Tomorrow Is Too Long to Wait for Inclusion

The Pitfalls of Passing and Not Passing

a watercolor painting of a scene from the activision video game of pitfall. a person with a labcoat is swinging over a pond filled with crocodiles with a rainbow trail behind them.

By Kit Mead

I have never learned to pass—not fully. Sometimes I do look like a person you could see in the street or in the grocery store and never peg as neurologically different. But I never leave the house without my headphones to protect myself from the sensory assaults of the outside world. I tend to look harried and panicked in public with occasional handflaps. Sometimes noises escape. My stiff gait and mumbled words at the checkout counter give me away if it’s not apparent by now. I am autistic, with a few other comorbid diagnoses like anxiety. It renders the world too bright, too loud, too social at times. Other times, I am childlike and impish, scampering about with a few undignified squeaks. This is usually when I am comfortable with my situation.

I still pass better than many people. You might not guess I’m autistic, after all.

Both passing and not passing have their pitfalls. Despite social skills training, I never learned how to interpret conversations in a way that doesn’t make them slightly awkward unless you’re used to me. I simply don’t understand how to track the pauses in conversations and the times when I should speak and the flow. For other people, social skills training is more “effective,” depending on the goal. They pass, whether their training was with trained professionals or their parents.

Passing means you value us as slightly human:

As in music, I learned my part in life. I look you in the eye and smile. I have been taught to move through the world without making you uncomfortable. I modulate, adjust, check you for uneasiness, measure myself against memorized parameters every waking moment so you can pass me on the sidewalk without seeing disability.

You value me because I am useful in some ways now. You assume I will be more so when I finish my education. I run in your circles sans any illusion of membership.” –Larkin Taylor-Parker [source]

In the same piece, the author notes that it also takes “more practice to fake facial expressions than make a forty-pound horn play sixteenth notes. Tuba can be self-taught.” Learning to pass is often forced upon us: you shove us in a box, reshape us to take on the form of the box and then you praise us for seeming almost human. Personally, I do not experience this burnout and fatigue associated with passing. This is because I make little effort to do so.

But not passing also has its problems. I am not as visibly disabled as some of my peers. For me, the consequences are usually just stares and whispers from unknowing observers. In extreme cases, I had a shutdown on my college campus and the campus police were called – an unnecessary step. In my experience, it did not escalate further. This is not the case for many of my autistic peers, whose “infractions” – often no more than being visibly disabled and people of color – resulted in police using excessive force and/or hauling them off to jail. Not infrequently, my peers are written off entirely as not worthy of dignity, respect, human rights, the right to choose where they want to live, and education – and this is not an exhaustive list.

I am sometimes, but not always, human to you. I live in my own apartment, and I’m even adopting a cat, but I’m going to have to hire someone to come over once a month to help me keep my rented room clean and maybe help me figure out how to do dishes. I completed my college education, but it came with a price tag of more than money. I got thrown out of the dorms my first year. I struggled to graduate while my friends graduated at least cum laude, often resulting in feeling inferior and less worthy of the education and the school I was at. I went into burnout for parts of it, running on autopilot. My mental health tanked frequently.  I now work forty hours a week at a nonprofit that fights to protect the humanity of autistic individuals. Part of my success has been finding a job that lets me not pass as long as I do what I need to do. I have coworkers willing to prompt me out of my chair when I forget how to move.

And I might have a shutdown out in public that resembles a medical emergency and leaves me unable to speak to communicate my needs. Thanks to executive dysfunction, I recently lost my cell phone, but the new one coming in the mail will have Emergency Chat installed.

Whether or not someone passes seems to be the mark of how humanely our society treats us. When we pass, we are seen as human enough to run on the fringes of your circles. You permit us to do so. You expect gratitude. When we pass only sometimes, we do not run in your circles, but occasionally we are allowed to make appearances and seem human. We might end up mainstreamed in schools, or we might not. It’s iffy and situational and the decision is always in your hands. When we do not pass, ever, society  relegates us to the basement in segregated programs at school and in group homes. You  mourn the loss of someone you could teach properly. You lose any semblance of respect for them.

And this is why I am involved with neurodiversity… because our humanity does not have social skills requirements. It does not have speaking requirements. It does not have passing requirements. We are human. See us as such, and quit inventing societal games to keep us in line.

Photo Credit: Doctor Popular/Flickr

Kit Mead is an autistic disability rights activist originally from Atlanta, GA. They are now based out of Washington, DC, where they are the Technical Assistance Coordinator for the Autistic Self Advocacy Network. In addition to their work with ASAN, Kit has been published in QDA: A Queer Disability Anthology and maintains an advocacy blog. When not doing advocacy, Kit hangs out with their cat and writes poetry.

ABA and the Thorny Problem of Control and Consent

Editor’s Note: This post was originally written for a Canadian audience but the information is still relevant for the United States and other parts of the world. This post discusses applied behaviour analysis (ABA) as an autism “therapy” and includes references to both animal and child abuse. It may therefore be upsetting and/or triggering for some. A version of this article was first published at smallbutkindamighty.com.

Further reading

It may be odd to start a blog post with some suggestions for other posts you should read, but here we are. These posts make some points similar to the ones I have outlined below but much more eloquently. As is true for many of the things I write, the main reason I put together and finished this piece is because it was the most effective way for me to marshal my thoughts in relation to this issue.

ABA by Unstrange Mind – if you read only one thing on ABA and autism, this is the post to read. It’s a wonderful, eloquent piece with great examples and written by an autistic person.

Why I Left ABA by Socially Anxious Advocate – I found this perspective from a former ABA therapist fascinating and the post includes links to other excellent resources which address ABA and autism.

Would You Accept This Behaviour Towards a Non-Autistic Child? by Heidi LoStracco, one of the speech therapists behind the terrific AAC app, Speak for Yourself. This post is especially good when it gives examples of how ABA “programming” often does not support the goal of helping disabled children to learn to communicate.

Thoughts about terminology

When you parent or work with a disabled child, you instantly find yourself immersed in jargon and acronyms in relation to absolutely every darn thing (which sucks, by the way). When discussing “behavioural therapy” for autism, the two acronyms that most frequently come up are ABA and IBI.

In Ontario, the only provincially-funded autism “therapy” is IBI (intensive behavioural intervention). It consists of a minimum of 25 hours per week and is designed to prepare pre-school-aged autistic children to start school. IBI programs in Ontario typically resemble the Lovaas model quite closely. You can read this outline from the Geneva Centre for Autism about ABA and IBI and how they differ. Both my children attended an IBI program for two years. The therapists were uniformly lovely people who adored my kids.

ABA is both a broad term and a broad discipline. ABA principles can be found in fields as diverse as education, corporate consulting and animal training, as well as in many therapeutic settings such as those dealing with substance abuse.

So, is it ABA or IBI that I find problematic? Well, it’s both:

  • The foundation of ABA, and radical behaviourism specifically, I 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.
  • With respect to IBI programs, my general concerns with the control/compliance core of ABA come into a sharp, autism-related focus. Before we get into further detail on this, however, I’d like to share some thoughts aimed specifically at therapists and parents.

Some initial thoughts for BCBAs, other therapists and teachers

Please don’t be defensive or dismissive. I have often seen BCBAs (Board Certified Behavioral Analysts) respond to concerns about ABA and autism in the following ways:

  • “Oh, this is just the neurodiversity crowd, overreacting again!”
  • “Look, we’re not all like that!”
  • “You’re focusing on an outdated, outmoded form of ABA, we don’t do things like that anymore”
  • “I would never use aversives or abuse with children!”
  • “You don’t understand what ABA is. That’s not real
  • “I would never stop kids from stimming!”

The above examples illustrate someone who is deliberately focusing on the trees to avoid seeing the rather enormous wood in front of them. Criticism of ABA isn’t simply about the concrete examples of abuse that *DO* still occur – like preventing autistic children from stimming (see Julia Bascom’s Quiet Hands for an example) or the use of electro-shock as an aversive or forcing eye contact – although these examples are certainly very useful in identifying problematic therapists. There is a central question that all BCBAs must grapple with, and the author of Real Social Skills asks it very clearly: Can ABA be ethical as an autism intervention?  How do you reconcile the level of power and control therapists wield in terms of modifying behaviour and enforcing compliance with the rights of a disabled individual to personal autonomy?

  • Please be kind to critics of ABA.Many autistic people who went through ABA programs as children experienced lasting and profound psychological damage. Some of them suffer from PTSD as a result. A lot of autistic adults are angry and understandably frustrated that not only are their personal experiences dismissed, but when they seek to ensure that the autistic children who come after them do not suffer the same or similar abuses as they did, they are routinely insulted or ignored.
  • Don’t take criticism of ABA personally.It isn’t about you – if you’re reading this post for example, I bet you care deeply for the children you work with. Take some time to reflect on all your therapeutic practices – are they respectful and consensual? What can you do in relation to the power imbalance inherent in ABA practice? Are you teaching useful skills or simply instilling compliance?

Thoughts for parents

  • All of the considerations I’ve outlined for therapists above also apply to parents. Don’t react defensively. Don’t take criticism of ABA personally. And especially, be kind to the autistic people who have taken the time and effort to outline their concerns in relation to ABA. Autistic adults want the best for your autistic children and yet I’ve seen some parents be incredibly cruel to autistics, a reaction I will honestly never understand. These are the people your children will be as they grow older – why are you lashing out at them?
  • Focus on helping your autistic child develop their communication skills rather than modifying behaviour. I wrote an entire post on this a while back.
  • You’re not a bad or abusive person – I’m sure you want the best for your child just as I want the best for my children – but you need to keep an eye on the bigger picture to ensure your child is in fact getting the best.
  • Don’t panic about early intervention. Your child is experiencing developmental delays, not developmental stasis. One of the greatest gifts you can give your child is the time and space in which to develop. Expecting a 4-year-old to work full-time hours in IBI might not be your best option.
  • When discussing concerns in relation to ABA, a common reaction from parents is, “But it works!”  Please bear in mind a couple of things before rushing to say this:
    • What do you mean, exactly, when you state that ABA has “worked?” If you mean that ABA has turned your autistic child into a compliant child who behaves like a typically-developing peer, then you may in fact have a time bomb on your hands. Lots of autistic people have learned to “pass” as neurotypical – it almost always leads to a breakdown or burnout of some kind later in their lives.
    • The ends should never be used to justify the means. Even if ABA has taught your child a useful life skill, if it was done in a way that was abusive (and yes, I consider a violation of a child’s autonomy to be abusive) then you have simply created more problems for your child (and therefore yourself) later on.

The problem of history

Undoubtedly, someone is going to argue that this isn’t relevant because “ABA isn’t like this now.” Well, I have two history degrees, so arguing that the past is irrelevant isn’t going to cut it with me. I believe it’s important that people know the ethics, ideas and practices of those who developed behaviour modification because it explains the key reasons as to why ABA is still problematic now. Having said that, this is a potted history which, by necessity, means it will be brief and incomplete and certainly nowhere near comprehensive.

Pavlov

Most people are aware of Ivan Pavlov’s experiments on dogs, for which he ended up winning the Nobel Prize. Pavlov observed that dogs would begin salivating in anticipation of food, and his subsequent experiments demonstrated the concept of conditioned or conditional reflex by showing that over time, if a bell was rung when food was presented, the dog would begin to salivate upon hearing the bell. This model, called classical conditioning, provided a basic explanation for how organisms learn; in the 20th century, this explanation became the foundation for behaviourism.

What many people aren’t aware of are the ethical concerns surrounding Pavlov’s experiments. Withholding food (actually meat powder) from the dogs was a vital part of the experiments, but Pavlov also operated on them, externalizing their salivary glands and parts of their digestive system. In later experiments he even sought to induce neuroses in his animals. As behaviourism developed, the dodgy ethics would continue.

Diagram showing how dogs were modified to externalize their salivary and digestive systems.

B.F. Skinner

Behaviourism arose as a branch of psychology that concerned itself with observable behaviour. In their laser-like focus on outward behaviours (rather than thoughts, feelings or other variables) that can be observed, recorded and measured, the behavioural therapists of today demonstrate how behaviourism is still at the heart of everything they do.

There were many scientists involved in developing behaviourist ideas and principles, but the reason I’m focusing on B.F. Skinner in particular is because of his work in relation to “operant conditioning.” Pavlov had demonstrated how many of the behaviours we acquire are reflexive. In contrast, Skinner was more interested in determining how to create or teach new behaviour. Skinner’s work is why ABA therapists focus on:

  • Antecedents are what happened before a particular “behavior”
  • Consequences are what happened after the behavior occurred. If you’ve ever collected data in connection with ABA therapy, you’ll be familiar with these terms (the acronym ABC is derived from Antecedent, Behavior, Consequence).
  • Positive and negative reinforcement
  • Escape and avoidance
  • Generalization

What many people aren’t aware of now are the ethical and moral concerns surrounding Skinner’s work and ideas. For example:

  • Skinner believed that human free will, human dignity, even human thought, were illusory.
  • One of his primary goals was to devise methods for the control of human populations. Sure, he sought to do this for noble reasons – like many living through the Cold War Atomic era, he was preoccupied with the idea of humanity destroying itself – but given his focus on benign totalitarian control as a solution, it’s hardly surprising that campus students once hanged Skinner in effigy.
  • You don’t have to be an attachment parenting advocate to see problems in the idea of putting babies in boxes in order to give parents a break.

Ivar Lovaas

In over-simplified terms, Lovaas, like all behaviourists, was firmly on the “nurture” side in the “nature vs. nurture” debate. While John Watson felt he could raise any child to be a doctor, lawyer, artist or thief, Lovaas claimed he could have raised Hitler to be a nice person. Behaviourism has this tendency to deny, or at least underrate, not only human free agency but also genetics.

Any discussion of ABA and autism must include Lovaas, because he was the first person to develop ABA principles specifically as a “therapy” for autistic children – the same therapy that became IBI. A 1965 feature in Life magazine (huge **trigger warning** before clicking on that link) provides us with an outline of what this “therapy” looked like at the time. The obviously abusive components involved electric shock, slapping and shouting but there is also a quote in that piece that goes to the heart of the problem with respect to the Lovaas model:

“Lovaas is convinced, on the basis of his experience and that of other researchers, that by forcing a change in a child’s outward behavior he can effect an inward psychological change.”

What ABA for autism looked like in the 1960s.

 

Lovaas’ goal was to create autistic children who were outwardly “indistiguishable from their peers” in order to inwardly “cure” their atypical neurology. Far from a that-was-then situation, Lovaas was active in the field into the 1990s (he died very recently in 2010).  Neurodivergent K does a great job of outlining the negative, real-world impacts of “indistinguishability” on autistic people – how it results in denial of disability (and therefore a withdrawal of much-needed supports and accommodations) and how autistics eventually burn out from the exhaustion of “passing” as neurotypical. It’s not coincidental that Lovaas’ research has also been used to underpin the abusive concept of “reparative therapy” for homosexual and trans individuals. That fact alone should give us pause before deciding to use the same principles to “cure” autistic children.

If all you’re focusing on with Lovaas is the obvious physical abuse autistic children underwent as part of his original ‘program,’ then you’re missing the point: IBI is based on a fundamentally unreasonable and damaging assumption – that children with a fundamentally atypical neurology can be taught to act normally” and by so doing, they will somehowbecome normal.”

The problem with animal behaviourism

The first time I encountered ABA was actually when I took my puppy to training classes a long, long, time ago. One of the first things we were taught was how to use a bridge. In our case, we used classical conditioning concepts to teach our pups that when we said the word “yes,” a food treat was coming. It enabled us to provide immediate reinforcement that the pup had done something right, even if she was at a distance from us.

If you’ve watched the documentary Blackfish, then you’ve seen SeaWorld trainers use a bridge – in their case, they use a whistle to let a killer whale know that they’ve correctly performed a requested behaviour. In the film, former trainers speculate that Tilikum may not have heard Dawn Brancheau’s whistle during the last routine they performed together before he killed her.

In the companion book (which I highly recommend), Death at SeaWorld, I recognized more ABA techniques at work. For example, orcas in captivity routinely have their teeth drilled (click on this link for more information in relation to this barbaric practice). Trainers described how they would condition the whales to accept having their teeth drilled in a way that was exactly the same as the procedure an ABA therapist advised for cutting my son’s toenails:

  • Show them the drill (or nail scissors) and reward calm responses with food
  • Turn on the drill (make the nail clipper sounds) and reward calm responses with food
  • Place the drill (scissors) nearer and nearer and reward calm responses with food
  • The basic approach is to gradually increase exposure to something frightening and to positively reinforce the ‘correct’ response.

In the SeaWorld example, ABA is being used unethically to force compliance with something that is made necessary solely by captivity. In my example, sometimes my sons have to do things they don’t like (cut their toenails, brush and cut their hair, clean their teeth). A rigid ABA approach would teach them that they had to suppress their sensory issues in favour of compliance. A more ethical approach, I believe, is one in which I might use ABA techniques like positive reinforcement (other than food), but I also strive to reinforce my kids’ autonomy. If a necessary task is hard for them that day, we make it quick or break it into chunks. If they are having an easier time, we talk about what exactly is hard for them (talk when they feel good, not when they’re in crisis mode!) so I can both understand them better and help them more effectively. If they are having a good experience, it’s the best time to explain to them why these things are important. I also give the boys as much choice as I can (they choose their toothbrushes, hair brushes, whether we use clippers or scissors, toothpaste, etc.).

Simon Baron-Cohen, a psychologist whose work typically runs counter to the experiences of autistic adults, recognized that behaviourism has an ethics problem and used captive orcas to illustrate his point. I also find orcas in captivity to be a useful way to help people understand how injurious ABA can be to autistics, even if it “works” and isn’t considered “abusive.”

  • With respect to both orcas and autistics, we equate the capacity to speak with a capacity for intelligence.
  • We expect orcas and autistics to function in an artificial, harmful environment. SeaWorld places Orcas in a concrete bathtub in which they not only have insufficient room in an unnatural, acoustically dead environment, they are also subject to higher forces of gravity and UV radiation exposure than they would be in the wild. We know that autistic people typically have challenges with respect to auditory, sensory and motor processing and yet IBI environments replicate the sensory environment that kids encounter in schools (the whole point of IBI is to train autistic kids to be “school and table ready”). Autistic children are forced to train their bodies and senses to adapt to a hostile environment rather than taught self-regulatory techniques and how to advocate for supports and accommodations.
  • Both orcas and autistic children are placed in unnatural social situations.Orcas are social animals who live their entire lives in the wild with their mothers and other family members; in captivity, not only are mothers and calves separated, but orcas are either left alone or placed within groups that are both artificial and stressful for them. In IBI, our kids are so often made to do things they aren’t comfortable with – stimming is suppressed in favour of “table ready hands,” they are separated from the people and things they enjoy, “comfort” with groups of people is enforced and they are trained in “social skills.”
  • Both orcas and autistic kids are asked to perform unnatural behaviours, over and over again.In the same way that orcas in captivity are asked to perform behaviours they don’t do in the wild, autistic children in IBI are expected to continually perform behaviours that are either unnatural for them (like forced eye contact) or pointless, other than to test and ensure ongoing compliance (“touch your nose”).
  • Placing orcas in captivity leads to psychological damage, self-injurious behaviour and aggression, both between orcas and towards trainers (according to this report). Autistic adults have written about how traumatizing ABA intervention was for them (in the short, medium and long term). We simply have to acknowledge that, to the extent our autistic children express “problem” behaviours, this may, in certain cases, be the result of the stress and/or trauma they are currently experiencing or have experienced in the past as part of ABA programming. Responding to their challenges by again focusing on ABA-solutions and behaviour modifications is only likely to make the problem worse.

Image is from an excellent Amy Sequenzia post about talking to Autism Advocacy organizations. Click on the picture to read.

The problem with a focus on control and compliance

I am not in any way asserting that ABA is useless or uniformly harmful – in fact, when my children were on the waitlist for IBI, I learned a number of techniques and strategies from ABA therapists that were extremely useful in helping me understand my children and teach them life skills. In fact, if I could make my decisions over again, I wouldn’t put my children into IBI, but I would still choose to learn about ABA strategies and techniques, such as:

  • data collection
  • pairing
  • planned ignoring
  • chaining and reverse chaining

In talking about the problem of compliance, I’m not advocating that we let our kids go full-on Lord of the Flies – in the case of my children, we still have rules, there are still things that the boys have to do even if they would rather not (like cleaning their teeth), and there are often things they want that they don’t have unlimited permission to access. The issue I have is that compliance for compliance’s sake is drilled into autistic children – and it’s not just sufficient for children to comply, they have to do it unquestioningly.

An example can be found in this YouTube video.  As the mother explicitly says, the point of this isn’t to teach a skill or anything useful: “You’re not teaching them new information, you’re teaching them to be compliant.”

This video is a great example of a parent who, I believe, loves her child very much. Her intentions are certainly good ones (she talks about keeping kids safe in the community and giving them the ability to pay attention in school), she’s not using any aversives, and she doesn’t even raise her voice. But she’s infantilizing her son (remember, he’s a 29 year old man), and by teaching him to be unquestioningly compliant to authority figures she has turned him into an easy target for abuse by others.

This is Skinner’s ideal of control made manifest – and it scares the heck out of me.

Image is from a Tumblr post that also provides some (terrifying) data on the prevalence of abuse of disabled people. Click on image to see post.

The problem of consent

I want to address consent in more detail in a future post—but for now I’d like to explore the issue in relation to ABA and autism therapy. When you have a program that, at its core, exists to create control and enforce compliance, then you are teaching autistic children something that will ultimately make them fundamentally unsafe.

A friend recently pointed me to this article, which does a great job of outlining a number of practical things that parents can do to help their children understand the meaning of consent. Coincidentally, it’s also a laundry list of things we routinely deny to developmentally disabled children. Not all of this can be blamed on ABA of course; ableism is widespread and deeply rooted in our society. But in its focus on control and compliance, I believe that ABA programming runs completely contrary to best practices for teaching children about consent.

  • Asking permission. I know of a nearly-10-year-old autistic boy who kisses peers, adults, and even strangers at random. In line with the way we tend to infantilize the disabled, the boy’s teachers and therapists think this is adorably cute behaviour – no consideration has been given to teaching him that he needs consent from the other person before he touches, hugs and kisses
  • Disabled children and adults are denied personal autonomy. Flopping to the ground is seen as “non-compliance” in ABA programs, and children are often physically moved to where they are “supposed to be.” Hand-over-hand is routinely used to enforce compliance with instructions.
  • Disabled children’s right to privacy is not respected.It can take developmentally disabled children a lot longer to learn toileting and grooming habits, and continence and self-care are often areas in which they will continue to need support as adults. But we don’t recognize that disabled children have the same right to privacy as their typical peers. For example, how many parents, teachers or ABA therapists do you know who ask autistic children for permission before helping them with the toilet or changing their underwear? Autistic children are learning that adults have an unquestioned right of access to their genitals. This is unconscionable given that these kids are already more vulnerable to abuse than their typically developing peers.
  • The myth that autistic people lack empathy and ‘theory of mind’ is pervasive and damaging.It feeds into the idea that autistic people aren’t people – which, of course, makes them an awful lot easier to abuse.
  • We abuse the concept of ‘no’ and ‘stop.’Not only does ABA programming fail to honour the right of disabled children to say ‘no’ or ‘stop,’ we often don’t even provide autistic children with the means to say ‘’  You can read here how ‘no’ and other phrases were the first things I programmed into my non-speaking son’s AAC app. In addition, disabled children usually hear ‘no’ and ‘stop’ an awful lot more than their typically developing peers. Our misuse of these words teaches disabled children that these words can be ignored.
  • ABA programs often force physical contact. Forcing eye contact and using hand-over-hand are examples of how we pressure disabled children to do things with their bodies that make them uncomfortable.
  • Autistic people can’t read social cues the same way that allistic (non-autistic) people can. Instead of forcing autistic children to learn the meaning of facial expressions and non-verbal cues by rote, why aren’t we providing them with alternate strategies that would also help both them and their communication partners? Checking in is good example; rather than assume I know what he’s telling me, I check in with my non-speaking son about the facial expressions and gestures he uses by asking him questions. There’s no reason why I can’t teach my other autistic son, who is verbal, to do the same and check in with his brother and others with questions like, “I think you’re happy, are you happy?”
  • ABA programming is rigid, regimented and controlled by therapists. It’s true that autistic people typically love routine, but we need to teach our kids how to make choices, and to do that we need to give them those choices with a certain measure of control.
  • We put limits on disabled adults (especially developmentally disabled adults). We don’t see them as sentient, sexual people, so it’s hardly surprising that disabled children are routinely left out of health and sexuality classes.

Why government funding for ABA therapy is problematic

We need funding for programs that benefit all children with developmental disabilities.  We need programs that provide them with support and teach them skills based on their needs rather than some arbitrary functioning label.

Children with communication disabilities like autism also desperately need ongoing access to those with specialized assistive tech knowledge and experience in teaching and using AAC. Using my non-speaking son as an example:

  • When he was in IBI, his therapists would only use PECs (Picture Exchange Communication system)—he wasn’t exposed to any other AAC options.
  • His therapists would move his PEC cards around to ensure that he had “really learned” his vocabulary, ignoring the importance of motor planning for success with AAC
  • They continued to focus on trying to teach him to speak, rather than teaching him how to communicate.
  • My son is now nine years old. He hasn’t seen his school SLP in a year and has never had an assistive tech evaluation. He completely relies on me for AAC support.

We need to do better than this. We need to stop focusing on behaviour, control and compliance and start focusing on communication, autonomy and consent. We need to start seeing our disabled children as the human beings they are and start giving them the respect they deserve.

Photo Credit: Matt Beckwith/Flickr

Deanne Shoyer is a full-time mother to her 9 year old autistic twin boys who also writes about autism, neurodiversity, history, books, apps and crochet whenever she can find the time. You can find her at her website, smallbutkindamighty.com

 

Another Take on Autistic Cultural Compentency

Cultural Competence

By Lydia Wayman

In William Stillman’s February, 2014 article on the Huffington Post titled Autism: A New Cultural Competency, Stillman uses the term Autism Cultural Competency to refer to the idea that the time has come for our culture to build its competence in how it approaches autistic people.  He says that our culture misunderstands and misinterprets those of us whose brains cause us to behave differently than most, and that we would do well to learn to make “compassionate accommodations” for those with differences.

I could not agree more with Stillman’s suggestion.  Yet, not in any kind of opposition but more of an altogether different direction, I read the words Autism Cultural Competency and took them to mean something slightly different.  What if—not instead of building our culture’s competency in autism but, in addition to it—we helped parents and professionals to build their competency in autistic culture?  What would be the result of an approach to autism that was founded on respect for the cultural mores and codes of autistic people?

Anyone who has spent time around a group of autistic people knows that we do, indeed, have our own culture.  As an autistic person, I try to decode the way our minds work in each of three areas so that parents come to an understanding of our ways rather than look at us with confusion, pity, or an aim to “fix” us.  Through this new understanding, parents come to realize that a relationship with an autistic person should be based on respect for our ways, just as the relationship with a person from another country deserves respect for their own culture.  I define autistic culture as having three components: our developmental trajectory, the way we relate to other people, and the way we relate to the world around us.

First, the autistic developmental trajectory directly informs the way we establish our culture.  Autistic people do not have a delay in development.  If that were true, we would follow the typical path but do so years later than typical people.  Rarely is this true.  Instead, we follow an altogether different path of development, one in which we gain skills in an out-of-order fashion,  display amazing gifts and surprising deficits, and in which we tend to have bursts of developmental followed by periods of lull.  As an autistic young adult, I am a great example of this uneven progress; I am finishing my Master’s degree in English and creative writing, yet I cannot cross a street without help, struggle with independent living skills, and possess a strong affinity for anything Disney or Hello Kitty.  This spike-and-valley development may be atypical for most people, but it is a totally typical way for an autistic person to develop and sets the stage in each individual for the culture we build together.

This different trajectory means that autistic people do not relate to other people in a typical way.  In groups of spectrumites, there are several differences in our actions  First, there is a deep respect for one another’s needs.  Some of us are very highly in tune to others’ discomfort; some of us aren’t, but, in that case, the moment a person speaks up about any kind of problem, whether physical, emotional, or sensory, the group dynamic immediately changes and attends to the person’s needs.  Autistic people also tend to relate on different levels.  Often, we prefer to communicate via computer chat, because it allows us to express our thoughts more clearly and relate to the other person.  We have built lifelong friendships over Facebook.  When we are together in person, we tend to be quieter (unless a topic of special interest comes up, of course!).  We know the value of quiet presence and support.  We attract stares when we’re in groups, and I want to say to those staring: Come join us, and find out what you’re missing.   Many parents put their children in social skills groups to learn to socialize like typical children; there is value in learning the skills needed to get by in this world, but, out of respect for autistic culture, it is important to allow the child opportunities to socialize like the autistic child he is, with other autistic children.

Finally, autistic people relate to the world around us in a unique way.  We are highly sensory-based in the way we interact with our environment.  We smell toys, pet cats with our faces, and spin just about anything, including ourselves.  Parents often seek to teach us to play with our toys the right way; I cannot fathom why there is a “right” way to play and to have fun, when play is about learning through fun experiences and fun is clearly based on individual preference.  As an autistic person, it is important for us to learn through our senses, because having the ability to calm ourselves through them is a key skill for an autistic adult.  We cannot stim the day away, but stopping our stimming so that we can listen and learn is actually doing more harm than good; our stimming allows us to calm our bodies so that our minds can engage.

The time has come for parents and professionals to become competent in autistic culture and build relationships based upon it; the result will be a sense of peace for the parent, a sense of contentment for the child with who he is and how his mind works, and a much more positive relationship between the two of you.

Lydia WaymanLydia Wayman is an autistic young adult and advocate. She has her B.S. in Elementary Education and will finish her MFA in English and Creative Writing in November of 2014. Lydia combines professional knowledge with personal experience to reach parents and professionals through her blog, books, articles, and speaking engagements. She also works part-time at a nonprofit autism resource center and enjoys mentoring girls on the spectrum. Her message is that people are awesome not despite their differences but precisely because of them.

10 Surprising Things Parents of Autistic Grads Must Know

10 Surprising Things

By Kathy Porter

Ready or not, you will soon be the parent of a high school graduate. If your son or daughter is on the autism spectrum, like mine, you might feel a tiny bit scared underneath all the euphoria of this wonderful time. Behind you trail 18 or so years of priceless memories—an uneven mix of happiness, frustration, extreme awfulness, fun adventures and educational milestones.

Ahead of you is a world of transition: the in-between stage that prepares your teenager for adulthood. The good and the bad news? There is no road map for what comes next. I know because 10 years ago, my son graduated from high school. Two years later, I searched desperately for that road map because he didn’t seem to be moving forward. Nine years after that, I realized that my family had cobbled together a hard won road map of our own.

Sure, there were days when we flew by the seat of our pants, dark nights when we didn’t have answers for the questions we’d learned to ask. We also had days when everything fell into place or when someone reached out to say, “Of course I’ll help you!”

Part of our story was finding out that despite his Asperger’s Syndrome diagnosis, our son didn’t qualify for a service coordinator after high school. He was, however, eligible for educational funds which would one day be a fantastic resource.

But right out of high school, diploma in hand, all my son wanted was a job and a car.

That decision put into play thousands of steps and an infinite number of decisions bringing him to where he is today. Looking back on everything he’s accomplished, I see 10 surprising things that I believe every parent of an autistic teenager transitioning into adulthood should know.

1. Learn to outsource

Let technology and practical choices work for you. Outsourcing is a pretty savvy time saver plus it takes the drudgery out of some necessary chores. Be smart and teach this to your teenager.

I’ll never forget the look on my son’s face when he found out that he didn’t have to type his own resume. Don’t get me wrong. He assembled the content. I wrote it all down. Then we hired a virtual assistant to format and type it. Once we had the template stored in a computer file, updates were easy.

2. About those life skills

Don’t accept that developmental delays can’t be overcome. Sometimes, what works best for mastering a particular life skill is to let timing take care of itself.

When he was 22 years old, my son’s independent living skills were assessed as “severely delayed.” At that time, he’d been driving for three years, was doing his own laundry, fixing breakfast for himself and doing all of the outside yard work. Over the next 3-5 years, he figured out how to: repair the kitchen drain pipe without supervision, schedule his own appointments, establish a solid work history, plan and make dinner, and program the GPS app on his smart phone.

3. Networking is more valuable than ever

You have a network of family, friends and professional colleagues. Never shy away from asking for what you need. People are so ready to help you. If you haven’t already joined a local autism support group, now would be the time to do so. You’ll find parents who are exactly where you are. You can help each other. And, you can reach back to offer support to the parents with young children who are now where you used to be. If there’s no local support group, consider starting one.

4. Look for volunteer opportunities

One of the best reasons to volunteer is to become a part of something larger than yourself. You get to spend time with like-minded people who share similar values, make friends, learn new skills; become a better you. If your teenager shows no interest in volunteering the first time you suggest it, ask her again in six months.

Knowing my son’s love for dogs, I thought he’d jump at the chance to volunteer as a dog walker at the animal shelter. The first time I suggested this, he brushed my comment aside. The next time I asked, not only was he ready, he handled all of the details himself. Two years after he started, a full time position as a kennel attendant opened up. One of the employees he knew suggested he apply. So, he did … and, he was hired.

5. Own the journey

If you find yourself in a deteriorating circumstance, don’t waste too much time in negativity. Once the shock has worn off, identify the problem, and then come up with a work-around for the benefit of your teenager that includes professional etiquette.

My husband and I had no reason to suspect that our son’s first job would be a disaster. He’d worked with a social services agency that focused on helping “disabled” adults find employment. Three months into this job, we knew he was in over his head. By that time, the agency had closed its doors. The only support our son had was us.

We sat him down and explained how he could ethically quit this job. Friends of his suggested companies he could target which led to job interviews he set up by himself. When a second company made him an offer, company number one received his two weeks written notice.

6. Find the teachable moments when work-related communication breaks down

In a perfect world, people are thoughtful, kind and respectful. Sadly, we know this isn’t always true. Sooner or later, your teenager will come face to face with a rude coworker. The first time it happens will be awful because she won’t be expecting it. (No one does.) Help her to find the words to defuse the next encounter… because it will happen again.

On two consecutive Saturdays, my son arrived at work, clocked in, and walked into the main lobby. One of his coworkers, a woman in her early 60′s, got up in his face and yelled, “Where have you been? You were supposed to be here an hour ago!” He was devastated but managed to step back, quietly explaining that no one had revised his schedule for an earlier arrival time. Not only did she refuse to apologize to him, over the next two months, she continued to harass him about his job performance.

He had no idea what to say to shut her up, telling me that anything he said might be grounds for “insubordination,” which could result in his being sent home. We spent several weeks talking about the best way to handle this. What could he respectfully say to make sure that this woman never spoke to him like this again?

After coming up with a sentence I thought would work, we practiced until it sounded like a spontaneous remark. The next time he was paired to work with her, she verbally jumped him. Seizing the moment, he said, “Your language is unprofessional and I don’t appreciate being talked to that way.” Her jaw dropped. From that day forward, if she couldn’t say anything nice to him, she said nothing.

7. Should your teenager tell a potential employer about her disability?

I’ve had this conversation with small business owners, people who work in the mental health and social services sectors, my son and one or two human resource professionals. Every single one of them has agreed with me. What they’re in agreement on is that knowing makes it so much easier to adapt job training and ensures that there are no on-the-job misunderstandings. The HR people I’ve talked with are quick to point out that, legally, they can’t ask. But, they’re so willing to listen.

Quite frankly, when our son was 18 years old, we didn’t know to ask. My husband and I assumed that the social services agency helping him find his first job would handle that part. Remember, too, that he didn’t then (and doesn’t now) qualify for a service coordinator. I don’t know if having one would have automatically raised that question. It’s a hard question with no right or wrong answer. The “right” answer is what works for your teenager. Today, my answer, for my son (which he agrees with), is a resounding “Yes!”

8. It wasn’t a bad job—it’s a job that wasn’t a good fit for you

Expect that somewhere in your teenager’s future is a job that she’s going to hate or one that she will be woefully inadequate to do. It’s happened to all of us so the odds are excellent that it will happen to her. Be okay with this.

I understand why my son couldn’t stick around his first job after high school. He was 18 years old drowning in sensory overload. Three months was as much as he could handle before his survival instincts kicked in. When the emotional dust had settled, he was a little wiser about what jobs he didn’t want. Better yet, when potential employers asked him for the best and worst stories from his work history, he had the perfect “how I got hit in the head with a purse by a woman who wanted to get into the public rest room that I was cleaning” story to share.

9. Explaining scripts can help create reasonable job accommodations

Set aside the alphabet soup of labels and educational jargon you’ve collected over the years. Turn them into conversational language (scripts) to describe your teenager’s learning style and work habits. Come up with 1-4 sentences that describe 2-3 good accommodations for how a job can be adjusted to play to your teenager’s strengths.

Here are two scripts my son and I wrote that might work for your teenager:

A. “Having Asperger’s Syndrome does affect my work style and what I’ve found is that I’m a better employee when you know what this means.”

B. “A written to do list is better for me than verbal instructions.”

As my son talked with employers, he realized that the words “Asperger’s Syndrome/autism/on the autism spectrum” themselves weren’t as important as what he said next. His follow up sentence: “Here’s what you need to know about that ….” was the point in the conversation when the person he was speaking to leaned in and paid close attention.

10. Here’s your “secret weapon”

Explaining scripts are great tools but they’re not enough if your teenager struggles with communication. The ace up your sleeve is that she can bring someone to a work related meeting to “facilitate communication,” for her. This is what’s referred to as a “reasonable accommodation.” (And, we wrote an explaining script for this!)

In the American Disabilities Act (ADA), reasonable accommodations can include “… the provision of qualified readers or interpreters, and other similar accommodations.” An interpreter is that someone who acts as the communications facilitator.

My son successfully engaged the services of a professional facilitator twice. The first time he requested one because his inability to communicate effectively at work was hampering his job performance. This is the explaining script he emailed to the HR manager: “Part of my disability has to do with how communication happens when I’m in a group of two or more people. It’s hard for me to keep track of all the conversations and be able to participate if I have to process everything I’m hearing without help. I would like to bring someone to the upcoming meeting, as an accommodation to my disability, to facilitate communication.” (The language in this script is the outcome of a conversation between an employee of the Mental Health Association and me.) The second time my son needed guidance in conversational support, he asked that same facilitator to attend a meeting with his vocational caseworker.

One day at a time is how my family built our road map. You’ll build yours the same way, maybe even faster using some of my 10 surprising things. Expect detours because detours are the spice of life! Be patient, remembering that this is not a race. Don’t ever settle for the expectations that someone else may have for your son or daughter. Believe that your teenager’s best days as an adult are still to come.

Photo Credit: Jens Schott Knudsen

Are you the parent of a graduating autistic teenager? Share with us your thoughts in the comments section below!
Hensel_PRrKathy H. Porter is a freelance writer, author and head cheerleader for her amazing son. She grabs inspiration from a background that includes 14 years of business experience and 17 years as an educator. Her latest project? Crafting work-related “explaining scripts” for autistic adults. Join her newsletter to find out when her next article will be published and to discover more useful on-the-job strategies for autistic adults. Follow her on Twitter: @kathyhporter

 

Inclusion – How it Works Best for This Autistic

this autistic 

By Judy Endow

A version of this article originally appeared on Ollibean.

As an autistic, I sometimes feel boxed in by the best practice strategy of inclusion. Please don’t get me wrong – inclusive education is a very good thing! Historically, people with disabilities were not given access to public education. Then, over time, laws changed. Today we have special ed classrooms in our schools and the progressive schools practice inclusion.

Today’s Inclusive Education

Inclusion means that all the students get to learn in the general ed environment. Instruction is differentiated while physical, sensory, emotional and every other need of each student is taken into consideration so that all students learn together, each one doing and being his very best self. Inclusion allows each student to belong to the community of his peers.

My Personal Take on Inclusion

I love the idea of inclusion. It is right and good. It is very important. AND sometimes this setup doesn’t work well for me. I am not able to access my thoughts and words in real time. Even a quiet environment, with several people in the same room does not necessarily allow me access to those people or even to my own thoughts. Sometimes this sort of situation can propel me into shut down or meltdown.

In fact, now that I have access to the typical world and experience an inclusive adult life in my community I am discovering that I don’t always want to participate in the typical world. If inclusion is good and right then why is this?

A Breadth of Inclusive Experience

As I ponder this question for myself as an autistic I realize that the world is run according to the majority. This means a neurotypical (NT) brain is what is behind the conventional constructs of our society. Inclusion looks the way inclusion works for the NT majority. Inclusive opportunities and indeed, all of inclusive education and life, happens via NT style. It is what we have. It works for NTs and it even works for me some of the time. It allows a breadth to inclusive experiences.

A Depth of Inclusive Experience

But at other times I need to honor my autistic neurology. While I love being part of the everyday fabric of life in my community I also need to spend time living my life with other autistics. This is where I find the depth of inclusion my heart and soul searched for my whole life. It feels like home to me. It is the place where I do not need to inhibit my natural noises, flaps and extraneous movements and moans. I do not need to be mindful of the hundreds of social rules of NT society. I am free to be my true self. My autistic friends do not judge my intelligence, my potential contribution or my human worth by my unconventional mannerisms. I belong, just as I am in my natural state, accepted and loved for my whole self – not just for my NT look-alike self.

The Breadth, the Depth and the Importance of Choice

And still, for me it is quite important to know how to get along in the world at large. I love the freedom of being able to walk in and out of any place in my community and fit in so as to appear to belong. I love being able to take my place in the world at large. I am grateful to have this choice because it hasn’t always been this way in our world.

Additionally, a different and just as valid inclusion comes from the community of my autistic friends where all of me – including autistic traits and mannerisms – are understood and cherished. This is the place where I have the most fluid access to the best of my being, likely because I do not have to inhibit my natural autistic self. To me this is a treasured wonder.

From A History of Marginalization

At the end of the day, I ponder the inclusion situation through history. Being “othered” most of my life in “special” settings never felt like inclusion to me. It felt like being shoved to out of the way places of “less than.” Then later, given only the opportunity for inclusion NT style I was left wanting and longing for something I did not understand. It wasn’t until I was part of the larger NT style inclusive community that I was then, in turn, able to find my home in the autism community, a place my heart longed for over many years.

To a Future of Comprehensive Inclusion

I believe we may come to discover in the future that to thrive and to be all that we can be, we autistics will need both the breadth of NT inclusion and the depth of autistic inclusion – two distinct and equally important styles of inclusion. As autistics, we also need to be empowered to choose how this mix best works for us in our given autistic bodies. My needs wax and wane over time, but it remains constant that to love and to be loved I need access to both inclusive environments and to be able to choose the mix that serves me best. This allows me to belong and to participate fully in the human race.

About Judy
Judy is an autistic author and international speaker on a variety of autism related topics. Read more from Judy on Ollibean here and on her website www.judyendow.com.

belong-1024x1024

Book Review: The Reason I Jump By Naoki Higashida

book review the reason I jump

A version of this post was originally published at Jewish Special Needs Education: Removing the Stumbling Block.

“True compassion is about not bruising the other person’s self-respect.” ~ Naoki Higashida

The Reason I JumpNaoki Higashida is the author of the fascinating book The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism. This is a first-person account of living with autism, written through the use of assistive technology when Naoki was thirteen.

As you might expect, there are significant insights to be gleaned from this honest, thought-provoking account. And yet, as an educator who cares deeply about inclusion and our ability to value every learner, I find myself wanting to write a warning label.

Without a doubt, this novel provides a window into the thoughts and feelings of a person with autism. Naoki openly shares his struggles and frustrations as a means to increase understanding of himself, his autism and autism in general, while he simultaneously implores the reader for support, care and acceptance. But it is so important to remember that when you have learned how one person thinks and feels, you have learned how one person thinks and feels.

I caution those who wish to understand autism, other non-verbal disabilities, or any disability in general, to not generalize the insights learned here. It might be easy to experience Naoki’s words as ‘aha moments’, but we must remember that each person with autism (or any other disability) is a unique individual; and while there may be similarities, others may or may not share similar feelings and experiences with Naoki.

Additionally, I am challenged by another aspect of this novel. The book is structured as Naoki’s answers to a series of fifty-eight questions. It is unclear who has written and/or posed these questions that range from “Why do you echo questions back at the asker?” to “Why do you flap your fingers and hands in front of your face?” to “Why don’t you make eye contact when you’re talking?” And yet, as you read through all of these questions, you may notice that each and every one is written from an ableist perspective and has what I feel is a slightly negative connotation. Each one seeks to know “why do you do things differently from the rest of us” and the questions even go so far as to ask “Would you like to be ‘normal’?”  Asking such a question is presumptuous, and assumes that Naoki (or anyone with a disability) isn’t ‘normal’. Nowhere do we read, “What are your goals” or “What do you wish for in life” or even “What makes you happy?” Closest is the question, “Would you give us an example of something people with autism really enjoy?” Once again I will assert that such generalizations by one person with a disability on behalf of all who have that disability is unfair and undermines individuality.

Nevertheless, Naoki answers the following question with what I feel to be the most profound statement in the book: “Do you find childish language easier to understand?” His response, “True compassion is about not bruising the other person’s self-respect.” Why wasn’t this guiding principle used to set the tone of Naoki’s novel?

Have you read The Reason I Jump? What are your thoughts? Tell us in the comments section below!

3 Ways Talking to Autistic Adults Can Make You a Better Teacher

Experts Everywhere

By Michael Scott Monje Jr.

We aren’t necessarily trained educators (although some of us are), but we have an advantage over people who are: we understand what it’s like to be on the receiving end of accommodations and special education. Here’s what listening to our experiences can do for you as a teacher:

3. You’ll be forced to confront your assumptions about your students

It’s easy to look at someone like me and to mentally apply a label. Asperger’s, you might think. High-functioning. Verbal.

The problem with this kind of mental labeling is that it only really speaks to your perception of me now, as an adult who is closing in on middle age. You don’t know what I was like when I was five or ten or fifteen. You don’t know whether I could vocalize during my elementary school years or not. You apply those labels based on what you see of me now, not based on my history. This kind of shortcut in thinking is understandable and human, but it is also an error. It assumes that people are static and that certain kinds of impairment are insurmountable.

Given your profession and your position within that profession, that’s not a mistake you can afford to make.

If you listen and you hear about the varieties of our experience, you’ll start to really appreciate this in a new way. Not only will you learn that there are many of us who had speech delays well into adulthood, you’ll start to hear about the delays and problems we still have.

For example, I still have times when I find it impossible to speak. All of my developmental milestones for speech were “on time” when I was a kid, but under certain circumstances, I just can’t talk. The truly unfortunate thing is, losing my voice is more common when I’m being asked to do something that I don’t truly consent to or when I feel like my rights are being stepped on. This means that it’s incredibly difficult for me to actually say what I want or need during the times that it is most important that I be able to.

This access issue goes away if I’m allowed to simply type instead of talking, but most people do not believe that there is such a huge gap between what I’m capable of saying and what I’m capable of writing, because they see my ability to adhere to certain social roles and pre-defined interactions (such as etiquette-based exchanges) and they assume that the things I’ve been taught to say reflect the things that are actually going through my mind. The very real schism between what I am capable of navigating and what I am capable of fully participating in has been the defining feature of my adult life, and it is very much caused by the same kind of shortcut in thinking that leads to autism parents and educators quietly applying function labels when they see that I can talk.

I’m not really a special case, either. There are several other bloggers out there who discuss (much more often than I do) the varieties of ways that they communicate under stressful or uncertain circumstances.

We are like the children you work with. We are like all of them, just not all at once. My ability to put on a social performance that is comfortable for you doesn’t change that. Instead of looking at our more-or-less normative performances as adults and seeing that we have “overcome” or that we are “higher functioning” than you expected, consider the idea that we are capable of translating. It’s hard, and we’re not infallible—all communication involves inference and inductive reasoning, and we can make mistakes—but we have an advantage. We share a frame of reference with your students that most of you don’t share.

The fact is that a lot of child development theory is based on conjecture and observed behavior under very limited circumstances. When children are developing outside of the projections of theory, then theory really just starts to be about one of two things: Either it becomes a mess of guessing and hoping that you’ve guessed right, or it becomes a blueprint for shaping a certain kind of behavior instead of being a blueprint for understanding the actual experiences that people have.

Both of those choices are awful when there is a third option available: Gathering more information from people who have experienced an alternative developmental path and creating new theory.

2. You’ll be put in touch with cultural resources that you might not otherwise be able to access

One of the first questions I’m asked whenever I meet a new parent in the community or a new educator looking for resources is whether or not I’m the only one doing this kind of work right now. It just amazes me. Not because I don’t understand the feeling, but because I still do, even now.

I’ve been presenting my writing publicly for about 3 years, and when I started, I thought that all the blogs except mine were written by parents. It only took a couple of months for me to realize how wrong I was. Not only is there a community that is both wide and deep, there is a multi-generational written legacy. It’s mostly preserved online and spread through word of mouth, but there have been discussion groups, both public and private, for about as long as there has been an internet. The documents produced by those communities and published in a mixture of print and ebook anthologies, blogs, journals, and even grassroots ‘zines represent years of documented lived experience, complete with critical commentary.

The thing is, if you’re not talking to us, you’re not likely to find a lot of the important work that’s been done. This means that your ideas about what your students might expect as they grow up and enter our community are not likely to be very accurate.

It’s not that any of this information has been kept secret, either. It’s just that spreading the word is difficult when you have medical professionals, teachers, legislators, and even some parents of autistic kids pushing back against you with their ill-informed (but not always malicious) preconceptions about what you’re capable of or how challenging your school years were.

The fact is that there are a lot of us talking about our personal growth and development, documenting when we talked, when we wrote, what we wrote about… We’re not just philosophers telling you what we wish you to believe about ourselves—we’re also a grassroots-organized coalition of observers who are writing themselves up as case studies and sharing the results with one another. We’re taking notes about how many other people we see in our community share which traits, and we can do this because we’re all sharing our experiences with each other and listening to one another.

The conversation’s still in its early stages, but there’s even work being done on the ways that autism might impact our perceptions of ourselves in terms of gender presentation and sexual orientation. In addition to that, there are Autistic people representing a diverse array of ethnic, racial, regional, and traditional cultures writing about their experiences, including the difficulty they encounter when attempting to access basic educational resources. Often, they offer an intersectional and critical point-of-view that is informed by many of the same writers you read during your formal education and training.

We have conferences and we network, too. If you’re not seeing our promotional materials yet, then maybe it’s time to ask yourself what communities you are participating in, and what those communities can do to improve their representation of our voices.

1. You’ll learn why calling us “self-advocates” isn’t quite right

It’s not that the term is offensive. It’s not even that it’s necessarily inaccurate—I am a self-advocate when I need to be. It’s just that “self-advocate” doesn’t really describe what I’m doing most of the time. Look back over this article. My advocacy here isn’t for myself. I don’t benefit from changes to the K-12 curriculum, I’m over thirty.

It’s totally appropriate to call me a “self-advocate” when I am engaged with either public policy debates or interactions with the medical community because those are times that I’m actually advocating for myself and trying to gain access to resources and supports. Similarly, it’s totally appropriate for you to want your students to grow into self-advocacy. I’m absolutely not arguing against the term or the goal.

The issue comes in when you refer to people who are taking time away from their personal and professional lives in order to educate you or help your students as “self-advocates”. In that context, it becomes an erasure of our contributions to the ongoing conversation, because it labels our attempts to act as role models, as teachers, and as community members as self-centered acts. Maybe not selfish acts, but self-centered acts.

The fact is, though, that our attempts to reach out and to do these things are not self-centered acts. They are acts of absolute selflessness. For many of us, re-engaging with the K-12 school system and/or its representatives is stressful. When we do it, it is out of empathy for students that remind us a lot of ourselves, and it is for their benefit. Not ours. Not yours.

We don’t reach out to people in your profession to advocate for ourselves, and we don’t do it to tell you how to do your jobs. We do it because we did not have role models that reminded us of ourselves when we grew up, and we don’t want today’s generation of Autistic kids to grow up without them.

So don’t call us “self-advocates”. At least, not when we’re trying to advocate for something larger than ourselves. Go ahead and call us activists, because we’re working to build a society that is different from the one we were born into. Call us mentors, because we don’t just want to help you to communicate better—we also want to help your students learn to be adults in our community.

Or you can call us teachers, because a lot of us are. More than you might realize.

Photo Credit: Chris Sloan

Michael Scott Monje Jr. is a writer and writing teacher from West Michigan. Ze holds an MFA from Western Michigan University, where ze also teaches first-year writing. Zir novels include Mirror Project and Nothing is Right. Before becoming a college writing teacher, Michael worked part-time for the Kalamazoo Public School district for several years.
Michael blogs at Shaping Clay, where ze posts essays, poetry, and the web serial “Defiant.”

12 Myths About Autism

12 Myths About Autism

This information was originally published in a factsheet by the Autistic Self Advocacy Network (ASAN) during Autism Acceptance Month in 2014. It is used with permission.

Do you find it hard to separate fact from fiction when it comes to information about autism? Check out these 12 Myths about Autism from ASAN that will help clear up any confusion.

1. Autism is contagious.

Nope! You can’t catch autism. Autism is something some people are born with, like blue eyes or red hair or a brain that is very good at some things and has more trouble with others.

2. Autism is caused by vaccines.

Vaccines do not cause autism. Please make sure your kids get their shots.

3. Autism is a disease.

Nope! Autism is a developmental disability some people are born with, like dyslexia or Down Syndrome. It is not a disease. It is a difference, and a disability.

4. Autism is a tragedy.

Nope! With the right support, autistic people can go to school, communicate, work, live in the community, have friends, get married, start families, vote, pursue
their interests, and anything else they might want to do.

5. Autistic people are eternal children.

Nope! Autistic people grow up. An autistic 20 year old is not a toddler in a 20 year old’s body–they are an autistic 20 year old.

6. You can grow out of autism.

Nope! Autism is a life-long developmental disability. Autistic children grow up into autistic adults. The same percentage of adults and children are autistic.

7. Autism means not being able to speak.

Communication disability is a part of diagnostic criteria for autism, but most autistic people do develop the ability to talk. About 15-20% of autistic people do
not develop oral speech. They can use Augmentative and Alternative Communication to speak for themselves.

8. Autism means intellectual disability.

About 15-25% of autistic people also have an intellectual disability. Most autistic people are not intellectually disabled. Intellectual disability is not a part of autism,
but some people have both.

9. Autistic people lack empathy.

Nope! Autistic people feel empathy for other people. Autistic people are people, not robots.

10. All autistic people are savants.

About 10% of autistic people have savant skills like perfect pitch, photographic memory, or calendar calculation. Most autistic people are not savants.

11. Autistic people suffer from autism.

Autistic people suffer from prejudice and discrimination. Autistic people suffer when they do not get the support and accommodation they need, when they receive substandard or segregated education or living environments, when they are kept out of the community or kept unemployed, when their civil and human rights are violated, or when their access to communication and the right to make decisions about their lives, bodies, and futures are denied. Autistic people do not suffer from autism.

12. Only boys are autistic.

An autistic woman wrote this factsheet.

Do you have anything to add to this factsheet? Tell us about it in the comments section below!

The Ode to the Autistic Man (and other poems)

POETRY

As a blogger, I have been fortunate to meet many people committed to the inclusion of individuals with disabilities. These stakeholders include parents, educators, community leaders, philanthropists and self-advocates, all of whom raise their voices about an issue to which they are passionately committed.  Conversations take place online via blogs and various social media outlets; with rare in-person connections.  Do not let that concern you, these conversations are no less rich and these connections have the power to affect real and meaningful change; there is no questioning the strength of social networking.

It’s always exciting to make a new connection online. I’m flattered when someone seeks my advice and it thrills me when someone reaches out with an invitation to speak or consult.  And yet every once in a while I get a message like this one, from a self-advocate, and I’m swiftly reminded of why we all continue to blog, advocate, share and connect.

Dear Lisa,

I am Scott Lentine, a 26 year old man with high-functioning autism (PDD-NOS/Asperger’s) from Billerica, MA, outside of Boston. I graduated from Merrimack College magna cum laude with a Bachelor’s Degree in Religious Studies with a Biology minor. I am currently an office intern at the Arc of Massachusetts in Waltham, where I try to persuade lawmakers to pass key disability resources legislation to improve the lives of people with developmental disabilities. I have some autism song/poems in this email that I wanted to have you read and show to people you know on the autism spectrum and to friends you know who support autism causes. I hope you and your friends love these poems! I also have a blog on WordPress about autism. The link is http://scottlentine.wordpress.com/ Hope you enjoy the poems and blog!

Here are the poems that Scott has shared:

Just a Normal Day

Never knowing what to say
Never knowing what to do
Always looking for clues
Just a normal day

Feeling unsure
Totally perplexed with everyday life
Always on edge never certain
I wish I could lift this curtain
Needing to constantly satisfy my need for information
Always online searching for new revelations
Going from site to site
Obtaining new insights every night

Trying to connect with people my age
Attempting to reveal my unique vision
But ending up alone and unengaged
Feeling like my needs a total revision
Just a normal day

Can’t You See

Can’t you see
I just want to have a friend
Can’t you see
I need the same connections in the end

Can’t you see
I want a good job
Can’t you see
I need to have stability and independence and be part of the general mob

Can’t you see
I want to be independent on my own
Can’t you see
I want to be able to have my own home

Can’t you see
I want the same things as everyone else
Can’t you see
I want to be appreciated for myself

The Ode to the Autistic Man

Try to understand the challenges that I face
I would like to be accepted as a human in all places
Where I will end up in life I don’t know
But I hope to be successful wherever I go
I would like to expand my social skills in life
Making new friends would be very nice

Stand proud for the autistic man
For he will find a new fan
I hope to overcome the odds I face today
Increased acceptance will lead me to a brighter day

By the age of 20, I will have made tremendous strides
I know in the future, life will continue to be an interesting ride
I have made new friends by the year
I will be given tremendous respect by my family and peers
I hope to get noted for bringing the issue of autism to the common man
So that autistic people can be accepted in this great land

Stand proud for the autistic man
For he will find a new fan
I hope to overcome the odds I face today
Increased acceptance will lead me to a brighter day

Marshfield Memories 

Today is a beautiful day on the beach
There are plenty of people and dogs to see
The water is warm and the sky is bright
And seeing some people flying a kite

I am having a fun time with cousins and friends
Hoping that this day will never end
The ocean and sands are comfortable and feel so right
Taking a walk towards Brant Rock in the strong sunlight

Now it is the evening of the third of July
Watching the amazing fireworks from the seawall go by
Talking with family about the latest moments of the day
And meeting some new friends along the way

It was a great time on the beach today
Reading a book and going into the ocean on a bright clear day
These are moments that I will remember for a long time
Being on the beach on a nice warm day is truly sublime

Photo Credit: V. H. Hammer

How did you like Scott’s poems? Give him a word of encouragement in the comments section below!

8885641187_80eec14ba3_q

Autism: In Their Own Words

Autism: In Their Own Words

These are the kinds of videos that I wish we saw more often. 

While this video does not represent all of autistics on the spectrum, it does highlight for us some who articulate what it means to have autism. I can appreciate when someone makes something that attempts to explain what autism is using people who are autistic. We must always remember how important it is to include the perspective of those who we are advocating for…because then who are we really speaking for?

Watch this two and a half minute video and see if your perspective on autism has changed.

Has this video changed your mind about autistics or autism? We would love to know about it in the comments section below!

Pin It on Pinterest