Most of the loudest voices—that is, the voices that get listened to—on the subject of autism come from parent groups and doctors. Although some are good, many ignore autistic people—what do we know, after all? This can lead to very harmful things and a deep misunderstanding of what our lives are actually like. I encourage you to learn more, but please always consider the source. Is it an autistic person, or not? If it’s not, are they contradicting or belittling autistic voices and perspectives? That’s a giant red flag. Here are some resources to get started.
Don’t Listen to Autism Speaks.
Autism Speaks: largest Autism “charity” in North America. It’s almost universally disliked by autistics because it belittles us, defends parents who kill autistic children, spreads bunk science, and silences actual autistic people. This is the first time they’ve had autistic people in positions of power; only 4% of their budget goes to services for autistic people and their families (and most of that is for parents, not autistics themselves). They also fund research to develop a test similar to amniocentesis which will allow parents to abort autistic kids.
What you should listen to instead:
ASAN: The Autistic Self-Advocacy Network
This is Autistic people spreading awareness of Autistic issues. It’s usually a good first stop on any issue. Their facebook page is mostly links to articles about issues facing autistics, but you can also ask questions.
Autism Women’s Network
The Autism Women’s Network is focused on women because girls are under-diagnosed compared to boys. However, they have a lot of good resources that work for both genders. Their welcome packets (one for autistics, one for parents of autistics) are particularly helpful.
Documentaries, movies, books, bloggers
“Vectors of Autism”—documentary about Laura Nagle, an autistic architect, available to watch online.
“Temple Grandin”—excellent HBO movie about Temple Grandin, an autistic woman. She’s also a great author who’s written and talked a lot about the subject.
Look Me In The Eye: My Life with Aspergers by John Elder Robinson. Memoir of an autistic man.
Neurotribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman.
Lydia Brown—Autistic Hoya. Lydia Brown blogs about what it’s like to be autistic, and how race and gender (she’s an Asian woman) affect that.
Sparrow Rose Jones–Unstrange Mind. Sparrow is autistic, has written two excelllent books about autism, and her writing has appeared in several anthologies about autism. She also gives talks about autistic issues.
Cynthia Kim–Musings of an Aspie. Kim is a blogger who has written books about autism from the perspective of someone who was diagnosed as an adult, and has contributed to various autism anthologies. Start with her Essential Reading List, which organizes her posts on the core issues of autism and Aspergers.
Blog posts and articles
Understanding the Spectrum. I hear a lot of people misinterpreting or misusing the term ‘autism spectrum’. So for Autism Acceptance week, I decided to make a comic to help explain the term and how it affects things.
How Autism Affects My Life In Ways You Can’t See. I love all of those events and environments, but the reality I live with is that I am often forced to choose very carefully how I spend my time and my sensory resources. Perhaps that’s why when you see me, I appear to be fine. What you think you see is someone not affected by autism, when in reality what you see is someone who has given up dozens of opportunities to leave home so I can be seen in the few places you always see me.
The Neurodiversity movement is the acknowledgment that people have different types of brains, and that all people–regardless of brain type–should receive the support and accommodations they need to live and thrive.
N is for Neurodiversity. Unlike neurodiversity, which is a fact, deciding what we should do about it is an opinion. And different people have different opinions about what we should do about human neurodiversity. Once we can identify the ways in which some brains differ from other brains, should we segregate, isolate, and discriminate against certain identifiable groups of brains? Or should we believe that different brains don’t mean different quantities of humanity, and fight to make it easier for anyone with any brain to take advantage of all the opportunities society offers?
I’m a Pro-Neurodiversity Advocate. Here’s What Our Critics Never Get Right But Don’t Seem to Care About, Either. I think it’s great that people want to analyze the neurodiversity movement. But sometimes they open their mouths without knowing a damn thing about the subject.
There is a wide, vibrant, awesome community of autistics and we’d love to have you. Whether you’re verbal or nonverbal, have typical autism or atypical autism or Aspergers or any other form of the condition, we care about you and would love to get to know you better. If you live in a well-populated area, there may be a group physically near you. Check with the Autistic Self-Advocacy Network or your national equivalent for local chapters.
If you can’t find anyone near you, or prefer to interact with others via the internet, there are many of us online. You can find us on any social media platform, #actuallyautistic. Check out some of the bloggers and vloggers and tumblrs I link to, and then spread out from there.
Many hobbies and interests have special autistic groups within them if you look. For example, some online games have autistic-only servers. (I know they exist, but not being a gamer myself, I don’t remember which ones.)
You are not alone. You are awesome, and we welcome you.
Self-Care 101. An interactive guide for helping you figure out what’s wrong when you’re feeling bad.
“Help! I seem to be getting more autistic!” The fact that some autistic people lose abilities with age is well-documented, but it is not always discussed in clear ways. It is clouded by terms like regression (which implies that loss of skills is growing backwards), functioning level (which implies that all functioning is affected at the same level and that this can be measured in a linear fashion), and more autistic (which implies similar things to functioning level). When autistic people ask organizations about it, we often get confusing answers — for example, when I asked one representative of a major autism organization about being an autistic person who lost some movement skills in adolescence, she said, “Yes, there is such a thing as late-onset autism,” as if I had not been autistic before this happened.
For Parents, Teachers, Therapists, and Others
Inclusion and Acceptance are the Most Effective Autism “Therapies.” In trying to do my best to care for my son, I’d listened to these so-called “experts” over my own intuition and intelligence. And let them define him and his actions in these gross, bizarre, animalistic terms. In psychology, it’s called “pathologizing” — when you make everything a person with a specific diagnosis does seem like a dysfunctional act that is a symptom of their diagnosis, even if it is something that many people of the same age are doing.
Autistic Neurology and Behavior. Autistic people use behavior just like people who are not autistic. Basically, when a problem is encountered, people behave in a way so as to fix the problem. We all do this, whether we are autistic or lack autism! However, we live in a majority-is-the-norm society. This means that the behavior most individuals employ to solve day-to-day problems is considered the norm. We call their behaviors solutions.
Just like everybody else, when autistics come up against a problem, we employ a solution to remedy that problem. Our behavior, even though it is a solution, it is called “a behavior” meaning it is bad behavior. This is how it often works out that those around us want to fix what they have defined as the “problem behavior.”
When Church Hurts. For my son, the sensory experience of going to church is something similar to torture (I wish I was exaggerating to make a point).
Listen Up, Allistics. A meltdown is a defensive response, not an aggression. Meltdowns happen because we are in pain – either the direct sensory pain of too much light or too loud noise or terrible textures or what have you, or the emotional pain of just being overwhelmed by so much input we can’t handle it, of being told were horrible burdens who can’t love, etc. Meltdowns are born of pain. In particular, they’re what happens when we can’t escape that pain. Y’all know about the fight-or-flight response? Well… that’s what a meltdown is. And all of those stories of autistic people destroying things or hurting themselves or lashing out at people? That’s what happens when “flight” is no longer an option. That only leaves “fight.”
Behavior Plan For Parents of Newly Diagnosed Autistic Children. Your feelings about autism are constructed by living in a world that fears and stigmatizes disabled lives. Your distress about an autism diagnosis are most certainly because of these unhealthy messages. Please remember that your behavior in regards to your child’s diagnosis is a choice. Signing this behavior plan means that you will always put the dignity, autonomy, and love for your child above buying into the dominant narrative of tragedy or the belief that autism is something that the Autistic person is doing to you.
Autism 101: Hating Your Autistic Child. Autism isn’t a thing that exists to hate. It does not exist outside of its expression in actual human beings. We’ve just created an idea and given it a name and clustered definition, representing a shared way of being for some people. The only place autism exists is in people — it exists as real people. Instead, you are hating your child, despite your words and beliefs to the contrary. And you are teaching your child self-rejection and self-hatred.
The letter I wish I had read when my children were diagnosed with Autism. In hindsight, I’m convinced there were other – more helpful – things I could have done instead. Here is what I now think it would have been helpful for me to hear.
Caregiver Burnout. It makes me so sad to see people using this term to describe themselves and all that it implies about their Autistic children. And families. It makes me sad that these stories of hardship dominate the conversations about Autism because it gives the impression that there is no alternative to this way of life–to this emotional state of being when you’ve got an Autistic family member. The media isn’t interested in shining a light on those families, families like mine, who have found a way to thrive and be happy. Content isn’t sexy. Happy isn’t sexy. Tragedy and misery are.
We Are Like Your Child: A checklist for identifying sources of aggression. The following is a checklist of questions to address when trying to identify the source of and alleviate aggression on the part of an autistic child or adult. It does not necessarily include every possibility, but is a preliminary checklist of, in our experience, some major primary issues that are likely to be related to behavior observed as aggression on the part of an autistic person. (To some extent, many of these issues can be related to self-injury as well.)
Help! This autistic kid is aggressive! When I’m contacted for advice concerning an aggressive autistic child, I tend to ask this series of questions. Here they are in flowchart form.
Understanding Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices. For people who have cognitive and communication differences, illness frequently presents as a change in behavior or function instead of a patient complaining of a sign or symptom. For example, a broken bone is not usually a hard diagnosis to make. A person comes in and says, “I fell, and I think I broke my ankle.” Their doctor does an x-ray and sure enough, you broke your ankle. But in situations where people are unable to effectively communicate the cause of their distress, it’s amazing how easy it is to miss something as obvious as a broken bone. If it is hard to notice a broken bone, imagine how easy it is to miss something such as a headache or heartburn?
Whenever there’s a change in behavior or function, it’s important to think that it could be a medical problem.
How TPGA’s Mods Failed Me. I am extraordinarily wary of any therapy/teaching/treatment/intervention that seeks to remove a coping-mechanism “tool” from the student’s range of options for dealing with a situation. Helping a child increase the total number of options available, identify situations where the set “frustration tools” might be useful, and choose the right tool for the situation, yes. Absolutely. But training a behavior out of a person remains to me utterly verboten.
Age Appropriate. I think the concept of age appropriateness can be useful for defending children from unreasonable expectations. On another hand, I’m Autistic, and I interact with other Autistic people. I know how “age appropriate” can be used as a weapon against us, and there are a couple ways this happens.
Autistic Culture: A Primer. Of course, “the autistic community” is not a monolith of unified opinions, preferences, or experiences, but there is a thing called autistic culture. And when it comes to autistic acceptance, the neurodiversity movement, and disability rights activism, there are some generally agreed upon principles that make up that culture.
ABA and Autism – the thorny problem of control and consent. The foundation that ABA is based on and grew out of, and radical behaviourism specifically, I personally find both reductive and deterministic. Behaviourism denies that human agency and genetics have a role in explaining who we are and what we become. And a fundamental problem with ABA is that it is designed to manipulate and control the behaviour of others.
Advice for Therapists from a Neurodiversity Advocate. Rather than treating autism as something that needs to be corrected, advocates want it to be seen as something to be accommodated, and that disability is largely situational. If someone is in a wheelchair, you can either focus on curing the reason they’re in the wheelchair and let them wait at the bottom of the stairs until you’re done, or you can build a ramp. Neurodiversity advocates want ramps for our brains. What exactly that looks like is still a work in progress, but I encourage professionals to embrace it. Work with us so we can live our best lives.
Why I Teach Poetry to My Autistic Students. When I first began teaching, in an after-school program in the Bensonhurst neighborhood of South Brooklyn, my assumption was that I would be primarily working with talented writers and rappers. And I did, but I also found that poetry struck a nerve with the autistic students. And I found that they were similarly talented, with a catch: I had to funnel every writing exercise through their particular area of passion.
What does helpful vs. harmful therapy look like? This therapy is not designed to raise a child who feels safe and comfortable with who they are, who feels safe to express their individuality, who is mentored in growing and developing into the best person they can be, expressing their true nature in ways others can come to connect with. The goal of being “indistinguishable with their peers” is a goal meant to make other people feel comfortable and happy. The goal of any therapy for an Autistic child should be to help the child feel more comfortable and happy. Therapy is not supposed to be about performing for others — it is supposed to help a person grow and express themselves in the truest, healthiest way possible.
Spoons and Splines: the Laws of Thermodynamic Autistic Motion. As many an aspie already knows, breaking up a task into steps and then prioritizing those steps can be one of the most difficult aspects of any autistic undertaking. (Ironically—or suitably—I almost gave up writing this post weeks ago because I couldn’t think of a title, and felt I couldn’t start writing without one.) Once those precious, illusive steps have started to materialize it can feel overwhelmingly important to keep and fulfill them in the “correct” order. And thus we come to the heart of today’s topic… Why in the world is it seemingly so difficult for autistics to get anything done?
Person-first or Disability-first? (“Autistic” or “Person with Autism”)
Executive Function 101: This is from the National Center for Learning Disabilities and is not specifically focused on autism, because executive dysfunction is a key part of many learning disabilities, especially ADD/ADHD. It’s still a good basic overview.
Neurowonderful’s explanation on youtube.
Neurowonderful’s blog post: When it comes to autistic people specifically, there are many reasons that self care, like showering or remembering to eat or drink, might be difficult. In my mind the three biggest reasons are sensory processing issues (SPD), executive function issues (executive dysfunction), and comorbid conditions (other disorders or conditions that are also present).
Musings of an Aspie. Executive function (EF) is a broad term that refers to the cognitive processes that help us regulate, control and manage our thoughts and actions. It includes planning, working memory, attention, problem solving, verbal reasoning, inhibition, cognitive flexibility, initiation of actions and monitoring of actions.
It’s Not Just Teachable Skills. I know how to do all these things. I really do. A program that’s aiming to teach me these skills may or may not reflect that, because no, I am not going to interact with people all day and still make be able to myself dinner or make a phone call to order delivery, and my ordering delivery online is iffy too. However, if you can find a way to test only whether or not I know how to do the thing, not whether or not today is a day when I can actually do it after considering various other factors, you will find (as I already know) that I can do all these things.
Other aspects of Autism Spectrum Disorders
Meaningful Echolalia. People without disabilities who mostly communicate in literal language are taken much more seriously when they make allusions and quotes. When someone with a disability communicates in exactly the same way, their communication is often written off as meaningless. It’s often seen as sensory seeking, or stimming, or a persversation, and having no communicative content whatsoever. This kind of communication is often ignored, and also often seen as a problem behavior to be extinguished by a behavior plan.
How to Reduce Meltdowns in the Ones You Love. Eight things family, teachers, and caregivers can do to reduce meltdowns in their autistic loved ones.
Applied Behavior Analysis from an Autistic perspective.
Quiet Hands. And when you’re autistic, it’s not abuse. It’s therapy.
A Cognitive Defense of Stimming (or Why “Quiet Hands” Makes Math Harder). Coined by Roy Baumeister, the term ego depletion simply means that we have a limited pool of energy to devote to both self-control and cognitive tasks. If we devote energy to, for example, suppressing temptation, we’ll be less willing to solve a difficult math problem or run an extra lap around the track. What the heck does this have to do with autism, you ask? A lot.
Motor Difficulties in Severe Autism. The expressionless faces, inability to make eye contact, the sometimes bizarre looking self-stimulatory behavior, and the inability to speak can make intelligent people appear not to be. As a person with autism, this is deeply frustrating. When I meet strangers for the first time, they often presume I need baby talk because of my outer presentation. I cannot stop my neurological forces from camouflaging my real essence. Inside there is a person who thinks, feels, jokes, and has a lot to say. On the outside, people see my odd movements.
My Thoughts on ABA. That’s what ABA does to Autistics: it advertises a “treatment” to make us “better”, to “recover” us from the “tragedy” of being neurodivergent, and “experts” praise this as if it is not abuse, while parents fight for insurers to pay for such abuse. Some people seem to think that when independent thinking Autistics – the ones who escaped the abuses of ABA, or the ones who can see behind the curtain of deceit – talk about how harmful this “treatment” is, that we are simply trying to make noise. This is not true.
Tackling That Troublesome Issue of ABA and Ethics. The first book I read on the subject of Autism was Catherine Maurice’s Let Me Hear Your Voice which details how ABA saved two of her children’s lives from Autism. (I use this language as it is the language employed by the author.) Catherine Maurice also likens Autism to cancer and ABA as the necessary chemotherapy. The whole acceptance model obviously is not employed when thinking in these terms, how could it be? And perhaps this is the single greatest problem when discussing ABA. Ethics is not a word one associates with chemotherapy. Why would it be? The person considering chemotherapy is doing so because to not do so is to face the very real possibility of death. When the language around autism becomes synonymous with cancer, one is saying to be Autistic is to have a death sentence. And while that may seem like hyperbole to many parents and Autistics, it is not so far from the truth when we were informed of our daughter’s autism.
Why I Left ABA. When I first became an ABA Therapist, I was thrilled. I was actually going to use my psych degree, get paid more than minimum wage, and above all, make a positive difference in Autistic children’s lives. Or at least, that’s what I thought. Now I look back, and the year I spent working in ABA is my single greatest regret.
No, You Don’t. When I meet parents of young Autistic kids, many of them say “I hope my kid is like you when she grows up!” But the truth is that they do not want their child to turn out like me. If your Autistic child turns out like me, you have failed. Your Autistic child deserves so much better than to turn out like me.
The Cost of Compliance is Unreasonable. Who does eye contact REALLY help? Does it help Evie when it seems aversive to her? Or does it help other people feel more comfortable with Evie?
ABA. Both people are using the term “ABA”, but what they are actually talking about are usually two different things.
The good, bad, and the ugly: my assessment of our experience with Applied Behavior Analysis (ABA). I’ve been told that what my daughter’s therapists do isn’t really ABA but is teaching. And to that, I say “great”! The thing is, if you change the name of it to what it actually is, individual tutoring or teaching, it won’t be covered by insurance. The medical industry believes that ABA is the only “proven” autism therapy (though proven for what , I’m not quite certain. It isn’t Lovaas ABA. It’s not. (Take care if you choose to Google Lovaas, by the way. Content is very triggery). I want therapy and treatment to be more inclusive of things that actually help autistic people.
Why I Oppose ABA as a Method of Instruction. ABA therapists talk about using things like bubbles, tickles and praise – but those things are not, in the long term, reliably sufficient to get anyone to comply with many hours a week of boring therapy. What does work is taking everything a child (or adult) cares about, and making their access to it contingent on compliance in therapy. That’s an awful thing to do to someone.
An Open Letter to Families Considering Intensive Behavioral Therapy for their Child With Autism. We are now victims of a nationally-known and high visibility ABA program provider. The ABA trainers sent to our home appeared very competent. They had supervisory responsibilities. They trained others within their organization. But over the course of a year’s treatment they deprived our son of needed developmental experiences. This treatment culminated when they destroyed his emotional and psychological health in a 25 minute intervention involving forced restraint and yelling while he cried and attempted to free himself. Our gentle son was very skillfully and purposefully pushed into unbearable and unmanageable anxiety. Our son now carries a dual diagnosis: autism and POST-TRAUMATIC STRESS DISORDER (PTSD).
A Challenge to Autism Therapists. I communicate by typing on an iPad with an app that has both word prediction and voice output. I also communicate by using good, old-fashioned letterboard pointing. If I had not been taught to point to letters or to type without tactile support, many people would never have realized that my mind was intact. My childhood was not easy because I had no means to communicate at all, despite my 40 hours a week of intensive ABA therapy.
Nice Lady Therapists. Nice Lady Therapists tell us that, whatever they do to us is by definition nice, and good for us. And that we like it, and that they love us, and that they are rescuing us, and that we are grateful. They have a brightly-decorated therapy room full of toys, and assure every adult they come across that ~their kids~ love therapy. They use a lot of praise and enthusiastic affect, and maybe positive reinforcement with stickers and prizes. They might call the things they have kids do games. Some of them really do play games. And every interaction with them is degrading in a way that’s hard to pinpoint, and hard to recover from.
Therapeutic Resources Other than ABA
ABA is NOT the only approach to autistic treatment and therapy. Therapy should be based on the specific needs of the autistic in question, and so types of therapy and treatment (if any) will be different for different autistics.
Real Social Skills has an excellent post on what types of issues need treatment or therapy, and what options are out there to address them: Resources Other than ABA.
Nonverbal Autistics with Blogs
There are a lot of Autistics who can type but not speak, and some of them have blogs. Here are links to a few of them:
Dr. Temple Grandin: “The Autistic Brain: Thinking Across the Spectrum.”
Autism and the Disability Community: The Politics of Neurodiversity, Causation and Cure. Sponsored by Emory’s Disability Studies Initiative, Ari Ne’eman, president of the Autistic Self Advocacy Network and member of the President’s National Council on Disability, delivers a talk on “Autism and the Disability Community: The Politics of Neurodiversity, Causation and Cure”
Autism and stubbornness. What you label as stubborn and controlling is often a solution to help us manage our anxiety and fear.
On Functioning and “Functioning.” Friend had far more overtly “autistic” body language than I did – which means that, in popular autism parlance, I was the more visibly “high-functioning.” But Friend was also far happier, self-confident, outgoing, and comfortable navigating strange places than I was – which means that, from a “can get things done” perspective, Friend was the more productively “high-functioning.”
Put another way: I’m better at “behaving myself” NT-style in public; Friend is better at actually getting things done.
Autism’s Lost Generation: an Atlantic article on autistic adults who were misdiagnosed all their lives.
Atypical Autism traits. Although “typical” autism has had a lot of attention, scientists are only now realizing that the same underlying symptoms don’t always manifest the same way in everyone. Because a high-percentage of auties with atypical autism are women, the symptom lists tend to be focused on women. Here’s a gender-neutral version.
“It shouldn’t have happened to you,” people say. Slight emphasis on you. Institutionalization, they mean. Or, “You were misdiagnosed.” And I remember the times I could not speak and had no keyboard, the times I slammed my head against a wall over and over until the staff looked for a helmet I couldn’t remove, and I am sadly grateful that they haven’t known a world in which communication and self-respect are possible only with blood and broken bones.
Autistic Regression and Fluid Adaptation. Why some autistics become less verbal/social.
Two Steps Forward, One Step Back. Researchers are starting to realize that “regressive autism” is a myth based on poor methodology. The story tells us about the failings of autism research — and the complexity of human development.
Autism on Tumblr
There are a lot of autistic people blogging on a social media site called tumblr. We share experiences and help one another work through issues and answer questions to help parents of autistic kids. Be warned, it’s not an easy site to use if you want to comment or ask questions, but if you’re looking for what autistic people are thinking—or to look at the advice we give each other and to parents of autistic children—it’s a good place to start. Here are some of the best bloggers on tumblr: