Showing posts with label Finn Gardiner. Show all posts
Showing posts with label Finn Gardiner. Show all posts

Review: Autism: A New Introduction to Psychological Theory and Current Debate

Finn Gardiner
expectedly.org

 [image: The cover of the book Autism: A New Introduction to Psychological
Theory and Current Debate
, featuring a grid of small illustrations, interrupted
by an orange rectangle in the center-top. Large white text on the rectangle reads,
"Autism".  Smaller light orange text below that reads, "A New Introduction to
Psychological Theory and Current Debate."] 
Introduction

Written from the perspective of British autism researchers with expertise in both theoretical and practical aspects of autism, Sue Fletcher-Watson and Francesca Happé’s Autism: A New Introduction to Psychological Theory and Current Debate is a brief, readable volume about clinical constructions of autism, autistic people’s lived experiences, and philosophical debates about how autism should be approached by professionals and advocates.

While the book is technically a reissue—the original was written back in 1995—the content has been entirely revised to reflect current research, policy, and advocacy. In particular, the authors have made a conscious effort to include autistic people throughout the writing process, including sections written by autistic advocates after every chapter. Fletcher-Watson and Happé do not focus solely on the inclusion of autistic people within society at large; they also discuss the ways in which autism intersects with other forms of marginalisation or oppression, including LGBTQ identity and race. While autism and intersectionality are not the specific focus of the book, it is still relieving to see the authors address autism, and disability more generally, within a framework that takes into account our complex, multilayered lives. This was particularly heartening for me to see, since I myself live at the intersection of autism, queerness and blackness that sometimes causes me to feel isolated from the general population. Far too often, researchers treat autism as an atomised phenomenon that is utterly deracinated from the rest of people’s lives, even though absolutely nobody has a single-issue life, autistic or not. People are complex and have lives that are entwined with others’ complexities.

Contents 

The authors start with a summary of historical constructions of autism, primarily those of Hans Asperger, Leo Kanner, Uta Frith, and Lorna Wing. They then juxtapose these historical models of autism with more recent ones created by autistic advocates like Jim Sinclair, who reconceptualise autism as a disability under the social model, rather than a deficit inherent to the individual that the medical model often promotes. After these historical summaries, Fletcher-Watson and Happé detail current scientific research about biological and behavioural representations of autism, including prevalence, diagnoses, lifespan development, and neuroscientific findings.

When they transition from facts to hypothetical constructs, Fletcher-Watson and Happé describe what makes a good theory: concrete predictions, causality, interpretations of the evidence, explanations of the patterns of characteristics among autistic people, alignment with empirical science, and input from autistic people ourselves throughout the process. Afterwards, they introduce “primary deficit” models of autism and their offshoots: interpretations of autism that see it as wholly negative and suggest a singular cause for the constellation of autistic traits. Fletcher-Watson and Happé focus primarily on the Theory of Mind model, including Simon Baron-Cohen’s empathising/systemising construct, in which autistic people have a core difficulty with perceiving others’ states of mind. Similar deficit models include the idea of “weak central coherence,” or autistic people’s difficulty generalising from specific instances.

The authors are careful to mention that these deficit-centric theories have shown to be inconclusive in empirical research and have been repeatedly called into question by autistic people. They explicitly note that Baron-Cohen’s idea that autistic people exhibit “reduced empathy” is a harmful, dehumanising idea that “betrays a significant lack of empathy on the part of the non-autistic observer” (Fletcher-Watson & Happé, 2019, p. 130). Fletcher-Watson and Happé counter these deficit-centric models with explanations that treat autism as a complex combination of advantages and disadvantages. For example, developmental trajectory models propose that autism arises through atypical development over the lifespan, similar to that of the value-neutral “asynchronous development” model used in gifted-education circles.

The authors conclude by noting that no one cognitive, social, or experiential model can fully capture the differences between autistic and non-autistic people, that evidence-based interventions should be focused on quality of life, rather than “curing” autistic people, and that researchers should take into account the societal impact of autism research when conducting studies.

Coda

Fletcher-Watson and Happé have provided a strong antidote to the gloom-and-doom, causation- and normalisation-focused autism research field in this roughly 200-page volume. The difference between this book and other academic autism books also reflects significant cultural differences in international autism-research priorities. As researchers based in the United Kingdom, Fletcher-Watson and Happé exemplify the massive gulf between British approaches to clinical autism research and their American counterparts. While some researchers in the US have started moving towards incorporating autistic people’s voices, focusing on quality of life, and drawing on the social model, most of them still adhere strictly to a deficit model of autism that focuses on causation and treatment.

For example, the recent Assessment of Autism Spectrum Disorder: Critical Issues in Clinical, Forensic, and School Settings  (Kroncke et al, 2016) and the Essential Clinical Guide to Understanding and Treating Autism (Volkmar & Wiesner, 2017), both written or edited by American autism researchers, use a traditional deficit model that does not incorporate the views of autistic people. Some of these authors are so disconnected from our community that they claim that we generally prefer “people with autism,” and that “autistic” is an outdated term. If they had included autistic voices or read articles by autistic people at any point in their research, it’s less likely that they would make such a statement. This false claim is a reflection of epistemic injustice against autistic people, or the idea that we’re less credible because of who we are. Autism, on the other hand, weaves the insights and experiences of autistic people throughout the book. While it is not perfect—no book is—the difference between this book and the other two I mentioned is easy to appreciate.

American autism researchers should abandon the “not invented here” syndrome and draw from international literature on autism that places our voices at the forefront. Fletcher-Watson and Happé have provided this groundwork through their thoughtful, even-handed treatment of autism, its theoretical constructions, and autistic people’s experiences.
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Parents, Do Not Infantilise Your Teenage and Adult Disabled Children

Finn Gardiner
expectedly.org

Photo © G_Jewels | Flickr / Creative Commons
[Image: Black infant in a wooden high chair,
being spoon-fed by an off-camera adult.]
If you’re a parent of a teenage or adult child with a disability, it’s important to avoid infantilising them.

What is infantilisation? It’s treating people who are no longer children like children in a way that restricts their ability to be fully integrated with their age-peers. It’s talking to them in a condescending voice, dismissing their ideas and opinions, acting as though you will always understand them better than they understand themselves, or going out of your way to shield them from everything you think may be even slightly dangerous.

Infantalisation is treating your child as though they will always be a child, whether they’re five, fifteen or thirty-five.

Infantilisation is different from recognising that disabled people have support needs. That’s part of what being disabled means: being at a relative disadvantage compared to non-disabled people because we require specific supports to help us live within the community, whether that disadvantage is related to physical health, cognition, mental health, sensory processing or perception, mobility, or something else people find disabling.

It doesn’t matter what kind of disability your child has, whether chronic illnesses and intellectual, mobility, psychiatric, learning, developmental and sensory disabilities, or a combination. People with all kinds of disabilities deserve to be taken seriously and treated with respect.

A teenager or an adult with an intellectual or developmental disability is still a teenager or an adult. Accommodating the support needs of an autistic 17-year-old or a 30-year-old with Down syndrome does not mean that you should treat them as though they’re younger than their actual age. You can support people without condescending to them.

Disabled teenagers and adults are just that: teens and adults. Teens and adults may be interested in relationships, sex, college/university, dating, alcohol, parties, mature subject matter in films, TV or books, and other activities and experiences that other people their age are interested in. Pretending that disabled teens and adults don’t have these interests does them a disservice.

If you don’t recognise your teen or adult child's autonomy, they may seek out predatory people who pretend to respect them, but who may lead them into danger because you didn’t talk to them about sex or drugs or relationships or realise that they, like other people their age, may want to try things out.

I’ve seen other disability activists, like Cal Montgomery, talk about allowing disabled people the right to experience ‘dignity of risk,’ or allowing them to try new things and potentially fail at them or learn from their mistakes. I think that’s important. Young people of all ages should have the opportunity to learn what works and what doesn’t work for them.

I understand the desire to protect one’s children from harm. If I had children I would want to avoid them from being harmed, too. Unfortunately, you can’t always control what happens to people throughout the lifespan, as much as you may try. The inherent uncertainty of life requires that parents allow their children to adapt and respond to that uncertainty. There is no such thing as a permanent cocoon, and you’ll find that your teenage or adult child is probably more resilient than you may expect. We deserve the right to try.

Infantilisation is very familiar issue to me. I myself have a developmental disability and my parents—my father in particular—infantilised me as a teenager and as a young adult. I wasn’t allowed to do what many of my peers were allowed to do; my parents claimed that I ‘wasn’t ready’ for many of the things everyone else my age seemed to be allowed to do, like going to school dances. My parents restricted what I read, thinking that I wasn’t mature enough to handle heavier themes in books, TV and films despite encountering similar subject matter in my assigned readings at school. They would force me to attend church even when I’d told them clearly that I was no longer religious; they justified this by claiming ‘in our house, we serve the Lord,’ even though I was only going through the motions of practising Christianity.

I was also a legal adult when this happened; I didn’t tell my parents explicitly that I was no longer Christian until I was eighteen. The appearance was what mattered, even if it was clear my beliefs had changed. When I was nineteen years old, my parents installed parental controls on my Windows account. (I found a way to disable them a few days after they installed these controls without their noticing, but that doesn’t excuse the fact that they still treated me like a small child even though I was an adult.) I was old enough to vote. In fact, I had voted when I was eighteen; I distinctly remember being eager to vote against George W. Bush in 2004.

My parents didn’t always give me the right to try, or if they did, they would do it begrudgingly and blame me if whatever I tried didn’t work out, instead of listening to me and working with me to identify strategies that did work for me. For them, supporting me meant controlling me.

I should also add that recognising that your teenage or adult child with a disability is, in fact, a teenager or an adult is different from using their age as a weapon against them. You can respect their autonomy and recognise that they may need support in certain areas. Just because somebody struggles with housework and certain kinds of planning, as I do, doesn’t mean that you can tell me ‘why, you’re 32! If you want to be treated like an adult, you should be able to muster up those non-existent executive functioning skills!’

Yes, I’m an adult. That doesn’t mean that I don’t have support needs. Rather, it means I should be able to share what my support needs are, and direct the means by which I receive support. Autonomy in adolescence or adulthood is about being able to make decisions about one’s own life and enlisting support to make those decisions and implement them. It is not about having to do every single thing by yourself if your disability prevents you from doing so.

Again, teenagers and adults with disabilities are still teenagers and adults. We have the right to make decisions about our lives and receive support to help us make and carry out those decisions. Having a disability doesn’t mean we’re children, or that we don’t have the right to learn by trial and error. We should be allowed to learn and grow from our experiences.

Your children are not an extension of you; they’re autonomous human beings who will eventually develop their own goals and priorities in their lives that may or may not coincide with yours. Your job is to help guide and support them, not to use them as proxies for your own desires. Respecting disabled people’s autonomy helps us live healthier, more fulfilled lives.
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The Problems with Functioning Labels

Talent Show - Summer Academy 2014
Photo © City Year | Flickr/Creative Commons
[image: Photo of a Black young man with short hair, close-cut beard, and
glasses, holding hands out to sides while on stage during a talent show.]
Finn Gardiner

Many professionals talk about autistic people’s “functioning labels.” Functioning labels are a way to describe how well people learn, take care of themselves, and live in the community. People will often talk about “high-functioning” and “low-functioning” autistic people when they are describing them. Even though people who talk about high-functioning and low-functioning autistic people often mean well, these labels are not accurate for many people. Functioning labels do not always relate to people’s real skills and can be based on hurtful stereotypes about autistic people. They also assume that people’s skills cannot change over time. 

Many people use people’s intelligence to determine whether they are high-functioning or low-functioning, but many autistic people’s daily living skills are not affected by how intelligent they are. Someone can learn quickly and have a hard time with daily living skills, while someone else who learns more slowly can find the same skills easy most of the time. Using these labels can make it hard for people to get services. If you do not have an intellectual disability, agencies may tell you that you are high-functioning and do not need help, even if you’re struggling to stay fed, clothed, and clean. If you do have an intellectual disability, you may be told you are low-functioning even if you don’t need as much help with daily living skills. 

Sometimes people can call the same person “high-functioning” and “low-functioning” at different times in their life. People have said I was “high-functioning” for most of my life, but when I was very young and was non-speaking, they would have said I was “low-functioning” because they thought I had an intellectual disability. Saying that people are “low-functioning” is especially hurtful, because it means that some people will have low expectations of you and will not expect you to learn, grow, and pick up new skills. 

When some doctors thought I had an intellectual disability, one of them said I would never learn anything. I do not have an intellectual disability, but even if I did, I would still be able to learn things. Everyone can learn and pick up new skills over time, whether or not they have an intellectual disability. This is part of why saying “low-functioning” is hurtful. 

Also, people’s functioning can change over time. People can need more or less support with daily living skills for several different reasons. Sometimes they can be having a bad day, or be depressed, or be going through major life changes that cause them stress, or it could be the opposite. Feeling good about yourself may make it easier to do tasks that would usually be hard for you. A “high-functioning” person may be having a bad day and have a hard time with self-care tasks like bathing, cooking, shopping, and dressing. A “low-functioning” person can have a good day, week, or month and do relatively well with the same tasks. 

Instead of talking about functioning labels, we should talk about the specific kinds of support people need. Professionals should treat autistic people and other people with disabilities as individuals that have their own needs instead of just saying that they are high- or low-functioning. Everyone is different and deserves help that will make sure they live the best life they can.
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Fast Learners Are Not Better Than Other People

Finn Gardiner
expectedly.org

(Content warning: ableist slurs.)

IMG81
Photo © U.S. Department of Education | Flickr/Creative Commons
[image: Three schoolchildren of different races,
sitting together in a classroom reading corner, reading books.]

It is not nice to say that fast learners are better than other people. That is because it is mean to people who learn more slowly. It is not bad to learn slowly. It is not bad to be a fast learner either. Everyone can learn something. We just need different ways to learn things. That is OK.

But some people treat fast learners like they are better than other people. That is not nice. I am a fast learner. I am not better than somebody who learns more slowly than I do. I just have different learning needs.

Some people call fast learners gifted. There are many problems with that. Gifted is not a good word. Calling fast learners gifted is not fair. That is because it feels like people who learn slowly are not as good. People also say fast learners are intelligent. Intelligent comes from a Latin word meaning "reading between." That means that we see patterns quickly. Other words people use for fast learners are smart, sharp, bright or clever. People think they are nice words. Sometimes they give a message that slower learners are not worth as much. Some people use these words to say it’s better to learn fast. This is unfair.

Some people learn more slowly than others. They can learn, but it takes more time for them to pick things up. That is OK. They are people and everyone is able to learn something. They just need more time. People say that slow learners have intellectual disabilities. This just means they take longer to learn. Sometimes people use mean words about slow learners. Some of these unkind words include retarded, idiot, stupid and dumb. We should not call slower learners these words. These words are hurtful.

I think everyone deserves to learn things in their own time. I think that people can be good or bad no matter how they learn. We are all people. We should not judge people by how fast they learn.

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Republished with permission.
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