By Rob Baillie, Lighthouse Business Relationships Manager
In 1998, in response to growing requests from associations dedicated to the welfare of people with autism around the world, the World Autism Organisation (WAO) was established.
Worldwide, the WAO has sought to actively promote the indisputable rights of people with autism to:
- Live independently
- Self-advocacy and involvement as far as possible in decisions affecting their future
- Accessible and appropriate education, housing, assistance, care and support
- Freedom from fear, threat and abusive treatment
- To ensure these rights are enhanced and enforced by appropriate legislation worldwide
This year the WAO conference came to Sunderland on September 22nd with a theme of ‘Sharing Good Practice in Adult Autism Services’. As a past delegate at such events and previous speaker in Europe, one can never anticipate what may be about to be presented and the means of delivery, but what is always guaranteed is that you will be faced with an event that oozes passion and determination from individuals and organisations whose intent it is to develop and deliver the best for people with autism. This year’s event was most certainly no let down.
The conference was attended by delegates and presenters from all corners of the world, including Europe, Kuwait, South Africa and America, and also filmed for screening in other countries that were not represented.
At a time when our worldwide community of people with autism is reported as continuing to increase – and is currently estimated as exceeding 9.5 million – the WAO has as its main objectives “to improve the quality of life for people with autism and their families in all parts of the world” and for us all to “work together and reach a better quality of life for people with autism and their families”. The impact on society today will be even greater tomorrow if we fail to adequately address this.
During the course of presentations delegates were able to experience and convey an array of wide ranging emotions from the excitement of hearing Dr Carolyn Garver, from the Autism Treatment Center in Texas, speak of their research to develop interactive robots. The intention of the robot is to support people with autism to learn about emotions and physical contact. She describes the robot as being much safer for people having autism because there’s less for them to interpret and they are very predictable. She says generally people with autism don’t react well to others because they don’t understand facial expressions.
This type of research is not new to the UK. Scientists at the University of Hertfordshire first began developing a similar version of a robot called Kaspar in 1998, however the Texas project takes this a number of significant steps further where the robot has skin with a life-like feel and is being developed to respond spontaneously to questions, display a range of facial expressions and be able to track eye movement.
Dr. Garver was keen to point out that robots will never replace humans and that ultimately, whether the person has autism or not, there is still a need for them to be able to relate to other people.
The extreme to this presentation was that delivered by Jill Stacey, from Autism South Africa, who spoke of the number of difficulties in developing any type of service in the country. Statistics suggest that every hour a child with autism is being born in South Africa and only 0.001% of these children have access to a beneficial education.
Jill, a parent of a son with autism, originates from Kent and is now National Director of Autism South Africa. She spoke of the difficulties in the country surrounding different cultural, spiritual and tribal beliefs, which all come along with additional, beliefs, rituals and ceremonies, local laws and customs. The list appeared endless and daunting and, equally, there are severe financial constraints to work with and areas where infrastructures and support systems for communication and transport are non-existent. While Jill was unable to discuss any short term resolution to some of these difficulties what she was able to clearly deliver was her intent to continue in her efforts.
Steve Muller, President of the National Association of Residential Providers of Adults with Autism, gave an outline of the American picture and described his country’s national crisis in the provision of residential services, the most critical issue being inadequate funding. He spoke of each state having different rules, regulations and procedures in the development and delivery of residential services.
From a personal perspective, the conference most definitely succeeded in its mission to share good practice and perhaps the two most important and impressive points from the day are:
(1) Despite the many difficulties faced throughout the world – the inequalities, inadequacies and clashes that there may be – for the purpose of autism all of this was cast aside
(2) Every presenter had people with autism at the heart of their presentation. Those from outside of the UK included individuals via different media formats and those from the UK had the individuals themselves deliver alongside them. This is clearly indicative that we can be cohesive and non-competitive wherever we are in the world as parents, practitioners or providers with the same common goal as the WAO.