Tag: Autism

Bookmarked One! Hundred! Thousand! by Austin Kleon (Austin Kleon)

April is also Autism Acceptance Month. A book that made a huge impact on me is Steve Silberman’s Neurotribes: The Legacy of Autism and the Future of Neurodiversity. (Steve also has good tips for being an ally — I learned to stop saying “high functioning” and “We’re all a little on the spectrum, aren’t we?”) If you’re a parent or a family member of an autistic kid, I found this booklet, Start Here: A Guide for Parents of Autistic Kids very helpful. (A few of my notes here.) Also worth reading is comedian Hannah Gadsby on her autism diagnosis. Some books by autistic authors on my to-read shelf: Temple Grandin’s Thinking in Pictures: My Life with Autism, Dara McAnulty’s Diary of a Young Naturalist, and the anthology, Sincerely, Your Autistic Child: What People on the Autism Spectrum With Their Parents Knew About Growing Up, Acceptance, and Identity.

In light of Autism Acceptance Month, Austin Kleon shares a number of resources.
Bookmarked Different communication for different abilities by Tim Chan – Amaze (Amaze)

Despite continuing with speech therapy and other professional input, I was still not picking up speech. The turning point came at age nine when I learned a method of assisted typing with a communication partner’s physical and emotional support to use a speech generating device to speak what I typed. This changed my life, I became really motivated to use assisted typing to connect with people because my eyes were opened to a whole new world.

Tim Chan shares his story of being a nonspeaker and using other methods for communicating. He highlights some of the challenges in appreciating some of these differences.

On the other hand, communication using means other than speech is not well understood, as speech is taken for granted as the gold standard of communication. Lack of prior knowledge of diverse communication methods also resulted other people questioning our high support requirements in methods such as assisted typing, such as, “Why is that person’s hand on your shoulder when you type?” or “Can’t you type by yourself?” I have to explain time and again that the physical touch helps to give me feedback of my arm in space, and to help initiate arm movement towards typing. Anyhow, those questions are answerable.

Liked Autism review concerns NDIS users (The Saturday Paper)

As the National Disability Insurance Agency awaits the findings of research it has commissioned into autism support and treatment, members of the autism community are concerned the report may never be made public.

Marginalia

“I know more about what goes on inside ASIO and the Australian Signals Directorate than I do the NDIA,” says Bob Buckley, convenor of Autism Aspergers Advocacy Australia.

Buckley says the agency’s handling of autism has been a “shambles” and suggests it’s concerned by the large number of users presenting with autism.

Liked A tale of fried onions, Thomas the Tank Engine and a little boy lost — and then found (abc.net.au)

People with autism don’t often get that much understanding. It takes so much effort, concentration, emotional strength and focus just to get by in the neurotypical world that an autistic person can often start their day already in the kind of deficit the rest of us experience at the end of it. The world can be overwhelming. And dispiriting.

If on those few, terrifying days we can come together as a community in full understanding of what Will’s needs would be, might we not be able to do that for other autistics in our life on any given day? A little more patience, a little more consideration, flexibility and accommodation that means they don’t have to be lost before they can be found?

If you want your heartfelt celebration of Will’s discovery to have meaning and effect beyond this week, cross the road to ask if families with kids on the spectrum are doing OK, or if they are lonely or if they need some help. If you work with an autistic person, shift your perspective so as to make a little more room for theirs. If you don’t understand, ask.

Liked behaviour modification therapy does work · Hello Michelle Swan (Hello Michelle Swan)

Any human being, no matter who they are, will eventually become compliant/obedient if they are subject for long enough to demands that they sit at a table and not move, eat, pee, hold a comfort item, express emotion or actually act like a human child for extended periods of time, or if they are made to repeat the same mundane tasks over and over and over again in exchange for tokens or lollies given out at the discretion of  another person who periodically changes what you are required to do in order to earn the reward they have chosen.

via Alfie Kohn
Bookmarked Autism and Behaviorism – Alfie Kohn,Autism and Behaviorism (Alfie Kohn)

When a common practice isn’t necessary or useful even under presumably optimal conditions, it’s time to question whether that practice makes sense at all. For example, if teachers don’t need to give grades even in high school (and if eliminating grades clearly benefits their students), how can we justify grading younger children? If research shows . . . (Read More),January 21, 2020 Autism and Behaviorism New Research Adds to an Already Compelling Case Against,When a common practice isn’t necessary or useful even under presumably optimal conditions, it’s time to question whether that practice makes sense at all. For example, if teachers don’t need to give grades even in


Alfie Kohn discusses a recent looking at the problems with ABA () as a way of engaging with students on the autism spectrum. ABA is,

An intensive training regimen consisting of an elaborate system of rewards to make children comply with external directives, to memorize and engage in very specific behaviors. An expert promises to train the child to make eye contact or point at an object on command, to stop fluttering his hands or rocking — in short, to make him act like a normal kid. ABA is the accepted, expected, even mandated system for dealing with autistic children.

He build on his prior critiques of rewards and positive reinforcement to question the intent behind behaviour modification.

like economists with their axiomatic commitment to using incentives to change people’s behavior, “behavior analysts” have set up an unfalsifiable belief system: When behavioral manipulation fails, the blame is placed on the specific reinforcement protocol being used or on the adult who implemented it or on the child — never on behaviorism itself. The underpinnings of that ideology include: a focus only on observable behaviors that can be quantified, a reduction of wholes to parts, the assumption that everything people do can be explained as a quest for reinforcement, and the creation of methods for selectively reinforcing whichever behaviors are preferred by the person with the power. Behaviorists ignore, or actively dismiss, subjective experience — the perceptions, needs, values, and complex motives of the human beings who engage in behaviors.

Kohn summarises some of the particular problems with ABA, including that it is dehumanising, ignores internal realities, undermines intrinsic motivation, about compliance, creates dependencies and communicates conditional acceptance.

For many, the underlying assumption that they have a disease that needs to be cured is misconceived and offensive. Resistance to this premise led to the founding of the Autistic Self-Advocacy Network and has been described in such mainstream periodicals as Salon, the Atlantic, and the New York Times. From the last of those three articles: “Autism has traditionally been seen as a shell from which a normal child might one day emerge. But some advocates contend that autism is an integral part of their identities, much more like a skin than a shell, and not one they care to shed. The effort to cure autism, they say, is not like curing cancer, but like the efforts of a previous age to cure left-handedness.” Or like curing homosexuality: In the autism community, ABA is often compared to gay conversion therapy.3 Many argue that its goal is to force these children to stop being who they are.

One of the particular defences of ABA is that it is evidence based. The problem with this is that many of the results that these claims are based upon are often dubious.

the best way to conclude with any confidence that different outcomes are due to an intervention and not to pre-existing differences between the members of the groups is to randomly assign subjects to either the treatment condition or the control group. But so few ABA studies did this that it was impossible for the reviewers to calculate an effect size for any outcome.

Liked Autistic Burnout: The Cost of Masking and Passing (Ryan Boren)

I’ve experienced several moments of burnout in my life and career. Being something that I neurologically am not is exhausting. Wearing the mask of neurotypicality drains my batteries and melts my spoons. For a long time, for decades, I didn’t fully understand what was going on with me. I didn’t understand the root causes of my cycles of burnout. Finding the Actually Autistic community online woke me to the concept of autistic burnout. When I found the community writing excerpted below, I finally understood an important part of myself. Looking back on my life, I recognized those periods when coping mechanisms had stopped working and crumbled. I recognized my phases and changes as continuous fluid adaptation.

Liked Autistic children and intense interests: the key to their educational inclusion? (woodbugblog)

In my study, I found that when the autistic children were able to access their intense interests, this brought, on the whole, a range of inclusionary advantages. Research has also shown longer-term benefits too, such as developing expertise, positive career choices and opportunities for personal growth. This underscores how important it is that the education of autistic children is not driven by a sense of their deficits, but by an understanding of their interests and strengths. And that rather than dismissing their interests as ‘obsessive’, we ought to value their perseverance and concentration, qualities we usually admire. And while we do need a better understanding of the negative manifestations of very strong interests, we also need to think differently, and better about the educational inclusion of autistic children. So maybe it’s time to ditch the ‘strategies for inclusion’ – which, let’s face it, aren’t working – and allow teachers the flexibility they need to be able to tap into the strong interests of autistic children in school.

Via Ryan Boren
Replied to An Office Designed for Workers With Autism (nytimes.com)

What happens when people who have trouble fitting into a traditional workplace get one designed just for them?

Makes me wonder about the ways students are supported with such things in school? Although Auticon covers the workplace, I wonder what an ‘end-to-end’ solution may look like that celebrates strengths all the way through.
Bookmarked The Trouble With Autism in Novels by Marie Myung-Ok Lee (nytimes.com)

The disorder is poorly understood. Should novelists be able to make it mean whatever they want?

Marie Myung-Ok Lee reflects on the place of autism within literature and discusses some of the issues with this.

The crux of the issue is that with autism there is often, not metaphorically but literally, a lack of voice, which renders the person a tabula rasa on which a writer can inscribe and project almost anything: Autism is a gift, a curse, super intelligence, mental retardation, mystical, repellent, morally edifying, a parent’s worst nightmare. As a writer, I say go ahead and write what you want. As a parent, I find this terrifying, given the way neurotypical people project false motives and feelings onto the actions of others every day.

Interestingly, Myung-Ok Lee does not mention Mark Haddon’s The Curious Incident of the Dog in the Night-Time. I remember reading Haddon’s thoughts on the matter in a review:

I think it’s true there are two types of kids as school. One type probably breezes through school like gazelles across the veldt. For the more troubled types on the edge of the playground, how you get from one day to the next is a mystery. All writers come from the latter, because only if you’re in that group does the working of the human mind become an object of interest.”

Bookmarked ‘A wall built to keep people out’: the cruel, bureaucratic maze of children’s services by Jake Anderson (the Guardian)

In a system cut to the bone, gaining access to the support we had been promised for our daughter’s special educational needs was an exhausting, soul-sapping battle.

Jake Anderson recounts the journey associated with gaining support for their daughter, who has ASD. He discusses some of the stresses:

At the end of a day in this terrifying place, Alice got home hyperactive, angry and frustrated. In addition to the head tics, she now suffered from severe stomach pains and dizziness. Her disquiet would peak before bed. Aged 13, she still needed one of us to lie with her, soothing and calming her, before she eventually dropped off (also aided by melatonin).

One of the things that stood out was the blur between private and public connected with the privatization of government contracts:

Following an assessment in November 2013, we received a letter from Virgin Care. We found it baffling. It read: “As Alice’s language skills are delayed but in line with each other, her needs can be best met within the school environment and her case is now closed.”

My wife attempted to translate for me: Alice was significantly behind in her cognitive development. Not only did this diagnosis feel incorrect, but also, for reasons that were never fully explained, it absolved Virgin Care of any duty of care and handed the responsibility over to Alice’s school. This seemed utterly ridiculous, not least because the letter then detailed all the specialist strategies that Alice’s teaching assistant was obliged to deliver.