An Open Letter To The Guardian’s Editor

Executive summary:  The Guardian persistently presents a medicalised pathology view of Autism which is inconsistent with the concept of the Human Rights of Autistic people. This is giving voice to the powerful, and silencing the powerless.  I do not think you will be able to find any arguments in favour of this approach which do not have uncomfortable resonance with the historical (and ongoing) harm done to women and  feminism through misguided ostensibly medical- or science-based arguments. I want The Guardian to stop amplifying the voices of those who are harming my community, and amplifying our voices instead. I’m happy to help! Lots of offers and options in the text below. Read on for details.

Dear Ms. Viner,

As a long-time reader of the Guardian, I see the Guardian as being an organisation that, as your ‘about us’ page says, gives “…a voice to the powerless” but which seems to have a massive blind spot when the powerless are the communities of the disabled and the neurodivergent. I am Autistic, so I will focus my comments on my own community, but I believe that much of what I say generalises across the bulk of the communities deemed by the Equality Act to be disabled.

Let me remind you that in the relatively brief history of modern medicine and psychology/psychiatry the institutions and practitioners of these disciplines have a long history of using their positions of respect and authority to speak out in favour of a deprivation of the rights of many communities. For example, think of the many examples of medicine insisting that limitations be placed on the work and pursuit of women in the name of protecting them. If you have not recently seen the iconic picture of Katherine Switzer being grappled on the course of the Boston Marathon in 1967, perhaps you should refresh your memory. As I trust you know, women were not permitted to run the Boston Marathon until 1972 because doctors thought they were not physically capable of running the distance. Many of my childhood memories are marked with stories about women fighting for the right to speak for themselves and to be allowed to shape the narrative about who they are and what they are capable of.

At that same time in the early 1970s, 1973 this time, being gay was removed from the list of psychological disorders. Of course the legacy of research into using behavior therapies to ‘correct’ the disorder of being gay lives on, not just in the ongoing battles over what is now mostly called ‘Reparative Therapy’ but also in the daily lives of a significant number of Autistic people who are subject to Applied Behavior Analysis.

All of the issues I describe here have a unifying theme: mainstream society chose to endorse the view of medicine and/or psychiatry rather than give voice to the powerless, whether those powerless be women, gay people, or Autistic people. 

I am writing to you because The Guardian has a persistent trend, and apparently policy, to violate some of the central tenets of the principles of Human Rights as they pertain to Autistic People. I challenge you to find a single justification for these practices and policies which does not have an exact parallel with the way in which medicine and psychology/psychiatry have long restricted, based on ‘scientific expertise,’ the lives of women.  In many arenas these limitations continue today. I would be surprised to learn that you did not feel some level of outrage and hurt whenever you encounter a story of some ‘expert’ explaining why it is that women shouldn’t be allowed to do something.

So imagine, please, how it feels to me as an Autistic person that The Guardian consistently reinforces the views of Autism espoused by non-Autistic scientists and doctors. Imagine how it feels that your go-to source for input into how to think or write about autism is the National Autistic Society, an organisation which both completely lacks Autistic voices in senior leadership and on their board, and who not only subscribes to the negative views of autism espoused by the medical community, but even has one of the loudest scientific voices, that of Simon Baron-Cohen on their advisory board. Which is problematic because the Autistic view of Dr. Baron-Cohen is that his ‘contributions’ are not just wrong, but have done great harm to our community. From an Autistic viewpoint I would state that I do not believe that Dr. Baron-Cohen has any knowledge whatsoever about autism. In showing deference to the National Autistic Society, and respect for Dr. Baron-Cohen, I will note that The Guardian’s shame is shared by Parliament which views the NAS as the primary source for information about the Autistic community. Would you be interested in running an article about the national shame we should feel that our national autism charity lacks autistic voice? Especially since this is in stark contrast to Ireland where As I Am is Autistic-founded and Autistic-led. Or perhaps an article about the national shame we should feel that our flagship Equality Act(2010) perpetuates negative views of neurodivergence and disability in favor of a medical deficit model? I would be happy to help your staff write such articles. I believe there is a strong legal case to be made that the Equality Act is itself discriminatory. Oh, the irony!

Given that one of the fundamental tenets of Disability and Autistic Rights movements is “nothing about us without us” there should be great shame in the influence the NAS has in conversations about autism, as well as in the decision of the non-Autistic leadership to include Dr. Baron-Cohen in the conversation. If The Guardian wishes to give “voice to the powerless” it is doing the exact opposite here. The Guardian is amplifying the voices and authority of those who define my community as a collection of ‘disordered’ people who are best explained in reference to the ways in which we are broken relative to ‘normal’ people. The expertise of Dr. Baron-Cohen, for example, is rooted in his analysis of how Autistic people are observably not the same as non-Autistic people. Yet his understanding of what those differences mean, since it is based on observation by non-Autistics and is seeking to find pathology,  and is not informed by Autistic lived experience, is substantially flawed. 

Every time The Guardian uses the language of its stylesheet, and describes autism as a ‘condition’ (it was ‘disorder’ not that long ago, although I see it has changed to ‘condition’ presumably in response to my raising this issue with the reader’s editor) it is perpetuating the view that autism is to be viewed through a lens of deficit relative to ‘normal’ aka non-Autistic, rather than using the language of the Neurodiversity Paradigm which holds that autism is a  naturally occurring, and valuable, difference in neurocognition. The language of the Neurodiversity Paradigm is the language of the Autistic Rights movement. By using, instead, the language of medicine and parents, The Guardian is amplifying the wrong voices.

Now, let us talk about the parents, since that issue frequently arises. When we speak about feminism do we take great care to ensure that the voices of the ‘fathers of daughters brigade’ (as Marina Hyde has described them) are heard? No, we do not. When we speak about LGBQT+ rights do we ensure that the voices of parents of LGBQT+ kids who think that their kids are broken are given priority (or even airing), in general I believe the answer is no. Of course, there are stories to be told about the lives of fathers of daughters, as there are stories to be told about the parents of LBGQT+ and Autistic kids. But those stories must be separate from any conversation about the Identity and Rights of Autistic people, just as they are about the Identity and Rights of LGBQT+ people.

Finally, the medical community would likely respond to everything that I have said by either arguing that I am not really Autistic, or they would say something trying to construct a concept of their being some set of Autistic people with more complex care needs than mine for whom I cannot speak. Melanie Yergeau, in their excellent book ‘Authoring Autism’ describes this approach as deeming Autistic people as either too Autistic to speak for Autistic people or themselves, or not Autistic enough. Yet the Autistic Commuity soundly rejects the concept of autism having different levels of severity. Of course there are people with very complex co-occurring conditions that require significant medical and therapeutic intervention, and we fully advocate for these people getting the care and support they need. But just as a woman suffering severe brain and bodily injuries in an accident still has the full human rights of a woman, and one expects that all her care would be delivered in a way consistent with feminism and human rights, we feel that the care of all Autistic people, including the Autistic people with the most profound sets of challenges must receive their support in a way which is respectful of their Autistic Identity. 

Into the mix of the medical attempt to deny Autistic Rights we often encounter (and this language is frequently used in The Guardian) the spectre of the “nonverbal” child. This is the language commonly used by the medical community and often used by the parents of Autistic kids. It is, however, considered a slur by the community of non-speaking Autistics. These are people who have often been dismissed as intellectually deficient, and have been at the receiving end of some of the worst abuses of behavior therapies. Parents will describe themselves as having taught their child how to communicate, when this is not at all the narrative told by their children. Non-speakers have written about how they in fact had use of language internally well before anyone figured out how to communicate with them, and some of them have described how it is that they perceive the challenge of not being able to find a pathway for the words they have in their heads to their voice system. Yet the medical community, and the media, persist in accepting the usage of the term “non-verbal.” (For example, this article from March of this year: https://www.theguardian.com/us-news/2024/mar/21/ryan-gainer-autistic-teen-police-killing-california).

I will also note that I have had multiple conversations with parents of higher-supports needs Autistic kids, and have noticed a trend that I can generally offer useful insights into their children’s world that are both useful to the parents, and not things that any of the professionals had been able to offer them. Which bolsters my belief that Autistic people like me know more about what even the Autistic people with the highest support needs require than do those who claim their expertise based on science and medicine. It’s a longer conversation, but I am also in the final stages of constructing a critique of the vast bulk of the science that is cited as evidence of anything about Autistic people. This critique will likely be occurring in a book collection of philosophy of autism due out this year or next. Suffice it to say that if medicine says that what it does is “evidence-based” and all of the evidence turns out to be fatally flawed, it isn’t a good look for medicine. 

Every time The Guardian describes autism as a disorder or condition, rather than a naturally different way of being human, it is depriving my community of the right to define who we are.

Every time The Guardian writes about autism and fails to make the voices of Autistic people central to the article, it is depriving my community of voice. 

Every time The Guardian allows a non-autistic person to contribute a thought piece espousing views of autism which are not aligned with the Autistic Community it is allowing an act of injustice. For a parent to write about the challenges of raising an Autistic child is of course fine, just as a father’s views on the challenges of raising a daughter is valuable. But just as that father is not permitted leeway to espouse misogynistic views about what womanhood is, non-Autistic parents must not be allowed to spread negative views of what it means to be Autistic.

      Finally, and this point broadly should apply across all of your disability coverage, please stop describing, and stop allowing scientists and doctors to describe, every therapy or treatment which makes disabled people more like non-disabled people as progress, or in terms making it sound line an unambiguous good. Unless, of course, there is a narrative about how the intervention was designed with close cooperation with the community who it is targetting, or at least is being welcomed by that community. While the non-Autistic parent of an Autistic child might think that their kid making more eye contact and stimming less is ‘progress’ to an Autistic person this is not progress, it is harm. Taking the words of science and medicine without checking with the actual communities of the disabled is analogous to allowing men to speak about things they have done for the benefit of women without women having been consulted. 

I would be happy to come in and give a talk to Guardian Staff about how modern Disability Rights conversations should be influencing how they think and write about neurodivergence and disability. I’m also happy to have a conversation about what sort of talk would be most useful and most likely to be well-received and effective. 

I would be happy to assist in an advisory role. I’m not job-hunting here, I don’t need to be paid, but I would love to help shape The Guardian into a leading voice for not just my community but for many communities like mine (the Guardian’s ADHD coverage is also pretty terrible, for example). 

You, and perhaps some of your staff, might find my TEDx talk enlightening. I’ve been told by a number of people that it has really changed their uderstanding of what it means to be Autistic. https://www.ted.com/talks/daniel_maskit_alien_superpowers?subtitle=en

I truly believe that there is simply a lack of clarity at The Guardian about how to think about my community, and I truly believe that the harm that is being done is unintentional and will be horrifying to you. I’m happy to help you do an even better job of this core part of the Guardian’s mission.