PAM: Hi everyone. I’m Pam Laricchia from livingjoyfully.ca, and today, I’m here with Emma Marie Forde. Hi, Emma!
EMMA: Hi Pam!
PAM: It is so nice to have you back for another book chat. This time Emma and I read Re-Thinking Autism: Diagnosis, Identity and Equality, a collection of essays edited by Katherine Runswick-Cole, Rebecca Mallett, and Sami Timimi.
The authors of the essays set out to challenge some of the ways in which autism is understood, so they were looking at the science of autism, the cultural life of autism, and the professional interventions or treatments of autism. They note in the introduction that it is written in the spirit of “openness, inquiry, and the desire to help improve people’s lives.”
And I love that they make it a point to say that their essays are around challenging society’s current construct of autism, not about discounting the behaviours, experiences, and challenges of children and adults who may be labelled as such. It’s about thinking, or re-thinking, the framework of autism that society has placed around them. It’s about raising questions. About challenging the mainstream literature and conceptions of autism that they feel can both limit and damage lives.
I just wanted to say, when I started the book, it was challenging to get into because of the academic language the essays are written in. It wasn’t an easy read, certainly up front. But maybe, really, it’s the writer in me who wanted to simplify their sentences to get their point across so much more clearly—my mind kept translating what I was reading into my personal language.
And there was a point where I actually highlighted one and I said, “What!” So, I thought I’d read that. The sentence was, “Asking instead, what do we need to do to create the dialogical conditions which bring forth co-creative conversation?’ orientates the professional away from looking for evidence to experimenting with relational solutions.”
Or, in my language, “Meet the child where they are and openly engage with them.” But I definitely understood their intention was to challenge autism researchers and that is the language they speak—it’s just been many years since I’ve been reading that language. So, that was pretty funny.
But by the end of the book, I was really struck with the many parallels I saw between their questioning of society’s approach to children’s behaviour and unschooling parents questioning of society’s approach to children’s learning. So, I really thought that was awesome. We are asking the same kinds of questions and always putting the children first.
What about you, Emma? What was your first impression?
EMMA: I must say I really enjoyed reading the book! It was a relief to read the experiences and ideas of people who are thinking critically about autism.
I felt the book gave validation to some of the troubling experiences and ideas that I’d had about autism (both in my clinical work and in my personal experience) and really articulates and elaborates on those.
I feel the book provides the reader with a framework for thinking about the concept of autism which does not pathologize or involve seeing the behaviours associated with autism as a biological difference or disorder. It’s more about widening our conceptualisation of what it means to be human and thinking critically about the process of labelling, diagnosis, and the concept of autism itself.
I can understand what you said when you said it was a bit challenging to get into at first if you’re new to some of the academic terms and the language used it can be a little difficult. I do come from a background in psychology and philosophy of science. But even saying that, I’ve kind of read the book now through for a second time and I did have to really read through the chapters and I was taking notes and I probably will go back to it again because I think there are some quite complex ideas in there.
And I think it’s sort of challenging for a few reasons as well because they are challenging ideas that they are sort of presenting. And I was going to say, I’d also read the book that people might be interested in as well called The Myth of Autism: Medicalising Men’s and Boys’ Social and Emotional Experience (2010) by Sami Timimi, Brian McGabe and Neil Gardner. And that was quite an interesting introduction into the background of some of this work. And the book is drawn on the Re-Thinking Autism book.
The two co-authors of that book are also men who had been diagnosed with autism and they share their experiences of that, really, and the struggles that they’ve had and the path that they’ve taken, reflecting on that, so it’s really interesting to get those different perspectives.
I’m really pleased this book has been written because I think it gives voice to some of the tensions and conflicts which have come up quite frequently online in unschooling discussions about how we can really think about and understand children’s behaviour. Autism is something that parents want to address in discussions. Often, they are wondering if a diagnosis of autism could be helpful for their child, or they may come to the group already with a diagnosis and wanting to share that and really understand what it means in terms of unschooling.
And, I think, sometimes in the discussions in unschooling groups I’ve come across have quite polarised positions on both sides. Sometimes an unschooling advocate might sort of say that we need to put labels aside, they are harmful and on the other side you’ve got parents saying, “but hang on a minute, this diagnosis of autism has been really helpful to us as a family. And it’s an important aspect of my child’s identity and I really feel should be acknowledged and celebrated.”
So, I think that this is a tension that sometimes comes up within some online unschooling groups. I think some of these conflicts are addressed in the book, in terms of thinking about the relationship between autism and the impact of labeling and how that might play out.
And I must say, that I’ve tended to come down on the side of setting labels aside and widening our conception of what it means to be human rather than resorting to diagnosis and labelling because, from my own personal experience, I feel that can be limiting and constraining for the child. And I think the children, often their perspective and their voices aren’t always taken into account. It’s more difficult for them to be heard.
But I know that taking this perspective can sometimes leave parents feeling kind of disenfranchised and confused as to where they stand. And I’ve also found that people do find letting go of the label can be difficult and this is something that is explored by the authors in the book. I was going to say that sometimes it feels like the parents have invested time and effort and sometimes resources into pursuing a diagnosis and so it’s become something that is important to them as a family. And I was interested to hear what your thoughts were about this.
PAM: I have had the same experiences and seen the same kinds of discussions and I’ve found it really interesting because I have personal experience in that area in that my eldest—I’ve told this story before on the podcast—my eldest was going to school and he and school didn’t mix very well and I didn’t know about homeschooling. And they wanted all sorts of labels.
And I found labels helpful in dealing with the schools and in first finding out a bit more information in what they meant. There were tips about ways I could help my child and everything, but even at that time, the information I was getting, even when he was in school and they wanted all this, I was still always looking to my child and I could see from all the different doctors that we visited and the different labels that they wanted to come up with that there was “no answer.”
You know what, I just posted something from the technology episode about unschooling and critical thinking. I had this critical thinking going on at the time while my son was in school. And things were just not jiving between what they were saying and what I was seeing. The labels were useful for school but they were always in the school language. And that’s even how we talked about it at home because I saw an awesome kid at home.
So, to me, that was a school issue which was of course why I was so excited when I finally found out they didn’t have to go to school! (Laughs). They could stay home and he could just be himself. But there was a lot wrapped up with the labels because that was the kind of language that I used to know and they used to talk to me in.
But I really found, once I got home, that I felt more comfortable because that was always the expert, they were the “experts,” but were they right? I was kind of worried. This is what I saw, and this is what I believed, and this is what I thought, but I was getting all these other conventional messages. Whether they are the conventional messages about school or the conventional medical messages about these issues. I still had to think for myself and once we were home for a few months I remember thinking “Wow! I don’t need that anymore!” There is zero value to having those label conversations or to have that information there for me.
So, I can totally understand people who are at a time with their family and their journey, and maybe it ends up being something that works for their family. That is something else that I was talking about in thinking critically—to be open to asking these questions and working through them and see what does work for your family. And mostly at that point when it’s about a child, it’s “does this add value to the child?” and “Is this something that is making them more comfortable to know that there may be some people who are similar?”
The challenge really comes if you start seeing your child through that framework, through those labels, and you start having expectations around it. Your child has to be able to be your child, and that was the problem with them and all the labels. He fit a little bit here, and maybe a little bit here, and maybe a little bit here, but that was the silly thing. Because if he can fit, sort of, all these different things, what real value is any one of them?
So that’s where my experience with labels came in and how they ended up in our lives. And not really adding any value once we managed to get away from the school environment.
EMMA: Yeah, I just wanted to pick up a bit on what you have said because I think that I found as well that it was really nice to have the space within unschooling that was free from labels and there wasn’t a pressure there to define behaviour in terms of a diagnosis. That you could be free to meet your children’s needs where they were at. That is something that I’ve found is sort of quite special and unique about some of the spaces in the online groups that I’ve come across.
I also really enjoyed reading Anne Ohman’s essay, I Am What I Am, as I feel this encapsulates the approach that we’ve taken unschooling where we do see our children for who they are and we can just meet them where they are at and we can just sort of respect them as people. That’s something that I have really valued.
PAM: Yeah, I remember, when she wrote that, I’m going to have to go check dates now because I feel like I read that when I was first coming to unschooling and so it really resonated with me as well [NOTE: She wrote it in 1999, so yes, it was around in 2002 when I first found unschooling!] because, coming from that environment where the focus was so much on the labels and on getting services in schools, and even some of the online groups I was involved in at that time, that was the focus because everybody needed that help and that support.
But I read that and really after a few months, weeks, I basically kind of left those groups because that wasn’t any value in our lives because it was all about that school framework. So that was really interesting.
I thought we’d touch on the history of autism. A number of essays around the history of the development of autism, and that a number of theories have risen and then fallen out of favour. I’ve found that really interesting.
Like the Theory of Mind, referring to the ability to understand that other people have their own plans, thoughts, beliefs, attitudes and emotions—and that is the central deficit found in autism. Then there’s the “extreme male brain” theory and “boys will be boys.” And there’s the notion that educational methods currently used in Western schools (such as continuous assessment and socially orientated worksheets) are favoured more by girls than boys and the medicalization of behaviours that lie outside an increasingly narrow norm of expectations.
And then there are the theories around it being a biological problem, with abnormalities in certain brain structures, problems with neurological connectivity, effects of vaccines, et cetera. Yet, as outlined in the essay Does Everybody with an Autism Diagnosis Have the Same Underlying Condition? by Richard Hassall, “no genetic or neurological basis for autism has so far been reliably established, despite extensive research studies conducted over a long period throughout the world.”
Now he makes a point to say that this does not mean that there’s no such “thing” as autism: “Those with the diagnosis generally do display significant disabilities of one sort or another, although there is wide variation in the nature and severity of these.” He’s talking about how a single “root cause” has not been found.
There was an essay titled Understanding This Thing Called Autism by Katherine Runswick-Cole, that I really connected with. She is a senior research fellow in disability studies and psychology at Manchester Metropolitan University and mother of two young adults, one of whom has been labelled with autism, and, in that essay, she shares her journey.
Her current view is that “autism is a contemporary cultural phenomenon so that labelling people with it is no longer helpful.” I appreciated her touching on the ethics and challenges of being a mother-researcher. She was in the middle of her psychology degree when her son was diagnosed. She then dove into autism literature, learning about autism and its cultures, eventually attending a support group for parents of autistic children, which reminded me of Anne’s “I Am What I Am” essay.
Katherine describes how she was seduced by the autism culture and began to speak the language of autism and recognize behaviours—she began to spot autistic pathology in family members, including herself and her husband, and I remember that from our journey as well. Then she was introduced to the social model of disability, which sees disability as something imposed upon people as the result of social arrangements that oppress people with impairments—meaning it was the systems, attitudes, and environments that disable people with autism. Then she came across the neurodiversity movement, arguing that autism is a naturally occurring brain that is different, not a disorder.
She came to see that, for her, both the social model theory and the neurodiversity movement were limited by the fact that they still treated the construct of autism as a biological fact. “The stories of the medical world remain pervasive and powerful, they are the dominant meta-narratives in our contemporary culture, but they are just that—stories.”
Her experience is that the category of autism is of limited use to those diagnosed with it; instead, her point is that autism is a contemporary cultural construct, “an all-encompassing label, a narrative lens that accounts for every aspect of my son’s behaviour and personality, so much so that there is nothing left of him that cannot be accounted for without reference to the autism story. Autism is, we are told, the reason why our son liked Thomas the Tank Engine, why he now likes Star Wars, why he made up words as a young child, why he likes to play chess. This thing called autism is everywhere; it is embedded in contemporary culture—popular magazines, newspapers, books, films, academic journal articles, and conferences that both describe and produce autism. We have also noticed that the number of children labelled with autism across the globe continues to rise as debates rage about whether better diagnosis or an increase in prevalence is to blame.”
Her point is that, “the contemporary cultural autism story told about people with the label drowns out all the other stories that could be told about them. Autism is a story but it is not the story.”
That was my experience as well that I was talking about earlier. When my eldest was in school, a label was a short-handed way to convey some basic information and set expectations with teachers and other school personnel. But I saw that that label really did give them tunnel vision—they thought everything about him through that. They felt that was all they needed to know about him.
Yet, as I said, once they [my kids] left school, within a few months I saw that that label did not have value in our lives, or in his life. Because I would get so much more information looking at him rather than looking at the label or researching the label. Because I knew that what I needed to do was to help him where he was. And not even have expectations of things he would do because of that label and all the different ways that you can frame it that way. I could see for myself what his strengths and his challenges were. I was there to help him, both to take advantage of the strengths that he had and to support him in more depth with his challenges. He was his own unique person with so many different stories. He was so much more than just that one story.
So I was wondering, what about the history stood out for you, Emma?
EMMA: I thought it was really interesting that, as you mention, despite all of the research over the years and the huge amount of money that has been invested in research looking for an underlying biological or genetic causation—no biological markers have been found.
Sami Timimi and Brian McCabe explore this in the chapter What Have We Learned From The Science of Autism? And they look at in more depth the history of the research. And Nick Hodge mentions that 21 million pounds was spent on autism research in the UK between 2007-2011.
The majority of that money was spent on looking at neural, cognitive systems, genetics and other risk factors but very little of that money was actually spent on thinking about interventions or in terms of thinking about ways of improving people’s lives—social interventions or things like that. And that really struck me quite a lot there. It’s quite staggering really.
The book highlights to me how we have come to think of the concept of autism as a reified concept and yet people who are diagnosed with it have very different presentations and they can be quite different from each other, really. And in terms of the scientific reliability, validity or even clinical utility, it isn’t a particularly useful concept but at the same time this is rarely questioned. People do tend to generally believe that if you speak about autism that a biological cause has been found. That is still a dominant story that I come across.
I thought it was an important point that you made—that the book is really asking people to think critically about the concept of autism and they [the authors] are not suggesting that children and their families don’t experience difficulties or that children or adults might have ways of being which they might struggle with or might need support with. I think that’s something really important to emphasize. But, at the same time, they are really asking us to sort of go beyond our initial conceptualization of those behaviours and to look in the wider context.
I thought that it was interesting how Katherine explores her experience with her son being diagnosed with autism. I think that’s an interesting position and a lot of people who I know—that you can be both a professional and a parent of a child with autism. That it’s not necessarily either-0r. Our experiences can be sort of interwoven and that most people probably know someone that has received a diagnosis or might feel that they qualify for a diagnosis in their lives.
I thought it was brave of Katherine, really, to speak about that as well, and I’m glad that she has. I was just going to say, actually, that Katherine talks about her experience in more depth in her podcast interview on The Radical Therapist and it was interesting to hear her speak about that in more detail. It’s really good and I’d recommend it. And it led to as well, from thinking about it from an unschooling perspective, about how it’s helpful to not see you child through filters, or to try and see them without filters. And it reminds me of a quote by Sandra Dodd where she says, “If your child is more important than your vision of your child, life will become easier.”
PAM: I love that quote.
EMMA: Yeah, it’s really good and I think that we can sometimes can get caught up in our own kind of perspectives and it can get in the way of us being with our children.
Going on a bit, Kim Davies wrote a chapter in the book called How Rude? Autism as A Study in Ability and she picked up on how autism as a diagnostic construct was first proposed by Leo Kanner, which was in 1943. And she gave some really interesting descriptions of Kanner’s and Asperger’s definitive diagnostic publications which explore how the concept of autism came into existence.
Kim writes, “It is important to remember that the edifice that is autism was built upon a handful of child studies by both Kanner and Asperger. Kanner worked with eleven children and Asperger even fewer, just four. The children and their families were referred for clinical attention (assessment, placement and remediation) by educational and other authorities, a process of ableism that continues to repeat itself in the diagnostic reflex that is such a pervasive practice in Western schooling.”
Kim describes the quite ordinary and understandable behaviour of the children in a very strange situation. Their behaviour under scrutiny and taken out of context was interpreted as a sign of individual pathology. And she say’s “Despite going on to describe in detail four very different children with varying backgrounds, Asperger is insistent that school trouble these children experience can be traced to their shared pathology.”
Some of the behaviours Asperger described which he thought of as evidence of autism included “Fritz V, he said was ‘utterly indifferent to the authority of adults’ (Asperger 1944) and ‘the same boy who sat there listlessly with an absent look on his face would suddenly jump up with his eyes lit up, and before one could do anything, he would have done something mischievous.”
Another boy he called Harro L’s behaviour was problematic because of what he termed his “contact disturbance” which entailed his “extremely limited relationship to his environment. Through the length of his stay on the ward he remained a stranger. One would never see him join in a game with others. Most of the time, he sat in a corner buried in a book, oblivious to the noise or movement around him, such fanatical reading is rare before the age of ten.”
Harro, he says, “did not see the funny side of things and lacked any sense of humour, especially if the joke was on him.” Kim goes on to explain that in this de-contextualised situation the children’s behaviour was interpreted as a sign of pathology rather than behaviour which could be understood in the context of wider relational, social, economic and political contexts. Some of those children were struggling in school and, rather than looking at the school context to see how this might be contributing to their presentations, Asperger instead looked for something which resided within the individual child. This focus on the child versus thinking about the wider relational setting is something which continues today when we diagnose children with autism.
PAM: Yeah, I think that you can see that in school, too. And with unschooling, well, we’re going to talk about it later, but all different kinds of labels as well, even learning difficulties, disabilities, et cetera. When you don’t consider the context of the situation you really can get a very different message, can’t you, then what is actually going on in the child’s head.
There were a few essays that touched on systemic theory and practice that I found really interesting. This was the first I’d heard the term, though the description quickly resonated with me. Autism is viewed predominantly as an individual cognitive issue, as you were saying above, looking to the child to explain the problem. But a systemic approach focuses on what happens between people—how they interact with one another and one another’s ideas. So, it’s the larger picture system of people relating to each other, and in this case, when autism is part of the picture. So that means that context is the central component. That definitely makes a lot of sense to me.
Just last week on the podcast I shared one of my favourite quotes from, I guess it was two weeks ago now when this goes out, from Maria Popova about the difference between learning facts—the knowledge-gathering which schools focus on—and understanding the context of the information and how it fits into the bigger picture—which is what unschooling values, and she defines that as wisdom.
So, a couple of quick quotes from essay 12, Critical Systemic Therapy, by Mark Haydon-Laurelut.
He wrote, “With systemic therapy there are always multiple stories that can be told about any pattern of action, and re-describing those leads to the possibility for new actions. Systemic therapists will often positively or logically relate current patterns to show that—despite unwanted outcomes—each person’s behaviour has logic given an understanding of their position in context.”
I know we talk so often on the podcast about the value of seeing things from our child’s perspective—so we see their choices and actions from their context; that can definitely be very different from the motivations that we might initially attribute to them. We see this so often in some of the questions in our Q&A episodes: listeners describe situations of unwanted outcomes and in our discussions, we share any different patterns and underlying logic that we might see when we look at the situation they describe through the lens of unschooling and from the child’s perspective.
What did you think about systemic therapy, Emma?
EMMA: Yes, I really like the ideas. Systemic therapy was part of my training and I was quite fortunate about that. I was able to be part of a narrative therapy team where we sat together as a team, I think Mark sort of describes it in his chapter. You know, how you can have a conversation with another therapist at the same time you can reflect different perspectives. So, it’s not just therapist and client, necessarily. You can bring in lots of different stories to the situation. So yeah, it was something that I really enjoyed, reading those chapters.
I like the way Mark and Gail Simon, who is also a family therapist, she described the importance of thinking about behaviour in the context of relationships and also again in the context of the wider social and political frameworks, which is really advocated throughout the book. Locating autism in a wider social, political, and historical framework. And thinking about how helpful it really is to explore how the interactions between people.
And I really like it as well because the systemic approach takes a critical approach to the dominant biomedical explanations for behaviour and listens out for how those stories might be impacting on individuals and their lives and their families. And I think it also listens out for alternatives, so it’s being open and curious about other possibilities and other ways of being that might be sort of more hopeful and helpful. Which I think is something that unschooling does as well. I think that people, I’m sort of thinking in terms of unschooling forums, but I guess that it’s really important in terms of relationships with our children as well, that we listen out to how they are feeling—what isn’t always being said as well as what is being said—and thinking creatively.
In some of the chapters about systemic therapy, they do emphasize there is a space where different stories can be told and those stories can have an impact on the way we feel about ourselves and how others feel about us. And so how we conceptualize those stories is really important and I think that is something again that unschooling picks up on, is how we speak about our children, the words, the kind of language that we use and how important that is in terms of how we think about our relationships. So, I like that emphasis.
I think there are some connections here with an unschooling perspective and approach. And Gail, as well as Mark, they speak about how to engage, really, in playful ways and how to create a shared experience and how that can be often about meeting someone where they are at and seeing things from their perspective. And also, tapping into their interests and their passions, and there were some nice stories in there about engaging with children through their interests and not bringing in the therapist’s agenda but just finding more out about the child’s world and what those interests mean to them. I think that it’s really about privileging the child’s experience and again, that’s something that we do in unschooling.
PAM: Yeah, it was so interesting that you could see the difference when they let the child lead, the conversation, right?
EMMA: Yeah, it was seeing things from the child’s perspective and that kind of takes on a whole new different meaning and it allows the child to be more relaxed and open. I think, there’s a term “intersubjectivity”—it’s about shared experience, really, and you both have a sense of connection, and I think that’s what came across in those stories.
It wasn’t the therapist or adult imposing their perspective on the child, it was something that they were coming to together and it took both of them to really rethink and to connect, which I think sometimes in more traditional therapy or in the medicalized approach that you’re not getting those shared experiences in the same way. Which I think is also, as an unschooling parent, you’re working together with your child, really, to develop those sort of shared experiences, and play together and be curious together. So, I think all those things are picked up with this perspective.
PAM: Yeah, I really enjoyed that piece.
There were a couple of other places that really connected with me and I enjoyed the essays around the commodification of autism and the negative impact of labels. So, let’s jump into that.
The commodification (I like that word!) of autism is about the big business that has developed around it. From the essay by Rebecca Mallett and Katherine Runswick-Cole titled The Commodification of Autism: What’s at Stake: “Interventions and treatment programmes provide a space for the exchange of ‘valuable’ information for people labelled with autism and their families and offer the ‘promise’ of remediation, rehabilitation and, perhaps, resolution, in the form of a cure.”
The predominantly biomedical model of autism gives us “a situation where ‘expert’ professionals coherently produce autism as a ‘thing’ because they perceive a need for certain behaviours and symptoms to be explained and remedied.”
I see the parallels in their (the editors and writers of these essays) critique of the big business of psychiatry and autism and our unschooling critique of the big business of education. Because, with conventional education, we see a narrowly defined “normal” of when certain skills should be learned, laid out in curricula, and anything outside of that range is defined as “abnormal” and remediation is offered by “experts.”
You know what? When I was reading this, I started thinking of all the tutoring businesses that have sprung up in the last couple of decades, like the Kumon, Sylvan, and Oxford Learning chains around here. And with autism, you just replace “skills” with “behaviours” and you have a very similar picture.
I was wondering if you got that impression as well, Emma?
EMMA: Yeah, it’s a really interesting observation, really and I could really see the similarities there.
That also really reminded me about Kim Davies reflections that autism diagnosis and labelling is often used to police the boundaries of what is considered to be “normal” and “abnormal” in society and also an important indicator of how “difference” can be understood and responded to.
And I was thinking that it’s a way of sifting and sorting and categorising people so that they fit into what the authors describe as an agenda of a neoliberal society. It made me think about how in the same way the grading, streaming and assessment systems in schools and the educational system might operate in a similar way to psychiatry and how that employs autism diagnosis.
These kinds of practices have a wider social, political and economic function which can serve to maintain the status quo and may even sort of replicate and perpetuate social and structural inequalities. The commodification of autism works well because it is serving these wider ideals, if you like. I think it’s something that John Taylor Gatto picks up on as well about the operation of the school system.
I also was thinking about, in terms of commodification, the chapter The Biopolitics of Autism in Brazil by Francisco Ortega and colleagues and they spoke about their research exploring how parents in online groups are actively sharing information and negotiating new meanings, constructing versions of autism that fit their experience. In this way, “Consumers, simultaneously consume, create and shape meanings of the goods exchanged.”
I was thinking that parents are no longer really dependent on the medical profession for information and they can choose to access online resources—that could be scientific journal articles or articles written by experts by experience of the families.
And I was thinking, just as families can really define what autism means to them, it also opens up the possibilities of people choosing to resist going down a diagnosis route. Parents meeting together in online group have to opportunity to really talk with other parents, so I find it helpful when we decided not to go down a diagnostic route and I’m really glad we didn’t because four years on my child doesn’t have any of those same issues. And I might say that if I had decided to go down a diagnostic route then maybe it wouldn’t have been like that.
So, I think parents have now got the opportunity to collaborate together in perhaps ways they didn’t have before and they are not solely reliant on a medical explanations and to think about their experience. I was thinking, in terms of commodification of autism, parents can and do take an active role in deciding what’s important to them and in terms of making choices. That we have choices that we can make and I think that this book raises some of those issues. It enables us to reflect and think, that we don’t have to feel pressured to go down a particular route, and I think that can be particularly important with unschooling. Because we’re outside of the usual frameworks so there might be a bit more space to negotiate, you know, we’re not being pressured by the school system to make those choices. Like you talked about before, how once you’d left the school environment, you felt freer to actually be in a different way.
PAM: And as you were talking about those online groups it reminded me, I think I mentioned, that I was in some online groups before and I was doing research and trying to figure things out with the school. And how, as I became more involved in the unschooling online communities, that made so much more sense. That perspective resonated so much more and I pulled out of the school-oriented ones and how they would describe labels and how they had to hold on to that language, right? Because that’s the language they had to speak to talk with the schools.
And once I found the unschooling lens and language and perspective, it made so much more sense to me that I was able to transition. So, yeah, I really loved that point about parents working together and grouping together and making sense of the information that is there as it relates to their lives. Again, critical thinking and seeing what is really happening in your life versus what other people may be telling you might or should be happening.
Speaking of which! Let’s move on to labels—we seem to buy into labels, well, this is their perspective—we seem to buy into labels such as autism because they promise to take away the danger of the unknown. I was using that label to find more information because you want to know and there is a lot of fear wrapped up in the unknown.
So, parents consume this information in order to understand and better care for their loved ones, and older individuals consume it to better understand themselves. You know, we might even find, as Katherine was saying as she was finding labels for her son, she was starting to see that in herself and in her family members et cetera. Because we are looking to discover what it means to have “autism”—to find a new set of norms, right? So, okay, this is “normal” because it’s autism, or whatever label you’re looking at. But that is “normal” within the specified sub-category of “abnormal.”
One of the things I loved—they shared an often-heard phrase in the community: “If you’ve met one person with autism, you’ve met one person with autism.” Think about that for a second. If that’s the case, then what’s really the point of the label? If people labelled with autism have so little in common with one another, then the use of the label doesn’t really explain much.
That whole idea led nicely into another essay, Early Diagnosis of Autism: Is Earlier Always Better? by Ginny Russell.
The conventional view is that earlier diagnosis and intervention is better—it is assumed that the younger the child, the more chances there are of succeeding with treatment—though the literature on the effectiveness of early intervention for children with autism is far from conclusive, which the author in the essay surveys in some detail.
It also touches on the wide-ranging negative impact of labels, that lens through which everyone now views the child: “labelling theory hypothesizes that diagnosing and labelling a child as autistic will lead to shifts in expectancy and attitudes of those in contact with the child, as well as altering the self-identity of the child, and this will serve to reinforce the ‘abnormal’ autistic behaviour.”
I know that in my contact with the school at the time, that they really focused on that label and saw everything through that lens, so I definitely saw that in action. And there are so many interesting parallels with the label discussion that you and I had earlier this year when we chatted about Scott Barry Kaufman’s book, Ungifted: Intelligence Redefined. And he was looking at learning disabilities. So many times I saw an overlap between those descriptions of disabilities.
I was wondering what you thought about that, Emma?
EMMA: Yeah, I could see quite a lot of parallels there as well.
Particularly in regard to the impact that labelling has a result of a self-fulfilling prophecy and how labels themselves can have a really powerful effect on what we believe to be true about ourselves and what others believe to be true about us, and can have a quite profound influence on our behaviour and how we go on to develop, really. And I think that’s some of the issues that Ginny, as you mention, picks up on in this chapter. And that really, we should be cautious about proceeding with diagnosis and labelling from an early age because we don’t really know yet the consequences of young children, and even older children, having that label.
Ginny describes how there isn’t enough research done really to tell us how they will go on to develop as a result of that. And what she does explain in the chapter, she mentions how once children have been diagnosed it can lead to a change in attitude from others and they might have lower expectations, they might sort of disengage or feel that they don’t know how to relate to the child anymore because they don’t feel as though they have enough expertise or knowledge. So, it can create a state of alienation.
She describes how once you’ve made that diagnosis, then all behaviour tends to be thought about by the biomedical explanation, which you’ve touch on about the school having sort of a narrow tunnel vision and how that can really prevent you from understanding what is really happening for the child and from seeing anything else.
You mentioned about the research she talks about and I wanted to pull out a couple of bits that were quite interesting. She mentions that 30% of children who are given an autism diagnosis at age two no longer meet criteria for the autism diagnosis at age four. I thought that was quite significant piece of research. It’s suggesting that just because we’ve identified a child as having particular symptoms at a certain age, they might not have that as they get older. And children change so much developmentally during those years that I do find it astonishing that they are diagnosing children really young.
Ginny has done some research herself which has looked at two groups of children who had severe autistic-type traits measured at age two. One group who received an autism diagnosis later on but the children who didn’t receive the autism diagnosis, they actually went on to have better outcomes as adolescents. It’s actually suggesting that sometimes it is better to wait and see what happens rather than to jump in and go down a diagnostic route because the children actually did improve in terms of those initial behaviours over time, without any intervention. So, I thought those were very interesting studies that she cited there.
It also challenges us to reconsider. Traditionally, autism is considered a neurodevelopmental disorder and it’s considered to be a life-long impairment and I think Katherine describes in the first chapter how devastated she felt when she was given the diagnosis and she was given some statistics that it is a lifelong condition and that her child might not live alone, they might always be dependent. It was quite a bleak outlook that she was given.
And I think, in this chapter, Ginny is saying that we don’t really know that that is the case, and, actually, it seems that children actually do go on to have good outcomes in adolescence without interventions.
Ginny says, “When interventions are not proven, and when iatrogenic effects of labelling are not disproven, the benefits of the early intervention paradigm for childhood developmental disorders should really be questioned, at least until there is enough concrete evidence of real benefit.”
I think that is an important point that she is making. I did happen to meet Ginny a little while ago and she’s working at Exeter University in the UK. She’s actually doing a current research project which is looking at the impact of diagnosis and labelling in relation to autism and the neurodiversity movement. I think that’s really interesting and she’s quite welcoming of people getting in touch with her to share their experiences and she is interested in collaborating with people about that.
PAM: Oh wow, that is very interesting. It was really interesting to think about—I love that! That is the point of so many of these essays is just to show that there are questions in the conventional paradigm, right? So that is something that we, as unschooling parents, are used to considering.
They are not saying “yes/no.” they are not demanding one way or another. But they are sharing “Hey! There’s some information out here, there is experiences with other parents and there are questions that are worth discussion. That is really interesting.
So speaking of—there was an essay titled Schools without Labels which was written by Nick Hodge. And Nick has an interesting back-story. He was a teacher of children with special education needs and disabilities for 15 years before becoming a university-based academic with a specialism in autism.
When he was studying for his doctorate, he began questioning many of the canons of special ed that he had previously accepted without question, like the idea that diagnosis and labelling is always in a child’s best interest. So, after his 15 years as a teacher and his 17 years of work as an academic, he’s encouraging students to adopt a more critical engagement with labels, and to consider their value and impact.
His experience is that “students are reluctant initially to give up the meanings of labels that they are accustomed to.” Because they’ve built an identity around it. And parents “have fought hard to secure a diagnosis for their child and so have invested heavily in this being an enabling act.” They’re helping them, they are doing this to help them. It’s their key to get resources for their child. But in the essay, he questions whether these labels have more negative impact instead.
He makes the point that, “The mystique of medical terminology that surrounds a diagnosis creates an authority for the assignment to children of the devalued status of ‘deviant,’ ‘disordered,’ ‘different,’ or ‘special.’” Meaning, “These are children whom only doctors can understand and make better. Parents and non-medical practitioners become hesitant and uncertain as to whether they are able to support such a child without the ‘expert’ knowledge of the particular ‘syndrome’ that medical professionals assert they have.”
You alluded to this a little bit earlier. Parents can end up minimizing their experience and knowledge of their own child and stop engaging with them from that space of intimate connection because they feel like they don’t have that expert knowledge. “The label becomes the totality of the child’s social identity.”
We were talking earlier about seeing different stories—where teachers tend to use a child’s label to explain a child’s lack of learning, some disabled students offer alternative perspectives, like “the lessons were boring; teachers didn’t understand their needs; other pupils were messing about in class; or feeling that no one really expects them to do well so why put in the effort?”
He makes the point that, “Resistance to labelling is not a call for an abandonment of assessment. These are different things. It is vital that we come to know who children are, what they enjoy, fear, their hopes and aspirations for their future, their worries and concerns, what motivates them and what turns them away from learning.” He’s describing right there exactly what unschooling parents do: we come to know who our children are.
One of the messages that came up a number of times throughout the essays, and that fits well with what so many unschooling parents have found, is that if you focus on the child’s individual needs, their strengths and weaknesses, there is little value to having the label. It doesn’t add anything else on top because you’re already at the root.
Was there anything else that stood out for you, Emma, about labelling?
EMMA: Well, yeah, so picking up from what you just said about ‘resistance to labelling is not a call for abandonment of assessment,’ I think that’s a really important point.
And also, if a parent and child is struggling, I think it can also be important to seek support and help with that. I don’t think anyone is saying “don’t get support,” they are saying that maybe it could be helpful to reach out—for example, the systemic therapeutic work that was described in the book, I think that can actually be really valuable just to open up new conversations within a family if they are struggling with issues and they feel they need to have support with it.
There are other approaches as well that I’ve sort of come across recently, for example, Theraplay, which is an example of an approach that is really non-pathologizing and it works on strengthening the relationship between the parent and the child. Or another approach “video-acted guidance” which again looks at increasing the connection and it looks to do that through shared interests and being playful together and increasing the connections. So I think there are a number of options that you can take up.
I think some parents may get into a situation where they don’t go for help because they don’t want to feel like they’re going down a diagnostic route, but there are options, non-pathologizing options, available. But I think you do have to do your research in terms of finding the therapist and you need to speak to them first and really find out what kind of position they are taking on this before you engage with therapy. And that goes back to the critical thinking as well, and being reflective.
PAM: And taking your child’s perspective, right? If that is something that your child wants to pursue. Or at least is interested, because you don’t want to be forcing something.
EMMA: Yeah, definitely.
I think that’s important and some of the approaches described here are very child-friendly and they do take the child’s perspective into account. So, if the child was interested, they might find that it’s actually a positive experience. The therapist might be playful and engaging in things they are interested in and really come at things from their perspective, which I think could be helpful if they were interested in doing that. And it isn’t seeing it as the child’s difficulty, it’s thinking about the relationships in the family and how to improve that really, and how to better support each other.
I like Nick’s chapter as well, and his approach to labelling, and I really picked up on how it can sometimes be a double-edged sword—that you can have both the negative and the positive aspects of it. So, it might give you access to certain benefits of it, certain services or a community of people that you might feel like you can trust, but they also acknowledge that some of these things don’t always come to fruition in terms of services and that often families are left without the support they expected even when they engage with the service.
Dan Goodley states, “The biopolitics of autism are that as soon as they give with one hand they threaten to take away with the other.” So, there are pros and cons which, I suppose, as parents, it’s something they have to navigate. And as unschooling parents we do have the potential to choose to resist it.
In terms of labelling, Sami Timimi, he’s done a really interesting talk which explores this issues in more depth about labelling. It’s called Autism: Do Labels Help or Hinder? and that is available on YouTube.
PAM: Excellent, excellent. I’d be interested in that as well and will definitely put a link to that in the show-notes.
So just to wrap up, I think one of my favourite questions that was raised in the book was in the essay, The Ethics and Consequences of Making Autism Spectrum Disorder Diagnoses, by Saqib Latif.
The most recent edition of the Diagnostic and Statistical Manual of Mental Disorders, DSM 5, defines autism now as one big spectrum—Autism Spectrum Disorder—without any subdivisions that were in the fourth edition.
He writes: “There is no dispute about the existence of ASD behaviours; instead the dispute is about whether these behaviours amount to a discrete naturally occurring category that the diagnostic label represents. Is it fair, necessary or useful to reduce down to a one-dimensional construct of ASD the evolving personality, experiences, diverse histories and contexts of a growing child with a highly plastic brain? Human behaviour involves social and moral dimensions, and cannot be understood without taking into consideration the values of that individual, their family and indeed their broader cultural milieu. One wonders, given that there is such a massive variation, whether it should be called a ‘disorder’ spectrum, or just a ‘human’ spectrum.”
And that really connected with me because that basically outlines my journey and how I got to that point, so I really enjoyed that piece, it kind of gave me goosebumps there.
I thought it was a really interesting book and I thank you so much for recommending it. It was really fascinating reading, and lots of interesting questions to ponder, and that’s kind of my favourite thing to do, is to dig in. And it was fun to see the parallels and connections with unschooling as well because I was surprised how deeply I saw them relating to one another—the kinds of questions that they raised.
So, was there anything you would like to say to wrap up?
EMMA: Just thanks for discussing the book. It was, I thought, a really important book to talk about and I think it’s opening up spaces for new conversations about these issues. And I think hopefully it will be helpful to families and I really enjoyed it, so thank you.
PAM: Thank you very much, Emma. I really, really appreciate all the time and effort that you put into these episodes. I love chatting about this stuff with you, so thank you very much! Have a great night!
EMMA: Ok, thanks Pam! Bye!