We had the opportunity to learn from the US experience of seeking to provide for those with autistic spectrum disorders, and to examine the provisions of the 2006 Combating Autism Act and recent bills brought before Congress.
It is clearly incredibly difficult to legislate for services and the last thing anyone would want to do is rush prematurely into flawed legislation. Clearly Northern Ireland requires a Northern Ireland solution for autism sufferers and their families. Increasing our understanding of approaches adopted elsewhere can help guide us in our efforts to find the most effective way forward.
The recently-formed Celtic Nations Autism Partnership has, as a result, now established links with the Autism Society of America. A Memorandum of Understanding was signed between the House of Representatives Autism Caucus and the Northern Ireland Assembly Autism Caucus to identify areas of common interest such as the development of legislation, sharing research and encouraging exchange opportunities. This was subsequently endorsed by Democratic front-runner for the Presidency Hillary Clinton.
Senior US politicians stated that they had supported efforts to establish devolution in
Northern Ireland and now they valued the opportunity to be involved in one aspect of the practical outworking of that progress. As well as discussions with US Representatives Mike Doyle and Chris Smith, who together have brought forward the Expanding the Promise for Individuals with Autism Act, we also met with Congresswoman Carolyn McCarthy and Congressman Richard Neal.
An estimated 1.8 million families in the United States are affected by autistic spectrum disorders. According to research from their Centers for Disease Control and Prevention, autism affects approximately one in every 150 children. It occurs across all racial, ethnic and social groups.
The cause is uncertain but it is thought that both genetic and environmental factors may be involved. Across the spectrum there are a range of degrees of severity, and boys are four times more likely than girls to have autism. Autism is usually diagnosed in early childhood by a multidisciplinary team who will assess the child in a variety of settings – home, school and at a clinic. There is no specific medical test for autism.
Autistic spectrum disorders (ASD) are a range of lifelong developmental disorders, characterised by difficulties in social interaction, communication and imagination. ASD sufferers may appear indifferent or aloof, insensitive to the needs of others and have difficulty cooperating with other people. They may have language problems, both understanding and speaking, as well as non-verbal communication. They can have problems with interpersonal play and imaginative activities, preferring instead familiar routines and resisting change.
There is a spectrum or range of disorders, from those with severe learning disabilities, some of whom may never speak, to those with average or above average intelligence, such as sufferers of Asperger's syndrome. Some may be particularly talented in a specific area, such as drawing or mathematics.
Autism represents a lifelong burden not only for those diagnosed but for parents and other family members as well. Prevalence rates are increasing rapidly. We cannot afford to sit back and allow those affected by autism or their families to face the immense lifelong challenges of caring alone.
Greater investment in treatments, interventions and services for people living with autism is long overdue. The need for vastly improved respite care is undeniable. It is important to provide information and assistance for children and adults with autism whose families are often burdened with navigating a complex array of agencies in order to obtain the support they so desperately need.
There is currently no way to prevent autism and no known cure. Aside from applied behavioural analysis, there are no effective evidence-based treatments. We must ensure all people with autism can reach their potential and become accomplished contributing members of our society. Treating symptoms requires hours of intensive therapy every week, which is out of reach for families unable to pay. Early intervention and concerted treatment can limit symptoms, enabling the individual with autism and their family to participate fully in their communities.
Innovative services are needed to meet the needs of young people, and access to such services must be improved. Older adults also need to be considered. There are few services for adults with autism and even diagnosis at a later age is often difficult.
Training in recognising ASD should be part of the professional training of all frontline health and education professionals. All staff working with children and adults should be alert to the tell-tale signs of ASD and a clear referral route established with key workers appointed to provide support to individuals and their family.
The current shortage of relevant professionals, not just for autism but across other developmental disorders and learning difficulties, must be addressed. There must be adequate funding to ensure services are properly resourced and staffed. The Assembly must commit to ensuring that the lives of those with autism and their loved ones improve.