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

 

 

 

 

Autism Acceptance Month in Your School

I’m autistic and a parent of autistic kids. April is a tough month for us and other #ActuallyAutistic people. Stereotypes, myths, and inspiration porn are everywhere. Before Lighting It Up Blue, sharing puzzle pieces, or promoting Autism Speaks at your school, read up on the myths and misinformation autistic people must confront every April.

Navigating Autism Acceptance Month and Autism Myths

Follow that up with information about autism from autistic people themselves.

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

Identity First is the language of self-advocacy, neurodiversity, and the social model of disability. It is the language of almost every autistic and disabled person I know. Bring IFL into our schools.

We can’t design for inclusivity, for real life, without the social model for minds and bodies.

More on autism, neurodiversity, the social model of disability, and education: