Starting Points for Understanding Autism [Repost]

“With the right strategies and understanding in place, most autistic people can thrive. Without them, life can be incredibly difficult, and much of what we have to give to the world gets lost. I wouldn’t change very much about my brain — I mostly like being who I am. I would, however, like to change many things about this world and how it deals with people who think differently.”

Autistic people are often misunderstood. Clinical models of autism often focus on the outward behaviors of autistic people, emphasizing their inferiority to neurotypical behavior patterns. When this happens, autistic people’s inner experiences often get lost, and neurotypical partners may lose sight of the ways in which they can best support autistic people in their lives. While the below account is just one autistic person’s experience, much of it is consistent with research (cited at the end). Specifically, Oolong describes how “monotropism” (attending to a few interests or concerns at a time) could explain some of the characteristic strengths and challenges exhibited by autistic individuals. Reading this account may help us to consider how supports, such as allowing more time for task transitions or greater control of the sensory environment, could greatly improve the quality of interactions between autistic and non-autistic people.

Starting Points for Understanding Autism

Me and Monotropism: A Unified Theory of Autism

Disability Wisdom Wants to Hear From You!

I write this blog for you, my readers, to learn about the disability experience. Now that I’ve passed the milestone of 100 posts, I thought this would be a good time to get your feedback! Please fill out this quick survey and let me know what kinds of topics you’d like to see addressed here, how often you’d prefer to see new posts, what you think is good about the blog, and how we can make it better! And, if you are disabled and want to contribute a guest post, email me at and let me know what you’re thinking!

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On Fleas, Bees, and the Presumption of Competence

If we put fleas into a jar with a lid, the fleas will, at first, jump as high as they can. But as they hit their heads on the jar lid, they will learn to jump only as high as the lid. After the lid is removed, even when the fleas are free, they will continue to jump only as high as they could before-and will never make their way to freedom.

I first heard this story about fleas 15 years ago, at a National Association of Blind Students meeting. Since then, I have met too many disabled people who have been trapped in metaphorical jars. People who have given up on their dreams, or who let others control their lives. Disabled people of all ages. Sometimes, they are still trapped under the jar lid when I meet them; other times, the lid is gone, and sometimes can’t even be named, but its effect remains strong.

This is one of the most heartbreaking things to watch. And, I think part of what makes it so heartbreaking is that these people were born with the ability to jump high. Someone, somewhere beat them into complacency. These situations are entirely preventable.

Sometimes the jar lids are made out of misplaced love or compassion. We may lower the academic standard for students with intellectual or learning disabilities out of a desire to shield them from failure or not “stress them out.” We may say we need to be “realistic” so we set limits on ourselves and each other. We might not let a person live independently or cross the street out of fear for their safety. Or, more blatant ableism may play a role. We may assume the person with a communication impairment won’t understand what we are talking about, so we exclude them or speak for them. We might discourage someone from doing a job thought to be impossible. And, in some instances, more nefarious abusive dynamics are what hold the jar lid in place.

Too many disabled people learn helplessness. But, that helplessness is not permanent. The human instinct to jump high, and the potential to do so, still remain intact. When we are nurtured out of the jar, we can learn to jump high again.

Perhaps the most powerful example of this I see is in the stories of disabled orphans adopted into loving families. I hear of parents adopting disabled children overseas from orphanages or other institutions. The children often come home with significant developmental delays from the poor living conditions and lack of attention provided in an institution. A child might come home unable to independently move or communicate. But, within a few months of coming home, through a lot of love, nurturance and targeted education, the child is moving around, using language, and beginning to control their environment. Although it may take years for these children to fully “catch up” to their potential, they often show much better outcomes than one might suspect.

How do we lift the “learned helplessness” that too often plagues those of us with disabilities? A key part of the answer is in the idea of “presuming competence” or “the least dangerous assumption”

When working across ability lines, there is often uncertainty about where a person’s capacities lie-as in the case of the developmentally delayed, newly adopted child whose potential most likely lies far beyond their present levels of functioning. When we aren’t sure what capacities a person has, we can “presume” that they are competent, or we can “presume” that they are not. If we presume competence, and it turns out that the person is unable to meet our standards, we can always adjust the standards or supports to accommodate this. However, if we presume incompetence and don’t give the individual a chance to show what they can do, we are placing a tight lid above their heads-a ceiling on their potential. That is why presuming competence is less dangerous than presuming incompetence-it’s the “least dangerous assumption”

Presuming competence is at the heart of the Disability Wisdom philosophy. When we allow disabled people to communicate for themselves and listen to what they have to say, when we respect privacy and dignity needs, when we use ordinary language, and when we treat people as experts on their own needs, we are presuming their competence. In an educational context, presuming competence means setting learning standards at a point far enough above present levels that the student is challenged, but not so high that they break. In the literature, the terms “presumption of competence” and “least dangerous assumption” are often associated with communication disabilities, such as autism, and educational settings. However, presumption of competence can apply to all disability types and all life stages. An employer who trusts an applicant’s resume, instead of questioning how they can do all the job tasks they have obviously done before; a doctor who directs questions to a disabled patient instead of their caregiver even if they are nonspeaking; and a relative caring for a 90-year-old with dementia, who respects that individual’s privacy and dignity, are all presuming competence.

“Presuming competence” does not mean forcing someone to meet nondisabled standards, or denying supports. In fact, part of presuming competence is trusting expressions of “I can’t.” That “I can’t” may be a permanent limitation (e.g., “I can’t see the blackboard”) or a temporary one (e.g., “I can’t stay in this room because my senses are overloaded”). In either case, presuming competence means trusting that individuals understand their own limitations as much as their own capacities.

The bumblebee shouldn’t be able to fly-based on commonly accepted assumptions about aerodynamics. Such beliefs might parallel the conventional wisdom about disabilities often spouted by medical professionals. Yet the bumblebee is unaware of human models and equations limiting its ability. By continually flapping its wings, through an alternate aerodynamic process, the bumblebee is in fact able to fly. By the same token, it is often through a combination of internal determination and external support that disabled people will far exceed the expectations of others. We may use different means, but we can achieve the ends we want for ourselves.

As I consider my brothers and sisters trapped in their jars, and my own jar too, I see the latent potential, in each and every one of us, to start acting like a bumblebee. We can all find our way out of captivity and start flapping our wings as we determine how to get to the places we want to go. To make this happen, we must consider a cultural shift in which we presume each other’s competence always, regardless of the abilities or disabilities we see. Only then can we create a world where all of us can fly free.

To hear a high-energy song that reminds me of the bumblebee’s dance, check out Bumble Bee by Zedd & Botnek.

Tips for People with Disabilities Entering Parenthood

This guest post comes to us from Ashley Taylor of Ms. Taylor is a parent with severe scoliosis. She hopes her writing and her website provide valuable information for others traveling the same path.

There are over 40 million Americans who live with a physical or mental disability. While older Americans are more likely to have a disability, 6 percent of Americans between the ages of 18 and 34, as well as 13 percent of those 35 to 64, said they had a disability in 2015. The Americans with Disabilities Act defines a disability and a physical or mental impairment that significantly limits a person’s activity. This definition includes people who do not currently have a disability but have a record of such an impairment.

If you are one of these millions of Americans, planning for parenthood will be more involved than those who do not live with a disability. While you may already live in a home with some accessibility features, many find that adding additional modifications makes it easier to get around the house when they start a family. And while all new parents should make financial preparations, there is a huge income disparity between those with and those without a disability. The amount of people with disabilities who live in poverty is three times greater than the number of those without one. Furthermore, the median income for families that include parents with disabilities is only $35,000, compared to $65,000 for families that include parents without disabilities. Because of this, it is even more important for new parents with disabilities to install certain financial safety nets that will protect their families in a worst-case scenario.

Financial Planning for Families with Disabilities

Parents with disabilities on average make less money and are more likely to enter poverty than parents without one. Making essential financial preparations can help families with disabilities live securely while saving enough for their goals. Keep the following tips in mind when going over your family’s financial plan.

A household budget tells you exactly how much you can spend on certain items and services in a given month. If your income goes up, keep your budget the same. Pocket the surplus in your emergency fund.

When it comes to buying gear for your child, it’s best to spend a little more for a quality item that will last through the years. Thoroughly research cribs, strollers, gates, and toys online before committing to an item to make sure your purchases are well-informed.
One savings account isn’t enough. Your family needs savings for emergencies, higher education, medical expenses, and retirement. You may also find it helpful to have smaller savings accounts for short-term goals such as a family vacation.
Having certain safety nets in place ensures your family will be financially set if you cannot be there to provide for them anymore. Life insurance policies can relieve the burden on your spouse should your home become a single income household. Look for a life insurance policy that includes burial and funeral insurance, which will help cover the cost of the funeral and other final expenses. 
Use any and all resources that will make parenthood easier or save you money. Your taxes fund resources for people with disabilities, so you have every right to access them.

Accessibility Features for Families with Disabilities

When it comes to being a parent, you want to make everything as simple as possible so things don’t become overwhelming. Even if your home already has certain accessibility features, there may be additional alterations that can streamline your home and make it safer for the entire family. Furthermore, while parents without disabilities have nothing but choices when it comes to baby furniture, parents with disabilities should either buy models that suit their accessibility needs or make modifications to standard furniture in order to do so.

Wider doorways make it easier for those with wheelchairs and walkers to move about, but that extra space also makes it safer when carrying a bunch of items. If preventing falls is necessary due to your condition, consider adding space to doorways in the home.
Appropriate lighting is very important for those who are visually impaired. However, excessive bright lights can be too harsh for an infant’s vision. A smart lighting system that allows parents to dim and brighten lights around the home with voice or app command makes it easier to get the right light when they need it.
The bathroom is often considered by many to be the most dangerous room in the house. Make bath time easier with accessibility features like a shower seat; hand-held showerheads; grab bars near the near the toilet, tub, and shower; a walk-in tub; hands-free faucets; and slip-resistant flooring.
An accessible crib makes it easier for parents to reach baby without having to go over the railings. While these cribs come as-is on the market, they tend to be rather expensive. If you are on a budget, look into online tutorials that teach you how to take an ordinary crib from a big-box store and modify it to become accessible.
Additional storage can help busy families keep their homes as clutter-free as possible. Parents with disabilities are more likely to suffer from extreme symptoms of stress. Excessive clutter contributes to stress and can exacerbate anxiety and depression. Do a major clean out before the baby comes home to reduce clutter overall. Add storage around the house or wherever you can to hide those things you want to hold onto.

There are millions of Americans who want to be parents and just happen to live with a disability. Parenting with a disability isn’t much different than any other kind of parenting, but there are certain preparations to consider. Adding accessibility can make the home safer while reducing parental stress. Consider adding width to doorways, installing a smart lighting system, placing safety features in bathrooms, investing in an accessible crib, and adding storage to reduce clutter around the home. And since people with disabilities on average make less than those who do not, it’s vital to make plans that secure your family’s financial future. Stick to your household budget, create an account for each of your financial goals, invest in insurance, and utilize resources put in place to make life easier for those with disabilities.

The “Best IEP Team Meeting in the History of the World” Trilogy [Repost]

“Although it sounded good in theory, I wasn’t sure how on God’s green earth we’d put it into practice, but I knew that we had to. That it was time to begin to plant the seeds of self-advocacy — to introduce Brooke to the process, to allow her to begin to participate in what I fervently hope that someday she will lead. There had to be a way.” [Part One]

“As the recording played, I looked around the room. Every single person at the table was taking notes. Every one. They were writing down what Brooke was saying. The literacy specialist was crying. And it hit me. In that moment, the room was filled with the most important thing I could have asked for – RESPECT.” [Part Two]

“Not only does she need to know, but she needs to ultimately take ownership of the process. *She* has to be able to identify what she needs in order to make something accessible or comfortable or safe for herself, AND she needs to be able to ask for it.” [Six Years Later]

In the disability advocacy world, “IEP” can be kind of a dirty word. The Individualized Education Plan (IEP) is what gives disabled students their right to a public education. Yet the development and implementation of said IEP can be fraught with frustrations, arguments, anxieties for parents of disabled children, especially when parents and educators disagree on what’s best for the student. I hear about IEP struggles a lot. So I admit, when I saw a post in my Facebook news feed that said “Oh, my friends, this morning’s IEP meeting was nothing short of revelatory!” I at first thought the post was written sarcastically. But, it wasn’t.

IEPs can be weird for the students, too. I always felt like my IEP was an explicit reminder of how my education diverged from that given to my peers. Some of the goals seemed to not make much sense. It is weird to go to an IEP team meeting with your parents and all of your teachers talking about you-even weirder to be a little kid at Grandma’s house knowing that your parents and all your teachers are talking about you somewhere else. Fortunately, my IEP team meetings were relatively friendly. For some students, an IEP meeting means getting stuck in the middle between parents and teachers arguing about their educational needs.

Students should attend their own IEP team meetings, right? After all, the student is the most important member of the team. This makes sense in theory. But in practice, sometimes students aren’t invited. Other times, they’re invited, but they don’t know how to participate, or aren’t given the chance. Some students are invited, but choose not to attend because all the people arguing about their education is too much.

“Self-advocacy” is another weird minefield for disabled students. All humans self-advocate, even screaming babies. Disabled students are told that we should advocate for what we need. Yet in the same breath, we are told to obey authorities. If we self-advocate in the “wrong” way, we can get in trouble. This is especially true for neurodivergent students who don’t self-advocate in the typical way-nonspeaking students, or those whose speech is atypical. These students may have “behavior plans” in their IEPs that try to extinguish the very actions these students use for self-advocacy.

In the below triad of posts, Jess from Diary of a Mom shows us how her autistic 9-year-old daughter “Brooke” was introduced to the IEP process and formal self-advocacy. She shows us not only that it can be done, but how following Brooke’s lead created a culture of respect that flowed through the entire IEP team. In the third post, Jess tells us, six years later, how she and Brooke’s educators continue to collaborate with Brooke to foster her self-advocacy. Each post reflects the core belief that Brooke is a competent agent and that, ultimately, she will begin to take charge of her own environment. If more nondisabled parents and educators held this philosophy, the dreams of disabled students would be a lot closer to their grasp. Read the posts below: The Best IEP Team Meeting in the History of the World, Part One The Best IEP Team Meeting in the History of the World, Part Two The Best IEP Team Meeting in the History of the World, Six Years Later