Research by the National Autistic Society recently revealed that just 16% of autistic people are in full time work, a percentage which hasn't changed since 2007. This is the end product of living in a society where autistic people are let down at every stage in life. As a politician with a particular interest in autism, and a parent of an autistic child, we have come together to set out a simple plan of ideas which could make life better for autistic people (One in 100 people according to the National Autistic Society) as well as those who educate and care for them.
Early diagnosis and intervention enables small changes to be made before behaviours become so ingrained that they are almost impossible to change. Waiting times for diagnosis for autism and child mental health remain a postcode lottery. In some cases it can be up to a year before children are seen even for an initial referral appointment, but the waiting time for diagnosis is often much longer. One nine-year-old boy wrote a letter saying "When I wake up there's this horrible feeling down inside me... I could just kill myself and I wouldn't have to face today". Despite the fact that paediatricians believed this boy to be on the autism spectrum, he had been waiting two years for a proper diagnosis. What would society say if we made people wait two years to be treated for a broken leg?
At school, parents who successfully get their children assessed as having special needs should get the help they need. However, many autistic children do not, because their parents do not understand how the system works or are not sufficiently articulate to challenge their local education authority. Nationally, 86% of Special Needs Tribunal cases are won by parents, which results in millions of pounds of tax-payers money being wasted on legal fees. It is a particular injustice that only the more articulate, sharp-elbowed middle class parents are likely to appeal their child's case in the first place.
Parents may also not know how best to deal with their autistic child, which can be draining at the best of times and may involve using different techniques to those you will find in the multitude of "how to be a good parent" books. Something needs to change to ensure that parents are routinely supported and equipped with strategies to cope with bringing up an autistic child.
At school things are not made easier. According to a survey carried out by the charity "Ambitious about autism", 40% of parents reported that their son or daughter had been informally and illegally excluded in the last 12 months and 20% had been excluded formally. This is evidence that more must be done to support autistic children (and others with special educational needs) to ensure that the support they get is not just focused on the 3 Rs but also on learning behaviours which others acquire naturally as they get older.
For employees in customer service/front desk jobs such as doctor's surgeries there is also a need to provide training on autism awareness. That way, rather than rolling their eyes or not knowing what to do in order to cope with an autistic child who is having a meltdown they can learn strategies and techniques to manage these situations calmly and sensitively. Maybe just as women who are expecting babies wear "Baby on Board" badges, should parents with autistic children be given some form of simple card to explain the challenges they are dealing so as to inform customer service staff of the need to be a bit more patient and tolerant? Some parents may not want this but others will see this as a way of reducing their stress levels during these experiences. Some countries have gone further than the UK in treating autism as one would a physical disability, for example by providing a disabled badge for parking your car.
Transitions to adulthood are a vital area where much more needs to be done. There is very little information on whether children find it easier to work in certain professions (for example ones where routine and structure is required). Only by learning more about how autistic children do later in life can we make sure that their education is sufficiently tailored to maximise the chances of them entering the workplace successfully.
Only a combination of more resources, more dedication, more support and more understanding will help ensure that every autistic child lives a life worth living.
Norman Lamb is the Lib Dem MP for North Norfolk and a former health minister
Chris Key is a campaigner on mental health and autism. His eldest daughter was diagnosed with high-functioning autism this yearSuggest a correction