World Autism Awareness Day (WAAD) isn’t far off, and always manages to attract a fair amount of both attention and controversy. One of the most controversial aspects of the day (for the Autism community at least) is the way that Autism Speaks has managed to somewhat hijack the day with its “Light It Up Blue” campaign. If all the campaign did was raise awareness of autism – without importing a particular view about the nature or value of autism as a condition – I don’t believe it would attract the same controversy; but the fact is that the campaign is strongly and clearly tied back to the specific charity and its views about autism, whereby the awareness being raised is about the “crisis” of autism and the need for a cure.
Here in New Zealand, there is awareness of the “Light It Up Blue” campaign, but the main national autism charity – Autism New Zealand – uses a different campaign and message for WAAD. It’s called “Multicoloured Mayhem Day”, and comes with a much more positive message of highlighting the differences and abilities of autistic people. The campaign is encouraged in schools, where children dress in colourful clothing; happily celebrating difference rather than mournfully reflecting on the existence of autism.
There was a time that I found the Multicoloured Mayhem Day to be quite deceitful and even damaging; I felt that it unhelpfully – and too simplistically – highlighted the “positive” (or at least, “non-negative”) aspects of autism, without addressing and raising awareness about the very harsh realities faced by autistic people. I felt that the message was directed at and about the “high functioning,” to the detriment of the lower (as my son very much was at the time). This is no longer my attitude towards Multicoloured Mayhem Day. On pondering the change in my attitude towards the day, I’ve had further related thoughts about awareness raising and how (and whether) awareness arising efforts should change to reflect public opinion.
In part my personal attitude towards raising awareness about autism, has changed alongside my son’s abilities; the message of hope and encouraging people to see autistics like my son as capable and specially talented (if given the chance to shine), now sits closer to my concerns and hopes. Having said that, I still think the needs of the most severely affected individuals deserve the most resources and attention in a world of limited and competing resources, and I’m still very aware that my son will face serious challenges at the end of his school days (employment, self-care in independence, driving, etc). So how does an “awareness day” deal with these seemingly conflicting messages of light hope and dark hardship?
I think the answer for a condition like autism – with the word “spectrum” built right into the description – is obvious: First and foremost highlight the diverse realities and challenges of the condition. Indeed, this understanding of the huge diversity in abilities and outlooks for autistic people, is something very lacking in the public. I’d love to see more awareness going into explaining what autism actually is, how it affects autistics (and their families), and how wide the spectrum is. That is to say, the role of informing. This approach can obviously be seen though as diluting the message; when you’re trying to make people pay attention to and care about autism, it can be hard when you’re “instead” focusing on just describing the condition, this will be particularly true if you see the point of your organisation as one of helping the worst affected, or alternately as giving a helping hand to those who just need that extra support and understanding.
I would have thought the “informing” role was prior and more important than the “and this is how you should all feel about the condition” bit (“informing” the public, rather than focused on “forming” public opinion), but autism community politics is legendary, and those politics obviously show through on days like WAAD.
I think there is another vital consideration which came up already in what I’ve mentioned; the importance of responding to existing public opinion, and it is because of this particular consideration that I am coming down more so on the side of Multicoloured Mayhem (right now, and if forced to choose between the two campaigns). Lately the news about autism coming through the media is a heavily negative one, with references to crime, school shooting, hackers, and autistic children seriously hurting their siblings. Add that to the recent discussions about euthanizing disabled children (and the somewhat frightening public response to the issue), and it seems a good time to be highlighting the positive and “difference” aspects of autism, over the more negative / “lets wipe out autism” (to put it coarsely) aspects.
It’s easy to argue against this conclusion. For one, it can be pointed out that there are also many overly and distortingly optimistic stories out there about autism right now too; ones over-stating autistic talents for instance, alongside TV shows and movies that romanticise autism. A second argument against the idea is that if public awareness campaigns are always in “response” mode – reacting to current public sentiments – then they will have to change each year (or every few years if you prefer). This constant changing creates confusion in the public’s mind, and lessens the impact generally of the approach taken any given year. Always shifting back and forth; the “truth” as such, lying somewhere unspoken in-between and on both sides at the same time.
And so ultimately I return to my previous point; that it would be rather preferable to have these awareness days focused on raising awareness of autism and its huge variations. Thus combating at a more basic level the public misunderstandings and lack of knowledge about the condition itself. In doing so, in-roads would surely be made on also combating whatever the public perceptions towards autism are at the time – whether overly negative or overly positive, understanding the diversity within the spectrum assists an understanding that both messages are (arguably) always accurate.
Autism is a spectrum, of conditions and challenges and realities. Certain characteristics and issues bring together the grouping of autism, by definition; but just like the rest of humanity, people within the autism spectrum are still individuals. Individuals that can and do shift up and down the severity of the spectrum too. Autism is complicated; attempts to overly simplify the truths of autism – in my opinion – does everyone a disservice in the long run.