Maureen O'Sullivan (Dublin Central, Independent) | Oireachtas source

Ba mhaith liom aitheantas a thabhairt don Teachta McCarthy de réir na hoibre atá déanta aige ar an mBille an-tábhachtach agus riachtanach seo.

The words "Autism is not me. Autism is just an information processing problem that controls who I am" is a quotation from the author of the books entitled, rather interestingly, Nobody, Nowhere and Somebody, Somewhere.

Generally, we are talking about those sharing a triad of impairments that affects their ability to understand and use non-verbal and verbal communication and understand social behaviour, and their ability to interact with others. They show restricted obsessional or repetitive activities, and there is the additional dimension relating to the difficulties in processing sensory information.

Parents will have an idea by the time the child is 18 months old that something is amiss. There will be a communication or social difficulty, or a difficulty with physical contact or social interaction. It must be heartbreaking for parents and grandparents to try to pick up a toddler who does not want to be touched and who does not want to be cuddled and held, and then to see the short attention span and preference for solitary play.

In reading about autism for the debate today, I noted there is such a range of theories, ideas and suggestions, but, it appears, no gold standard for treatment. While there may be some common factors, each person with autism can display different physical, emotional, behavioural and social issues. It is not surprising that it is sometimes called pervasive developmental disorder because it has an impact on such a wide variety of abilities. I understand that very few of the range of treatments have been scientifically proven to be effective, but parents, siblings, families, teachers, therapists, etc., have positive experiences of many of these activities and treatments.

Looking at children - the Bill is about adults but, as Deputy Ó Caoláin stated, autistic adults start off as autistic children - there is no single intervention, but most individuals respond best to highly structured behavioural programmes. I want to mention some of these programmes to show the range. ABA, mentioned by Deputy Finian McGrath has had some very positive scientific results. There is floortime therapy and there is an interesting one about diet - a gluten free-casein-free diet. We know about speech therapy and occupational therapy, and sensory integration therapy. There is verbal behavioural intervention.

There is also the school-based TEAACH method which focuses on the design of the physical environment, and the social and communicating environment. The environment is structured to accommodate the autistic child and because children with autism are often visual learners, it is important to bring in visual clarity.

This brings me to PECS, which uses picture cards and encourages the expression of feelings through non-verbal activity. Relationship development intervention, which is parent based, is a programme to be implemented into regular daily activities. SCERTS promotes child-initiated communication and involves all the players - peers, parents, etc. What projects and treatments have found about the use of classical music has been very interesting. A wide range of treatments and ideas are available. The last thing parents want is to have to spend precious time battling authorities in order to access some of these treatments because what might work for one child might not necessarily be of maximum benefit for another child. I refer to the ChildVision project in Deputy Finian McGrath's constituency in what was formerly St. Joseph's School for the Visually Impaired. It has an excellent multi-disability visual impairment unit.

Regarding the adult situation, I came across a research project in England which found that 61% of adults with autism rely on families for financial support; 40% live at home with their parents; only 15% are in full-time employment; 75% either do not have friends or find it hard to make friends; and 50% have been bullied or harassed as adults. This group of adults with autism has produced a self-advocacy booklet. There is a need to support people with autism as they move into adulthood and into older and middle age, because the first cohort of people who were diagnosed with autism as children are now at that particular age.

I welcome the Bill and particularly the legislative and equality aspect; the cross-party and cross-departmental strategy including families and carers; the implementation; the reports - I think they should be more frequent than every three years; the autism awareness campaign; and the accountability of the services. I have just come from an International Women's Day event in the SAOL project in my constituency where I met a lady who claims to have "put the camp into campaign". She set out with her tent many years ago to protest at the Department in order to get educational services for her autistic child and she succeeded. That young man is now 31, living at home with a range of needs. People with disability should not be politicised and there should be general cross-party agreement on it. They are most vulnerable people and need the services that people without a disability can access.

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