Some thoughts for #WAAD

by Ingrid Robeyns on April 2, 2018

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.



Doug K 04.02.18 at 6:40 pm

thank you Ingrid..

“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.”

my son is coping at school now, junior year at high school. But this is just exactly it, he is shattered by the end of the day. Coping with school consumes all his energy. His teachers tell me “excellent command of language, insightful, a pleasure to have in class discussions” but he has no social life or hobbies, nothing left over for those..
He’s functioning, well according to grades, but this is certainly not his best life. He seems to have a gift for coding, but doesn’t want to work in IT as he sees how it has been flooded with ambitious sociopaths and wants no part of that. I’m trying to convince him we need people who aren’t ambitious sociopaths in IT.. and if coding is easy for him, then it may spare him some energy.. the struggle continues.


Matt 04.03.18 at 1:21 am

Thanks for this, Ingrid – it’s very interesting stuff. I particularly enjoyed learning about the disability issue, and, though it’s unfortunate, the debate about subsidies and pension credit for hiring disabled people – I can see real trade-offs in the area, but of course also lots of ways where people might just be trying to save money or avoid providing assistance to people who need it to take part in society.


sanbikinoraion 04.03.18 at 1:12 pm

As someone in IT, I would not describe my experience with others as “ambitious sociopaths” – in fact, programming is one of the few well-paying disciplines, IMO, where it’s possible to earn a very good living without having to climb the greasy pole. Therefore there are plenty of people there who are not “ambitious” in the “get into management and tell everyone what to do” sense. Plus, technically competent people are actually likely to be recognized by management and protected and developed. If your son wants to talk to someone who’s been in programming for about 15 years about what it’s like I’m happy to talk! Find me through the link above.

(IMO programming is a great career choice and it would be a shame if he were to decide against it purely for the reason given!)


JoB 04.03.18 at 1:32 pm

Thanks, Ingrid.

It is high time we get rid of that high- vs. low-functioning talk. I have had all the privileges one can dream of as a white Western male and I don’t speak for anybody but myself. But if I’m barred from using the good fortune I had (mainly in meeting people taking me the way I am) to try to make a difference for autistic people who are not so lucky, that would not be an over-all improvement in the world.

Without wanting to one-up you I think the most inclusive way to talk about autism is to let autistic people speak including about how being autistic can be both crippling and a gift. It is by the way, imho, not the case that the crippling part is just a matter of how the world is organized. An issue like insomnia (see: can difficultly be framed as a mere matter of social construction.

And disability studies should definitely be renamed diversity studies. The root cause of all this confusion is the conceptual muddle between medical terms and sociological terms. In this sense, “condition” is not better. I don’t have a condition. I am autistic. I always was. I always will be. It would be better if we would just bite the bullet and stop adding words to autism & autistic. Then it will be much clearer what other good and bad things are related to it.


philip 04.03.18 at 6:08 pm

Thank you Ingrid,

Yes, I think the points around functioning and disability are very important. Here is a link to an interview, I heard the other week, with Paddy Considine talking about his new film and his Asperger’s. The interview starts at about 19 minutes and he discusses his autism from about 29 minutes. He talks about when he was struggling to function before his diagnosis of autism then Irlen syndrome, which all kind of relates to the themes you were talking about. Also, some stuff about Paul newman and media representations of autism. The interviewer mentions Chris Packham who is a wildlife presenter in the UK. He recently did a TV documentary discussing some general issues around autism as well as his own biography – difficulties he has had and how he has been lucky to find roles where his autistic traits can be a benefit although he still struggles.


Anarcissie 04.03.18 at 6:22 pm

‘Another kind of mind there.’ I would certainly like to hear from people with autism (or see or hear artistic works by them), but I don’t want to plunge into Facebook, Twitter, or other nefarious services to do it. I’d like to suggest setting up a web site curating reviews and summaries of such blogs and articles, or using less harmful social media such as Diaspora.

I made my living as a computer programmer for many years and found it difficult but possible to stay out of the way of the ‘ambitious sociopaths’ mentioned above, much of the time. However, I have been hesitant to recommend the craft to others as moneywork because the high value accorded it does attract the attentions of the sociopathic elements we choose to lead our collective political and economic lives, with often depressing results. One would want to find a niche.


The Transparent Hand 04.05.18 at 2:55 am


Thank you for this thoughtful post. I’m reminded of a quote (I know not by whom) that I saw recently: “if you’ve met one autistic person, you’ve met one autistic person.” With that in mind, I speak as one autist (or autistic person, if you like). I would resist any description of autists as belonging to a “community”, just because the very term invites one to imagine a cohesion that may not really exist per se. Then again, maybe there’s no better term to describe a number of people nominally affiliated by way of the fact that they are neuro-atypical (or maybe neurodivergent?). In any event, I’d like to see more of us act collectively, or at least in concert, and claim our share in the various conversations taking place.

I agree with much of what JoB writes in reply #4. I think “condition” is misleading, and I think “disorder” is worse. A clear eyed look at autism would be helpful, not as something to be corrected (a condition) or eliminated (a disorder), but a legitimate – and not necessarily uniform – variety of differences.


JanieM 04.06.18 at 12:24 am

Another thank you to Ingrid. The post helped me think about a number of things in new ways.

Also to commenter JoB, at whose Twitter link I found more links and lots of writings, which I will explore over time. But the paragraph below just bowled me over, so I wanted to quote it and say thanks for putting into focus a whole bunch of things that have been bothering me for a long time:

This is the civilized version because there is no merit – or only a capitalist, a communist or a religious merit – in the answer that people just have to “fight for what’s right“. The problem precisely lies in there being already too much fighting for both right and wrong. Accepting the duty to fight to get your point across is capitulating to the capitalist society; a society that reduces all individual merit to a talent for fighting. No, people do not have to do anything at all. They most certainly do not have to be fighters when they are not; not anymore than they have to be straight if they are just gay. That, my dear friends, is self-determination.

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