Time for a national autism strategy

A greater investment in research and a focus on early intervention treatments to help those with autism is required urgently, writes Dr Geraldine Leader

Last week, the Centre for Disease Control and Prevention updated its estimate of autism prevalence in the US to 1 in 88 children.

By comparison, this is more children than are affected by diabetes, Aids, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome combined. The statistics, based on a 2008 snapshot of 14 monitoring sites, represent a 78% increase in autism over the previous five years.

Prevalence rates are not yet available in Ireland but there is no reason to believe that the statistics will be any different. What is in no doubt is that autism has risen dramatically over the past decade.

A much debated topic is whether this increase can be attributed to improvements in our diagnostic tools; greater access to psychological services or an actual rise in the incidence of autism. Of course behind the statistics are real families and real individuals who are struggling daily with the condition.

Autism Spectrum Disorder is a complex disorder that inhibits a person’s ability to communicate, form friendships and relate to the outside world. It is characterised by restrictive and sometimes repetitive patterns of behaviour, interests and activities. Autism is a spectrum disorder. Therefore its symptoms may range from mild to severe. For example, some children may have strong language and intellectual abilities, while others may not be verbal and may require lifelong care.

Progress has been made in Ireland in the area of diagnosis. The Irish Disability Act requires all children under the age of five to receive a full assessment of their needs no later than six months following a referral. The American Academy of Paediatrics now recommends mandatory autism screening for all children between 18 and 24 months old.

There is compelling evidence that early diagnosis and access to early intervention services can result in significant improvements and better long-term prognosis. However, the statutory rights to assessment do not extend to automatic access to intervention. In Ireland, access to early intervention services may vary based on geographical location. At the first International Autism Conference in January, Health Minister James Reilly pledged €2m in additional funding for early detection and treatment services over the next two years.

It is of vital importance that we consider the empirical and scientific evidence when it comes to choosing an intervention. A considerable body of research over the past 20 years has suggested that children with autism can benefit significantly from early intensive behavioural intervention (EIBI).

It has shown if EIBI is implemented early (at the point of diagnosis) and intensively, some children will show significant increase in cognitive and language abilities, such that integration into a mainstream classroom is possible. Even if integration into a mainstream classroom is not possible, significant improvements are seen in all skills domains. Funding should be allocated to greater access to early intervention services that include EIBI.

Real progress has been made in our understanding of ASD but there is much still to do. ASD is a lifelong condition and therefore presents a significant public health challenge. We also need to address the growing issue of adults with autism specifically around continuing education, employment and community integration.

As in the US, we require an urgent national autism strategy. How many people in Ireland have autism? What are the risk factors? What are the best treatments or services? What policies and guidelines should be put in place for future planning? Greater investment in research is required to answer these and other important questions.

Dr Reilly also pledged to make autism an EU priority during the Irish presidency in 2013. As a whole, Europe faces many similar challenges in relation to autism. Research is urgently required to inform policy makers in the areas of service design and appropriate intervention. No consensus exists on how to screen, diagnose, provide clinical care or educate people with ASD. These are just some of the challenges that lie ahead.

* Dr Geraldine Leader is director of the Irish Centre for Autism and Neurodevelopmental Research at NUI Galway. Today is World Autism Awareness Day.

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