It's ok for people with disabilities to want attention

A lot of things that people with disabilities do get pathologized as “attention seeking behaviors”, whether or not they have anything to do with wanting attention.

That’s not the only problem with the whole concept of “attention seeking behaviors”.

Another problem is that there’s actually absolutely nothing wrong with wanting attention. In fact, all communication involves seeking attention in some way.

Taken literally, here are behaviors that involve seeking attention:

  • Saying hello
  • Asking if someone is ok
  • Writing a blog post
  • Performing on stage
  • Teaching a class
  • Waving to someone
  • Asking a question
  • Reporting a problem
  • Commenting on something
  • Posting on Twitter

“Attention seeking” isn’t a neutral technical term. It’s professional jargon for saying “this person becomes unworthy of attention when they do this, and so we’re going to aggressively ignore them.”

That’s a value judgement, generally a very harsh value judgement. There’s nothing scientific, technical, or medical about that kind of judgement. And it’s a very cruel thing to do to people who don’t deserve it.

tl;dr Calling something an “attention seeking behavior” isn’t a technical term; it’s a (generally unwarranted) insult.

My experiences with ABA

content note/trigger warning: ABA therapy, restraint, medical abuse, psychological abuse, infantilizing of an autistic adult

I forgot to do writeups of ABA….sorry….so here’s a write up of it, past tense. I’m gonna do this in sections, categories, if you like, simply because that’s going to be easier than doing it session by session. If you want an account of what a session looked like, I did a full write up of session 1 here. I’ve tried to do this in a logical order, so the information makes sense in light of the earlier sections, let me know if this seems to not make sense.

Keep reading

anonymous asked:

Hello, just wanting a quick For-Dummies answer here. I've read some of the posts on your blog enough to know ABA is bad and torture etc. but we had a speaker who was an ABA (which made me double take when I heard), the thing is he just talked about stuff they do such as teaching kids to substitute odd behaviours with better ones, e.g. kids who love "nappy-content painting" are taught to use playdo or use prompt cards to get baths, and things like that, I didn't really understand why it's bad?

Hi anon! I’ll do my best.

ABA is a scientific method:

  • the first step in ABA is the observation of the individual and their response to their environment in order to identify unwanted “target behaviours”
  • the second step is the systematic use of behaviourism-based techniques (aversives, rewards, operant conditioning) in order to eliminate unwanted “target behaviours” and encourage wanted behaviours

ABA as a “treatment” for Autism:

  • the basis of ABA is behaviourism and the medical model of disability, aka the deficit/illness/”broken baby” model
  • ABA’s main focus is on the normalization of behaviour (ie. extinguishing stimming, table readiness, “quiet hands”, eye contact) rather than on adaptive learning or accommodation
  • and the end goal of ABA is often for autistic children to be “indistinguishable from their [allistic] peers”
  • falling in line with those values, ABA principles push for neuro-normative methods of expression, like talking, even when alternative or neuro-atypical methods of expression, like AAC, would be better for the autistic in question
  • in ABA, consistent positive reinforcers/rewards and aversives/punishments are used to enforce behaviour— reinforcers being withheld until the wanted behaviour is performed, aversives being used when an unwanted behaviour is performed
  • common reinforcers include edible treats (gummy bears, chips, cereal); praise and verbal or physical affection; tokens that can be exchanged for “privileges”; stickers or stamps (often on a behaviour chart); a piece of lego or of a puzzle (aka a component to something the autistic wishes to play or complete); access to a favourite toy or beloved object; break time or a moment of rest from the “therapy”; access to the autistic’s special interest; time spent engaged in a “preferred activity” (aka something fun, like going to the park or watching a DVD)
  • an increasingly popular method of reinforcement in the ABA/compliance training world is the use of a clicker (a training device for animals that make a loud sharp “click” sound to indicate that the wanted action has been performed and that a treat or reward is forthcoming)
  • common aversives include the removal of tokens, stamps, stickers, or desired play components (lego, puzzle pieces); the confiscation of favorite toys or beloved objects; the withholding of snacks, water breaks, or recess/break from the therapy; the prevention of engagement in the autistic’s special interest or preferred activities; the use of “taste aversives”, such as pickle juice, vinegar, hot sauce, wasabi, or any other “effective” edible substance (the taste aversive is applied to the autistic’s mouth through the use of a spray bottle, or a q-tip, cotton ball, or pacifier soaked in the substance of choice); the use of tactile aversives (some examples are styrofoam, glue, bar or liquid soap, a piece of carpeting or upholstery fabric, sandpaper, or whatever incites tactile defensiveness or distress in the autistic); and the withholding of praise and/or physical or verbal affection
  • in DTT (Discrete Trial Training, which is considered a softer, kinder version of ABA) the therapist or practitioner will not look at, engage with, or respond to the autistic unless they perform the wanted behaviour, and any unwanted behaviours are ignored in the same way, or met with “passive resistance” from the therapist 
  • ABA as a treatment for autism focuses in part (and often a large part) on compliance training— for a truly horrific example of compliance training, see here (warning for massive ableism, dehumanization of an autistic adult, infantilization of an autistic adult, the demonstration of compliance training/ABA on an autistic person)

What you describe in your post:

  • does not sound or look or smell like ABA, so I’m going to go ahead and say it’s not ABA
  • so while the speaker may have truly been an ABA therapist that follows ABA principles, they either didn’t give a very good explanation of ABA or they intentionally left a lot out to make it sound friendly and great
  • in the case of your “nappy painting” example, that is a good and clever use of sensory tools/providing a good and healthy sensory diet for the autistic, and/or a commendable application of AAC in order to provide a more effective method of expression for the autistic and reduce their frustration
  • but neither of those things are ABA
  • I’m not sure how it happened, but somehow any attempt at all to teach an autistic child anything became known as “ABA”— this really shouldn’t be the case, since ABA is a distinct scientific method, not just any kind of therapy, and especially not just parenting
  • the calling-everything-ABA thing may have arisen out of the fact that, in the US, ABA is the only therapy that insurance companies will cover for autistic children, and so a lot of not-ABA therapy gets called ABA therapy so it can be covered
  • but seriously, what you describe is not ABA, but it is exactly what the parents of autistic kids should be doing— providing alternative communication methods, putting a good sensory diet in place, substituting unsafe sources of sensory input seeking for safer and more effective sensory input
  • aka, parenting their children in a way that understands and accommodates their individual sensory seeking and communication needs

In conclusion:

  • ABA is a distinct scientific method that arose out of the behaviourism movement and the medical model of disability; ABA employs the systematic use of operant conditioning, positive reinforcers, and aversives; and ABA is largely focused on behaviour normalization and “indistinguishability from peers”
  • autistic children may benefit from some occupational therapy to help with sensory integration, or speech therapy, or play-based therapy to foster development at their own pace, but all of those things should be the frosting (or smaller part) of their life, and the main part of their life, the cake, should be composed of the same teaching, play, mentoring, and time together that non-disabled children receive from their parents
  • and ultimately, in order to parent your autistic child well- to teach them to use AAC, or to provide sensory input catered to their brain’s needs, or to grow them up into healthy, self-confident autistic people- ABA is completely unnecessary, and often even detrimental to those goals

That ended up being longer than I intended, but honestly, this is the best I can do while still doing justice to the topic. I hope it helps.

Appearing to enjoy behavior modificiation is not meaningful

One common response to criticism of ABA is to claim that people subjected to it enjoy it:

  • “My child loves his therapist and asks to go to sessions!”
  • “All of my clients smile and have fun!”
  • “My ABA is play based!”

What people forget is that affect is a set of behaviors, and that behavior modification methods work as well on affective behaviors as they do on anything else:

  • You can reinforce people to look happy
  • You can reinforce people to praise therapy
  • It doesn’t have to be an explicit part of the behavior plan to happen
  • And it can keep happening even after you fade direct prompts or direct intentional reinforcers

ABA programs give the therapist massive power over the person. That power in itself can cause people to look happy, through a more subtle reinforcement mechanism than takes place on a behavior plan:

  • If you have power over someone in the way that behavior therapists do, they’re going to be highly motivated to please you
  • If they figure out that you want to believe that they are happy, they are very likely to act like they are
  • If you treat them better when they display the affect you want or praise you, they’re likely to act happy.
  • It doesn’t mean they’re actually happy
  • Or that what you’re doing is good for them

(Also, affect often is an explicit part of someone’s behavior plan. It is not at all uncommon for ABA programs to involve actively ignoring distress and withholding attention and rewards until someone looks happy. It is not at all uncommon for ABA programs to involve teaching people to smile, to hug, or to otherwise do things that would out-of-context indicate happiness, enjoyment, or affection. It doesn’t have the same meaning if it’s prompted or trained.)

Also, programs based on positive reinforcement involving controlling someone’s access to stuff they care about:

  • The first step in a program based on positive reinforcement is to find out what someone most enjoys or cares about
  • (This is called a preference assessment or a reinforcement inventory. Here’s an example.)
  • And then making sure they have no access (or limited access) to those things outside of sessions or other situations in which someone is actively reinforcing them to do something
  • Of course if someone’s only access to everything important to them happens in sessions they will ask for sessions
  • That doesn’t mean they like the fact that someone has that level of power over them
  • (No one likes being manipulated that way.)
  • That doesn’t mean they like the things that the therapist makes them do
  • That doesn’t mean the power dynamic is harmless
  • That doesn’t mean ABA is a good approach to teaching

People who can’t say no, can’t say yes meaningfully. Looking happy isn’t meaningful if you’re rewarded for affecting happiness and punished for looking visibly distressed. Making the best of a bad situation isn’t consent.

I don’t want to miss you

By Bernice Olivas

“But I don’t want to miss my Mommy,” My son Gareth says. He just turned eight this year. His eyes are wide and his mini Mohawk has begun to grow out. He looked like such a big boy when he got the Mohawk, he doesn’t look like a big boy anymore. He looks like a baby. He is crying and grasping my fingers. “No Idaho, please. Want mommy.”

“I’m sorry baby, but we are all done with Nebraska. It is time to go home to Idaho. I wish I could go with you but I have to stay here. Mommy will see you in June. Mommy loves you so much.”

“But it doesn’t make any sense!” He is angry now and I can’t breathe because if I breathe I’ll cry, and I can’t cry. I can’t cry. “No baby, it doesn’t.” I hold him tight one last time and then his father takes him from me. Our eyes meet and he reaches out to me with this other hand, we brush fingertips but do not hold on. We can’t hold on now, not if we’re going to do this thing,

They leave. I still don’t cry, not when they pull out of the drive, not when I can’t see them anymore, not as I tick off the miles in my head. I clean and pack and make plans and in my head I am keeping time. They are an hour away, three hours, and then six hours. It is February 18th, coincidently the day before I turn 32, and I am keeping time in my head until my children cross the state line. Once they are out of Nebraska I can feel safe. When they are somewhere in Wyoming I sit on the bathroom floor, lights off, and in a time honored tradition of women and mothers everywhere I shove a towel into my face and wail. I let it catch the tears and the keening noise I am making, because even alone I cannot unlearn that this kind pain should remain hidden.

What I don’t tell my sons and what they must never know is this

You are not safe in Nebraska my beautiful, autistic boys. Your autism baffles teachers, disturbs neighbors—your autism is too noisy, too messy, and often too naked. The way you flap and spin, the way you react to too much or too little sensory stimulus and your unrestrained, unexpected laughter are read as “unacceptable behaviors” here. Our CPS case manager does not speak body. She cannot hear I love you in a gentle head-butt, or decipher what you really mean when you repeat back commercials or movie scripts. She doesn’t understand and she thinks that your “behavior” is an indication of my neglect or abuse. She thinks that because I don’t make you wear socks with your shoes, not even on snow days, that I am neglecting you. She will not hear me when I try to explain that socks makes you itch and ache and fret and want to be free of the weight on your skin. All she sees is you misbehaving, getting undressed, not speaking when spoken to. That, my beautiful son, is not OKAY here. You are not okay here. So I must send you somewhere safe. Somewhere you will be okay.

It is so not-okay that total strangers accused us of neglect when they saw you get undressed at the park and when they see you undressed on our balcony. It’s so not-okay, that people at your school accuse us of neglect for not forcing you to wear socks even though they have witnessed the way socks make you scream, scream, scream and make you tear them off or scrabble madly at your shoes until you hyperventilate and curl into a baby ball and keen. It is so not-okay that our case manager, even though she herself has admitted that there is no evidence that we are bad parents, bad people, has said, “You need to take our help because if these behaviors do not stop your kids will end up in the system.”

And what she meant, my sons, is that I need to allow them to send an analyst to our home and your school to observe you, to find the problems with you, and then create a program to “fix you”. The state wants to teach you to comply. They will give you a treat (a reinforcer) when you are good and physically walk you through the motions of obedience when you say no. Your right to say “NO” will be trained out of you. It does not occur to them how naked and vulnerable a person is without their “NO”. Wars have been fought for the right to say “NO”. But I am supposed to give yours away, let them train it out of you for the sake of my convenience, for the sake of “good days” at school, and so that complete strangers are not made uncomfortable by your “strangeness”. NO! No! No! You are both wonderful just the way you are. But if we do not comply “voluntarily”, if I refuse their help we will be relabeled as “at risk” and I will no longer have the right to refuse their help. The threat is clear, what she meant was, if we didn’t comply she would take you away from us.

It is also not okay that we are poor and that your father is the stay at home parent. Our case manager keeps calling your daddy “unemployed” and says to me that he is the problem. He is too aggressive, to over protective, his attitude is too negative. Daddy calls her out for talking down to you. Daddy steps between you and her when she ignores your boundaries. Daddy scares her. She says he needs to go back to work. If he does the state will pay for daycare. When I push back, ask her to consider the fact that she might be overstepping some lines, she says that “everything happens for a reason” we should be more open to learning from her and the situation. She is in her early twenties, we are her second or third case and by her own admission she’s “never worked with an autistic family” and “doesn’t know anything about autism” but she assures us that she’ll “Google” it. In Nebraska your life is in the hands of a person who has spent less than three hours in your company, who has no training in autism. In Nebraska, the case managers, the anonymous callers, the school social workers are all considered the experts and the parents are treated like the enemy if we don’t comply.

So if I don’t let you go, right now, with no explanation, without saying goodbye to your friends and your teachers I could lose you. I could lose you to a system that sees you as a broken unit to be fixed or replaced, a system with a vile history of taking children out of their homes and losing them, as if they were mittens, or pen caps, or old receipts, or rubber bands.

I can’t tell you any of this because I cannot stomach the thought that you might hear, your fault, this is your fault. I know I will answer to this later when you are almost-men and you call me to account for my mistakes, as all children do. I hope you understand. I hope you don’t see my sending you away as cowardice. I hope you don’t see my staying behind to finish my PhD as abandonment. I hope you understand why all I can say is, “I don’t want to miss Gareth and Osiris either, but we are all done with Nebraska, it’s time to go home to Idaho.”

At some point after they are gone I fall asleep in the couch, clutching their comforter. The next day I go school. I am a Doctoral student at UNL, a member of the English department. I teach college students and work in the writing center. I hold a Master’s degree. According to the 2012 U.S. census just over 10.3% of the population holds a comparable degree. Only 4.1% percent of Latinos hold the same degree. Those numbers get smaller as my gender and Native heritage are taken into account. I am first in my family, on either side, to obtain a college degree, the first to obtain the Masters, the first to be accepted into a doctoral program. My Master’s Thesis was on the subject of Autism. One of the guiding Professors in my research was an expert in the area of Severe Disabilities and Autism Spectrum Disorders at the Barkley Memorial Center, University of Nebraska. My education does not protect my children. A case manager in Nebraska is required to hold a B.A but not required to specialize in social work, family services, or education. No one I interact with in child protection services specializes in Severe Disabilities or Autism Spectrum Disorders or special education. That day I teach, I run office hours, and I smile. I come home to an empty house and wonder again how all of this happened, and why.

You can read Bernice’s complete essay as a PDF here: I Don’t Want to Miss You – Bernice Olivas


Another great find I found in my dad’s photo collection in Aba, Nigeria this week- old studio photographs from many of the photo studios that were active in Aba during the mid 20th century. These include Paragon, Glamour and Elias studios. Of those I can confirm that Elias studios is still active (at least in some capacity, even if not in name) as some of the descendants of the founding Elias are still shooting as professional photographers in Aba. One of them shot an event for my dad just a few years ago.

It was really great finding this collection and also seeing just how many different studios there were in Aba in the mid 20th century (at least 3)- something I wouldn’t have expected personally despite Aba’s position as a big historical trading center for that part of Igbo land. And not only were there multiple studios in Aba- they were all cranking out incredible work. The competition was clearly stiff and the artistic quality was absolutely spectacular too.

In the last few months I’ve been awed by the mid 20th century work of Malian photographers including Seydou Keita (my personal favorite photographer of all time) and Malick Sidibe. But Nigerian photographers were also active at the same time producing incredible work.

A few weeks ago I went to the National African Art Museum’s exhibit of Chief S. O. Alonge’s work as the court photographer for the Royal house of Benin. His work was stunning and I would highly recommend people go see it if they haven’t already. Besides him though I did not know of any other early-mid 20th century work by Nigerian photographers. “Most of the action in African photography at the time couldn’t have been limited to Mali, though, right?” I wondered. Then I came across this treasure trove of amazing work just sitting in my dad’s library from studios active in Aba around the same time as Keita and Sidibe in Mali. Simply amazing and these are just a small sample of the photos I saw from these Aba studios which I quickly snapped with a low res photos from my iPhone.

There is so much amazing African photography that inspires me as a Nigerian American photographer today. And I hope that despite the lack of coverage of our art and predecessors in many Western circles, that we can continue to document and record the amazing work of the African artists who came before us.

Autism: does ABA therapy open society's doors to children, or impose conformity?

[Good to see ABA questioned in a mainstream news group!]

“But Amy Sequenzia, 31, a non-speaking Autistic – she prefers this term to describe herself – and member of the Autistic Self-Advocacy Network, argues that defining success as behaving like a non-autistic person is unethical and abusive.

“They refuse to acknowledge that being trained to obey, and to force our brains to do things in a way they are not wired to do, causes long-lasting pain or makes autistics learn the ‘correct’ answers and ‘behaviors’, while keeping their autistic essence buried and unexplored. Self-determination begins with choice and stories of adults who only want to please and look ‘normal’ should not be considered success stories,” Sequenzia wrote via email.

This is partly why Sequenzia prefers to be identified as Autistic with a capital “A” instead of as a person with autism. “I use identity-first language because it is my identity and it cannot be separated from me. I don’t think I need to remind people that I am a person […] would we say ‘a person without autism?’. Unless the autistic himself prefers person-first language, it should not be something parents, politicians, organizations or the media impose on the rest of us. I am not ashamed of being Autistic. I am not ashamed of being Disabled. I am proud. The capital letter is a matter of pride and a little bit of defiance,” she added.”

A behavior modification aftermath

Content note: This post is written with parents and professionals in mind. It’s about a common way that rewards-based behavior modification hurts people, and the importance of being aware of that effect in work with people who might be ABA survivors.

I’ve seen a lot of well-meaning people who are trying to fix special education and adult disability services say things like “you have to find out what they’re interested in and incorporate it.”

This can be good advice. It’s also important to realize that this is loaded, and that not all disabled people are going to be willing or able to show you what they’re interested in.

For people with disabilities, “what do you like?” can be a deeply intimate personal question. It can be very dangerous to let people know what you are interested in.

Autistic people (and others with intellectual and developmental disabilities) are often subjected to intense behavior modification. This is often aimed at silencing them, getting them to pretend to be non-autistic, or otherwise change in ways that deny fundamental things about who they are.

You have to take some pretty extreme methods to get someone to comply with that kind of behavior program. One traditional way is to use painful punishment like starvation and electric shock. These days, that’s considered distasteful, and most therapists prefer to use positive methods.

In practice, what that often means is that anything a disabled person expresses interest in will be taken away and used as a reinforcer for a behavior plan. The more they care about something, the more their access to it will be contingent with compliance with what powerful people in their life want.

Even if the thing they care about is something like math. Or books. Or access to fresh air. Or their teddy bear.

People subjected to this kind of thing learn quickly that when they express interest in something, it will probably be taken away.

And beyond that, they learn that when people know what you care about, they will use it to manipulate you into doing awful things to yourself. In many cases, this includes being manipulated into maintaining a grateful affect and praising the therapist.

When people have experienced this type of violation, sharing their interests with anyone is a big risk. Particularly if that person has power over them. Particularly if that person is a member of a professional culture that largely approves of what was done to them. (And if you’re a teacher, therapist, direct support professional, or similar, you have power over them and your professional culture approves of misusing it.)

It’s important to keep in mind that people you work with have every reason to believe that it is dangerous to tell you what they care about. They don’t know what you will do with that information, and have every reason to believe that you will use it against them. (Or that information they give you will get back to people who will do so.) It might take a long time before some people are willing to share their interests. Some people may never trust you. The way you teach and offer support needs to take this into account.

tl;dr It’s important to be aware of the loaded nature of asking disabled people to express interest in things. It’s important to make space to incorporate interests; it’s also important to allow people to keep their interests private.

a note to (what feels like) every ABA therapist ever

If I’ve linked you to this post, congratulations. You’re an ABA therapist who is currently defending ABA to a bunch of autistics and/or our allies and/or the parents of autistic children. I’ve gotten tired of typing endless versions of this post for every new ABA therapist I encounter, so I decided to make things more efficient. It usually goes roughly the same way every time, anyway.

I’ve probably already engaged you in conversation, and you are probably proving frustratingly unwilling to listen. I bet you’re pulling the “my ABA is not abuse, I’m a great ABA therapist, my clients are always so happy to see me, maybe there are a few bad apples but most ABA therapists are great and really love their clients” thing right now.

Well, here is something that may surprise you—

it is the autistic people being submitted and who have been submitted to ABA, and not the ABA practitioners, who get to decide if ABA is abusive or not.

And quite frankly, as an allistic person trained and educated by an inherently ableist, violent institution, there is a good chance that you wouldn’t even recognize the abuse as abuse. 

Autistic people perceive differently, we have different pain and sensory experiences, we feel things differently. Allistic ABA practitioners, no matter how experienced or “empathetic”, really don’t have any idea what it’s like to be autistic, and they never will.

That’s why it’s so critical for you to actually listen to autistic people, rather than shouting over our voices and stepping all over us as you rush to defend your profession. If you actually care about autistic people,

who are being actively oppressed, stripped of their autonomy, mistreated, bullied, abused, dehumanized, and even traumatized by the non-autistic majority every moment of every day,

then you need to sit down and listen to what we are saying. That’s the only way to learn, and the only way to put an end to this mess of mistreatment and ableism. Heaven knows the autistic community can use all the allies it can get.