James Reilly (Fine Gael) | Oireachtas source

I move: "That the Bill be now read a Second Time."

I welcome the Minister for Health, Deputy Simon Harris, to the House and thank him for appearing in person for the Second Stage debate. I also thank Senators from all parties and none who indicated support for the Bill, which is much appreciated. I also thank the Minister of State at the Department of Health, Deputy Finian McGrath, for his support.

In 1998, I and a number of other parents, some of whom are in the Gallery, sought an amendment to the 1997 Act to close off a loophole which provided parents of children with an intellectual disability with a derogation from the requirement to attend school. This provision was being used rather cynically by the Department of Education to obviate its obligation to provide education for these children. I remember the occasion well. We had been invited to the House by the then Senator Dick Roche. It was as a result of this issue that I became involved in politics and ended up on my local health board. It is only right, therefore, that I address it again today. I never thought then that I would introduce this Bill in the Seanad nearly 20 years later.

Autism spectrum disorder is primarily characterised by delayed or deviant communication in both verbal and non-verbal social interaction. Many people with autism and Asperger's syndrome do not recognise social cues. We all know, especially Senators, how we can communicate with each other non-verbally. Social impairment is a major issue and repetitive, stereotyped or ritualistic behaviour, including self-stimulation or "stimming" as it is known, are also characteristics of autism spectrum disorder. All of these features may occur in widely varying degrees of severity and in many different manifestations. They can be so severe that a child may be diagnosed at an early stage in life and require 24-hour care. In other cases, however, the symptoms are so mild that a diagnosis is not made until middle adulthood.

I will briefly address the struggle parents have endured in this regard. Rather than discuss the work of Leo Kanner and Hans Asperger in the 1940s, I will go back only as far as the 1960s, which were not a good time for parents of autistic children. At that time, mothers had to endure the belief, made popular on chat shows by Bruno Bettelheim, that they were responsible in some way for their child's autism. Imagine the parents of a child who had been given a devastating diagnosis with no cure being subsequently told that they were bad parents. Women, in particular, were told they were cold and described as "refrigerator mothers". Fortunately, many mothers had good sense and one of them, Clara Parkes, a professor of English, had the courage to write a book in which she asked how she could be a perfectly good mother to two of her three children but somehow not a good mother to her third child. This view, she argued, did not make sense and was not logical.

Professor Parkes and many others started a movement that questioned this approach. Bernard Rimland was heavily involved in this campaign and was very committed to the cause. I was astonished when he answered a telephone call I made one evening to his home in the United States because it was 1 a.m. in America. He spoke to me that time and answered a call from my wife on another occasion.

There followed a period of greater awareness and enlightenment, and the 1970s saw significant leaps forward in studying the nature of autism and its treatment. The first major twin study, which was carried out by Professor Michael Rutter in England, showed a genetic link in twins. Lorna Wing's book, The Autistic Spectrum: A Guide for Parents and Professionals, was a powerful counter to the book, The Empty Fortress, by Bruno Bettelheim who had coined the "refrigerator mothers" term. Lorna Wing believed not in a different syndrome but in a range of disorders.

While the incidence of autism in the general population was believed to be 1 in 5,000 in the 1960s, the Camberwell study of 1979 showed it was closer to 1 in 500 and we now know it is 1 in 68. Whether the most recent figures indicate an increase in the incidence of autism alone or a combination of better awareness and diagnosis and increased incidence is still a matter of conjecture.

Ireland had its own champions in this area, Pat and Nuala Matthews, and they are present in the Gallery. It was not until 1979, however, that the World Health Organization officially recognised autism. As a member of a health board in the early 1990s, I spent a year trying to convince an inspector from the Department of Education that autism even existed. Having finally convinced him, he refused to accept the need for a different educational approach.Therefore, children in those days were diagnosed with great difficulty and, even then, there were few if any services available. They were seen as emotionally disturbed and were educated with emotionally disturbed children who were otherwise normal. This had a negative effect on both sets of children. The situation for adults was much worse. Autism spectrum disorder, ASD, specific interventions and services for adults were almost non-existent, reflecting the lack of understanding and investment in provision for adults.

Research from Irish Centre for Autism and Neurodevelopmental Research, ICAN, has highlighted that many individuals with ASD have symptoms of co-morbidities, including seizures, gastrointestinal disorders, sleeping problems, feeding and toileting problems. Adolescents, adults and older adults are under-studied populations They have difficulties with social relationships, residential independence, employment, social inclusion and independent living skills. This is the month of mental health. These people have many mental health issues, with anxiety disorders and depression being much more common in adolescents and adults with autism.

As a group, people who have autism are more than twice as likely to die prematurely. Autism research finds the mortality rates to be two to ten times higher than normal among various groups with autism. People with autism die younger. Accidental injury was the leading cause of death at a rate three times higher than in the general population. The autistic child does not look back. The normal child will walk down a beach and keep looking back for reassurance. The autistic child just keeps going. I have my own story about that. On one occasion, our son got out under the gate unbeknownst to us when we were on holidays. When we realised he was missing, panic ensued. We hopped over the gate - I was a lot more agile in those days - ran down the road and another road, saw a group of people and asked them whether they had seen a child in nappies. They said, "Yes, he has gone that way." I was astonished that they did not stop him but we caught him. He was literally on the verge of crossing a main road, a busy main thoroughfare. He would not have survived. One of the more astonishing statistics is that children with autism are 160 times more likely to drown than children across the general population. Suicide and epilepsy rank only behind birth defects as the most common causes of death. Premature death for autistic people is higher across nearly all causes. We must address this and shift attention to addressing the preventable and treatable issues and conditions that drive these disturbing statistics.

In the short time I have, I will talk about the difficulty for parents, particularly in the past, who are so desperate as orthodox medicine fails them that they will look to anyone who offers help. Of course, that makes them very vulnerable so they try things like methodology and craniology. I remember saying to my wife that when all those things failed, she would probably go looking for codology if she thought it would help because that is the desperation. People need to be protected from these charlatans, some of whom are medical people.

While some progress has been made in our understanding of ASD, no consensus exists on how to screen and diagnose for it or provide clinical care or educate people with ASD. That is not just the case in this country but right across Europe. However, other countries do have an ASD strategy. England, France, Canada, Scotland, Wales and Northern Ireland have strategies and we need one too. We need one in order that we can address this ever-increasing problem that will be a huge burden on the finances of this State if we do not intervene at the appropriate time, diagnose early and put in place the supports that can allow people with this condition to live a much more independent life. I do not know how much more time I have.