“We need much better standards of research in autism intervention”: An interview with Dr. Damian Milton

damianIn this broad-ranging interview, Dr. Milton & I discuss the theory of the “double empathy problem”; hyperfocus/flow state; autistic parenting; the medical versus social model of disability; the subjectivity of outcome measures; and the diverse ways in which autism itself is framed and defined.

Listen to the interview at the audio link below or find the transcript below that! Links to iTunes and Stitcher at the end of this post.

Transcribed by Julie Ann Lee: Transcript_Milton_Noncompliant

Dr. Damian Milton is a sociologist and lecturer at the University of Kent, on Intellectual and Developmental Disabilities through the Tizard Centre. He is also a consultant for the National Autistic Society in the UK, a Director at the National Autism Task Force, Chair of the Participatory Autism Research Collective (PARC Network) and involved in many other research and practice related projects. His most recent book is A Mismatch of Salience: Explorations in Autism Theory and Practice. His scholarship is central to a paradigm shift to understandings of autism in the field.

The Interview
Dr. Milton’s writing about the double empathy problem, which neatly problematizes the Theory of Mind hypothesis about autism and frames empathy as it is actually defined – a reciprocal state, and the misunderstandings between autistic and non-autistic people likewise as reciprocal—is seminal, and has since borne itself out in the research of current scholars such as Noah Sasson, Brett Heasman, Elizabeth Fletcher and Catherine Crompton.

In short: relationships are a two-way street. It isn’t that “autistic people can’t imagine other peoples’ perspectives” (as theory of mind suggests) but rather, that autistic people and neurotypicals lack a reciprocity for understanding one another’s communication, movement and experience of the sensory world. And that what we all want –neurotypical or autistic—is really at its core the same: relationships and connections with others. Generally, we are all social beings, needing love and warmth, wanting to give and care for others, but this sociability (and even the desire and expression for connection) gets mistranslated between neurotypes. We understand our in-group; we struggle beyond it.

But, you may be asking: “well, duh. Why did researchers before Milton et al., not understand that empathy is reciprocal and that autistic people are…well, people?” We can find some of the answers in the older, medical model of disability—an approach under which any problem a disabled person faced was conceived as a reflection of their own deficits, and where social factors (barriers, exclusion) were not considered (as they are under the newer, social model of disability). Under the medical model, the individual is pathologized by professionals ergo objectified; even actually broken down into parts within some behaviourist-influenced disciplines such as ABA.

And while the medical model of disability has widely been discarded in much other disability praxis/public policy, it is still very present, at least outside of the research world, in the application of Applied Behaviour Analysis (ABA) and its impact on the current autism therapy world.

Just look at this section from an article (in another galaxy far away from Milton’s work)–a 2017 ABA text: “Until a child is mainly controlled by a desire to fit in with peers and please the people they love in the verbal/social world, ABA treatment should be the priority.” That article, which debates whether parents should allow their autistic child to attend school instead of an ABA centre (!!!!), views the goal of autism therapy as “to move a child from reacting to the world though their senses (feeling, tasting, touching etc. – sensory motor world) to reacting in the world because they are trying to please others and live up to their parents and society’s expectations.”

Sorry … but isn’t it normal to react to the world through one’s senses? The ABA perspective, in penalizing sensory responses, really deeply pathologizes being human. It is weird. Milton and I talk about this, as well as how medical-model based approaches determine goals, objectives and even need. When these are defined by ABA practitioners, they look very different than when defined by the very people that autism services are designed to serve—autistic children and adults.

Why, for so long, has autism services been defining “need” based on its own quirky rubrics, rather than communicating with its subjects to find out what their needs were? Perhaps because they were never allowed to be subjects—only objects–in that model.

“Without taking autistic sensibilities into account,” says Dr. Milton, “you’re quite possibly going to harm people or do damage. And that’s a problem of practitioners working with autistic people everywhere, because trying not to harm people should be the number one priority ethically.” Milton argues that we need more participation of autistic people in understanding the best support strategies: “what they’re for and how people are treated, and much better standards of research in autism intervention.” As well, he suggests that we need a rethinking of the goals, for practitioners to be reflective and approach their practice with humility.

To grant subjectivity to autistic people in research and practice is a paradigm shift from segregation towards inclusion. Indeed, we can’t get to inclusion as a society without it. This is why autistic self-advocates are pushing back so much on ABA, because its counter–the social model of disability–is essential towards acknowledging our humanity.

And it’s why discussions about our rights must include an unpacking of the philosophy of difference. We need to do some big-time deconstruction in order to build a new ethos of inclusion! Milton and the new generation of autistic (and affirming) researchers are bringing great promise to fulfilling the highest goals and objectives for autism research—human rights, quality of life and dignity for all autistic people.

Listen to this episode on Stitcher here
Listen to this episode on iTunes here