Need for a national strategy

John - sociable, likes to be with his peers, needs to be spoken to directly, uses concrete language, is fantastic on computer games, wants his things in order, change stresses him, likes to know what is going to happen and all the boys want him on their football team because of his strong direct shot - is an eleven year old boy with autism.

The above is a made up from various descriptions of children with autism as articulated by children with autism themselves, parents, educators, peers and other professionals during MAPS (McGill Action Planning Scheme) sessions.

Prof. Andrea Ganavaro talks about "the autisms" as each and every individual is very different. "Every person is unique:

• Those who have developed language and others who have not.

• Those who present challenging behaviour in certain circumstances and those who do not.

• Let us respect every person's uniqueness.

• Temple Grandin in an interview said that she would not want to exchange her autism to anything else because this is what makes her personhood and gets her to perceive the world in a different way not in the wrong way." (Agius Ferrante C., Mifsud A., Tanti Burlo' E.,(2007) A Person Centred Approach To Autism: Equal Partners Foundation)

That is precisely why Equal Partners adopts a person centred approach based on the social model of disability. One support programme which fits all may have little or no benefit.

The United Nations General Assembly in New York has declared Wednesday, April 2, 2008 as the first ever World Autism Awareness Day. This is a historic occasion and the actual idea of having a World Autism Day came from the State of Qatar.

CNN is dedicating a whole week to create a greater awareness of what they describe as being "one of the greatest mysteries of medicine. Although autism will be diagnosed in more than 25,000 US children this year, more than new cases of childhood AIDS, diabetes and cancer combined, scientists and doctors still know very little about the neurological disorder".

The statistics are baffling. There has been a rapid increase in the numbers of identified persons with autism. In the 1970s the prevalence rate was considered to be two to three per 10,000. In 2007 the prevalence rate stood at one per 150 in the USA and one per 58 in the UK. (Adams J.B., Autism, An Overview, Powerpoint presentation available on www.Autism.com.)

Why is this happening? The causes of autism are unknown. Both genetic and environmental factors are active in causing autism however no specific gene and no specific environmental triggers have been identified as yet.

Could it be that professionals are identifying autism earlier and more efficiently? Yes, I believe we are but this does not in any way account for the great increase in numbers. We are identifying the children at an earlier age (18 to 24 months), that is true. However, these same children would have been identified at a later stage. We are certainly now being more refined in identifying also those children with minor traits of autism.

What is autism?

A person with a profile of autism has difficulty in:

• Socialisation: difficulty in social skills and relationships mainly due to the difficulty in reading and understanding social cues.

• Communication (both verbal and non-verbal). The issue here is not that the child does not talk but it's a deeper difficulty in understanding the world of language, both in its verbal and non-verbal (gestures). Temple Grandin, a person with autism, writes about "thinking in pictures" in her book by the same title. Some of our children pick up language from television and not from the people around them making them sound like a cartoon character.

• Stereotypical behaviours (like repetitive motor mannerisms).

• A desire for sameness (the development of rituals, the desire to see a video over and over again).

In dealing with autism, first of all early intervention is crucial. There needs to be a national screening policy for autism. Parents and their other siblings find it very difficult to understand their child with autism. During a presentation at the Autism Awareness Week organised last year by the Autism Focus Group we outlined what we considered to be good practice guidelines for supporting persons and families with autism. These are:

• Emphasis on the social model of disability;

• One's attitude;

• Person centred planning leads to continual listening, learning and action and helps the person get what they want out of life;

• Adjusting the natural environment to meet the child's needs;

• Modelling one's interactions to suit the child's ever-changing self;

• Understanding how the person perceives, communicates and interacts with his/her environment;

• Creating opportunities for making meaningful choices;

• Developing natural supports: family members, peers at school, peers at work, peers in the community, the community in general.

All supports need to be inclusive supports in the community in general. If our final goal is the person's inclusion in the community then we believe that all support needs to be given in the community, that is, at home, school and the community as a whole. It is only there that a sense of belonging develops.

In choosing the right approach the following are the foundations upon which Equal Partners bases its intervention:

• Each child and every family is unique.

• There is no one universal way of supporting a person with autism.

• Respect, understanding and empathy must be central to one's interaction with the child and his/her family.

• An interaction process which is non-intrusive, non-aversive and non-painful: helping all make sense of the world around them.

• Joining the child in his/her play through friendly interaction, communication, games and fun.

• Creating a safe environment.

We must remain open to different methods:

• Augmentative and alternative communication

• Functional analysis of behaviour and beyond ABA

• Stress reduction and self control

• Social stories

• Environmental changes

Equal Partners is a parent run foundation and as such empowers parents to take decisions concerning their child as well as supporting them to become advocates for their children.

The individual with autism and their other siblings need to join together to create a strong advocacy group for the future. Sibshops are one way of preparing the siblings for this future role.

Equal Partners is taking this opportunity to launch the need of a national strategy for supporting persons with autism throughout the lifespan within an inclusive philosophy.

Equal Partners has presented the education authorities two documents for pilot projects:

1. Challenging moments - supportive schools: supporting children with autism in ordinary schools and

2. Post-secondary education.

It is hoped that these projects will be taken up and supported by the relevant authorities.

Parents of an adolescent with autism had this to say about their dreams for their child and that of others:

• Better quality support in ordinary schools for children and adolescents with autism.

• Support needs to be organised as a whole school approach with teachers taking on responsibility for their child and all the children in the class with universal design for teaching.

• An educational vision that goes beyond secondary school leading to a welcoming post-secondary education and the transition into the world of work.

And finally the nightmare of all parents: what is going to happen to my child? Supported living in one's community is the parents' final preoccupation.

Today is a day for celebration for the lives of persons with autism, their families and all those supporting them to develop a sense of self-determination and subsequently a better quality of life.

Dr Tanti Burlo' is consultant psychologist at the Equal Partners Foundation.