Social Support, Well-being, and Quality of Life Among Autistic People

Great piece from the American Academy of Pediatrics on how inclusion, acceptance, agency, self-advocacy, and responsive parenting/teaching support adaptive functioning, language acquisition, subjective well-being, and transition to adulthood. The findings align nicely with social model self-advocacy.

Selected passages:

I challenge the validity and utility of functioning labels for autism and the interpretation of the “autism spectrum” as a linear continuum. Social support may mediate functioning, because individuals with initially lower skills may experience more benefits from enriched social environments, such as parental input for language growth and cognitive development from inclusive educational settings. Furthermore, subtler manifestations of autism increase individuals’ risk of active peer rejection, loss of formal supports as they transition into adulthood, and distress. Thus, in this review, I provide support for the notion of autism as a cloudy constellation of uneven skills and high within-person variability, with performance contingent on the quality of social experiences and support well-suited for individual abilities or potential and needs.

Self-advocates have organized the neurodiversity movement to reclaim autism as a part of identity (eg, using identity-first language such as “autistic person,” as in the case of the author, rather than person-first language such as “person with autism”) and support civil rights. We argue that social environments contribute substantially to disability and seek quality of life, defined in terms of “objective” factors of adaptive functioning, such as independent living and employment, as well as in terms of subjective well-being, which requires self-determination to play as active a role as possible in making decisions to have the experiences one wants. Yet we argue against normalization and “cure,” in part because many autistic traits can function in neutral or positive ways, although other people may misunderstand or stigmatize atypical behaviors. Indeed, the following narrative review developed from empirical evidence replicated by independent research teams argues against a linear relationship between autism symptoms and impaired functioning, across developmental periods and in multiple domains of both “objective” quality of life and in subjective well-being. In the following syntheses, I suggest that effective social support and subjective well-being mediate whether autistic people achieve a high quality of life.

Responsive parenting (eg, parenting that follows children’s focus of attention and labels objects of interest while allowing the child to take the lead) contributes to young autistic children’s language development, particularly among those who need it most: those with lower levels of expression. Although the same principle applies in typical development, responsive caregiving and input may especially benefit language learning for autistic children, particularly for those who have more difficulty responding to others’ attention. Parents’ strategies to synchronize their behavior in response to their autistic child’s, such as matching his or her pace, may drive language gains from joint parent-child engagement through encouraging the child to initiate interactions, which may especially benefit the children who have the most difficulty producing their own goal-directed actions in reaction to others’ movements. This aligns well with the advice of autism rights movement founder Sinclair, in a foundational essay primarily for parents, to “let your child teach you a little of her language, guide you a little way into his world” as a means of helping the child adapt to the dominant culture and for the well-being of the family.

Instead, higher autism severity, as assessed by the parents’ questionnaire-based report, sometimes inversely relates to their acceptance of their child’s autism, which suggests that subjective perception rather than empirically demonstrated factors may drive acceptance. An increase in autism symptoms over time also relates to more parental acceptance of a child’s autism, likely because of a lowered perception of the possibility for the child to outgrow his or her challenges.

Early intervention delivered in inclusive as opposed to segregated preschool settings predicts higher IQ in elementary school, particularly for those with initially greater social and adaptive behavior impairments. In addition, higher levels of educational inclusion relate to better functioning for autistic adolescents and adults, beyond the effects of demographic and individual characteristics. Furthermore, autistic adolescents with intellectual disability had better academic performance in inclusive versus segregated classrooms, likely in significant part because they received more structured instruction time and their educational plan had greater focus on applied skill development (as contrasted with rote procedural goals). These benefits of inclusion appear driven in part by higher expectations based in confident understanding of needs, more naturalistic and responsive teaching methods as opposed to behavioral management, and access to typically developing peers.

An autism-typical pattern of poor adaptive functioning relative to IQ tends to rise with greater age and IQ, and autistic young adults as a group tend to have lower employment rates than their peers with intellectual disabilities.

Source: Social Support, Well-being, and Quality of Life Among Individuals on the Autism Spectrum | SUPPLEMENT ARTICLES | Pediatrics

We don’t need your mindset marketing.

Autistic Special Interest and ADHD Hyperfocus crush learning curves. Both are powered by passion and intrinsic motivation. Without agency to pursue passion, these rockets can’t take off.

We don’t need your mindset marketing.

We don’t need your behavior mods.

We don’t need your sticks and carrots.

We don’t need your compliance cult.

We need agency and acceptance.

Embrace the obsession. Special interests are “intimately tied to the well-being of people on the spectrum“. “Special interests have a positive impact on autistic adults and are associated with higher subjective well-being and satisfaction across specific life domains including social contact and leisure.

Noncompliance is a social skill“. “Prioritize teaching noncompliance and autonomy to your kids. Prioritize agency.” “Many behavior therapies are compliance-based. Compliance is not a survival skill. It makes us vulnerable.” “It’s of crucial importance that behavior based compliance training not be central to the way we parent, teach, or offer therapy to autistic children. Because of the way it leaves them vulnerable to harm, not only as children, but for the rest of their lives.” Disabled kids “are driven to comply, and comply, and comply. It strips them of agency. It puts them at risk for abuse.” “The most important thing a developmentally disabled child needs to learn is how to say “no.” If they only learn one thing, let it be that.” “When an autistic teen without a standard means of expressive communication suddenly sits down and refuses to do something he’s done day after day, this is self-advocacy … When an autistic person who has been told both overtly and otherwise that she has no future and no personhood reacts by attempting in any way possible to attack the place in which she’s been imprisoned and the people who keep her there, this is self-advocacy … When people generally said to be incapable of communication find ways of making clear what they do and don’t want through means other than words, this is self-advocacy.” “We don’t believe that conventional communication should be the prerequisite for your loved one having their communication honored.

Compassion and acceptance are practical and effective magic. They remedy a lot of problems and contribute to psychological safety. Acceptance matters. “A big part of our susceptibility to issues like anxiety has to do with how we were slowly socialized, either implicitly or explicitly, to believe that an autistic lifestyle is something that is defective and therefore needs fixing. A recent Independent article sums up the strong link between lack of autism acceptance and the development of mental health disorders in autistic people: Research shows that lack of acceptance externally from others and internally from the self significantly predicts depression and anxiety in young adults with autism. ” “We also reject the equation that accepting autism and disability means giving up. Research consistently shows that autism acceptance leads to better mental health for parents as well as autistic people themselves. Evidence is mounting that acceptance and accommodation provide a more reliable path to increased capability and independence than fighting autism or disability does. Acceptance isn’t a cure, but it does facilitate recognition and support of abilities that often go unrecognized and under-valued. We are better off when not only our disabilities, but our real abilities, are recognized.”

Source: I’m Autistic. Here’s what I’d like you to know.

PBIS is Coercion

This is an argument usually used for Applied Behavioral Analysis (ABA), but it applies to PBIS as well. Because PBIS emphasizes the use of tangible rewards and teacher praise to motivate “appropriate” behavior, it often escapes this description.

The overall focus of PBIS is obedience or compliance with rules leading to a reward. The flip side of that coin is there is a lack of rewards or outright punishment administered for noncompliance. The pressure of complying with this system turns kids into ticking time bombs. Having to focus on compliance with school-wide and classroom rules stresses kids out and causes them to enter a state of anxiety when they come to school. In fact, I have seen this escalate to the point the school building itself was a trigger for panic attacks.

And, take my word on this, no one can identify and rebel against an unfair system as efficiently as a kid or adult with ID, except perhaps an autistic person. They know the system is unfair!

Source: PBIS is Broken: How Do We Fix It? – Why Haven’t They Done That Yet?

Plenty of policies and programs limit our ability to do right by children. But perhaps the most restrictive virtual straitjacket that educators face is behaviorism – a psychological theory that would have us focus exclusively on what can be seen and measured, that ignores or dismisses inner experience and reduces wholes to parts. It also suggests that everything people do can be explained as a quest for reinforcement – and, by implication, that we can control others by rewarding them selectively.

Allow me, then, to propose this rule of thumb: The value of any book, article, or presentation intended for teachers (or parents) is inversely related to the number of times the word “behavior” appears in it. The more our attention is fixed on the surface, the more we slight students’ underlying motives, values, and needs.

It’s been decades since academic psychology took seriously the orthodox behaviorism of John B. Watson and B.F. Skinner, which by now has shrunk to a cult-like clan of “behavior analysts.” But, alas, its reductionist influence lives on – in classroom (and schoolwide) management programs like PBIS and Class Dojo, in scripted curricula and the reduction of children’s learning to “data,” in grades and rubrics, in “competency”- and “proficiency”-based approaches to instruction, in standardized assessments, in reading incentives and merit pay for teachers.

In preparing a new Afterword for the 25th-anniversary edition of my book Punished by Rewards, I’ve sorted through scores of recent studies on these subjects. I’m struck by how research continues to find that the best predictor of excellence is intrinsic motivation (finding a task valuable in its own right) – and that this interest is reliably undermined by extrinsic motivation (doing something to get a reward). New experiments confirm that children tend to become less concerned about others once they’ve been rewarded for helping or sharing. Likewise, paying students for better grades or test scores is rarely effective – never mind that the goal is utterly misconceived.

It’s time we outgrew this limited and limiting psychological theory. That means attending less to students’ behaviors and more to the students themselves.

Source: It’s Not About Behavior – Alfie Kohn

Since reading NeuroTribes, I think of psychologically & sensory safe spaces suited to zone work as “Cavendish bubbles” and “Cavendish space”, after Henry Cavendish, the wizard of Clapham Common and discoverer of hydrogen. The privileges of nobility afforded room for his differences, allowing him the space to become “one of the first true scientists in the modern sense.”

Let’s build psychologically safe homes of opportunity without the requirement of nobility or privilege. Replace the trappings of the compliance classroom with student-created context, BYOD (Bring Your Own Device), and BYOC (Bring/Build Your Own Comfort). Let’s hit thrift stores, buy lumber, apply some hacker ethos, and turn the compliance classroom into something psychologically safe and comfortable to a team of young minds engaged in passion-based learning. Inform spaces with neurodiversity and the social model of disability so that they welcome and include all minds and bodies. Provide quiet spaces for high memory state zone work where students can escape sensory overwhelm, slip into flow states, and enjoy a maker’s schedule. Provide social spaces for collaboration and camaraderie. Create cave, campfire, and watering hole zones. Develop neurological curb cuts. Fill our classrooms with choice and comfort, instructional tolerance, continuous connectivity, and assistive technology. In other words, make space for Cavendish.

My cave, campfire, and watering hole moods map to the red, yellow, and green of interaction badges (aka color communication badges). The three-level communication flow used at my company and other distributed companies reflects the progressive sociality of cave, campfire, and watering hole contexts and red, yellow, green interaction moods. These triptych reductions are a useful starting place when designing for neurological pluralism. When we design for pluralism, we design for real life, for the actuality of humanity.

Source: Classroom UX: Bring Your Own Comfort, Bring Your Own Device, Design Your Own Context

 

 

 

 

Cambridge Analytica, Mindset Marketing, and Behaviorism

To be clear, the connection I am trying to make here is that personality profiling-the production of psychographic renderings of human characteristics-is not just confined to Cambridge Analytica, or to Facebook, or to the wider data analytics and advertising industries. Instead, the science of personality testing is slowly entering into education as a form of behavioural governance.

Source: Learning from psychographic personality profiling | code acts in education

Look at the consequences that we are now seeing from Facebook and Cambridge Analytica. The platforms that we use in education for learning are not exempt from this issue.

Source: Platform Literacy in a Time of Mass Gaslighting – Or – That Time I Asked Cambridge Analytica for My Data – Is a Liminal Space

”Learning from psychographic personality profiling” connects Cambridge Analytica’s unethical and democracy-subverting psychometrics with the mindset marketing and behaviorism of education, favorite subjects of mine:

The marketing of mindsets is everywhere. Fast psycho-policy & the datafication of social-emotional learning dominate ed-tech. Grit, growth mindset, project-based mindset, entrepreneurial mindset, innovator’s mindset, and a raft of canned social-emotional skills programs are vying for public money. These notions are quickly productized, jumping straight from psychology departments to aphoristic word images shared on social media and marketing festooned on school walls.

Like every marketed mindset going back to the self-esteem movement, these campaigns are veneers on the deficit model that ignore long-standing structural problems like poverty, racism, sexism, ableism, and childism. The practice and implementation of these mindsets are always suborned by deficit ideology, bootstrap ideology, meritocracy myths, and greed.

Source: Mindset Marketing, Behaviorism, and Deficit Ideology

Behaviorism and mindset marketing are no ally to neurodivergent and disabled people.

My experience with special education and ABA demonstrates how the dichotomy of interventions that are designed to optimize the quality of life for individuals on the spectrum can also adversely impact their mental health, and also their self-acceptance of an autistic identity. This is why so many autistic self-advocates are concerned about behavioral modification programs: because of the long-term effects they can have on autistic people’s mental health. This is why we need to preach autism acceptance, and center self advocates in developing appropriate supports for autistic people. That means we need to take autistic people’s insights, feelings, and desires into account, instead of dismissing them.

Source: THINKING PERSON’S GUIDE TO AUTISM: Mental Health and Autism: Why Acceptance Matters

The past and present of behaviorism is ugly.

Mainstream ed-tech combines the dismal ethics of tech, Silicon Valley, and market fundamentalism with the dismal ethics of behaviorism and the deficit model and mainlines it all into public ed.‬ A representative exhibit is the now infamous Hero K12 video (which has been taken offline).

The video itself is only two and a half minutes, but the way they efficiently pack in so much of what is wrong in schooling today is remarkable. To put it bluntly, it was a bunch of behaviorist garbage. It makes the argument that students are animals that need to be conditioned to do what is expected of them through punishments and rewards. This is music to many educators’ ears, because they all know from their teacher training that the foremost priority in school is classroom management. And when classroom management is taken care of, then they can focus on what really matters-test scores.

The punishments and rewards continue to compound on themselves. Chris gets to go to the pep rally later in the day where he can let loose and have fun. Chris is a good boy, and gets to do good boy things. Jill, however, is a bad girl, so she must go to detention instead of going to the pep rally. Perhaps making Jill sit in a room by herself while everyone else is having fun will teach her to ‘act right.’

Hero K12 reaffirms everything that is perceived to be right with Chris, and everything that is perceived to be wrong with Jill.

Source: Want to ruin the lives of children? There’s an EdTech company for that. – Abrome

Canned social-emotional skills programs, behaviorism, and the marketing of mindsets have serious side effects. They reinforce the cult of compliance and encourage submission to authoritarian rule. They line the pockets of charlatans and profiteers. They encourage surveillance and avaricious data collection. Deficit model capitalism’s data-based obsession proliferates hucksterism and turns kids into someone’s business model. The behaviorism of PBS is of the mindset of abusers and manipulators. It is ideological, intellectual, and ethical kin with ABA, which autistic people have roundly rejected as abusive, coercive, and manipulative torture. We call it autistic conversion therapy.

Behaviorism and mindset marketing are incompatible with neurodiversity and the social model of disability. We in the neurodiversity and disability communities should reject them from our schools. They are gaslighting. They compromise agency. They break down a person’s ability to self-advocate and say NO. This is the exact wrong thing to be doing.

Noncompliance is a social skill“. “Prioritize teaching noncompliance and autonomy to your kids. Prioritize agency.“”Many behavior therapies are compliance-based. Compliance is not a survival skill. It makes us vulnerable.” “It’s of crucial importance that behavior based compliance training not be central to the way we parent, teach, or offer therapy to autistic children. Because of the way it leaves them vulnerable to harm, not only as children, but for the rest of their lives.” Disabled kids “are driven to comply, and comply, and comply. It strips them of agency. It puts them at risk for abuse.” “The most important thing a developmentally disabled child needs to learn is how to say “no.” If they only learn one thing, let it be that.” “When an autistic teen without a standard means of expressive communication suddenly sits down and refuses to do something he’s done day after day, this is self-advocacy … When an autistic person who has been told both overtly and otherwise that she has no future and no personhood reacts by attempting in any way possible to attack the place in which she’s been imprisoned and the people who keep her there, this is self-advocacy … When people generally said to be incapable of communication find ways of making clear what they do and don’t want through means other than words, this is self-advocacy.” “We don’t believe that conventional communication should be the prerequisite for your loved one having their communication honored.

Source: I’m Autistic. Here’s what I’d like you to know.

Plenty of policies and programs limit our ability to do right by children. But perhaps the most restrictive virtual straitjacket that educators face is behaviorism – a psychological theory that would have us focus exclusively on what can be seen and measured, that ignores or dismisses inner experience and reduces wholes to parts. It also suggests that everything people do can be explained as a quest for reinforcement – and, by implication, that we can control others by rewarding them selectively.

Allow me, then, to propose this rule of thumb: The value of any book, article, or presentation intended for teachers (or parents) is inversely related to the number of times the word “behavior” appears in it. The more our attention is fixed on the surface, the more we slight students’ underlying motives, values, and needs.

Source: It’s Not About Behavior – Alfie Kohn

Tools and methods used to manipulate voters and elections are in our schools amplifying and spreading the misbehavior of behaviorism and enabling mass gaslighting. These forces are harmful to all kids, but particularly neurodivergent and disabled kids.

Fix injustice, not kids. Stop buying into behaviorism and mindset marketing. Listen to autistic and disabled people when we warn against them.

The ways education policy is becoming a kind of behavioural science, supported by intimate data collected about psychological characteristics or even neural information about students, is the central focus of this ongoing work. Expert knowledge about students is increasingly being mediated through an edu-data analytics industry, which is bringing new powers to see into the hidden and submerged depths of students’ cognition, brains and emotions, while also allowing ed-tech companies and policymakers to act ‘smarter’, in real-time and predictively, to intervene in and shape students’ futures.

Having possession of a vast quantified personality database would clearly grant power to any organization wishing to find ways to engage, coerce, trigger or nudge people to think or behave in certain ways-advertisers, say, or propagandists. Whether it worked in Cambridge Analytica’s case remains open to debate-though I think Jamie Bartlett is right to understand this as just one example of a shift to new forms of behavioural government in the wider field of politics. Mark Whitehead and colleagues call it ‘neuroliberalism‘-a style of behavioural governance that applies psychology, neuroscience and behavioural sciences methods and expertise to public policy and government action-and convincingly show how it has been installed in governments and businesses around the world. In education we have already seen how organizations such as the Behavioural Insights Team(‘Nudge Unit’) are being contracted to provide policy-relevant insights based on psychological and behavioural expertise and knowledge.

While the OECD is only measuring student personality, the inevitable outcome for any countries with disappointing results is that they will want to improve students’ personalities and character to ensure their competitiveness in the global race.

While ClassDojo is currently popular as a classroom app for supporting growth mindset and character development, it is certainly conceivable that it could be used to promote and reward the Big Five (its website says it is also compatible with Positive Behavioural Interventions and Support, a US Department of Education program, for example-it’s flexible to market demands). It’s not a huge leap to link ClassDojo to psychographic personality profiling-ClassDojo’s founders have openly described being inspired by economist James Heckman, and Heckman helped shape the OECD’s views on the links between personality and economic productivity.

Given current developments in personality testing, character development and social-emotional skills modification, maybe we can paraphrase Jamie Bartlett to suggest that not only are politics drifting to behavioural government, but education policy and practice too are beginning to embrace a behavioural science of algorithm-based triggers and nudges which are tuned to personality and mood. Education appears to be generating more intimate data from students, mining beneath the surface of their knowledge to capture interior details about their personality, character and emotions. Policymakers, test developers and ed-tech producers may not openly say so, but just like Cambridge Analytica they are seeking to learn from psychographic personality profiling.

Source: Learning from psychographic personality profiling | code acts in education

The part of boyd’s talk (and her response) that I find particularly compelling in terms of overlap with this Cambridge Analytica story is in the construct of gaslighting in media literacy.  boyd is not the first to use the term gaslighting in relation to our current situation with media but, again, often I see this presented from the perspective of adtech, law, or politics and not so much from the perspective of education.

If you don’t know what gaslighting is you can take a moment to look into it but basically it is a form of psychological abuse between people who are in close relationships or friendships. It involves an abuser who twists facts and manipulates another person by drawing on that close proximity and the knowledge that they hold about the victim’s personality and other intimate details. The abuser uses the personal knowledge that they have of the person to manipulate them by playing on their fears, wants, and attractions.

It is exactly this principle of platforms employing this idea of personalization, or intimate knowledge of who a person is, which makes the gaslighting metaphor work. We are taking this thing that is a description of a very personal kind of abuse and using it to describe a problem at mass scale. It is the idea that the platform has data which tells it bits about who you are and that there are customers (most often advertisers) out there who will pay for that knowledge. If we are going to bring gaslighting into the conversation then we have to address the ability of a platform to know what makes you like, love, laugh, wow, sad, and angry and use that knowledge against you.

Look at the consequences that we are now seeing from Facebook and Cambridge Analytica. The platforms that we use in education for learning are not exempt from this issue.

In her rebuttal boyd says that one of the outstanding questions that she has after listening to the critics (and thanking them for their input) is how to teach across gaslighting. So, it is here where I will suggest that we have to bring platforms back into the conversation. I’m not sure how we talk about gaslighting in media without looking at how platforms manipulate the frequency and context with which media are presented to us – especially when that frequency and context is “personalized” and based on intimate knowledge of what makes us like, love, wow, sad, grrrr.

Source: Platform Literacy in a Time of Mass Gaslighting – Or – That Time I Asked Cambridge Analytica for My Data – Is a Liminal Space

Previously,

When Grit Isn’t Enough