On the Saturday 19th October the Frontline Board met in the Little Venice restaurant to bid farewell and say thanks to Mary McEvoy for her long and distinguished service. For the past eleven years, Mary presented her views on several aspects of learning disability and these, I know, struck a cord with many primary caregivers. Her humorous style and inimitable contributions will be sadly missed. Mary was keen that someone would continue her style of ‘writing it as you see it’, and with a combination of encouragement and firm insistence, she has persuaded me to write a column.
Last year, after twenty-one years of working with people with learning disabilities, I moved to services for children with autistic spectrum disorders. It was a big change. I certainly miss the friends I made and families I got to know so well. As a long-time advocate of community-based and inclusive services, I was attracted to the developments that were taking place in the area of autism. Initially when I started, I was surprised by the considerable range of children who were diagnosed with autism, not to mention the large number of children who also had a significant learning disability. I quickly discovered that autism spectrum disorders are no longer considered to be a rare condition which affects 4 or 5 people in every 10,000, but are now regarded as a relatively common condition. Some recent estimates suggest that as many as 1 in every 100 people may be on the autistic spectrum. Nobody is sure why, over the past decade, there has been such a sudden increase in the incidence of autism. Some suggest that it may reflect a true rise in the incidence of the disorder, others believe that it is due to better diagnosis, though some point to a change in diagnostic criteria.
In the late ’70s and early ’80s, Laura Wing and her colleagues reconstructed our understanding of autism and introduced the concept of a spectrum disorder. Most diagnostic criteria today view autism as an impairment in social interaction, communication, imagination and behaviour. The majority of people with a significant intellectual disability have impairments in these areas and accordingly, it is not surprising that many people with an intellectual disability are considered by some diagnosticians to be on the autistic spectrum. In the United States, e.g. in California where there has been a very sharp rise in the incidence of autism, observers have noted that the increase in the number of people registered on the autism database has been matched by a corresponding decrease in the intellectual disability database. Such findings lead one to wonder whether the apparent increase in autism might to some extent be explained by a change in terminology. As a professional working in the area, I wonder how these recent changes will affect the lives of those who are diagnosed with an autism spectrum disorder. Will they be better off?
Some parents I have met believe that autism is ‘curable’ and for this reason a diagnosis of autism is considered preferable for their child to one of learning disability, which is considered ‘incurable’. Certainly, there are a few small-scale studies that lend support to this belief of apparent cure, though typically, as far as I know, these studies have not included children with significant intellectual disabilities. Most parents, however, realise that autism is not curable—but like other parents they want the best service they can get for their child. Many parents have incurred great personal expense in trying to obtain the service or intervention of choice. Some have funded services themselves, privately, while others have sought state support through lobbying or court actions. Unfortunately, even when they have succeeded in a court action, the services sought have not always materialized, owing to the lack of appropriate personnel. This has left many parents feeling frustrated, angry or despondent. For its part, the state has been left reeling from the sudden demand for quality, effective and accountable services. There has been an increase in resources, but there is still a long way to go. Many intellectual disability services, which in the past supported several people now classified as autistic, have chosen not to become involved. Indeed, it appears to me that in some parts of the country, an early diagnosis of autism can later serve as a barrier to those who seek support from intellectual disability services. Typically these services argue that they don’t have the funds or expertise to support people with a dual diagnosis. Considering that up to half of those with a significant intellectual disability might be regarded as having autism, their stance is perplexing.
The change in terminology has concurred with a shift in emphasis from charity to rights, higher expectations and more intensive interventions. Hopefully these changes will improve the quality of life of people with significant intellectual disabilities and autism. However, the very intensity of some interventions needs careful long-term evaluation. These interventions will no doubt lead to changes in behaviours, though I hope they do not rob children with intellectual disabilities and autism of their uniqueness and their human spirit—qualities which are not easy to evaluate, but which make us who we.