The Telegraph has recently reported on data from the Department of Education that 61,570 schoolchildren in state schools have been recorded as having an autism spectrum disorder making up almost 1% of the school population. It is reported that five years ago, the number of children classified as being autistic was 39,465 which accounted for 0.5% of the school population. The latest figures now means that one in every 125 children are autistic an increase from one in every 200 pupils in 2006.
More controversially the paper reports that some ‘experts’ claim that the rise in autism may be due to parents using the condition to get easier access to resources rather than there being a genuine increase in autism.
I’m not sure what evidence there is to support such claims but in my experience I do not see evidence of parents seeking a diagnosis of autism just to get resources for their children. Getting a diagnosis is not an easy process. As I have experienced with both of my children, it is a protracted affair that entails questionnaires, interviews and assessments and meetings with clinicians. It can take months, if not years, to get a diagnosis. It is not a process that I believe parents willingly put themselves through unless there is real concern and anguish over their child’s development. Getting a diagnosis is an emotional and difficult stage but nonetheless it helps families like mine to understand and help their children.
Furthermore, the notion that support is freely supplied once a parent has a diagnosis for their child is not accurate. In practice, a diagnosis does not necessarily mean that a parent can easily access resources particularly in times when budgets are tight and services under resourced.
As I have documented on this blog, a diagnosis is the start of a very long journey as a parent and family. From then on it is a continual fight to find and secure the right services, therapies or support. As I am experiencing, mainstream schools (certainly in my area) are poorly resourced to deal with autistic pupils with the result that some children like my daughter end up with further health problems and out of education. Even those that are fortunate to get a statement of SEN face the prospect of travelling huge distances to specialised schools such is the inadequate provision for those with autism and aspergers.
Any suggestion that parents like me are exploiting the system for the benefit of their children is unfair and sends out yet another negative message about people like me. Its too easy for people untouched by the realities of autism and aspergers to stand on the sidelines and make cutting remarks about what is causing the so-called rise in autism spectrum disorders. It’s too easy to assume that when a child doesn’t have an obvious physical impairment that there is no problem and then to blame parents.
Such claims are irresponsible because the language of blame filters through to the general public. They read this stuff and they start to think that perhaps the little girl down the road who has asperger syndrome doesn’t really have an autism spectrum disorder after all, that perhaps her mum has labelled her because she is one of those pushy parents that only wants such and such for her daughter. At worst they blame her parenting and even question her child’s condition to her face.
It sounds an unpleasant scenario doesn’t it but it is one that unfortunately is the reality for many people like me. It is an attitude that I have even come across in meetings with those professionals who have little understanding of the autism spectrum. Parents like me have not set out to manipulate autism or to deviate resources from those more needier. We are merely being good parents, recognising and responding to our children’s needs. People can hardly blame us for doing that; if anything people should applaud us for caring for our children and trying to do the best for them.