Response to the CDC report into the prevalence of Autism.

(A version of this post was originally published on the Autism Daily Newscast website on 31st March 2014.

On 27th March, the Center for Disease Control published it’s latest data on the prevalence of autism amongst children in the USA. The headline statistic from a complex data gathering exercise was this: In 2008 (when the preceding data set was collated) 1 in 88 children in the USA was autistic. In the current data set (collected in 2010) the prevalence has increased to 1 in 68.

And so the Autism community, already bruised and divided by bitter debates around vaccination, Curism, and behavioural therapy braces itself for the inevitable hysteria about the “autism epidemic”.

Let’s stop for a minute and look at the data. The study, although scientifically rigorous, has significant limitations. The authors of the report are open and honest about these. The data was collected in 2010, four years ago, in a mere 11 locations accross the whole of the USA. Only data from 8 year old children is included – and as such it is unlikely to represent the actual gender and ethnicity mix for the USA population. In some of the 11 study locations, researchers were not given access to educational data, only to health service data. The study gives statistics, but no explanations of how these came to be.

Leaving the limitations aside, The main question arising from the study is this:

WHY were there more autistic children in 2010 than there were in 2008?

This is the very question usually gives rise to the fearful answers about “epidemics”, and the increased prevalence of autism being viewed as bad news. I see it differently, I think it could very good news indeed, and a sign that all the hard work of the autism awareness movement is finally bearing fruit:

The increase could be a result of increased autism awareness amongst health and education services, a better understanding of what autism “looks” like. As they embrace the notion that autism does not have to mean a non verbal child with intellectual limitations, hand flapping and no social interest, professionals become more aware of those children with a less “classic” presentation of autism. Those individuals who administer and interpret the ASD screening tests may as a result become more skilled at observing and scoring the more subtle signs of autism. Basically, Instead of there being “more” autistic children per se, it may simply be that we (society, parents, educators, health providers) are getting better at recognising them. This is supported by the statistics in the CDC study which identify that autistic children with non-classic presentation and no intellectual disability make up the bulk of the increased diagnosis rates:

“Over the last decade, the most notable change in characteristics of children identified with ASD…..is the growing number who have average or above average intellectual ability ……a large proportion of the observed ASD prevalence increase can be attributed to children with average or above average intellectual ability…”

The increase could also be a result of Autism carrying less of a stigma than in previous times. More value may now be placed by parents in obtaining an autism diagnosis for their child. There may be an increased perception that it will lead to educational, and social advantages for the child, a general feeling that there is support to be gained for the family by getting a diagnosis. If more families than in previous times are pursuing the diagnosis, this in itself would inflate the figures – if we screen 1000 children, we will find more cases of ASD than if we screen 100 children.

The CDC study provides no data on awareness levels amongst professionals and families, and no data on the number of children actually screened for autism in 2010 as opposed to previous years, but I think this data would help to give a far clearer view of the reasons for the increase in prevalence.

In reality though, numbers are just numbers. What difference does this academic study make to our lives?
The answer is: very little. It changes nothing for me, it changes nothing for my daughter. She is still autistic, I am still her mother, I continue to love her, we continue to fight our daily battles.
For the autism community as a whole, our priorities and concerns remain exactly the same as they were before the CDC published it’s data. And this is where the CDC prevalence rates really could prove to be bad news for autistic people. There is a real danger that April, the month where the Autism awareness and acceptance agenda should be at it’s strongest, the voice of the autism community will be drowned out by negative, scaremongering headlines bearing the “bad news” about autism rates and the “epidemic”. There is a danger that vital attention will be diverted from the issues that we feel to be crucially important. Let’s remind ourselves what these are:

~ We need effective screening and intervention for autistic children at the early years level.

~ We need a national, well considered long-term strategy for the provision of care and accommodation for those autistic people who will need lifelong support.

~ We need to address the affordability of therapies and interventions.

~ We need better education provision and employment prospects for autistic people, to allow them every chance to achieve to their full potential.

~ We need more consideration for the safety of autistic children and adults who wander, and better first responder training for emergencey services.

~ We need rational discussion around the the taboo subject of families who live with challenging and/or violent behaviour. Families and individuals need a robust support net, access to respite care, a team who are skilled in assessing the signs of abuse and able to manage this risk.

~ We need to consider those autistic adults, not addressed at all by the current study, who grew up undiagnosed, unsupported, who may now live with depression, anxiety and self esteem issues that make their lives difficult.

~ We must ensure that there is MEANINGFUL consulation with autistic people at every level of service and policy design. These are their lives, their services, their policies.

~ We need genuine acceptance for autistic people within health services, within education and within society.

The CDC statistics offer us no guidance whatsoever on these vital issues. The reaction to the statistics by society and the media may well service to distract funding and attention from the priorities of the autism community.

At the end of the day, the figures tell us only one thing with any certainty: that autistic children exist. We know that These children will grow into autistic adults, each with an individual set of strengths, needs and talents. For their sake, we need to limit the negative, hysteria surrounding the CDC statistics, and instead use these numbers to open constructive debates that will lead to positive, concrete changes in the lives of all autistic people.

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