Tomorrow Is Too Long to Wait for Inclusion

A Place for Parents: Autistics and Allies

Sticker of two people holding hands.

By Larkin Taylor-Parker

Disagreements between stakeholders of various kinds are fairly common in the disability community, but conflict plagues autism discourse. The place of parents is particularly contentious. As I prepared for this post, I glanced around the Internet for what had already been said. There are too many existing attempts to fix this with a blog post, or, worse, one that oversimplifies the conflict or makes a straw man of one side. I decided this would not be another iteration of an endemic, useless thing. As I read others’ thoughts on the subject, I happened on a year-old article called Who Should Lead the Autism Rights Movement? Instantly, I knew how to articulate the problem and solution.

The answer to that question is obvious: people whose lives are most shaped by society’s decisions on what to do with autistic people deserve the final say. Social change that undermines oppression has never been ally-led. Agency as charitable donation is a contradiction in terms. We must take it for ourselves, not wait until others deign to bestow it. The thrust of every argument I have seen against our leadership is that we are too disabled to have a say in our future. I see this sentiment often. It comes couched in sympathy, recommended for convenience’s sake, and presented in the tired terminology of a moldy eugenics textbook in my vintage and antiquarian collection. I have never seen these claims hold up to scrutiny. The arguments are full of transparent fallacies. Besides, Autistics and other people with disabilities are challenging notions of our incapacity in numbers hard to dismiss as anecdotal evidence. Given a measure of control over our lives, we usually improve them. We will always know more about how to do that than allistic* people. We know our priorities, experiences, needs.

Parents may not be able to set the agenda, but they have a natural role in neurodiversity and disability rights efforts. It is partly restraint. They can be quiet in our safe spaces and encourage others to do likewise. They can stop calling anyone capable of typing insufficiently disabled to have valid opinions. They can stop speaking for and talking over us. However, not everything we need from them is passivity. There are active roles no one could better fulfill.

The media asks them about autism before it does us. Parents have the opportunity to amplify our voices where they would otherwise be ignored, redirect questions, challenge purely negative perceptions. Parents can raise money for worthy causes and organizations. The silver lining of the Autism Speaks problem is that many learned fundraising. Parents can raise assertive autistic children with a healthy sense of self-worth. They can bring up kids who carve a place for themselves in the world and understand their right to be here. Parents can stand with autistic children and adults as we demand a fair chance at rich, full, dignified lives.

As parents work to ensure they are on our side, autistics should help. We must find a healthy middle ground between the extremes of ignoring ableism and writing decent people off for one ignorant word. This is more than being humane. It is pragmatism. We need allies more than most groups. At just over one percent of the population, we will never have the numbers to go it alone.

*non-autistic

Editor’s Note: This post was originally published in 2012 and has been updated with a new author bio as well as a new featured image. 

Larkin Taylor-Parker is a second-year law student at the University of Georgia. She is interested in disability rights, the experiences of young professionals from historically marginalized groups, and fixing internet culture. She is also an avid recreational tuba player.

Five of Our Best Posts on Autism Acceptance

AutismAcceptance

While autism acceptance or at the very least autism awareness receives the spotlight in April, we at Think Inclusive promote autism acceptance year round. Over the past few years we proudly published pieces geared to help our readers better understand autism. For a limited time we open the Think Inclusive archives to the general public so everyone can read or reread our best autism content. Enjoy!

Why Autism Speaks Hurts Us” by Amy Sequenzia (Guest Blogger)

Leaders in a movement essentially shape attitudes towards the given issue, an occurrence guest blogger Amy Sequenzia puts into context regarding Autism Speaks and autism advocacy. Autism Speaks’ negative view on the disability influenced Amy to see her autism negatively. However, through life experiences she eventually abandoned those notions to recognize autism as an important part to her personality. In “Why Autism Speaks Hurts Us” Amy highlights the dangers Autism Speaks casts.

My Decision to Homeschool My Son with Autism” by Allison Trotter (Guest Blogger)

In her Think Inclusive guest post Allison Trotter addresses autism and education. Specifically, Allison discusses why she decided to homeschool her autistic son Jackson. Using an analogy she demonstrates a student with autism can learn in the large school setting but successful placement requires one critical element, an element Jackson’s school unfortunately lacked.

The Best Argument Against Autism Speaks: A Special Educator’s Perspective” by Tim Villegas

If guest blogger Amy Sequenzia’s previously highlighted post didn’t remedy your curiosity about why so many call foul on Autism Speaks, Think Inclusive founder Tim Villegas will. Tim shares his passionate, thorough, and compelling argument against Autism Speaks, even using the organization’s own words to identify their missteps. As Tim’s title suggests he offers a special educator’s perspective on the situation.

Passing: How to Play Normal” by Larkin Taylor-Parker (Guest Blogger)

After reading guest blogger Larkin Taylor-Parker’s post you may become more self-conscious over what you say and around whom. Larkin’s Asperger’s Syndrome diagnosis lands her on the autism spectrum. Yet due to Larkin’s parents heavily criticizing her social behavior as a child she learned to “play normal,” faking behaviors to gain acceptance from us neurotypical people. Judging by Larkin’s last paragraph that acceptance appears not the Holy Grail we on the outside might envision.

Autistic: On the Outside Looking In” by Steve Summers (Guest Blogger)

Autistic people who don’t adapt to our neurotypical way will probably experience social exclusion, the topic guest blogger Steve Summers addresses in his post. Steve expresses the hurt and confusion he feels encountering exclusion. These instances range from someone hiding a “Happy Birthday” Facebook post he gave to not getting invited to parties. All in all Steve’s insights stands a great conversation starter about autism and socializing.

Photo Credit: Philippa Willitts

We Created Wearable QR Codes to Keep Our Son Safe

a picture of erin and bruce wilson with their son jay

By Erin Wilson

My fun-loving and active 14-year-old son, Jay, has severe autism. He has found benefit and great enjoyment through inclusion programs at school and in his extra-curricular activities.

Inclusion Helps Develop Lifelong Acceptance

We are fortunate that our school district has a great push-in “buddy program” which brings general education students and special education students together on a regular basis. It has been the catalyst of many successful encounters not only for Jay but also his peers, who have greatly benefited from their exposure to a person with severe autism who also has minimal speech. The exposure helps them to develop a lifelong acceptance of people who are differently-abled.

A Karate Instructor First Encouraged Us to Include Jay in Regular Classes

We work to keep Jay active. After several years of private lessons at a school of the American Taekwondo Association, his instructor urged us to place Jay in a mainstream class. We were resistant at first, afraid he might disrupt the class, bother the other students, or become a topic of complaints among parents in the waiting area. I was especially worried that he may get more attention than the other students, which could upset the other parents. Our instructor assured us that she would not allow those complaints in her school, and she paved the way by speaking with each parent and student about autism and our son. She went one step beyond that by appointing one of her teen students as Jay’s one-on-one for needed support.

Having Jay Learn with Typical Peers Has Improved His Behavior

Seven years later, Jay is still active and thriving in martial arts. He’s grown up with many of the families we once worried would complain about him–instead, they encourage us by noting his progress and successes. His behavior has improved when it comes to waiting in one place for class to start, raising his hand to get the instructor’s attention, and putting on his shoes independently. He has bonded with his peers and they truly seem to “get” him.

Educating Organizations About Inclusive Practices Is Important

All classes and programs offered through our city must include provisions for people with special needs and ensure accessibility to everyone. Jay has attended classes such as ice skating, trampoline, and day camp with the help of a one-on-one aide. The city’s Board Certified Behavior Analyst has been instrumental in providing strategies for Jay to be included. Under their guidance, he has participated in community outings to places such as museums, the circus, and amusement parks.

Jay Communicates with His Peers in Non-Typical Ways

One summer, Jay became fascinated by swimming behind people so he could “high-five” their feet. A group of girls regularly swam ahead so that he could high-five their feet along the way. They wanted him to follow them exclusively and would even act a bit possessive when he would follow other swimmers. They had found ways to interact non-verbally with him and were protective of his friendship!

Like Others on the Autism Spectrum, Jay Has Become Lost

Like others on the autism spectrum, Jay has eloped from what we thought were safe places. He’s become lost at school despite a one-to-two ratio (one adult to two children). He eloped during a well-manned field trip to an amusement park, despite the many aides and safeguards. And despite the growth inclusion has brought for him, in these unexpected situations, we cannot count on Jay to advocate for himself.

We Created Wearable QR Codes to Aid Jay If He Ever Is Lost Again

My husband Bruce and I set out to find a way to alert people of Jay’s condition should the need arise. We created wearable items with personal QR codes that link to a live web-based profile of vital information about the wearer. We also founded IfiNeedHelp.org, a non-profit organization with a purpose of getting these communication tools into the hands of individuals, organizations, and other groups that support the autism and wider disability community.

Our Patches Keep Thousands of Wearers Safe with Vital Information Seconds Away

Now, Jay and thousands of other wearers have patches and other “wearables” that instantly communicate critical facts, including a contact person and other emergency medical and behavioral information when scanned or manually entered into the site. We feel better knowing that Jay and other people on the autism spectrum can attend inclusion programs and other opportunities with a greater sense of well-being, thanks to an assurance of clear communication for those who cannot advocate for themselves.

Photo Credit: Erin and Bruce Wilson

Think Inclusive is part of If I Need Help’s Associate Program. Use the coupon code “Think Inclusive” for 5% off your order.

portrait of erin wilson

Erin Wilson is co founder of non profit IfiNeedHelp.org with her husband Bruce. Their energetic and fun loving 14 year old son Jay has severe autism and was lost in the past. Creating If I Need Help has been a labor of love to protect him and others who have special needs.

Passing: How to Play Normal

image of a tuba laying on its side on a wooden surface

By Larkin Taylor-Parker

I look like someone you might trust to hold the spare key if we were neighbors. We could eat at the same restaurant or cross paths in the grocery store. We might forage the same yard sales. I look like I could be someone you know. You might not believe me if I told you I was diagnosed with Asperger’s Syndrome at age six. Unnoticed, I often overhear your discussions on what to do with us. I have heard your opinion on DSM changes. I saw your puzzle piece tattoo. I listened as you equated my label with violence, called people like me ‘unemployable,’ claimed it is irresponsible of us to have children, suggested we would be happier in institutions. I heard your retard joke. You never guessed an autistic might be listening.

I look normal. That does not make me part of the over-diagnosis epidemic if it exists. I thought two classmates of vaguely similar appearance were one person for my first six weeks at Decatur High School. That was one of my many embarrassing adventures with face-blindness. Tone of voice is a second language in which I am barely conversant. Instead of words, my mental landscape is structure. It is a good configuration for rhetorical skills, speed-reading, and semantic memory. I think of my full course-load at Agnes Scott as people born rich consider money, rarely, with the dim awareness that others worry about such things. I detest noise. I cannot read nonverbal cues. What I can do is pretend to be you.

I started playing tuba at twelve, but passing for *allistic is my longest running show. It takes more practice to fake facial expressions than make a forty-pound horn play sixteenth notes. Tuba can be self-taught. Learning to pass took me years of practice with a special method: every time my family went out in public when I was a child, the ride home was a lecture on my failings. I was upbraided for gait, demeanor, eye contact, manner and content of speech. The reward for perfect success was a moment of rare parental affection. 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. As I understand it, we have a deal. You tolerate me because I do things well, or soon will, and have learned not to make you squirm. I give you undying gratitude for allowing me to live on the fringes. I can almost accept this state of affairs. We are often colleagues, occasionally friends. In other cases, I prefer to avoid you. My discontentment with our agreement is the fine print. Autistics who cannot or will not mimic you well enough to preserve a status quo in which you are not confronted with the way we are, whose gifts you consider less handy, are lucky if you deign to place them in decent group homes.

No one likes malcontents, but I have to be one of those neurodiversity people. I can look at individuals who need services and see a common humanity that demands action. As much as you bemoan my lack of empathy, I wonder why you struggle to see it. In the future, you can expect me to be less quiet and grateful. Assume I will bother you, knock on your door, make the problems of people like me moral issues. When I was a child, you thought “getting over” my special interests was good for me. I think it might help you to spend less time obsessing over normalcy. I may not worry so much about passing. It would do you good to work through your problems with diversity. Tomorrow, I might not smile. I might not look you in the eye.

*non-autistic

Photo Credit: Charles Hutchins/Flickr

Editor’s Note: This post was originally published in 2012 and has been updated with a new author bio as well as a new featured image. 

Larkin Taylor-Parker is a second-year law student at the University of Georgia. She is interested in disability rights, the experiences of young professionals from historically marginalized groups, and fixing internet culture. She is also an avid recreational tuba player.

Indie Rock Duo’s Debut Album Will Benefit the Autistic Self Advocacy Network

Tim and Clive

The Band That Started via Text Message

During the initial stages of Sally Sparrow & The Old 41 (SS41), Tim Villegas and Clive Staples had not met face to face or even spoken on the phone. Their entire collaboration began via text message. Clive’s wife worked with Tim, a special education teacher, and connected them after he had some questions about some music software Clive had lent him. Soon after that they started reminiscing about their previous musical projects. Years removed from any serious creative endeavor, they were both keen on building a collaboration based on their similar musical tastes. A few months later, they released “Heart of It” as a single and settled on a name, Sally Sparrow & the Old 41. The name comes from the Doctor Who episode “Blink”, as well as a familiar road in the Atlanta Metro Area.

Electronic Pop Made with Laptops

Tim&CliveHSWhile any band is leery of pigeon-holing their music into one genre or another, SS41 is clearly in the electronic music category. Clive and Tim hold their song writing as the most important piece of their combined effort, so elements of this are strewn about in all of their recordings. Clive’s background is in EDM so he brings a knowledge of soundscapes and synths to their songs while Tim uses his Alternative Rock band days to cultivate a more “live” sound. Never Far From My Mind was created in a matter of six months from each of their respective home studios. Using both Garageband and Logic, Tim and Clive sent files back and forth via Dropbox and worked on the songs in their spare time often sharing musical instruments and recording gear.

All Net Profits Will Go to the Autistic Self Advocacy Network

Something else that binds these two musicians together is autism. In addition to Clive having an autistic son, Tim has been a special education teacher for the last twelve years and is currently teaching in a classroom for students with autism. The two of them wanted to come up with a way to support the concept of neurodiversity (which simply stated means the world needs all kinds of brains), the autistic community and fulfill their dream of producing and releasing an album. Once the album is released (December 1st , 2015), the proceeds from the sales of Never Far From My Mind will be donated to the Autistic Self Advocacy Network.

Additional Press

Here is a link to their interview with American Pride Magazine as well as an audio version with Jacqueline Jax host of A.V.A. Live Radio.

Pre-Order from iTunes or Amazon

To pre-order Sally Sparrow & the Old 41’s debut album from iTunes for $4.99 you can click —>> HERE

You can also pre-order the album via Amazon —>> HERE

For those of you who have Apple Music, the album is streaming in its entirety —>> HERE

The official release date is set for December 1st, 2015.

Thanks for your time and attention.

On ABA and Rethinking Effective Behavioral Interventions

On ABA and Rethinking Effective Behavioral Interventions

A version of this post was originally posted at 37centigrade.org.

By Dusty Jones

If you have a kid with autism, chances are you’ve heard of something called ABA. You may not be quite sure what those letters mean, but you’ve probably heard that this ABA, whatever it is, has been declared by whoever declares these things to be the best and most effective treatment for autism. That might be true, depending, of course, on your definition of treatment. Theoretically, of the many therapy options when it comes to kids with autism, ABA, which stands for Applied Behavior Analysis, offers the greatest possibility that good things will happen for your autistic child as a result of the therapy. That’s the claim, anyway. Unfortunately, the reality is not so cut and dried.

Do We Really Know What Autism Is?

Nobody knows what autism is. Nobody has it figured out yet. We’re pretty sure it has something to do with the brain, but we don’t know what causes it, what makes it worse or less worse, or what can be done about it. Psychology is lost because psychology is a philosophy based on the socially-constructed mind. Kids with autism don’t tend to acquire a socially-constructed mind. The same goes for psychiatry. Psychiatry tries to use chemicals to restructure the mechanisms of the brain so a person complies with social rules. Same with sensory diets, augmentative communication systems, many forms of speech and language therapy, occupational therapy, and so many other approaches, each one offering its own ineffectual or incomplete plan to gain control over a difficult child.

After all the remedies have been applied and explanations given, parents and teachers of children with autism are left with a little creature that behaves in odd and unpredictable ways—ways that defy interpretation.  Perseverative routines for hours. Tantrums that come from nowhere. It’s hard to go to the grocery store when something as random as a beeping cash register can cause an autistic child to have a meltdown, as they say. How do you give a kid a haircut, how do you bring sharp scissors close to his head when he might freak out for being touched behind the ear? These challenges disrupt the most mundane aspects of life. Whatever the chemical makeup of the child’s brain or the psychological interpretation of his behavior or the idiosyncratic sensory input he requires, what’s needed is a solution to the behaviors and habits that disrupt life and make it dysfunctional. Somehow, you need to get it under control just so you can get through a day.

Differential Reinforcement of Other Behavior

Part of the reality is that kids on the autism spectrum often do things that are difficult for their parents and teachers to understand, often disrupting the environment for others. They do things that look weird, or seem aggressive, sometimes even self-injurious. The standard ABA approach to problems like these is to create some kind of differential reinforcement procedure to try to replace the problematic behavior with something else. Such procedures go by different names, but here is the basic idea:

  1. Identify the behaviors that are problematic.
  2. Remove all incentives for engaging in those behaviors.
  3. Provide incentives for engaging in some other behavior instead.

This is called the Differential Reinforcement of Other behavior, or DRO.  My guess is that DRO is the most common procedure used by behavior analysts, because it is the easiest way for many people to conceptualize how behavior changes. If asked the question, “What causes behavior?” many behavior analysts will say that the consequences that result from a behavior cause that behavior to occur more or less often in the future. This is technically true. When applied in certain ways, reinforcement, extinction and punishment are behavioral processes that will, in fact, cause changes in the rate of the behaviors they’re designed to influence. But differential outcomes are just one of many variables that affect behavior. The fact that so many behavior analysts treat reinforcement as a tool to control the behavior of another person speaks to their understanding of the purpose of behavior analysis. Behavior analysis is the science of human behavior. It’s not a program or a set of procedures—it is the scientific investigation into the causes of behavior. Thus, while behavior analysis is often used to control the behavior of autistic children, instead, we can use it to make sense of what they do and help them do it better. When the applied part of applied behavior analysis means nothing more than better behavioral control, I find it very unfortunate for those who are served by ABA.

Another Way of Looking at Behavior Intervention

The approach I have learned to use to understand and improve behavior gets a lot of resistance from people working for better behavioral control. My approach seems wrong to anyone who views behavior in terms of appropriateness and oughtness, rightness and wrongness. The approach does not call for withholding the thing the child needs when he behaves wrongly, but providing it to him at just that moment. For most people, this would constitute a violation of the standard DRO procedure. It calls for a direct response and supportive actions to be carried out at the moment the child begins to engage in problematic behavior. It is an approach that acknowledges the adaptive nature of their so-called problematic behavior and acknowledges that it is only problematic in that it is difficult for their caregivers to manage. The approach described here is simple: Figure out what the child wants and help him get it.

For my colleagues, it comes across as a recipe for making things worse because it looks like you’re reinforcing bad behavior. This is understandable. It does look like you’re creating an incentive for a child to behave wrongly. But this assumes that the actions of another person—whether you praise or don’t praise, give them a reward or don’t give them a reward—is more important to the child than getting his problem solved by whatever means solves it quickest. In my experience, that assumption is baseless. Many of these kids are more interested in spending their time on their own terms than they are in your praise and rewards. Also, in my experience, this type of approach doesn’t reinforce bad behavior; in most cases, it actually tends to bring about a quick reduction of it.

None of this is intended to minimize the significance of challenging behavior. We still identify the behaviors that are problematic and put procedures in place to manage them, but we don’t remove incentives when a child does them. To remove the incentive is referred to as putting the behavior on extinction, and this puts the autistic child in a very difficult position. Whatever problems those behaviors cause for the child’s caregivers, they serve a purpose for the child. The incentives gained from them are more than mere rewards and tokens. They are things like attention from caregivers or escape from an unpleasant situation. For children with autism, escape from an unpleasant situation often requires assistance from someone—they have to get your attention somehow as a first step to getting assistance from you.

Children on the Autism Spectrum Adapt Their Behavior in Order to Protect Themselves

Those problematic behaviors tend to be the means by which a child with autism protects himself from perceived threats and painful circumstances. The world can be a lonely place for a child who learns and lives through the lens of autism, so attention is not just an appetite to fill, but a critical form of support in an otherwise isolated world. Everyday stimuli can trigger frightening reactions in these children, so they learn to protect themselves: they fight against those stimuli, manipulate them, run away from them, or engage in hours and hours of repetitive behavior, all to keep those stimuli far, far away. But their protective behavior is uncoordinated, just as you would expect it to be for someone with a significant learning disability.  Their behavior often puts them into danger they don’t understand.

Whether they make sense to us or not, the child’s attempts at self-protection are at the root of these problematic behaviors. Forbidding a child to engage in them may solve a problem for us, his caregivers, but it worsens the situation for him. It leaves him without the means of protection he’s accustomed to using in an often scary and confusing world.

Under the conventions of orthodox ABA, children learn to throw tantrums, hit others, kick, punch, spit, run away, et cetera, because there is a payoff for doing these things. If you can identify that payoff, you can take it away when they do the bad thing and give it to them when they do the right thing. When using the standard procedures, emotional reactions are regarded as part of the bad thing, so they are also ignored (unless the child becomes aggressive, in which case restraints are often used). Making matters worse, extinction procedures are notorious for inducing adverse emotional reactions as well as dangerous increases in the behavior it is meant to extinguish, and yet this strategy remains ubiquitous in routine behavior analytic intervention.

There is, of course, a rationale behind this part of the process: Once the student begins to encounter reinforcement for appropriate responses, he will “habituate” to any “conditioned aversive stimuli” and the “emotional responding” will simply fade away. Soldiers who come home from war with post-traumatic stress disorder are treated with a carefully-designed systematic desensitization program in which the slamming doors and backfiring car engines that remind them of exploding bombs and death are slowly and gently faded in as the soldier slowly learns to respond and tolerate them. Using the standard DRO procedure for an autistic child is more like chaining the soldier to a bed and firing a gun next to his head until he stops convulsing.

Emotional Effects Cannot Be Separated from the Intervention

Consider the standard procedure for something called food refusal for children with autism who eat little either in quantity or in the variety of foods they’re willing to eat. The procedure, as I’ve seen it implemented, is to hold a spoonful of the undesirable food in front of the child’s mouth until she accepts the bite and swallows it. Treatment sessions of this type can last for long periods during which the student is typically held in her seat or trapped behind a table to keep her in place as she struggles to escape. In a treatment session like that, a child will usually hit, kick, spit, cry, scream and so on. There is a great deal of mucous production, salivation, and sweating, flushed skin and rapid breathing. It is an exhausting process for both student and teacher. If ever the student opens her mouth, the food is immediately shoveled in and the spoon used to block her efforts to spit it back out. If she swallows the food and keeps it down for a predetermined period of time (about 30 seconds) without vomiting it out or just holding it in her mouth, she is given a small piece of a preferred food item and praised. This, presumably, is the reinforcement that increases the likelihood that the student will accept the next bite faster, which will soon be presented the same way as the last.

On those occasions when the child manages to keep a bite down and the preferred edible item is given, there is a pause before the next spoonful is presented. During this period, the physical processes are allowed to return to their at-rest state. Heart rate and breathing slow down. Sweating decreases. Crying and mucous production, flushed skin, body temperature, tensed muscles, everything relaxes for a bit. Then the next trial is started. The spoon is returned to the child’s mouth. The dance of force and resistance begins again. The child fights. Adrenaline once again charges into her bloodstream and prepares her to fight.

In this scene, the hitting, kicking, spitting, the words the child screams at the therapist, these are perhaps examples of learned behavior, coordinated action. But what about the crying, sweating, increased heart rate, flushed skin, salivation, mucous production, and so on? These are clearly respondent, unlearned, reflexive behaviors. These are the behaviors that are tied to emotion. Under the standard procedure, the strength of learned behaviors is assessed and considered before intervention begins. We count the behavior. We know how much it typically happens, how much it happens on the child’s worst day. We consider a margin for error in the treatments we create. We know the process is going to be aversive to the child to some extent, so we try to counteract that with strong incentives for good behavior. We consider the quality and amount of reinforcement. We select items and privileges to compete with whatever the child gets out of doing the wrong thing. But many behavior analysts don’t concern themselves with the physical and emotional effects of their interventions. They don’t assess the level of trauma they are likely to cause, the new “conditioned aversive stimuli” they are likely to create with their aversive control procedures. Why are treatment-induced emotional effects and their potential for damage not assessed along with everything else? These are clearly prevalent in the child’s experience once the intervention begins.

Behavior Is Only Part of the Total Picture of Autism.

One of the criticisms we often receive as behavior analysts is that we oversimplify things, that we do not have a grasp on the complexity of human experience. I appreciate that criticism. I understand where it comes from. But I wouldn’t say it is a limitation of behavior analysis, per se, but more of an inherent feature of the scientific process. Scientists simplify reality in order to make sense of it. We need to be able to change variables one at a time to observe the effects. We run into problems if we change two variables at once. If we change variables that normally cancel each other out, we won’t see the effect of either one. If we change two variables that operate in the same way, we’ll see an effect that is larger than we’d expect. Because we study behavior empirically, which means we study behavior in terms of what we can see and observe, we focus very closely on what we call behavior-environment interactions. These are discrete events in which a behavior causes an immediate effect in the environment. We study behavior in terms of what it causes in a person’s surroundings just after the moment the behavior occurs. That means we tend to view those immediate outcomes of behavior as the key variables in determining whether or when that behavior occurs again. But behavior analysts tend to forget that the simplified units of behavior are simplified for the sake of experimental analysis, and are therefore only part of the total picture, the total experience.

It is often said that children with autism do well following tightly structured routines. This is true. The level of predictability in an established routine is very helpful for the child trying to get through his day. But what if the same aversive event occurs reliably at some point in the predictable routine? Let’s say that each day after lunch, the child goes to art class, and the smell of the paint reminds him of a time when he made a mess with paint and got a harsh scolding. From his perspective, the paint is potentially dangerous because it has been associated with being scolded, so the room that has that paint smell is potentially dangerous, too. Knowing he’ll go to that room after lunch every day gives him something to worry about during lunch. If he refuses to eat or “has a meltdown” when he’s supposed to clear his tray, a tight focus on behavior-environment interactions will see his caregivers run to him to get it under control. After observing this phenomenon a few times, the conclusion will be that he does it for attention, and the new written procedure will instruct his caregivers to ignore him when he refuses to eat or clear his tray. Such a focus won’t reveal that it’s actually the next item on the schedule—the smell of pain in the art room—that is causing the problem. Every step that leads to the moment that he enters the art room could signal to him that he is approaching that unpleasant moment and cause him to react problematically as he encounters those signals throughout his day. It could start as early as when he wakes up in the morning. Waking from sleep and beginning the day puts him on a path that inevitably leads to that critical aversive moment when he enters the art room. So, aside from those discrete units of behavior-environment interactions, his total experience is one in which he has certain elements (the structured routine) pushing him forward through the day, and other elements pushing him back. He experiences a resistance to move forward because moving forward leads him to that single moment of uncertainty and fear. He is pinched in the place where those forces come together, like two fists pounding against each other. He makes his way through his daily schedule in the context of those opposed forces, like a hungry person with lactose intolerance and all there is to eat is rich, creamy cheese.

What If Making Them Do Things for Their Own Good Isn’t Good at All?

We would like to make things easier for kids caught in such a situation. Perhaps we change the antecedents (the events and stimuli that lead up to the behavior) to try to relax some of the pressure that pushes kids forward. Perhaps we relax the timetable and allow the student to go at his own pace. In doing so, the resistance to the painful moment may become the operative source of motivation. If allowed to avoid it, he may never enter the art room. This can be problematic. Perhaps we can allow him to forego art, but what if similar aversive events occur in the lunch room, or the classroom, or on the playground. If kids go at their own pace, they might avoid these environments altogether and never get to experience the good things that can happen in those places. They miss opportunities to expand their repertoires and enrich their lives. This is often the reason we feel compelled to push them through their resistance and force them into the situation. What they stand to gain, we reason, is worth the pain they have to endure to gain it. After all, a student who refuses food is at risk of malnutrition. The ends justify the means.

But what about the pain we cause using an approach like this? What of the trauma we cause? If we treat food refusal by forcing children to eat in spite of their emotional experience, aren’t we taking the risk that we are teaching them to eat out of a fear that if they don’t, they will be put through another “session” and traumatized some more? Have we really helped them if this is what we cause? Or are we adding to the total experience of trauma and duress they experience every day living in a world that doesn’t make sense to them? This world isn’t designed for comfort for any of us. How much less for a person with a profound learning disability struggling to process it and navigate it?

I believe that to be the most important consideration in helping a child with autism—that every single external stimulus hitting their receptors could potentially bring pain and trauma. The sensation of heat radiating through a car window under the glare of the midday summer sun is nothing for the rest of us to fear. We have learned to identify the source of the heat. We’ve learned that cold is its opposite, and that the cool air blowing on us from the dashboard is designed to compete with that sunny window heat. We know how to pull the visor down to get a little shade. But for a child with autism, such learning may not take place automatically. Having a learning disability doesn’t just mean you’re unable to learn what they teach in school. It means you don’t learn how other people learn in possibly every aspect of life. Most of what humans do in this world they learn to do. So, the child with autism may have no basis for understanding why he is unbearably hot from the sun glaring through the car window or how to remedy the problem. Yet, I have never seen a teaching program designed to teach a child to take control of a car’s A/C. In fact, it is more likely that an autistic child attempting to operate the A/C will be blocked—redirected, as we say. We can’t let him operate the A/C because he doesn’t know how and he might break it. And so he is left to feel that painful sensation without understanding and without relief. He is left to wonder and worry: What is that? It hurts. It feels like fire. Will it burn me if I stay here? Am I in danger? I am in danger. I’m in DANGER! And that’s where the panic begins, the drive to escape, the drive to protect oneself in whatever way possible. Perhaps that involves removing his seat belt or attempting to escape from the car—no matter that it is rolling down the road at speed. What does that mean to a child with autism? Perhaps his escape even involves attacking the driver or himself.

This is the moment when supportive care should be offered—at the point when the child begins to engage in these forms of self-protective, even violent, behaviors. The standard DRO approach stands back from this idea, if not disallowing it entirely. According to this procedure he child must stop engaging in these extreme behaviors before his situation is improved, because if the situation is improved by means of these behaviors, then they will be reinforced and the child becomes more aggressive, not less.

This is where I question the nature of the response itself.  There are certainly operant processes involved here, processes that have taught the child that aggression is useful at times. There is coordinated action. The child slaps the driver, not the rearview mirror. The child may have slapped the mirror in the past when his behavior could be better characterized as flailing about. But the specific response that caused a change and an improvement in the child’s situation was the aggressive behavior (perhaps the driver pulled the car off the road, perhaps under some shade), and the behavior that preceded that change was the behavior that got captured under the processes of negative reinforcement and escape.

Viewed this way, it should be apparent that the challenging behavior is going to cause an improvement in the situation in spite of our efforts to hold things constant, to keep the situation unpleasant until the child attempts a more appropriate form of escape. Even if the change in the situation is the introduction of other aversive stimulation (such as being physically restrained), the stimuli that triggered the problem in the first place are likely removed or made less salient by the new situation. This change in itself is enough to reinforce the violent behavior that brought it about.

So, why not get ahead of this effect? Why not take the aggressive, problematic behavior as a cue that the child, unable to express his needs with words, has suddenly encountered a situation he doesn’t understand and that exceeds his ability to respond effectively? Why not take the opportunity to help him find comfort and return to a state of contented equilibrium? We can assess the environment where the problem occurred, look for potential sources of pain that led to it, and work towards ways of helping the child function more successfully when he encounters that situation again. But—and this is key—we can only do that if we stop worrying so much about what the student does, and start worrying about what the child needs. That is, what the child needs in that moment to make himself as comfortable as we caregivers are able to do when we encounter similar sources of discomfort, pain, and uncertainty in our own daily experiences.

No Behavior Happens “For No Reason”

The rationale for this approach is based on the notion that any human, learning disabled or not, will engage in flailing about when we perceive ourselves to be under threat or duress. It’s a genetic condition. We are built with the capacity to charge ourselves with adrenalin, enrich our blood with oxygen, enliven our senses and move our thoughts in quick patterns to discriminate the potential means of escape and protection. It is the learned, behavioral component of the fight or flight reflex that evolutionary selection endowed us with that enabled us to survive as a species. We like to think of ourselves as qualitatively different from the animals, as if our sophisticated selves, functioning in this sophisticated social world are above and superior to the animalistic aspects of our natural selves. I don’t think anyone can seriously embrace this notion. We evolved from that hairy beast. What makes us think it’s not still part of us? We all perceive the panic that overwhelms us in uncertain moments, and the drive we feel to find our safety and comfort. It is no different for a child with autism, or a child with a physical disability, or a child with an emotionally charged history, or just a regular so-and-so who has experienced the pain of losing a friend. It’s the same for all of us, and if anyone criticizes us we are ready with our explanations and justifications. For some reason, when kids flail about in ways that seem aggressive, we assume that there is something wrong with them, that their broken neurons make them inherently unpredictable. This is not the case. They are humans in need, and that is the first perspective we should take of them, and perhaps the only perspective we take for a while. Solve that problem first, and the rest of it gets easy.

Learning Is a Natural Process

Finally, a word on the nature of learning. Learning is a natural process. It is something that happens without our help. Sure, we can discover the variables that contribute to and cause a person to learn. We can learn to manipulate those variables to bring about the kind of learning that meets our personal and social objectives. But learning happens most efficiently and effectively when it happens naturally, and I’ve learned that it’s usually best to let the world operate as it does without trying to force it towards some predetermined goal.

It’s funny—such a simple concept, putting our focus not on the outcome but the process. The process of learning means doing something you can’t do or understanding something you don’t understand. To learn, you must do something that is counterintuitive to your current framework of understanding. That is the essential dilemma in learning. That’s what makes it so difficult for kids with autism. They’re sensitive to discordant rhythms and sensations. They value synthesis, resonance. They like it when things line up, when things happen when they’re supposed to happen, and in the familiar way that they normally happen. (“This is the time of day when we throw tantrums, cry, fight, scream and wallow around on the floor for 6 to 10 minutes. After that we have snack.”) So the dilemma in learning, acutely felt by kids with autism, but true for all of us on varying levels of intensity, is that learning is psychologically dissonant and behaviorally effortful.

To work against the dissonance there has to be trust. You have to be able to trust that the thing you don’t understand will make sense if you make the leap. And for a child with autism, this usually means trusting another person… which is problematic when angry faces and punitive reactions to the child’s behavior make other people untrustworthy from the outset.

The Key Is to Help Kids on the Autism Spectrum Feel Safe and Relaxed

To work against the effort, you have to make the transition as smooth as possible, the steps as small as they can be and still offer forward momentum. This requires gentleness and patience. Neurotypical people can learn in leaps. We can learn several things at once. It’s not as easy for kids with autism. They are very narrowly focused because they are focused first on the potential for unpredictable, random things that come out of nowhere. Unless they’re comfortable, they are always on guard and you can only get them to learn one or two things at a time. But if they are allowed to feel safe and content, if everything happened the way they understand it should happen, and things are less likely to fly out of nowhere and attack them, then they don’t have to be so watchful, so vigilant. They can relax, and when they’re relaxed, you can catch their interest and teach them many things, happily.

That need to feel safe and content in order to learn is a requirement for all of us. We’re not as susceptible to attack by random, everyday stuff, but if we do come under threat, what we tend to learn is how to escape or manage the threat. We don’t really appreciate the content of any other lessons we might learn because we’re more focused on what’s minimally and sufficiently necessary to control the threat at hand. If we feel safe, there is no imperative to escape and we can take an interest in the topic, if it is interesting, and learn for the enjoyment and pleasure in it. That’s the kind of learning that enriches life. That’s the kind of learning that builds things together, like skills and abilities, understanding, confidence and wisdom.

Photo Credit: Lance Neilson/Flickr

Dusty JonesDusty Jones earned his Bachelor of Science in Applied Behavior Analysis from the University of North Texas in 2001, and a Master of Science in Behavior Analysis at UNT in 2007. He has served various populations, both in the United States and overseas, including individuals with autism and other developmental disabilities, child victims of abuse and neglect, individuals with acquired brain injury, incarcerated military personnel, parents and families of individuals affected by behavioral difficulties, care and educational staff of residential institutions, and special education students in public schools. He uses non-aversive interventions, and specializes in severe challenging behavior, including oppositional and defiant behavior, aggression and self-injury. He has developed educational programs for parents and professionals and has conducted many presentations and workshops on Behavior Analysis covering clinical and social topics from ranging from challenging behavior and early childhood development to human sexuality, culture, and economics. He has co-authored two chapters on self-injurious behavior in the International Handbook of Autism and Pervasive Developmental Disorders, and currently authors educational materials for behavior analysts. See more at 37centigrade.org.

Autism Didn’t Stop Me from Pursuing Inclusive Education

book-kids
This post was originally published at the Certified Autism Specialist blog.

I remember the spring of 2005 like it was yesterday.  I was very nervous as I headed into my son’s first Individualized Education Program (IEP) planning meeting.  I had been working in the Early Intervention Field (EI) for the past three years and knew what I wanted for my son as he transitioned into the Early Childhood Special Education (ECSE) program.  I had made my list of priorities for my son’s educational experience and what was important to us as a family.

My number one priority was to make sure he was going to be receiving an inclusive education and have the same opportunities the other children were going to have, with proper individualized supports.  As we started the meeting many of the educational team members had done their “research” on my son and read through his file and suggested that he be placed in a segregated setting with other students with autism.  I asked how they came to that conclusion since many of them hadn’t even met him as of yet.  The response was shocking to say the least… “Well Mrs. Morgan he has autism and doesn’t know the routine of the classroom so he has to learn this within a small group with one on one supports”.

I couldn’t believe what I was hearing, how could they just make such a snap decision based on a diagnosis?  My response to them was very straightforward… “What three year old does know the routine of the classroom?  This is, for the majority of them, their first time in a preschool setting.  We should always assume competence and place children in the least restrictive environment, diagnosis does not drive placement.”  I was then told that our son would be educated in an inclusive setting as the whole preschool is set up that way and that they would incorporate times for him to be with “typical peers”.  I thought, do they know what inclusive education is?  It appeared my definition and theirs was very different.  Where was the collaboration and discussions about options?

It felt like it was us against them and my anxiety went through the roof.  I was very upset and didn’t feel heard at all as part of the team.  I truly believe that my son’s educational team were a group of individuals that genuinely cared for my son and the students that they were teaching, but highly misguided on two very important things:  Inclusive Education & Collaboration of ALL IEP team members.

“Inclusion is more than a set of strategies or practices, it is an educational orientation that respects and builds on the uniqueness that each learner brings to the classroom, and supports and benefits all learners”  (Kluth, 2010, p. 23).  Inclusion is not just about sharing space or oxygen with other people but rather engaging ALL students in an educational experience side by side their peers while having access to enriching grade level curriculum.  Anything can be modified and/or adapted for individualized learners.

In my opinion, collaboration is when individuals on a team share their perspectives, strategies and concerns with each other and develop a process, creating a win/win situation for all stakeholders, and is in the best interest of the student.  Barriers that have continued to plague the collaboration among families and professionals were a parental feeling of given menu-driven options, mindset from teachers that they knew best, parental mistrust and a lack of interest by teachers and administration to explore the diverse cultures in schools (Rock, 2000).

Swick & Hooks (2005) suggested that there were four major beliefs that parents expressed regarding inclusive education:  First, there was a desire from the parents for their children to live a comfortable, happy, healthy and normal life.  The second was that the parents were to be an active member on their child’s IEP team and that they felt respected and valued by the professionals.  The third and fourth beliefs focused on how restrictive self-contained classrooms were for their children both academically and with regards to social development.

Smith & Rapport (1999) pointed out how concerning these challenges were, as students who started out at the preschool level in a self-contained or segregated classroom, many times, remain in those placements throughout their educational career.  It is critical to take a closer look at early childhood education and make this a priority.  The law is clear and The Individuals with Disabilities Education Act (IDEA) supports inclusive education and least restrictive environment for ALL students.

Through collaboration and many discussions we decided to have our son placed in an inclusive setting and worked together to incorporate push in supports for him within that classroom setting. Today our son is flourishing in general education classes and going into the 8th grade in the fall.  I truly believe that providing an inclusive education for him from the very start (preschool) has provided an educational foundation for him to be successful.

It has not been a success only journey for our family.  As we continue to strive for inclusion and acceptance in all aspects of life, we have hit a few bumps in the road but seem to always find a way to work through it.  Our son is the oldest of four children, and many questions from his siblings friends have emerged.  Due to some concerns my oldest daughter had (2 years younger than our oldest) at school regarding her peer’s lack of knowledge of autism and her brother, we decided to write a children’s book.  Teaching self-determination and advocacy skills to each of my children is very important to me as I won’t always be there.  To learn more about the background story on how Building Forever Friendships – Strategies to Help Your Friend with Autism or Other Special Needs at School came to be, go to: http://www.lindenwood.edu/alumni/connect/publications/docs/connection/2014Fall.pdf (pgs 4-5)

To purchase the book online please go to: http://rosedogbooks-store.stores.yaho.net/bufofr.html

Life is a marathon, not a sprint, and my passion is for ALL children to be given opportunities to share their gifts!  Believe with your heart, not just what you can see, and the skies the limit!

**References

Kluth, P. (2010). You’re going to love this kid. Baltimore:  Paul H. Brookes.

Rock, M. (2000). Parents as equal partners. Teaching exceptional children, 32(6), 30-37.

Smith, B. J., Rapport, M. J. K. (1999).  Early childhood inclusion policy and systems:  What do we know?  Collaborative Planning Project.  University of Colorado at Denver.

Swick, K. J., Hooks, L. (2005).  Parental experiences and beliefs regarding inclusive placements of their special needs children.  Early Childhood Education Journal, 32(6), 397-402.

rachel-morganAuthor Rachel Morgan, MA, CAS is a wife and mother of four amazing children. Her eldest son’s diagnosis of autism is an attribute. She brings to this work the perspectives of both a parent of a child with autism and an educational professional. Rachel has a Master’s in Education with an emphasis in early intervention in Autism and is a Certified Autism Specialist through the International Board of Credentialing and Continuing Education Standards (IBCCES). Follow her on Twitter: @CFCSpecEd, Facebook, or her website

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

 

11 Insightful Tips for Parents of ASD Adults for Getting the Most Out of Vocational Service Providers

11 Tips On Getting The Most From Vocational Service Providers

A lot of what’s in place to support young adults on the autism spectrum entering the work place kind of sucks.

At least, that’s been my opinion in the ten years I’ve coached my son, who has Asperger’s Syndrome, through a maze of social service agencies in his search for full time, meaningful employment. When we started in 2005, I had no reason to expect anything but the very best from these agencies and what they had to offer. My son, then eighteen years old and a high school graduate, wanted a job rather than more time in school.

So, with college off the table, we followed the advice of his guidance counselor by scheduling an appointment with what was then called Vocational and Educational Services for Individuals with Disabilities (VISID)—New York state’s referral organization to other social service agencies.

It was an okay experience. Until it wasn’t.

As I remember, VISID did its job this first time around. They assigned a caseworker to my son, and after several meetings, she sent him off with a list of three agencies and instructions to “pick the one that resonates with you.” What happened next wasn’t VISID’s fault. In hindsight, I blame my naive assumption that agencies would never deliberately lie to their clients. Wouldn’t you think that any agency about to go out of business would be upfront about that? They could say something as simple as, “We’d really like to work with you. Unfortunately, we can’t take on new clients at this time.” Easy, right?

I guess the agency we chose didn’t like “easy.” Less than three months after they helped my son get a job, they’d gone belly up. Not a job coach, supervisor or agency director in sight. And, that job? It was a nightmare for someone on the autism spectrum. Not understanding what our options were (because no one had explained to us how adult vocational service agencies work), my husband and I took over. Together, we guided our son through what he needed to do to get himself out of that minefield and into a better job.

Over the next ten years, our son cobbled together a series of part time jobs while chipping away at his goal of getting a full time job. Despite a fair degree of independence, we knew that he really needed professional support to help with his job performance.

If only we could find it.

When we discovered that our son was still eligible for vocational support, we decided to give the agency route another try. Maybe the second time around our experience would be better.

We thought it might be better because this time around, not only were we older and wiser, we knew what questions we wanted to ask; we came with our hard-earned arsenal of “stuff” to put on the table. Most importantly, my son had a few specific ideas about the kind of job he wanted and the type of company where he’d like to work. We also brought written agendas to preliminary meetings—those meetings you have while you’re interviewing agencies to decide which one you’d like to work with. Yet another difference this time around was the alarming number of young adults on the autism spectrum who were transitioning (and continue to do so) from high school into the work place.

In 2014, Dr. Paul T Shattuck, an associate professor in the A,J, Drexel Autism Institute and Drexel University School of Public Heath, noted that approximately 50,000 young people on the autism spectrum would turn eighteen years of age. Shattuck co-authored two studies published in the Journal of the American Academy of Child & Adolescent Psychiatry that examined employment and independent living among young autistic adults. Over the next five to ten years, I believe this segment of the population has the potential to bury already-overburdened vocational support service agencies. That’s scary if you’re worried about just one son or daughter who will need the services vocational service agencies provide. If you’re that parent, I’ve got something that may help with that.

These eleven tips are designed to demystify some of the job search when you decide to partner with an agency like the ones I describe (if you live in New York state). You’ll have to let me know if they’re effective for navigating similar agencies in other states.

1. Plan ahead

Before you meet with an agency, do as much as you can to lay the foundation for a good job search: If some of this took place while your child was still in school, you’ll already have a starting point. Any prior work experience, internships, volunteer opportunities, skills/talents and interests can be included on a resume. Have copies of that resume in hand.

Personalize your child’s Asperger’s Syndrome diagnosis. In addition to a resume, include a written summary of the features, strengths and limitations of how Asperger’s affects your son or daughter’s learning style and work habits. This doesn’t have to be fancy. The first one I created was handwritten. Here’s a template of a partially completed summary sheet:

What the Agency Needs to Know:
What the Employer Needs to know:
(Name) experiences auditory processing delays. Voices don’t coincide w/the sound source. A written list of tasks is better than verbal instructions for (Name)
When (Name) listens, the speaker’s words reach his ears half a second after speaker’s lips move. (Name) will be more productive reporting to one
supervisor
(Name) might need time to process what he hears. If you’re not sure (Name) understands what you’ve just said, you can ask him to repeat your words back to you

It’s important to note that this sheet is not for employers. It can be a conversational tool for the agency employee to be used when she is talking with the employer. (Once my son was hired, this sheet was a great “talking piece” that his job developer referred to when she discussed reasonable job accommodations with his employer.)

Give some thought to the kind of “company culture” that might be a good fit for your child. As an example: lots of noise, constant interruptions and having multiple supervisors to report to on any given day creates an overwhelming, unpredictable work environment for my son.

Research this carefully. Talk about it at the meeting.

2. Have an agenda for that first meeting

Don’t make this meeting all about your child. In fact, once the introductions are complete, take a few minutes to find out exactly what this caseworker’s job entails. The more you understand what a typical day looks like for her, the better you can support her as she works with your son.

Open that conversation by asking her to give you a brief rundown of her work day. Does she stay in her office conducting interviews, managing her caseload, attending meetings? Are there days when she’s out in the field? If your family needs to reach her, does she prefer email or phone calls? Does she text message?

What’s her turn-around time for replies? If your child sends an email thinking that he’ll get a reply within 15-20 minutes and her turn-around time is 24-28 hours, that’s critical information.

What exactly will she be doing on the client’s behalf? Ask her. The more clarity you have on the specific things she’ll be doing, the smoother your relationships will be. (I always knew that I was asking both for myself and for my son. He doesn’t take the initiative and when he didn’t get clarity there were problems later on.)

If you’re not comfortable asking her how large her case file is, you might want to ask the agency director… before the first meeting. Sadly, overburdened caseworkers are the rule, not the exception. One of my son’s caseworkers handled 150 clients. A young man we know had a caseworker with over 250 clients. Others may have less. You need to know the ratio of number of clients per caseworker.

Don’t ever settle for shoddy, lazy performance. I learned (too late) the importance of asking a caseworker if he’d taken the time to read my son’s file before sitting down with us.

Find out the difference between a “job developer” and a “job coach.” Is there any overlap between these two roles? (Once your child is working, does the job developer fade away or is he someone who continues to work alongside the assigned job coach?)

Ask what the agency guidelines are on “disclosure.” (Disclosure simply means that someone on the autism spectrum shares their diagnosis with someone else, in this case, with an employer.) Know that the agency might have its own opinion. Insist that they support your son or daughter’s feelings about this.

I asked: “Have you ever helped a client write a “script” to disclose the fact that he’s on the spectrum as part of the interview process? No? Are you open to using the ones we’ve written?”

Always make sure you have names and contact information for supervisors, managers and agency directors. Build relationships with these folks. Going forward, you might need to reach out to all of them.

Temple's Mother3. Insist on a working partnership

Despite my son’s ten-year job history, he’s only just learning how to self-advocate. There are conversations where he clearly benefits from having a communications facilitator. Many times, that role is mine.

It’s important to explain this to caseworkers if you have the same agreement with your child.

Both my husband and I have our son’s permission to participate in any and all medical, financial, legal and other matters that HIPAA typically protects when someone is over the age of eighteen.

This means that I can contact his caseworker on my son’s behalf. If this is true for you, make sure you bring this up during those first meetings with agencies—there’s a form your adult child will need to sign waiving his HIPAA privacy.

When your child gets a job, he or she is assigned a job coach. Don’t stop being the professional communicator for your child when this happens. I’m more than happy to reinforce my son’s relationship with this individual as long as it is beneficial to my son.

Some agencies prefer that you work with someone other than the job coach when job-related issues arise. That’s why it’s important to know the chain of communication so that you can work productively with staff.

4. Conversational red flags to watch for

Caseworker says: “That’s too competitive a field for your son.”

Don’t ever let someone dismiss a job or an industry that has captured your child’s heart. There is almost always a way to figure this out when people are willing to think outside the box if what the client wants to do is within his or her reach.

Caseworker says: “… but we’ve always done it this way.”

My son brought four pages of interview questions home after meeting with his caseworker. He told me he thought the questions were “old-fashioned.”

Reading them over, I found myself agreeing with him. Not only were they twenty years in the past, they were questions more suited to a corporate environment, not the small to mid-size company environment that my son wanted.

More to the point, none of those questions fit job descriptions in my son’s areas of interest—which didn’t deter the caseworker. She insisted on using all of these questions as preparation for upcoming interviews.

Caseworker says: “I’m going to tell him that Craigslist is dangerous.”

I said: “If you do that, you’ll jeopardize your own relationship with him. Did you click on the link in that email I sent to you— to see what company he’s interviewing with?”

Caseworker’s reply: “No, I haven’t done that.”

This conversation took place shortly after this caseworker found out that my son had just been hired by one of the more prominent property management companies in our city.

All on his own initiative.

By answering an ad on Craigslist.

Rather than mentally smacking this woman for her prejudices about Craigslist, I reminded her that not every posting on this platform is dangerous. Reputable companies use it, and in my son’s case, it had paid off.

5. Sometimes, you have to coach the coach

My son and I learned a lot in the ten years that he’d been working. That information is too valuable to disregard. For example, we know how important it is to keep a positive relationship with the people who work for the agencies that are supporting him.

I took on that coaching role when I explained why my son wanted to disclose his Asperger’s during job interviews. We got push back from the supervisor and the job developer as they told us that they’d “always done it this way…” They meant that they did not disclose that fact until after an individual was hired.

I didn’t argue because I knew that when my son was interviewing, he could handle this. But wouldn’t it have been great if the agency had been on board with this?

As for those “old-fashioned” interview questions? They were never asked during the two interviews my son had. And he did just fine.

Talking with a potential employer about being on the spectrum? Using several conversational starters from his personalized Asperger’s chart, my son brought this up during the second half of a job interview.

And got hired.

Not because of the Asperger’s.

He got the job because he was an ideal candidate for the open position. The Asperger’s conversation took place after my son’s qualifications for the job had been discussed.

Disclosure is never a one-size-fits-all decision. Conversations about how to handle this take place in autism support groups among parents and young adults who are already working or seeking employment. If you haven’t already, join one. Listen carefully.

6. What happens if there’s a personality clash?

Even with the best of intentions, it is possible that a client-caseworker relationship deteriorates to the point of being unproductive. Don’t let this fester. Contact that caseworker’s supervisor and try to come up with a better arrangement.

It’s a good idea to discuss this possibility at that first meeting. You need to know what the repercussions are if your child feels that he or she has reached an impasse with his caseworker.

The goal is to always keep moving toward the job goal. Wallowing in dashed expectations wastes time.

7. The importance of emails

Go back to that very first meeting with the caseworker and the list of questions you asked. Did you remember to ask her how many emails she has to sort through each day?

If your child’s email (or yours) is one of 200 or more in the caseworker’s inbox, there’s going to be some lag time before you get a reply. Getting an answer ASAP might not be realistic. So, know that going in and be patient.

Emails can be perfect communication tools for adults with Asperger’s who might not excel at spontaneous communication. This is also true with text messaging.

8. Text messaging is a game changer

Text messaging is fast, “in the moment” (which can be critical for someone with Asperger’s), and everybody does it. Except for my son’s caseworkers.

Ask if they text. Don’t be surprised if they say no.

9. Know what’s trending

Does the agency embrace diversity by hiring staff who are intellectually and developmentally disabled?

Disclosure’s a funny thing—they could have someone on board who’s on the autism spectrum and not know it. But, given the fact that inclusion is one of the buzz words trending in two national public awareness campaigns to promote employment opportunities for adults with disabilities, it’s clear that change is imminent.

It’s early days for these initiatives. October 2014 marked public announcements by both groups.

Anthony K. Shriver, founder and chairman of Best Buddies International, and Carlos Slim Helu, a billionaire industrialist, officially launched the “I’m In To Hire” campaign on October 7, 2014.

Their goal? Nothing short of a global campaign to get one million unemployed individuals with intellectual and developmental disabilities into the workforce… in the next ten years.

Right on their heels, on October 29, 2014, Autism Speaks announced that, in collaboration with the Kessler Foundation, May and Stanley Smith Charitable Trust, New York Collaborates for Autism and Poses Family Foundation, they have “…collectively committed almost $7.5 million to support groundbreaking work in disability and inclusion in employment in 2014 and 2015.”  

Their purpose is to expand employment opportunities for individuals with disabilities and to speed up the adoption of disability inclusion initiatives.

So, yes, change is coming, but perhaps not as quickly as we’d like.

This is why it’s important to find out if the agency you work with embraces inclusion right now. If they do, then their company culture reflects what’s coming; they will be more attuned to job-related issues that could be problematic for your child.

10. Support your son or daughter’s independent job search

A wise friend once told me that “the success of your business should never depend on just one person.” She was talking about direct sales but her advice was a constant whisper in my heart in the years following my son’s high school graduation.

Know that the success of your child’s search for a great job should never depend on any one person or on any one agency.

You have, within your reach, a circle of family, friends and business colleagues ready to help your son or daughter. In many respects, all of the time-honored elements of looking for a job still work. Technology shortens the process. Networking drives the journey.

Pick up the phone. Call people you know. If your child wants to interview with a company, find someone who knows someone who works there. The goal is to create introductions so that your job seeker never cold calls a company.

Create a mission statement and a transition team. Here’s what we came up with for my son: “… to find an entry level position with a small to mid-sized property management company with family values.”

I inventoried over twenty years of my own job history to find mentors for my son, places where he could volunteer, and people who would help him write a resume or personally introduce him to potential employers.

Not wanting to discount anything, we went back to agency support. However, the ground work we did prior to making that decision resulted in two job offers that my son got because of networking and his own initiative.

11. It’s okay to share, but never surrender your role

We were twenty minutes into that introductory meeting when one of the agency staff members leaned across the table, smiled, and said, “It’s really okay for you to relax and just be the mom.”

“Yes,” added her department supervisor, “We’re the professionals. Let us handle this.”

I’m sure they meant well and I really wanted to believe them.

After almost thirty years of parenting, I was so tempted to give it up. I might have if I hadn’t spent ten years as my son’s job coach/employment strategist.

I put all of these eleven tips to work during the next 45 minutes. Midway through listening to their answers to all my questions, I realized that relinquishing my role wasn’t an option.

Don’t let it be an option for you either.

From the moment our children are born, we are more than “just moms” and “just dads.” We are skilled negotiators who put together medical, educational and social support systems for our kids. We are self-taught experts on many autism spectrum related topics.

We are consensus builders, teachers, and staunch advocates, relentless about finding programs to benefit our kids. If we can’t find ‘em, we create them.

We think outside the box.

We push the envelope.

By the time our children are ready to graduate from high school prepared to take on the world, we are seasoned professionals.

The only difference between you and me is that my son graduated before yours. I’ve had a lot of time to figure some things out—some of which worked really well. Like these eleven tips.

Pick them up.

Let them work for you.

You can pick up a copy of Kathy Hensel Porter’s 10 page FREE REPORT with tips about how to write job related explaining scripts right here.

Photo Credit: Chris/Flickr

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