On being "Special" - Thoughts for WAAD 2013

by ACUK 2. April 2013 20:19

Have you ever pressed the ‘send’ button on your computer or phone and then immediately regretted it? I had this feeling just last week upon tweeting the following;

"We all want to be special in some way, to the people we love, and in terms of our talents. But ‘special’ is not always a positive label"

I was immediately struck that 160 characters cannot begin to explore the term ‘Special’ in the context of Autism and learning disability, loaded as it is with so many meanings and interpretations. Had I just committed that rising crime of saying rubbish on a social network? I guess I was trying to say, crudely, that this word can be used in ways that are helpful in the context of Autism (and other disability) awareness but also in ways that are at best unhelpful and non-inclusive at worst.

So as a tiny part of marking World Autism Awareness Day 2013 I thought it would be interesting to explore in a little more detail what ‘special’ can mean in terms of identity politics and also in the design and delivery of education and support services.

Back to basics then for a couple of dictionary definitions courtesy of a trusty Oxford English Dictionary where ‘Special’ has a pretty long entry with two prominent definitions that are helpful -

"Of such a kind as to exceed or excel ... in character, quality or degree"

"Marked off from others of the kind by some distinguishing qualities or features"

In the first definition we see the idea of ‘prized qualities’ in the word while the second definition focuses more on the idea of Special as ‘different’ (and potentially excluded). For me these sum up both the positive and potentially negative contexts in which the word gets played out in the world of service provision.

Here then, are some suggestions as to why ‘Special’ is such a loaded and controversial term in relation to Autism and Social Care. Let’s begin by thinking about the experiences of a parent of an autistic child. From the moment this child is born they are special – not because of any disability or difference (which may or not be apparent at birth) but ‘simply because’ they are a loved son or daughter, the feelings of any new parent.

Yet as school years begin and the parent must negotiate the bureaucracy of the SEN system and statementing ‘Special’ turns up in a different (if initially well meant) context and is now more firmly about ‘difference’ and the need to prove this difference in order to draw down help and support from state systems.

This idea of ‘special’ as proving eligibility or entitlement is all too familiar in our UK care system and can have pernicious consequences. For example if the only way you can get any help in the care and support of your loved one is by attaching a negative label, you will likely do that to satisfy the state criteria and ‘prove’ the level of already very real need (bad ‘special’ labels). This is the exact opposite of the approach favoured in Person Centred Planning of starting with the person’s skills, gifts, and the things they do well as a basis of providing and designing support services (good ‘special’ labels).

Particularly as teens, many kids with autism do not want to be ‘special’ at all though – oftentimes they can be acutely aware of being different but feel the social and school world pressures to be like their peers. A young person with more profound Autism of course may not be aware of their ‘special’ status. Perhaps an older person who is high functioning will openly enjoy and celebrate their difference to others. This all adds to the level of complexity that comes with ‘special’

Yes "Specialist" support is always important – be it in formal or non-formal contexts. Since this is a piece for World Autism Awareness Day it can’t be stressed enough how a considered understanding of the spectrum by the people around you makes a big big difference for people of all ages and at all points on the Spectrum.

It’s interesting though how our two definitions of ‘special’, can lead to very different interpretations. Here are examples of both written in from a first person perspective;

Firstly - "I’m special because have people who love and care for me in my life. I have a Circle of Support that helps me be in control of the support I receive. I also have special interests that I am an expert on and enjoy sharing with like who are into the same stuff"

Secondly - "I’m special because I have a service based label of being ‘different’ that has been imposed on me"

The word ‘special’ has played, and continues to play a big role in the design and delivery of leisure and day services particularly. Think ‘Special Olympics’, ‘Horse Riding for the Disabled’ and so forth. As a card carrying member of the Inclusion movement I think we should always think quite critically about these kind of activities- but without dismissing them, the work of the many dedicated volunteers in their delivery, or the fact that many disabled people enjoy participating in them.

I’ve heard it said though, that if the word appears in all your weekly activities it is a sign you are not socially included – and it’s hard to disagree with that perspective. It’s all too possible as an Autistic or Learning Disabled person who needs a lot of care and support to have too much ‘Special’ in your leisure life. Again with this word ‘special’ it seems to be a question of balance and a sensitive approach.

If we uncritically apply the idea of ‘Special’ as difference in the design of provision we risk missing so much that the ‘ordinary’ community has to offer. We can easily overlook the endless possibilities engendered by Community Connecting and the readiness of non ‘special’ groups and organisations to welcome and include people with Autism or Learning Disabilities. Inclusion has been described as a ‘win-win’ in these contexts and it is nearly always the case – think for example of all the things that people on the Spectrum have to share, teach and offer the wider community form their day to day experience and beyond.

A ‘special’ model of activity provision simply does not allow for this, as I always remember when I see (with dread) the ‘special’ day-care bus that marks difference, is structured around 10am to 4pm, and transports ‘tourists’ around a community that could offer so much more if only different thinking was applied.

The passengers on that bus are ‘Special’, yes – but not, I fear, in an empowering or even particularly meaningful way.

This is not a piece specifically about Autism Care UK and the views expressed here are my own, but I am struck that the four key outcomes that people told us were important are really meaningful here.

If you enjoy ‘happiness’, ‘dignity’, ‘achievement’, and ‘inclusion’ (as well as your measure of ‘difference’) in your day to day life then you will be ’special’ - in a good way.

All these things are universal. Have a great Autism Awareness Day 2013.

Pete Cross is Head of Strategy with ACUK.

ACUK's response to the latest Panorama revelations about Learning Disability Hospitals

by ACUK 29. October 2012 23:10

All of us at ACUK are shocked and appalled at the further revelations about Winterbourne View Hospital as revealed in tonight’s BBC Panorama “The Hospital that Stopped Caring” . This once again confirms our strongly held belief that people with Autism or a learning disability should never have to live in a hospital setting of any kind. We also believe that people with highly complex needs can be supported to live ordinary lives with the right level of skilled and sensitive support.

People are best supported when they have an active person centred plan that enables them to achieve the greatest level of independence possible with the support of well trained and committed staff. In the absence of this, people are more likely to develop so called ‘challenging’ needs which in turn can lead to the commissioning of ‘secure’ or ‘hospital’ services. This is a vicious circle that needs to be broken. ACUK has never provided ‘secure’ or ‘hospital’ services and never will.

We think that a pathway based model of support is the best way to deliver good outcomes for people with complex needs. We welcome the on-going debate generated by the Winterbourne scandal and hope that this will be translated into real action to ensure people can get the support they need so they don’t have to live in unduly restrictive settings. All quality providers of care have a role to play in making sure that this happens. Therefore, we take this opportunity to renew our commitment to working with health and social care commissioners, families, and the regulatory bodies to ensure that we play our role in ensuring that everybody with Autism or a learning disability has the very best standards of care and support.

The Autism Hall of Fame

by ACUK 26. September 2012 11:53
we have scoured the web to bring you the definitive list of famous people thought to be on the Autistic Spectrum…   Of course recognition and diagnosis of Autism is a relatively recent phenomenon but the individuals listed below are thought to have demonstrated significant indicators of an ASC during their lives. As we know Autism effects everyone differently - from people who are very high functioning to those who need on-going and substantial support. This list, though, is a celebration of Autism in all its forms. Imagine for a moment a world without the contributions of the following and how much worse off we all would be - Albert Einstein (Theoretical Physicist) Sir Isaac Newton (Physicist) Charles Darwin (Naturalist) Thomas Jefferson (3rd President of the USA) Michelangelo (Sculptor, Painter, Architect, Poet, Engineer) Hans Christian Anderson (Author) Andy Warhol (Artist) Emily Dickinson (Poet) Marie Curie (Physicist and Chemist) Pablo Picasso (Artist) Lewis Carroll (Author) Wolfgang Amadeus Mozart (Composer) Bela Bartok (Composer)

Apply for your free Tony Attwood conference ticket

by ACUK 25. April 2012 03:59

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

Great content from Autism Conference online - Ageing and Transition

by ACUK 20. April 2012 08:05

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

 

  

Family Carers have their say about ACUK services!

by ACUK 15. April 2012 08:30

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

 

Great Autism Article...

by ACUK 11. April 2012 10:22

 

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

 

  

Here's a cool autism employment story

by ACUK 11. April 2012 08:43

 

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

 

 

 

On World Autism Awareness Day - take five simple steps and be truly ‘skills focused’!

by ACUK 2. April 2012 22:41

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!!

The ACUK Sport Relief Mile!!

by ACUK 25. March 2012 23:11

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 !!!