Some thoughts for #WAAD

April 2nd is World Autism Awareness Day, and I’m trying generally to post something on this topic around this time of the year. (NB: I’ll use “autistic people” and “people with autism” interchangeably, since members of the autistic community are divided on which of these terms they prefer – and in my view, both sides have good arguments to prefer it they way they prefer.)

First, we’ve been talking here in the past about the importance of listening to the voices of people with autism (something that Pete Warmby argues is lacking in the Autism Awareness week). There is a very simple and accessible way of doing that – and that is via Twitter – just type “#actuallyautistic” in the search field. The tweets with the hashtag #actuallyautistic will sometimes include links to blogs on which much lengthier pieces can be read.

In the past year, I have spent many nights reading the tweets of #actuallyautistic people, and learnt a lot from the tweets and the blogpost they link to (and now regret I didn’t keep track of the blogposts I read!). For example, the often used distinction between ‘high functioning’ and ‘low functioning’ autistics is one that many #actuallyautistic people reject. A non-verbal autistic person may, because she is not verbal, be taken to be low functioning, whereas her blog posts are ample proof of a sharp mind. Someone who comes across as ‘doing well’ in the workplace may be assumed to be ‘high-functioning’, but crashes when coming home from having had to put on masks and adapting to a neurotypical world the entire day.

Another thing I learnt, is that the politics of autism are not the same in all countries. Clearly, some issues, such as the voices of autistic people not having sufficient space in autism advocacy groups or in (agenda-setting of) research, seem to be issues of debate and contestation in many countries. But some of the most heated (often aggressive) debates, such the antivaxxers abusing autism advocacy for their evil causes, are (thank goodness!) absent in the country in which I live (the Netherlands) – and I also don’t know of any autism-parenting group who propagates methods that fall into the category “I will cure my child from autism and get my child back”. I am on a closed FB group of autism parents in the Netherlands and speak parents of kids with autism in many other venues, and while some parents struggle to accept that their experience of being a parent is not what they had hoped for, the vast majority accepts their child as it is and does their best to make their families autism-inclusive. And, luckily, I haven’t come across anyone who believes that vaccines caused autism, or that there are ‘cures’ for autism.

Another difference between countries may well be what happens in Autism Awareness Week: according to Elizabeth Washington, “The subtype of autism that is acknowledged April 2nd is quirky, brilliant, and content, but that isn’t the reality of autism for a large portion of the autism spectrum”. I can only say: in my little country, WAAD is used to amplify the voices of the autistic community, to advocate for specific policy changes, and doesn’t only pay attention to the brilliant autistics. In sum, one shouldn’t generalise from the situation in the US to believe that this is how the ‘politics of autism’ looks like in all countries.

Another thing I learnt from those many evenings and nights reading tweet-discussions and blogposts, is that when reading those tweets, one should always keep firmly in mind that no autistic person can speak on behalf of all autistic persons. Being the medium that it is, twitter is full with short claims and hence generalisations that would probably be more nuanced in other spaces. And Twitter is not research: one should be careful to generalise from whatever one reads. The fact that some subgroup of group X speaks on behalf of all members of X, is a well-known problem that other oppressed/disadvantaged groups have had throughout history. A well-known example is that of white middle-class feminist women who spoke on behalf of all, but ignored the privilege of their whiteness, their class position, or their able-bodiedness. Similar tensions can be seen in debates in which some autistics make statements that suggest (or can reasonably be interpreted as) being a claim on behalf of all autistic persons.

To illustrate, some autism advocates applaud the view that autism is not a disability; they argue that autism should merely be seen as a form of difference (on a par with other forms of difference, like sexual difference). Talking of a disability is, according to those voices, too negative and therefore harmful of autistic persons. On British television, Channel 4 aired an inspiring portrait of a group of autistic gardeners to make that point, but as James Cusack and Sara Luterman point out, many people with autism are disabled, and being talented and being disabled are not mutually exclusive. But I’ve also spoken to adults with autism who find the statement that they are disabled offensive. I’ve ended up believing that the most inclusive way to describe autism is as a condition which for many autistic persons is disabling, but not for all – and in a more autifriendly world, it would be less disabling than in this world (which is also the case for other forms of difference that we now call a ‘disability’).

Let’s use WAAD to listen to the wide variety of voices of people with autism and advocate for a world in which people with autism are fully included and given more chances. There is still so much to fight for, and not all development are in the right direction. For example, in my country, the government has just decided that disabled workers (which will include some people with autism) whose employers receive wage subsidies, will no longer be building up pension rights (we do have a universal state pension, which is around the level of the poverty-line, which everyone receives who has been in the Netherlands between age 15 and 67). The reason? To make it easier for employers to hire people with disabilities who have low earning capacities; employers will no longer have to deal with that bureaucracy – how I understand the proposed legal reform, the disabled workers will now have to apply to the local government in order to receive the wage subsidy. Again, no sense of any acknowledgement that this may be too stressful or too complicated for some of those disabled workers; and why would they have to do paperwork in order to receive part of their wage, while other employees who are paid by money that ultimately comes from the government (all academics, for example!) need not do so? We are making life for disabled fellow citizens harder. It is a tendency we see in other countries too, and which is “justified” with the ideology that people need to exercise more individual responsibility and need to be “incentivised” to work more (two hugely problematic notions in the context of disabled fellow citizens). I could tell you similar stories about the lack of sufficient high-quality education for children with autism; in fact, the system has given up on thousands of children that do not fit our homogenising school system.

Let autistics and their allies unite to fight for those important political causes; there is still a long way to go before autistic children and adults have equal chances for flourishing in life, and be treated with equal respect.