Why people with disabilities struggle with how far to push themselves (and when to stop)
In the previous post, I graphed the continuum of possible effort a person can exert, and defined the concept of the “sweet spot.” The “sweet spot,” the small zone of maximum skill growth, is the highest amount of effort you can put in without pain.
The sweet spot is the highest amount of effort you can put in without pain, and is the zone of maximum skill growth.
I proposed that yoga teaches us to look for the “sweet spot” and determine one’s current position in relation to it by using mindfulness. I also suggested that the zone of “flow” occurs at the same level of effort as the sweet spot, and could be intimately related.
With these concepts in mind, it will be easier to understand a pressing problem for adults with disabilities: knowing how much to push themselves, and when to stop.
Adults with disabilities often find it difficult to know how to push themselves because they have rarely been allowed to experience the sweet spot. As children, depending on how “severely” disabled they appeared, they were either pushed to the point of overwhelm or left to languish in the zone of atrophy. As adults, they continue to receive unhelpful messages from family, friends, and co-workers, pulling them to one or the other extreme.
Moreover, it takes time and experience to learn where one’s real abilities lie in relation to the statistical norm, especially without helpful input from others. The later in life a person is diagnosed, the less time they have to learn their actual skill level in areas of disability, and how much effort it would truly take to reach their goals.
The Temptation to Push Too Hard
Let’s return to our old friend from the previous post, the inactive middle-aged person with weak muscles and joint or nerve pain. This person is confronted with a variety of weight machines and treadmills at the gym and must decide how to begin. How much weight will they start with on the machines? What speed, incline, or resistance should they select on the treadmill?
If this middle-aged person exerts the optimal, “sweet spot” amount of effort, what performance will they achieve? Realistically, barely anything at all. Their “sweet spot” may only allow them to lift the lowest weight possible on the machines; to walk rather than jog on the treadmill; or to stop after one push-up.
At this point, psychological obstacles arise. Surrounded by people able to perform much better with the same amount of effort, the unfit person may feel lazy, weak, and inadequate. Even if they know no one is watching them, they may still resist the idea of setting their sights so low. It may be hard for them to accept that they have started so far behind the average that to stay within their growth zone, they must do so little.
But it would be a mistake to give in to the urge to push past their limits. The only way to increase their fitness level is to stay in the sweet spot. Their only chance of reaching average levels is to keep showing up and doing the most they can without pain, for as long as it takes. That may be a hard reality to accept, because it’s not easy. One must consistently show up and work hard for a long time.
In their area of weakness, people with disabilities are like the inactive middle-aged person at the gym.
Generally speaking, disabilities don’t mean a person can never do something. For example, dyslexia doesn’t mean a person will never learn to read. However, disabilities mean that skills develop at a slower rate. (See below for a graph of different rates of development, and this post for a more in-depth discussion of developmental rates).
Furthermore, disabilities mean that improvements require more time and effort. Each unit of time and energy put into remediating a disability will always yield less increase in skill than it would if invested in areas of talent. In other words, remediating disabilities is less efficient than developing talents and using them to compensate — and therefore less effective. That’s one reason why experts like Temple Grandin and John Elder Robison recommend focusing on developing strengths rather than remediating weaknesses.
Remediating disabilities is less efficient than developing talents and using them to compensate — and therefore less effective.
Unfortunately, parents and teachers must work within exacting time constraints: yearly grade expectations and societal milestones, such as high school graduation and legal adulthood. There are real consequences for someone whose rate of growth is too low to “catch up” in time, and thus a high temptation not to meet disabled students where they actually are.
So parents and teachers of youth with disabilities may push them beyond the “pain point” in hopes that they will “catch up,” often not realizing the damage this does to the student. Adults are especially likely to over-push a child who, through hard work and intelligent compensation strategies, looks not far behind peers, and is deemed “high functioning.” Such children are put into intensive teaching programs (such as tutoring or ABA), in the hopes that vast time and effort will produce the desired rate of skill development.
The problem is that meanwhile, peers are developing at typical rates. They don’t slow down so their disabled peers can catch up. Suppose a child is at a first grade reading level in second grade, and their teachers are trying to get them to a second grade level by the end of the school year. The child must achieve over a year’s worth of reading development in, at best, a year. However, their natural developmental rate, set by their disability, may be lower — say, 10 months per year. In other words, their sweet spot lies at around 10 months per year. But this rate of improvement is unacceptable to the family and school system, so the student is pushed past the point of pain.
Even if they manage to develop at the desired rate, it comes at a cost — just as regularly pulling all-nighters does. Intensive intervention comes with opportunity costs, professor Dorothy Bishop notes. As parents Shannon Des Roches Rosa and Kristine Barnett observe, children in intensive interventions lack time to recuperate from an exhausting school day, interact with family, or freely play, when forced to work the equivalent of a part-time job outside of school. Yet these very activities — unstructured play and interacting with caregivers — foster development in key areas of weakness for autistic children: imagination, social interaction, [1] and language [4].
Autistic adults in particular report the dire consequences of being pushed past their limits in an effort to make them not only function better, but to look “indistinguishable from peers” while doing it. They are expected to be like a ballerina: to not only perform difficult feats, but to make it look easy. Naturalness in social settings, after all, is necessary to avoid appearing awkward.
The results can be emotional trauma or underemployment, and perhaps could explain the higher rates of stress-related physical ailments, such as digestive problems, in autistic people.
“the monumental effort I put forth every day to try (and fail) to look like everybody else is sapping my talents and potential. All my energy, all my intelligence, goes into looking normal. There’s nothing left over to do a good job at something. When the most important thing is for me to look and sound like everybody else around me, all I have personal resources for is showing up. …And that’s not even enough for a job at McDonald’s. I know. McDonald’s fired me after two weeks.” -Max Sparrow, formerly Sparrow Rose Jones, “No You Don’t”
Research on youth with an “optimal outcome” [3]— those who have become indistinguishable enough from peers to lose their autism diagnosis — confirms autistic adults’ claims. While no longer visibly autistic, these youth are still disabled, with at least moderate attention, activity level, behavior, speech/language, or social interaction difficulties [6].
They also have high rates of mental illness. Mukaddes and colleagues found that 81% had a present psychiatric diagnosis, while 92% had one at some point in their lives [5]. Other than ADHD (an inborn, highly-overlapping disability), the most common diagnoses were specific phobias and OCD.
Children who lost their autism diagnosis have paid a steep price for their apparent “normalcy.” And if the trauma and emotional scars of today’s autistic adults are any indication, they’ll be paying the price for years, while their teachers and therapists congratulate themselves on successfully producing an “optimal” outcome.
If autistic people continue pushing themselves in adulthood, they may go through a crisis called “autistic burnout,” where they appear to “regress” and can no longer use some abilities they have. They may lose the ability to work (full-time or at all), or the ability to speak under stress. Autistic adults report that it may take a long time for their skills to return, even after they stop pushing themselves so hard (or remove themselves from environments that require them to do so).
Failing to Push at All
Some youth with disabilities start out obviously very far behind, with their growth slow enough to be invisible to their families and teachers. For example, an eighteen year old with the verbal IQ of a five year old has developed five years’ worth of language skills, but too slowly for those around them to notice. Adults recognize that the most intensive teaching is unlikely to enable such youth to catch up to their peers.
Instead of patiently working with extremely delayed youth to help them learn as much as they can, parents and teachers give up, and expect little or nothing from them. Such youth are labeled “low functioning,” and warehoused in segregated special education classrooms where little or no academic learning takes place. They may lack access to alternative communication methods that would make a difference, as ill-informed school officials create a catch-22 of demanding language-impaired children prove their capabilities before they can receive the tools to do so! Parents and teachers may assume, especially with autistic children, that these youth are unaware of their environments and incapable of understanding even the simplest concepts.
I’ve discussed how this treatment harms severely disabled children’s psyches. It also denies them the opportunities to increase their abilities. Without stretching, the capabilities they do have will atrophy like a sedentary worker’s muscles. The expectation of failure becomes a self-fulfilling prophecy.
High functioning means your needs get ignored. Low functioning means your abilities get ignored. -Alyssa Zisk on #autismchat, who blogs at http://yesthattoo.blogspot.com
Neither extreme approach works. If we want disabled youth to reach their potential, we need to push them — and help them push themselves — to their sweet spot. No more, no less.
The Consequences: Lost on the Continuum of Effort
The result of being either pushed past their limits or left to languish for years is a generation of adults who don’t know their limits.
Those who achieve valued milestones, such as completing college, working well-paid jobs, marrying, and starting families, often report pushing themselves to the point of exhaustion and even burnout. They talk about teaching themselves to respect their own limits, to focus on functioning rather than “looking normal.” They argue that functioning well is more important than looking normal.
In our terms, functioning may well be possible with an optimal amount of effort, while adding the demand of looking normal may push people past their limits.
I often see bloggers with disabilities debating whether they are practicing necessary self care or just “being lazy.” Such questions suggest they do not know where their personal sweet spot lies, and receive little helpful information from others in their lives. I suspect that, depending on their situation and state of mind, they ricochet between pushing themselves too much and too little.
Perhaps having the concept of a “sweet spot,” and practicing mindful awareness when engaged in effortful tasks, would help them resolve this question for themselves. Then they could stop wasting energy on self-doubt, and instead spend it on self-care and self improvement.
What Can We Do Better?
I should start by acknowledging one potentially immovable constraint. Some expectations, like high school graduation requirements or a 9-hour full-time workday, are reasonable. Yet, meeting these requirements without pushing past one’s limits may be impossible for some without support, and impossible for others even with support. But some people with disabilities may need to meet these requirements to survive. For example, some may lack financial or housing support from family or friends, and may need to work full time to provide housing and medical care for themselves and their children. When keeping up with their job’s expectations takes everything they have, they lack the spare energy to develop their skills further or seek better support. I don’t know the solution to being truly stuck in this way.
But that’s not the reality of many children and adults with disabilities.
People with disabilities may take even longer than their typically-developing peers to learn the academic or independent living skills necessary for full independence. However, given time, appropriate education, and support, they will learn. Indeed, many will still be learning and growing at an age where their typically-developing peers have fallen into a stagnating routine. For example, a surprisingly large number of autistic people diagnosed in the 1960’s-1970’s, the “dark ages” of autism, achieved success despite institutionalization, lack of education, and primitive attempts at “treatment” — including becoming professors![2]
So, parents, teachers, clinicians: resist the temptation to try to push past your students’ limits in the hope of “catching them up.” You want them to learn skills they can sustain for the rest of their lives, not to burn out. Teach your students with disabilities from where they currently are, not where you hope or fear that they are. Know that independence and achievement are possible, but will take more time and effort, and perhaps a different approach. Have the patience to consistently invest the necessary time and effort, and the flexibility to let students perform tasks in a different way than their peers.
Don’t give up just because teaching weak skills is slow, hard, tiring, and unglamorous. To despair because a student three years behind in reading has gained a year’s worth of skill is like despairing as a unfit person because you can only run for 5 minutes.
People with disabilities, you have an advantage no one else has: you can feel the degree of strain or exhaustion your effort imposes on you. Others can only guess where your limits lie from the outside, and even with the best intentions, may guess wrong. But by learning to tune in as one does in yoga, you can feel out your limit and your sweet spot.
There’s no shortcut to lasting skill development, any more than there’s a cheat code for any other area of life. But by consistently showing up and working in your sweet spot, you can eventually expand your capabilities without pain or burnout. This, in turn, will give you more options in life.
References
[1] Pei-San Brown, John A. Sutterby, James A. Therrell, & Candra D. Thornton (2001). The Importance of Free Play to Children’s Development.
[2] Michelle Dawson, Laurent Mottron, and Morton Ann Gernsbacher (2008). Learning in autism. Cognitive Psychology of Memory. Vol. [2] of Learning and Memory: A Comprehensive Reference, 4 vols. (Editor: J. Byrne), pp. 759–772. Oxford: Elsevier. Open access PDF.
[3] Deborah Fein, Marianne Barton, Inge-Marie Eigsti, Elizabeth Kelley, et al. (2013). Optimal outcome in individuals with a history of autism. Journal of Child Psychology & Psychiatry vol. 54, iss. 2, pp. 195–205, doi: 10.1111/jcpp.12037. Open access PDF.
[4] Erika Hoff (2006). How social contexts support and shape language development. Developmental Review pp. 55–88. Open access PDF. See pp. 72–73 for evidence that parents’ child-directed, responsive speech improves their children’s language development.
[5] Nahit Motavalli Mukaddes, Tuba Mutluer, Basak Ayik,Ayla Umut (2016). What Happens to Children Who Move off the Autism Spectrum? A Clinical Follow-Up Study. Pediatrics International.
[6] Martina Barnevik Olsson, Joakim Westerlund, Sebastian Lundstrom, MaiBritt Giacobini, Elisabeth Fernell, & Christopher Gillberg (2015). “Recovery” from the diagnosis of autism — and then? Neuropsychiatric Disorders and Treatment pp. 999–1005. Open access.
Further Reading on Over- and Under-pushing
Over-Pushing
- Dani Alexis (2015). On functioning and “functioning.” Autistic Academic.
- *autistics.org. Help! I seem to be getting more autistic! Archived by American Aspergers Association in 2010.
- Dorothy Bishop (2015) Opportunity costs: A new red flag for evaluating interventions for neurodevelopmental disorders. Bishop Blog.
- Judy Endow (undated). Autistic burnout. Ollibean.
- Sparrow Rose Jones (2013). No you don’t. Unstrange Mind.
- *Cynthia Kim (2013). Autistic regression and fluid adaptation. Musings of an Aspie.
- *Kassiane Sibley (2013). The cost of indistinguishability is unreasonable. Radical Neurodivergence Speaking.
- Kassiane Sibley (2013). Indistinguishable from peers — an introduction. Radical Neurodivergence Speaking.
- Kassiane Sibley (2013). Indistinguishable from peers means: You don’t have autism-related problems. Radical Neurodivergence Speaking.
Under-pushing:
- Kate Ahern (2010). Living the least dangerous assumption. Teaching Learners with Multiple Special Needs.
- *Morton Ann Gernsbacher (2004). Language is more than speech: A case study. The journal of developmental and learning disorders, vol. 8, iss. 79. Open access PDF.
- *Peyton Goddard’s website and book.
- Elizabeth “Ibby” Grace (2012). Conversations between autistic self-advocates and autism parents — Part 2. Thinking Person’s Guide to Autism. Uses Pascal’s Wager as a way of explaining why one should always treat severely disabled people as potentially competent.
- Jess (2015). But what if he’s wrong? A Diary of a Mom.
- Cheryl Jorgensen (2005). The least dangerous assumption: A challenge to create a new paradigm. Creating Solutions, Fall issue.
- *Ido Kedar’s blog and book.
- Emily Morson (2012). Why assume autistic people are listening? Mosaic of Minds.
- *Tito Rajarshi Mukhopadhyay (2008). How can I talk if my lips don’t move?: Inside my autistic mind.
- Kathie Snow (2007). Presume competence: Challenging conventional wisdom about people with disabilities. Disability is Natural.
- *Ariane Zurcher (2014). Presuming competence — Revised. Emma’s Hope Book. See also her and her daughter Emma’s other posts about presuming competence here.
Both
Brenda Rothman (2012). How to address parental fears about autism. Originally posted on Mama Be Good, guest-posted on Thinking Person’s Guide to Autism. Since both under- and over-pushing are often driven by fear, these questions can help parents meet their children where they are right now.
