difference to the outcomes for people with ASCs, just as it does for everyone. On 2012 World Autism Awareness Day let’s hope that people can be truly focused on the great skills of each and every person on the spectrum. If you know someone who isn’t – send them this post!!

Big congratulations to people we support at the Farmhouse and their deiciated team of staff who have raised £250 on the Sport Relief Mile!

Fittingly dressed in their red costumes, everyone had a great time while generating funds for this great cause.

Pictures to follow soon !!! 

All parents worry about their children as they approach adulthood -  

 “Will my kids be happy, successful, will they be able to move on in life and achieve their full potential?”

These are the natural preoccupations of any mother or father.

Yet when your son or daughter needs specialist care and support to become a socially included adult, these preoccupations can turn into very real worries about what support will be available after school or college. In the language of our government agencies this is known as the ‘Transition Process’.  

In this short article, part of a series for family carers by Autism Care UK, two parents share their very different experiences of  ‘Transition’.  Moving from a familiar world of Children’s Services and school to Adult Services and wider society, their stories describe the things that make for a successful transition and what can make it a nightmare. 

Mary, 47, is mother to Karl who has just turned 23 and is now settled in supported living with other people his age;

“From about the age of 14 Karl really started to act out his frustrations both at school and here at home. The school’s concern added to my own worries about his future”

Describing the process of getting a robust future plan in place, Mary talks in terms of a ‘brick wall’;

“It was really very difficult to engage Adult Services. This did not happen in any meaningful way until he was 16. I had spent months making sure that a Social Worker would attend his review only to be told he ‘might’ be eligible for future services post 19”

This sense of uncertainty typified the Transition experience for Karl, Mary, and the rest of the family;

“I realised pretty early on that co-ordinating the transition would be down to me. Don’t get me wrong the school did all they could but it seemed almost impossible to speak to the right people at the right time”

“Once Karl’s assessment was finally complete I thought our problems were over. I was not asking for Residential College, just for Karl to be able to live locally to home with support. But on the day he left school there was no provision identified, much less any confirmed funding in place”.

This meant that on leaving school, Karl lived at home without any formal services for almost eight months. His behavioural needs escalated through the lack of the structure he was used to.

“A year before, his sister had left college and gone to Uni. But I felt that Karl had been left on this terrible kind of scrapheap ”

These kind of feelings are sadly not uncommon in the parental experience of Transition -  A recent study by the National Autistic Society showed that as few as 17% of all school leavers with Autism have active future plans in place.

Yet all the evidence shows that early Transition Planning is in everyone’s interests. For families it will give reassurance (when matched with a funding commitment). For local authorities it enables long term strategic planning. Most importantly it enables autistic young people to have the support that is right for them as they enter their adult lives.  Without a meaningful assessment at beginning at 14, that grows and gets refined thereafter, vulnerable young like Karl people will inevitably be left without meaningful support on the day the school gates close behind them.        

Family carers have said many times how isolating the Transition experience can be and that because of this it is really important to know that ‘someone is on our side’. It was not until Mary had an advocate in her own right, via her local carer’s centre, that there was any real action taken to resolve her and Karl’s situation;

“Stella (carer’s advocate) encouraged me to be positive and assertive, to look to the future rather than be stuck in the present. She supported me to make a complaint and helped us to finally get the funding for Karl’s support. I needed to hear those messages at the time – because to be honest I felt about ready to give up”

As for the present, Karl is settled in an autism support service provided by ACUK, and is busy doing the things in his Person Centred Plan.  For Mary though, the word ‘Transition’ will forever be a negative one;

“I still don’t get why at the time I needed the most support there was the least support.. All I would say to other parents is be strong, fight, don’t just except the nothing you might get given after special school”.

Tony and his wife had a better experience of transition however. Much of this was to do with having a consistent social worker (based in Adult Services) who they could speak to;

“Although the process was difficult at times, it really helped to know that someone was trying to co-ordinate the different agencies on our behalf” says Tony, whose son Ben has complex Autism and profound learning disabilities.

Person Centred Planning also helped thanks to the local authority introducing Person Centred  Transition Plans when Ben was 17. This did not alleviate the family’s anxieties about funding but meant that there was a positive document that could be shared with future support providers;

“We were lucky to have the time to be very involved in the process and to speak to potential services directly. This was because everyone involved had agreed on what Ben’s needs were and how they have to be met. The Plan helped everyone as it said what was right for him”   

Ben left school and moved to a specialist residential placement three weeks later. As the service had been agreed and funded ahead of time, Ben was able to make visits to his new environment and get to know his new ACUK support staff.

The radically differing experiences of Mary and Tony mirror what is very different local practice in terms of Transition Planning.  Last year’s SEN Green Paper proposes new legal duties for Local Authorities and may herald a single assessment system to finally solve the jigsaw of ‘Transition’.  Yet with implementation unlikely until 2014 at the earliest, it seems inevitable that many parents will need to keep battling the system to get a robust transition plan in place for their Autistic teens.

Through talking to Mary, Tony and other parents ACUK have drawn together a ‘Survival Checklist’ for parents in transition. These are the things that family carers found helpful based on their diverse experiences –

Insist on early engagement by Adult Services or the local Transition Team!  – The first assessment for should happen at age 14 for young people who are Statemented and will enable everyone to think early about the future. Early planning is also in the interests of the Local Authority, especially for young people who have very complex needs that can’t be met locally.

Remember that Person Centred Planning is a powerful tool! – If you feel that the assessment is not truly person centred, you could develop your own form the many online tools available (we have included some links below). Being positive about your child’s skills and abilities (as well as the support they need to succeed) will help make for a good outcome.   

Talk to other parents and share your experiences! – a problem shared is a problem halved, and its useful to know that other people may be in the same place as you and your family.

Look at adult life beyond Specialist College Placements – funding is becoming more limited for LSP’s. Be open about where, how, and through what kind of support package your teen can continue to learn into adult life.

Know your Rights! – Be prepared to complain if agencies are not talking to each other to help the transition plan. This is not about being a ‘pushy parent’ it is about disabled young people having the same rights and opportunities as their non-disabled peers.

Be prepared to do some research! – Knowledge is power and you may find your local authority’s website a good first port of call to learn what you can expect, and details of your local councillor should things go wrong.

Contact future providers early on! – As part of your research, speak to organisations that may be able to provide care and support post school.  Check that they are truly specialist in Autism if your son or daughter is on the spectrum and don’t be afraid to ask difficult questions or to arrange a visit to the service.

Don’t focus on the process, focus on the outcome! – We all know that Transition planning won’t be straightforward by its nature (no matter how good your Local Authority). Sometimes it helps to keep the outcome in your mind when the process feels like it is taking over.   

Look for a knowledgeable friend if things get difficult! – Many local Carers Centres have advocacy services. They will be able to advise what support is available to you locally throughout the transition process, or even support you at meetings.

Autism Care UK would like to thank  Mary and Tony for sharing their experiences for this article. We have provided some useful links for family carer’s in transition below. If you would like to contact us directly to talk about transition please get in touch at info@autismcareuk.com  

Some Useful Transition Links – 

http://www.transitioninfonetwork.org.uk/home1.aspx

http://www.direct.gov.uk/en/YoungPeople/Youngdisabledpeople/index.htm

http://www.gettingalife.org.uk/resources.html