Resources

This page contains links to some of my favourite resources about autism. Based on my personal experiences, I believe that the best information about autism comes from Autistic people. For parents of Autistic kids, my top piece of advice is this: engage with the Autistic community! I believe that you should assume that everything you will hear from doctors, schools, scientists, large organisations not run by Autistic people claiming to represent Autistic people, etc. is wrong. I would say a great deal of it is dangerously wrong. Part of my personal story is that it took me over a decade from when I first started to suspect I was Autistic to my deciding that I most likely was. Originally everything I found about autism was the typical mainstream stuff you most easily find today, and none of it connected at all with my experiences of the world. Then I started reading things written by other Autistic people and a lot of things began to make sense to me.

Resources for Parents

If you are the parent of an Autistic child, I strongly recommend that you read Jim Sinclair’s excellent essay, Don’t Mourn for Us. I won’t sugarcoat this, for a lot of you this will be a very tough read. One of the tragedies of parenting is that some parents get a very different child from the one they had imagined. Or have a child who initially seems exactly what the parents had hoped, but who gradually, or suddenly, changes. Until you process the grief that your child isn’t who you had dreamed of, you will have a hard time building a deep and enduring bond with your child. As a widow I know how powerful grief can be. I know how much I am asking of you. I also know that until you let go of your negative feelings about your Autistic child you will not be able to develop the relationship with them you crave. Please do not think of your goal as one of dragging your Autistic child into your world. Think of your goal as finding ways for your child to be your guide into their world. Meet them where they are, and build from there.

Many of you will have been told that your child has ‘delays’ in some form of development. This is a misrepresentation of what is actually going on. Schools and paediatricians have timelines for how children are ‘supposed’ to develop. What they don’t acknowledge is that these timelines are all based on how neurotypical children develop. To apply these timelines to Autistic kids, and to read sinister implications into discrepancies is doing you and your child a grave disservice. Your child is on their own timeline, and is headed for a different destination. This isn’t cause for alarm, this is cause for deepening your understanding. I highly recommend this excellent article by Terra Vance, Autism: It’s not OUGHTism. On making decisions about intervention therapies. This is an account from an Autistic parent of an Autistic child. 

For those of you who have children who have been described as ‘nonverbal’ I suggest that you start with this glossary entry for Nonspeaking, written by a non-speaking Autistic, explaining why they don’t like to be called ‘nonverbal.’ Please share this with anyone who has told you that your child is ‘nonverbal’ and ask them why they are using out-dated language which the non-speaking Autistic community feels is a slur.

I’m not going to go into details (yet) about why many in the Autistic community believe that ABA is never an appropriate choice for care of an Autistic person. I have been co-authoring a philosophy paper which looks at this question in depth, but that isn’t ready to be shared yet. In short, one of the essential questions to look at is whether whomever is interacting with your child understands that behaviour which an Autistic parent would recognise as appropriate behaviour for an Autistic child is very different from what a non-Autistic person looks for in a non-Autistic child. The problem is, that a lot of ‘therapists’ seek to make Autistic children behave like non-Autistic children, and they call this progress. From an Autistic perspective this isn’t progress, this is harm. The hard thing for you parents, and I know you already have too much on your plates, is that most therapists will call whatever they do ABA because that is what insurance will pay for. So I offer you this guide on How to Spot a Good– or Bad– Therapist for Your Autistic Child. Assuming that you have found a good therapist, please do not speak out in support of what your therapist does with your child as a defence of ABA. If your therapist matches the good markers, and doesn’t have any of the bad ones, then they aren’t actually doing ABA.

Resources about Autistic People in Work

This is a very thorny area. There are a lot of people who proclaim themselves experts in ‘neurodiversity’ (please see my Neurovocabulary page to understand what is wrong with this label. While not made explicit in Neurovocabulary, I will note that one can have neurodiversity without including any neurodivergent people!), even experts in Autism, who speak from a place of believing in the medical pathology model of Autism which has been rejected by the Autistic Rights movement. For example, Maureen Dunne is the co-founder of an investing group called Autism Angels which is fiscally sponsored by an organisation called the Organization for Autism Research (OAR). I would label OAR as unacceptable to most Autistic people because they are supportive of, and fund research into, Applied Behavior Analysis (ABA). (please see section above about Resources for Parents for more on why advocacy of ABA is disqualifying from an Autistic Rights perspective). The portfolio of Autism Angels holds companies which are ABA providers, like Floreo which uses Virtual Reality to deliver ABA training, such as trying to train Autistic people to make eye contact. The Autistic community would much prefer that people adjust to the idea that Autistic people, like the Japanese, will just make less eye contact and you shouldn’t read anything into that. So when someone like this says that they have important things to say about how to treat Autistic people at work I have grave reservations that I would be okay with anything they have to say. I have read a small bit of her writing, and while she pays lip service to many of the things the Autistic Rights movement advocates, I would describe her overall message in her writing as dubious, possibly harmful; while her investments place her solidly in opposition to Autistic Rights as I understand them. I think everyone in the Autistic Rights movement would agree that you can’t support ABA and support Autistic Rights.

Fortunately, the Harvard Business Review has been publishing some really good articles by neurodivergent people. They have also published a lot of articles by non-Neurodivergent, people, and sadly a lot of those do a poor job of representing Neurodivergent perspectives.

For example of good articles in HBR, I would start with Stop Asking Neurodivergent People to Change the Way They Communicate is written by someone who is AuDHD (Autistic + ADHD). There’s a lot to love about this article! I particularly like the message that it’s time that we stop placing the whole burden of adaptation on communication on the Neurodivergent communities. And it is time that we stop treating Neurodivergent communication styles as wrong or inferior to Neurotypical communication.

Another good HBR article is Autism Doesn’t Hold People Back at Work. Discrimination Does. This is written by an Autistic person, and talks about a number of common ways that companies unintentionally make the lives of their Autistic employees more difficult by making neuronormative assumptions. Sadly, this often begins with the job interview process itself.

Academic Resources

One of my current favourite books is Authoring Autism: On Rhetoric and Neurological Queerness by Melanie Yergeau (the link is to a free download of the introduction to the book). Yergeau is a brilliant writer who tackles complex issues around how Autistic voices are silenced by psychologists, ABA proponents, and the medical and scientific communities. All with a wicked dissection of their positions, some profanity, and a wicked sense of humour. One of the useful things that Yergeau does is detail the history of Gay Conversion Therapy (GCT), which they explain was labelled as ABA in the 80s. When people say that ABA and GCT are the same thing, it’s neither analogy nor metaphor.

A really interesting, and fairly recent, trend in academia is the intersection of Queer Studies with Neurodivergence which has yielded the concept of Neuroqueering. One of the pioneers of this work is Dr. Nick Walker, who has a number of essays available on their Neuroqueer site.

For those who have not yet encountered the Double Empathy problem, I would encourage you to read Milton’s original paper on the subject. This theory renders all of the Theory of Mind work carried out by Simon Baron-Cohen and others moot. Decades of research by countless researchers and no one ever thought to question the assumption that non-Autistic people have reliable Theory of Mind of Autistic people. So they put all of this effort into trying to prove that Autistic people lack Theory of Mind relative to non-Autistics, but never asked the question the other way. Double Empathy argues (and the lived experience of every Autistic person I have ever spoken to about this validates it) that the ‘deficit’ goes both ways. I wrote an essay, entitled The Window Through Which You Are Staring Is A Mirror, which provides a look at some of the damage caused by people following the Theory of Mind work rather than Double Empathy.