Is autism on the rise?
The latest figures from the Centres for Disease Control and Prevention (CDC) point to one in 88 children in the U.S having an Autism spectrum disorder, marking a clear increase from 2006 when the rate was one in 110. Is this condition spreading or are we simply getting better at diagnosing it?
As the autistic community marks the sixth annual World Autism Awareness Day on 2 April, I speak with the UK's National Autistic Society about their tireless campaign for the rights of those affected, current research and some Rainman-inspired myths in need of urgent dispelling.
Founded in 1962 by a group of parents frustrated at the lack of understanding and help available for them and their autistic children, the NAS now has over 19,000 members and over 100 branches supporting 100,000 people each year.
Q In the aftermath of the Connecticut school shooting, it was suggested by some that the autistic killer's tragic actions were linked to his much reported inability to connect with others.
A Suggesting that people with autism are predisposed to committing violent crimes is unjustly serving to fuel discrimination and anger against people with the condition. It is important to highlight that the vast majority of individuals with the condition are law abiding. Indeed, in many cases, individuals with autism are unusually concerned to keep to the letter of the law, due to the nature of the disability.
People with autism may also be more vulnerable to criminal acts against them because of their social difficulties. In fact, one third of adults with autism who responded to a recent NAS survey said they have been a victim of crime previously.
Q It is a common misconception that people with autism are incapable of feeling emotions of love and do not even connect with their parents on an emotional level, is there any truth in it?
A This is simply not true... people with autism generally face difficulty in social communication, social interaction and social imagination (the triad of impairments)... they often have difficulty recognizing or understanding other people's emotions and expressing their own, which can make it more difficult for them to fit in socially and form friendships. It has incorrectly been perceived as them not caring... those with the condition can and do care deeply about others
Q Like so many others I am curious to learn about the much reported rise in the number of autisic/Asperger syndrome children and the reasons for it.
A A recent study conducted by the NHS and the University of Leicester showed that the prevalence of autism is roughly the same for adults as it is for children, at around 1% of the population. This shows that autism has been with us for a long time, and that a large group of adults have been consistently overlooked by services and society... some people have lived with autism for their entire life without ever getting a formal diagnosis. Often this is simply because autism wasn't widely known or understood when they were growing up
Q Early diagnosis seems to be crucial in helping children with the condition, how important is this to the children and their families?
A getting a diagnosis is a critical milestone for people with autism and their families, providing an explanation for years of feeling 'different' or helping a parent to understand their child better. Diagnosis can also offer a gateway to identifying appropriate support and without it people may find it difficult to access the help they need.
An early diagnosis for autism can mean that the right support is put in place to meet a child's needs from an early age and help parents understand what their child needs. Services like the NAS' Early Bird programme help parents learn about the condition, find ways they can develop their child's interaction and communication as well as how to understand their behaviors and how to use structure, so they can pre-empt and cope with problem behaviors. With the right support from an early age, children with autism can reach their full potential.
Q There is very little understanding of the wide spectrum of the condition; not all autistic people behave like Rainman.
Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support. Some people have low-functioning autism while others are high-functioning and others are diagnosed with Asperger syndrome.
Asperger syndrome is part of the spectrum. Like people with high or low functioning autism, those with Asperger syndrome experience difficulty in social communication, interaction and imagination... they are likely to be of average or above average intelligence, much like those with high-functioning autism. The main difference between high-functioning autism and Asperger syndrome is thought to be in language development: people with Asperger syndrome, typically, will not have had delayed language development when younger.
Q How does your work touch the lives of those affected by the condition?
We are the UK's leading charity for people affected by autism (including Asperger syndrome)... over 500,000 people in the UK have autism and If you include their families, autism touches the lives of over two million people every day. Despite this, autism is still relatively unknown and misunderstood, meaning many people do not receive the level of help, support and understanding they need. The NAS is working to improve understanding of autism to ensure everyone living with the condition gets the support they need.
The NAS has seven autism specific schools which support over 500 children and young people across the UK between the ages of four and 25. The charity also provides 24 hour residential care to meet individual support needs as well as day, outreach and supported living services to give others the confidence and skills to live successfully in their own homes and enjoy activities that others take for granted.
The NAS also provides a wide range of information and advice for families, carers, relatives and professionals working in the autism field including: an online community forum, an online directory of autism services across the UK (Autism Services Directory), a telephone support service for parents (Parent to Parent) and the Autism Helpline. We also have specialist services to support families and individuals to access their rights and entitlements across education, welfare rights and community care.
Q What myths surrounding autism would you most like to dispel?
One of the most misleading myths about autism is that it is caused by poor parenting or parenting behavior, a misconception that can be very distressing for parents who dedicate their lives, sacrificing everything to support their loved ones.
Another common myth is that people with autism don't have the skills to hold down a job and don't want to work. People with autism want to work and with the right support and understanding can make excellent employees, often demonstrating above average levels of concentration, reliability and accuracy. However, they are often disadvantaged when it comes to getting and keeping a job because of difficulties with social skills and a lack of understanding about the condition among the public. As a result, only 15% of people with the condition are currently in employment.
This links with another common assumption, that all people with autism have a special ability or talent, a misconception propagated by the film Rainman. Current thinking holds that at most one or to in 200 individuals with autism might have an extraordinary talent - these people are known as autistic savants.
A final and very unhelpful misconception surrounding autism is that it's a condition that only affects children. In fact, it is a lifelong developmental condition: children with Aatism become adults with autism.
Q. If you were to meet the prime minister tomorrow, what would your message to him be?
We would encourage him to make his fellow politicians more aware of autism and the challenges faced by people with the condition... In particular, it is vital that MPs continue the momentum started by the Autism Act 2009, a milestone for people with autism in England, and ensure the promises they made in passing the Act are fulfilled.
Q. Are children diagnosed today with these conditions likely to be better prepared for adult life than children diagnosed fifty years ago?
When the NAS was formed 51 years ago, there was little understanding and help available for people with autism and their families. Although people with autism still face enormous challenges and many misconceptions about the condition persist, there have been real and significant changes in the lives of people with autism and their families over the past 50 years. The NAS is proud of the difference that we and the wider autism community have made to the lives of people affected by the condition... We continue to work for the rights of people with autism and are currently looking into the specific needs of older people with the condition, a sector that has often been ignored in the past.
People with autism still face significant and diverse barriers... many struggle with isolation... The pressures on many families are immense and all too often the huge potential of people with autism goes to waste... and yet, the developments over the past 50 years give us much hope for the future.