Being Different: Living Life with Asperger Syndrome
by Dave Hughes

We here at Butterflies recently attended the Systemic and Intergenerational Approaches workshop at Derby University, organised by our long-time associate Gary Robinson.  Amongst the many interesting and varied things that happened that day was meeting a lady by the name of Heidi, who is part of the Nottingham City Asperger Service and works closely with Jacqueline Dziewanowska, a nurse consultant leading movement into improving the understanding and treatment of Asperger Syndrome in adults.  Heidi kindly invited us to the launch of a new DVD being put together by NCAS called “Being Different: Living Life with Asperger Syndrome”.

We attended the launch event on 24th January at the Nottingham Contemporary art gallery.  The itinerary included a brief history of the DVD and its inception as well as a showing of the DVD in its entirety.

The introduction revealed the extensive research into adult Asperger’s that NCAS has been doing, as well as the work that they have been doing trying to find the best ways to help those with the condition both medically and socially.  NCAS and its staff promote the concept of empowering those with the condition to believe in themselves and not to allow society’s prejudices to overcome their own sense of self.  This core belief comes across very strongly in the DVD.

Jackie and Heidi presented some background information about their services and the studies that led to the creation of the DVD.  They recognise that the diagnosis is just the beginning of the journey and that having a diagnosis of Asperger’s can raise more questions than it answers. They recognise that there are not enough knowledgeable professionals in the community to deal with the condition and NCAS aim to be able to train the wider community to be able to respond appropriately to those with the condition, with a stated goal to train 200 people every year in better approaches.

In 2011 NCAS launched a booklet named “Asperger Syndrome – Step Into The Light: A Closer Look at this Hidden Disability”, which was the first step towards a wider understanding of Asperger’s in adults and what difficulties are faced in the community.  The DVD is the next stage in this journey, with actual “Aspers” speaking frankly about their condition and their experiences. Later in this year, NCAS intend to hold two focus groups to drive further improvements in the service.

When discussing the reasons behind the DVD’s production, it was revealed that according to the Nottingham NHS patient register, 10,000 adults in Nottingham have a diagnosis of Asperger’s – this equates to 1% of the city’s population: a small percentage but a huge number. When trying to work out the best way to understand the condition, clinicians quickly found out that their best resource was the experiences of the service users themselves.

The DVD was then played for the audience. The content is mostly from interviews with service users and their families and gives first hand views and opinions from the people closest to the situation. Their comments and opinions were frank and honest and in most cases were eye-opening.  They explained how their perceptions can differ from those around them and that they process information in a different way than the “social norm”.  One woman asked why should it be Aspers that have to change to fit into society? Who are we [so called "normal people"] to say that our way is better? Maybe we’ve got it wrong!

And you know, sometimes I think she may have a point…

The diversity of circumstance of each of the service users in front of the camera gave a wide variety of opinion and experience that I found to be very enlightening and has definitely improved my understanding of the condition and how adults with that condition feel and how they need to be considered. It was clear that in many cases those with the condition do see themselves as abnormal but they see this as a strength and not a setback.  As it should be.

It was a refreshing change to hear that so much support was being put in place for adults with autistic spectrum condition by NCAS, and it wouldn’t be a stretch to say that this sort of knowledge and information NEEDS to be distributed as widely as possible. Employers and anyone else who is required to deal with Asperger’s sufferers needs to have the insight that this DVD brings.

Well done to NCAS for taking this path and for making the DVD available outside their own area so that anyone can benefit from their good work.

In relation to Butterflies and what we do, it has given us a real awakening into what is actually available out there for adults, and that the ball is finally rolling in some parts of the country. Neighbouring Derbyshire (and especially Derby City) should get a wake-up call from this and try to move themselves forward with the transition from CAMHS to adult mental health services in line with what NCAS are doing.

Yet again it has been said that there is a drive to roll the majority of Autistic spectrum disorders into one umbrella – this means that the inevitable future for ADHD will be that it will be classified as ASD and it’s looking like we need to keep up with this – we’ll be looking into that this year for definite now.

As attendees at the launch event, we will be receiving a copy of the DVD for the organisation, and Heidi and Jackie have granted us permission to hold public showings of the DVD for service users in Derby and Derbyshire.  If you are interested in this then please let us know through the “Contact Us” link at the top of the website.

Finally, for another review and more information about the DVD, visit this link.

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