Showing posts with label ABA therapy. Show all posts
Showing posts with label ABA therapy. Show all posts

Wednesday, July 25, 2012

The Various Ways of Being Excluded

Estée Klar
www.esteeklar.com

My son Adam has been in “therapy” since he was 20 months of age. I have reams of notes and binders used to create his programs, track his progress, develop his plans with other professionals who use ABA, RDI, Floortime and other methods. I have a decade of experience with autism education and various therapies, many of the approaches dubious. I’ve witnessed improvements in the field, and I continue to have a watchful eye. I predicted Adam would be forced into an ABA program, and here we are, in an segregated school for autistic children. Not that it’s a “bad” thing. I am actually grateful to be in a system that is set up more for him rather than completely disregards him. Adam, for now, is happy there and he is learning, but it’s a fact that it’s still exclusion which we mitigate with other inclusive programs.

ABA is something we’ve had to contribute to improve upon, because it’s really hard to change the system. To me it is in part a method, and in part a label for a type of education that in some schools, uses other methods in addition. Adam and I have to “fit” into a mold and make it the best for him -- those are our barriers and limitations for now. We work to fill in the gaps ourselves.

I learned and taught Adam how to type ... by myself, by reading, studying, and consulting others with expertise. Now his school builds upon what I started. I have now five years of typed dialogues between Adam and myself, methods, and back story of how it all began. He would never had had this opportunity had I not taken his education and communication upon myself, and I’m not shy to admit it because I hope such approaches will become more mainstream. I am not alone in this among autism parents. We make our own roads and other parents will share the work they’ve done. (Recently, I was asked to write a book about teaching Adam typing, and may do so after this year of finishing my M.A. in Critical Disability Studies.)

We still work towards Inclusion, but when I made a recent query within the public system, as predicted, it ended up that Adam would be put in the “lowest functioning class” (their term, not mine). His cognition and “capacity” was determined by his limited verbal ability and results on standardized tests (which we know do not befit the autistic person, as much as a dyslexic person cannot read typical text). How many students in these classes, no matter what their label, are not getting the education they deserve? Whose to decide on someone’s functioning level and “capacity” when we give unsuitable tests? Who has the right to decide who is normal and abnormal and how do semantics and labels effect people’s lives? Finally, if we decide to write off a “class” of people from the get-go, where do we end up? We are all affected, autistic or not. How we treat our collective members of society is a reflection of how we think about ourselves.

It seems there is a group of people who don’t understand (or want to set others astray) on the meaning of neurodiversity, which basically acknowledges that different people have different neurologies that make them learn and interact in the world in various ways. Myths are spun because it is assumed that if we “embrace” autistic people (some of us have been labeled “Neurodiversity Advocates” in a negative context) it will not serve their politics. I suppose, in the system we currently have which is so exclusive and politically limiting to us, we can understand the method -- but I think it’s ultimately detrimental. An exclusive, “tragic” and medical approach to disability limits community membership and opportunity.

Until recently, as autism parents, we have had to feed into the “autism tragedy” model in the belief that this is the only way to garner financial support and services. Despite inroads against the medical and disability-is-tragic models, there are many new parenting studies which seem intent on proving that autism causes families to break apart, which to-date, cannot be proven. This is another way of excluding autistic people and their families -- by seeking something to blame, researching etiology and causation instead of spending money on understanding autistic individuals and bettering their quality of life.

If we accept and believe in our children and don’t get tragically depressed, we are written off (as I have been on numerous ocassions) as being in denial. I have been labled a neglectful parent, and a “mental case” (a revelation of the prejudiced inclination of the autism “advocate” who stated that about me). “Those who stray from the this prescribed script [the tragic or depression 5-staged model from grief to acceptance] -- for example, by not being as depressed as predicted -- run the risk of being regarded as in a state of denial and in need of further psychological guidance and counseling (Oliver, 1995; Reeve, 2000; S. Wilson, 2003).” I think life is all about struggle and we have to work with it. Nevertheless, when we write publically, we leave ourselves open to criticism of all kinds. I embrace that too, but I will also take it on.

It has been challenging to write my blog for the past few years. I’m not allowed, according to some autism parents, to take joy in my son for who he is as an autistic person. My own ups and downs are disregarded if I do not publicly lament in the same fashion as others do. I opted not to do this because I always kept my son and his community in mind. If I were an autistic person, I thought, how might I wish to be regarded? I don’t criticize others for their depression because each one of us has to take our own unique journey. I simply believe that I, personally, have to exercise a discipline in my thoughts and feelings, which is not to say I don’t have the same kind as everyone else. I have imposed this upon myself. I have always kept Adam in mind when writing publically because I believe one day he may read this. I also wish to embrace and listen to the autistic community (that is, autistic people). It’s unfortunate when others feel they have to “spin” for political reasons or their own benefit.

The other political debates and controversies lie in semantics and definitions. Words are important as they reflect our thoughts about the way in which we see ourselves. We work against traditional systems that have, to date, been oppressive and exclusive against the disabled. Paul Hunt first challenged what we call today ‘ableism’ (a society that favours the able-bodied), in his 1966 book, Stigma: The Experience Of Disability. He said, “We are challenging society to take account of us, to listen to what we have to say, to acknowledge us as an integral part of society itself. We do not want ourselves, or anyone else, treated as second-class citizens, and put away out of sight and mind.” (p. 158).

The Union of the Physically Impaired Against Segregation (UPIAS) was formed in 1974. They re-defined the distinction between “impairment’ and “disability” as part of their mandate to “criticize organizations control-led by non-disabled ‘experts’ for their failure to address the social barriers central to disabled people’s exclusion from mainstream economic and social activity and their lack of accountability to the disabled community.” (p.29)
Impairment: lacking part of all of a limb, or having a defective limb, organism or mechanism of the body;
Disability: the disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. (UPIAS 1976z, p. 14).
This social model approach breaks the traditional causal link between impairment and disability. The ‘reality’ of impairment is not denied, but it is not necessarily a sufficient condition of disability. (p. 30).
Writing about autism as a joy, my absolute love of my son for who he is, my personal struggles without pandering to the pressure to lament in typical ways while embracing others’ need to make their own unique autism journey, is about inclusion of everyone. It begins with the fundamental acceptance and belief, however, that all autistic individuals are worthy and valuable members of our collective. It’s a necessary premise.
The social model is not about showing that every dysfunction in our bodies can be compensated for by a gadget, or good design, so that everybody can work an 8-hour day and play badminton in the evenings. It’s a way of demonstrating that everyone -- even someone who has no movement, no sensory function and who is going to die tomorrow -- has the right to a certain standard of living and be treated with respect. (Vasey, 1992a, p.44)
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Reference:

Barnes, Colin, Mercer, Geof and Shakespeare, Tom. “Analysing Disability” in Exploring Disability: A Sociological Introduction, pp. 1-42. 1999 Polity Press.

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A version of this essay was originally published at www.esteeklar.com.

Friday, June 8, 2012

Sensory Issues vs. Behaviors: On the Recent AAP Policy Statement

Brenda Rothman
mamabegood.blogspot.com

Last week, the American Academy of Pediatrics (AAP) released a policy statement (1) on sensory integration therapies. The AAP recommended that pediatricians should not diagnose sensory processing disorder as a stand-alone diagnosis, but should refer children for an evaluation for other possibilities, like autism, ADHD, motor, or anxiety disorders. AAP also advised pediatricians to inform parents of the limited amount of research for sensory therapy and to help them set up a program to determine its effectiveness.

Stating that we should monitor and judge the effectiveness of sensory therapy seems straight-forward and logical. However, the pediatricians' statements about the policy reveal an underlying problem. Their argument that sensory issues may actually be behavioral is not untenable. But it also has the potential to cause harm. Given the discomfort, the related issues like emotions, relationships, brain science, parenting, and the risks of treating sensory issues as behavioral, we need more from our doctors. We need common-sense, evidence-based "monitor-and-evaluate" advice, but also need to consider the whole context. Consider adult autistics as a valid resource. Address the pain, emotions, and related problems of sensory issues, not just behaviors. Evaluate the whole person. Think beyond "we can't tell for sure what it is" to the science we do know about the amygdala and brain chemicals. Acknowledge research about sensory overload and genetic hard-wiring in the brain (2).

My son Jack, diagnosed with autism at 3 1/2, has received sensory-based therapy for most of his life. Jack was born seriously ill and spent his first six weeks in the NICU. In week five, he was moved to a bassinet by the NICU door. Every time the door banged, he startled awake. How I hated that door.

Today, Jack's system reacts strongly to certain sounds (zipping, clapping, for example), visuals (cloth flapping in the wind, for one), and anything wet or sticky on his hands. He also has difficulty with balance and with figuring out where his body is compared to objects outside his body. He experiences anxiety from trying to manage his environment of constant sensory input, and as a result often feels overwhelmed and exhausted. Sensory approaches like swinging are a huge source of relief for him. Other sensory approaches seem to help a little, like weighted blankets and jumping. But I couldn't see results from spinning or listening therapy, so we didn't keep these in our repertoire. So, in my experience it seems logical that parents should judge the effectiveness of sensory therapy for themselves since the current studies are insufficient.

But then a HealthDay report (3) suggested that sensory issues were, in fact, behavioral problems:
No one disputes that children with conditions such as autism can have abnormalities in their responses to sensory stimuli, including sight, taste, touch and sound. For example, autistic children may have aversions to loud noises, to certain food textures or to being touched unexpectedly, Zimmer said.

But that doesn't necessarily mean the problem is with their brain pathways for processing sensory information, as the term "sensory processing disorder" implies.

Instead, some other issue could underlie their reactions to stimuli, such as a behavioral issue, said Dr. Susan Hyman, chair of the American Academy of Pediatrics subcommittee on autism and an associate professor of pediatrics at University of Rochester Medical Center, in Rochester, N.Y.
When asked by phone about this issue, Dr. Susan Hyman explained her position. While sensory issues exist and are biologically based, she says, we cannot disentangle sensory from behavior. While a child's reaction to a fire alarm truly does have a biological basis, anxiety builds up around the event, so we have to teach them ways to soothe their anxiety, such as earplugs. Since we don't have evidence that an sensory solution like auditory integration training works, we have to have a complex treatment plan, and the main component should be behavior therapy.

As another example, Dr Hyman continued, Pica, or eating non-food items, may be a result of sensory-seeking or it might also be a developmental delay, since mouthing is a way that younger children explore the world. However, she added, it might also be a perseveration as a result of autism. She suggested, we could give the child an appropriate object to chew. (Maybe the line between sensory and behavioral has blurred, but ear plugs and chewy toys are standard sensory tools.)

Pressing forward. When Dr. Hyman noted that the sensory/behavior issue hasn't been resolved yet by neurobiology, I asked her whether we've talked to autistic adults about their experiences. She noted that some case studies have been done with adults and that some autistics, like Temple Grandin and Donna Williams, have reported their sensory experiences, so it is important to look at the biological basis.

Still, her conclusion remains the same. Though sensory issues are real, they might not continue after the original sensory experience, so subsequent experiences may be behavioral. Since we can't tell sensory experiences from behavioral presentations, the treatment may include sensory therapy, but the main treatment should be behavioral.

Dr. Hyman was quick to assure me that "behavioral" does not mean "volitional," but the general understanding of the first term is fuzzier. People often use "behavioral" to mean "misbehavior." Applied behavior analysis uses rewards and consequences to identify and change problematic behaviors, so, on some level, "behaviors" must involve choice, like choosing to avoid a negative or to get a positive.

Even without resolving the willfulness problem, though, the AAP's sensory/behavioral position still raises questions. We have to ask about 1) the physical pain behind sensory issues, 2) the interrelated issues, 3) the risks of treating sensory as behavioral.

1. The Physical Pain of Sensory Issue

I am not autistic, but I have a highly active alarm system. I startle more often than other people. Loud noises or unexpected events, like seeing someone I didn't expect, startle me. It's a physical reaction. I jump, my heart pounds, my breathing stops. It isn't an anxiety problem around those particular issues. I don't avoid loud noises or unexpected events. I don't think about them any more than other people. I don't think about them at all. I just get startled.

Psychologist Jerome Kagan (4) would say I was born with a "high-reactive temperament" due to an inherited, genetically-wired, low-threshold, highly sensitive amygdala (5), the part of the brain and sympathetic nervous system that takes sensory input in and processes emotions out. The amygdala pulls in sensory information and figures out the basic emotional responses: fight, flight, or freeze. We can't change our amygdalas. They are inherited and hard-wired. We can learn tools to cope with our individual amygdalas, but it causes unnecessary stress to suggest it can change. That startle I get from loud noises or unexpected events? It is a physical jolt. My body flinches and my heart jumps. It's painful.

My son, who is autistic, has a high-reactive amygdala, too. He startles easily and he has a high-reactive sensory processing system. For example, when Jack eats or has his teeth brushed, he manages sensations that are painful, strong, and unpredictable. He describes the sensations as worse than a headache but not as bad as falling down on his knees. So, it's more than a dull ache and less than a sharp pain. It's painful.

Lynne Soraya, a writer with Asperger's, describes being hit by a car when she was nineteen while crossing a busy street. She was already experiencing overload from an earlier argument as she waited for the walk signal and stepped into the crosswalk. Unable to process her environment, she didn't see a car turning into her path until it was too late. The car hit her, causing permanent hearing damage. Lynne asks, "What is the behavior that needed to be managed there?" The problem is not crosswalk safety. Lynne followed all the rules; the driver did not. The problem with a behavioral approach is that we ignore the context of the individual and his sensory issues. As Lynne says, "just ignoring the pain, discomfort, and danger that can come with sensory integration issues is simply not acceptable." We have to consider the issue of pain behind sensory issues. To do otherwise, Lynne notes, "is inhumane."

2. The Interrelated Issues

Not only does the amygdala process sensory input, it also processes emotions. As Lynne puts it, "Emotional upset and sensory integration issues, for me, go hand in hand -- the energy it takes to deal with one will vastly affect my ability to manage the other." Because the amygdala is busy attaching emotional meaning to the sensory input it receives, it makes sense that once Lynne had depleted her emotional energy, she no longer had the energy to process the visual signal of a car coming into her path.

But there's also the emotions a person feels upon experiencing a sensory overload. The fear and helplessness (6) a child feels during a sensory overload is genuine. We need our pediatricians to consider the whole child, not just sensory or behavioral, but the stress and emotions that come with it. When we talk about a child's sensory distress, we should hear doctors validating that distress and offering ways to help our child. Not just to be empathetic, but to help us understand the brain's complex relationship between emotions and sensory processing. For example, when we provide safety, comfort, and reassurance, our calmness releases helpful chemicals (7), like oxytocin (8) and opioids, in our own brains and our child's, calming the overactive amygdala. If we ignore or walk away from a child in distress, as some parenting techniques may suggest, those chemicals are not released. The same is true if we treat the distress as a discipline issue.

It's not merely an "either sensory or behavioral" choice as the AAP position would suggest. As parent Alysia Butler reports about her son's experience, "his inability to process his world is his biggest issue" and drives his other challenges, like "social skills issues, his hyper-focus, his sleep troubles." His sensory issues are intertwined with other aspects of life.

Sensory issues, emotions, brain science, relationships, parenting - these things don't happen in a vacuum. They are interrelated, affecting and dependent on one another.

3. The Risks

Let's consider this: What if it is sensory and not behavioral? What if autistics are telling us that and we're just not listening? What will constitute proof? How would you feel if someone was trying to modify your behaviors without addressing your emotions or pain?  What about the exhaustion when your sensory processing is constantly working harder?

Dr. Hyman believes that sensory-based therapies have more risk. She equates sensory therapies to a hammer and nails. "If all you see are nails, you'll always use a hammer," she explains. In other words, if all you see is sensory, you'll always use sensory therapies, and they're not always effective. So the downside to sensory therapy is that it isn't always effective, so we might be wasting time, energy, and money.

What's the risk of seeing only behavioral nails and using a behavioral hammer? From Matt Young, an autistic adult: "A reductionist approach where everything comes down to behavior fundamentally dehumanizes us in a profound way." It reduces an individual, with his own sensory, emotional, and contextual experiences to a set of behaviors. It means we risk not believing his experiences. It means we risk dismissing his emotions.

One tool that a sensory-based approach gives us is the opportunity to take the person's or child's unique perspective. It connects us to them, encouraging us to see things from their individual viewpoint. That connection encourages compassion, and a compassionate response allows a contextual, creative approach to the whole person. Sensory-based therapy means we don't ignore or walk away from sensory stress. It encourages us to acknowledge the genuine distress.

The AAP's position, on the other hand, questions that distress. It says we cannot believe an autistic's experiences. It means we might lose faith in the autistic individual, in our child, and he might lose faith that anyone would believe or understand him.

And that's a loss we can't risk. 

We know pediatricians are overwhelmed (9) by lack of information about autism and autism therapies. We encourage the AAP to partner with adult autistics, parents, and autism professionals, like occupational therapists, to consider the whole child, not just individual therapies. The pain, emotions, parenting issues, and risks of treating sensory as behavioral are too real. We need more from our the AAP and our pediatricians.

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Sources:

Phone interview with Dr. Susan Hyman, May 30, 2012.
Email interview with Alysia Krasnow, May 31, 2012.
Email interview with Lynne Soraya, June 2, 2012.
Email interview with Matt Young, June 2, 2012.

Footnotes:

  1. http://pediatrics.aappublications.org/content/early/2012/05/23/peds.2012-0876.full.pdf+htm
  2. http://www.sciencedaily.com/releases/2012/01/120131175627.htm
  3. http://consumer.healthday.com/Article.asp?AID=665121
  4. http://necsi.edu/faculty/kagan.html
  5. http://en.wikipedia.org/wiki/Amygdala
  6. http://www.deepdyve.com/lp/psycarticles-reg/effects-of-accurate-expectations-about-sensations-on-the-sensory-and-s8gvC9lBCg
  7. http://www.mendeley.com/research/brain-substrates-of-infantmother-attachment-contributions-of-opioids-oxytocin-and-norepinephrine/
  8. http://www.sciencedaily.com/releases/2012/05/120519213236.htm
  9. http://www.ncbi.nlm.nih.gov/pubmed/19255027

Wednesday, November 2, 2011

Advocacy Begins With "No"

Kassiane
timetolisten.blogspot.com

This story happened a long, long time ago, almost ten years now. It's still exactly what I think of when people tell me about their kid who will "never" self advocate.

I worked for a few years with a boy who we will call C, who was about nine when I met him. He was nonverbal, really hated typing on the computer, knew a few signs, and had a PECS book. He had experienced many years of ABA therapy, which is very much therapist directed, and he was growing increasingly frustrated with how things in his life were going. His frustration was pretty clear -- he was angry a lot of the time and he was lashing out physically when a lot of demands (or unpleasant demands) were made. His PECS book often didn't have what he wanted to communicate in it, so that added further to his communication challenges. What he was left to communicate with was behavior.

I'm pretty sure C's parents weren't exactly looking for self-advocacy teaching, at least not what I do. They had the whole "autism as tragedy" thing going on, were into quackery, kind of seemed to resent C for existing (ok, so very much resented C for existing) and wanted compliance and normalcy, not what I was offering.

But C and I hit it off right away and I wasn't completely horrified by his expression of his anger. I avoided getting hit, obviously, but I wasn't going to restrain him or -- nearly as bad -- throw more and more demands in his face when he was upset. That's silly. It does not work. Typicality is not a realistic goal, but being able to express wants and needs is realistic, and it was quite likely that C could learn a more expedient way to make his wishes known.

When I started working with C, I had a rule for his ABA therapists and parents: if C makes clear a want or a need, he gets it. If he indicates that he doesn't want to do same with same or whatever, he doesn't do same with same. If he indicates that he is not ready to leave an activity, he doesn't have to leave yet. He needed to learn that he has some agency after so many years of following other people's agendas.

What's the first thing little kids tend to learn, to take power over their lives in small ways? The word "no," right? I wanted C to learn to say no, learn that he could ask for things and get them, learn that he could say he didn't want to do things and have his wishes respected. A lot of our time was spent playing, with him indicating he wanted or didn't want things, and me putting into words "No, don't take your block? Alright!" or something similar when he indicated in any way that he didn't like what I was about to do, or did like or want something. I wanted to show him that adults could take his wishes into account.

Then I took C swimming one day. This was something his ABA therapists didn't like to do very much because apparently it was a battle to get him out of the pool, he liked swimming in the deep end even though he wasn't an awesome swimmer and keeping him in the shallow end could be meltdown-inducing -- he could swim, but needed an adult right next to him. It was not a battle I wanted to fight, but I'm also not a fan of the Adult As God paradigm. I liked swimming and I liked C, so it was a good time.

We did some laps, we (well, C) splashed around in the shallow end, and fifteen minutes before we actually had to leave I asked C if he was ready to get out.

"NO!"

Clear as day, emphatic, and with feeling.

Yeah, we didn't get out of the pool for another ten minutes. C indicated no, he was enjoying himself, he did not want to leave. And he did it in a way that no one could deny -- no is an important concept in making one's needs known, and everyone knows what it means.

He used the word NO a whole lot -- they made him do a lot of inane things (touch nose? Really???) and he didn't want to. I don't blame him; "touch nose" is not exactly a meaningful activity. He started indicating preferred activities and even started helping make a schedule of stuff to do during his sessions (or what toys we'd play with and such ... interactive toys for demonstrating "I don't want to" or "don't do that" are pretty great).

Then he stopped and started biting again. Being bitten hurts. Biting wasn't getting him what he wanted. "What. Did. You. Do?" was my question to the ABA person.

"Oh, he didn't want to do (some meaningless task) and I hand-over-handed it."

"What the hell is wrong with you?" (Insert about fifteen minutes of me yelling at full volume about how it was C's body and he had a right to not be touched and he had a right to determine his activities, and she owed him one hell of an apology, and he was going to get that apology. Yelling where C could hear it. And where C's parents could hear it, because they were in the same county.)

She thought I was kidding. I wasn't. She quit shortly after -- apparently it was beneath her to apologize to a just-turned-ten-year-old, or to an autistic kid, or maybe it was being told to do so by an autistic adult, I dunno.

And C started saying NO! again. Then we started fixing his book and set up a Dynavox, but that's a whole other story...

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This essay was previously published at timetolisten.blogspot.com.

Tuesday, April 12, 2011

Autism Acceptance for Autism Awareness Month

Leah Jane
quixoticautistic.blogspot.com

It is April, and that can only mean one thing to this autistic blogger: Autism Awareness Month is here for the whole 30 days of the month, and without a time machine, there's no escaping it.

Autism Awareness Month has been a thorn in my side for as long as I've been an adult. I am at heart an attention-seeker, so you would think having an entire month devoted to people like me would be a joy to behold. But that's the problem behind Autism Awareness Month. It isn't about me. It's not about me—the autistic person. The entire conception of Autism Awareness Month doesn't even revolve around autism, not the kind I have or the kind that anyone I know lives with. The ‘autism' of Autism Awareness Month is a mysterious, esoteric, silent force, which magically swoops into the homes of unsuspecting families, and replaces regular, darling children with empty husks, ala the Changelings of ancient myths.

It's not even entirely about the children who are these so-called "empty shells." The entire focus of Autism Awareness Month seems to be divided between what sad, pathetic existences they must lead, and the potential for a real, neurotypical, normal child that lies just around the corner in the next type of chelation, cure, or therapy. Rather than shedding light on what autism is, Autism Awareness Month has served to cloud autism further in lies, half-truths, pity, and the tyranny of low expectations.


I've watched as a series of Autism Awareness Months have gone by, and nothing seems to have changed in the public eye. I've seen promoted and have attended various Autism Awareness Events over the years, and the funny thing is, they almost universally don't bother to think of how autistic people might function at these events. To give just a few examples:

  • There is usually loud music, so loud that those with sensory processing disorder may be forced to not attend.
  • The crowds are often suffocating, whether the event takes place at a conference hall, hotel, or outdoors, with no regard given to how someone who functions poorly in large crowds may feel about being squeezed in with so many people.
  • There are usually no rules restricting the use of perfume, and I can remember coughing through clouds of it once and deciding I'd rather leave than have my sense of smell continuously assaulted.
There's something deeply problematic about an event centered around autism which doesn't consider the needs of autistic people in order for them to equally participate.

That's not even getting to the actual content of the events. Typically, they consist of speakers, usually doctors or parents. The doctor speakers usually only consider autism within the confines of the medical model of disability, and usually don't speak about autistic people as individuals, but instead refer to people with autism as a collective, with a shared host of problems. The theme is that those problems need to be researched. It is rare for the doctors to talk about the experience of autism as a teenager or adult. Parents will usually be a bit more personal and intimate, but their speeches can range from "I love my son/daughter dearly and want to do everything I can to make sure they're happy and successful" to "My child was stolen away from me and replaced with this screaming, in-affectionate demon!"

On very rare occasions an actual autistic person is included as a speaker. But always the autistic person is verbal, articulate, and, even while promoting themselves as an autistic person worth listening to, they sometimes fail include all autistic people under their umbrella of acceptance. Often, the autistic person will promote the notion that those with special gifts and talents, who can more or less live independently (like themselves) should be given the option of living with their autism. But -- in a swirl of cognitive dissonance, the autistic speaker may promote the idea that those not like them -- without their own special gifts and large vocabularies -- well, who cares, cure those other autistic people.
These alienating incidents aren't necessarily always the case, but they are frequent enough for me to not be surprised when I feel like an unwelcome stranger at an event about my own disability—which certainly isn't (or shouldn't be) the goal.


It doesn't have to be this way, though. The only thing standing between the truth and the current situation is the concept of Autism Awareness itself. It's time for a new idea, one that seems to be heresy to the people pushing Autism Awareness, but has been the crowning point of the disability community at large for 20+ years now: "Nothing About Us Without Us." Or, to put it more succinctly, it's time to throw away Autism Awareness, and replace it with Autism Acceptance.


The fundamental difference I see between the two is that Autism Acceptance is being spearheaded by autistic people themselves. People from all walks of life and in all corners on the spectrum are coming forth and working to tear down these myths established by the Autism Awareness contingent and the Medical Model of Disability. It's a collaborative effort meant to showcase that, during this month, which is ostensibly all about our disability, we have a right to talk about what our disability means to us, and what public attitudes towards it mean for us.

Autism Acceptance isn't confined to April. For me, Autism Acceptance is every day. It took me years to understand the harm disablist rhetoric did to my self-esteem, my perception of my own talents and passions, and how I handled my limitations. It's a powerful thing for an autistic person to learn how to love themselves. It will also be powerful for non-autistic folk to take a moment to see past the puzzle ribbons and the grim statistics meant to show how autism affects more people than diabetes, cancer, and HIV.

Look past all that garbage foisted onto you by those who neither know nor truly respect autism and autistic people, and you will see that what we need from you most is not a month set aside for the purposes of degrading and pitying our existences and experiences, but constant, unwavering support, the patience to listen to our side of the story, and the power for you to put aside your own ideas about who should be listened to, based on what credentials, and to give those of us with the disability as a constant presence in our lives a chance to speak. Just because someone can't talk (in your language of words and verbal dialogue) doesn't mean they have nothing to say.

If you want to look for the signs of an Autism Acceptance/Neurodiverse-friendly event, then I recommend looking to the example of Autreat, which pledges to make it a sensory-friendly environment for autistic people, respects our personal space, allows flexible scheduling for those who feel overwhelmed, and is run by autistic people for autistic people. Autreat strives to be the pinnacle of an autism-friendly event.

If you are interested in improving a local event, try to think about what sensory issues I listed above, and think, "How can I address this?"

Look for autistic speakers to book, from all ends on the spectrum. The autism blogosphere is a great place to start, or you could find a local person with autism who may want to share their story. Sometimes, the best way to make your event autism-friendly is to just engage with autistic people to see what they would like to see at their local autism event. Since it's about their disability, they're best qualified to tell you what will attract those with autism to participate in these events. And really, isn't that the best thing you could hope for at your own Autism event?

You can find more information on Autism Acceptance events at http://autismacceptanceday.blogspot.com

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A version of this post was previously published at Shakesville.

Wednesday, February 16, 2011

For Physicians: 10 Things You Can Do To Help Families With Children Affected By Autism or Developmental Delays

Dr_Som
www.pensivepediatrician.com/

This is a follow up to a previous post, Who Wins When Parents Spank? at the Pensive Pediatrician

I certainly do not mean to trivialize the behavior issues that erupt as typical children develop, but the problems of atypical kids are more difficult and less likely to be fully addressed by general pediatricians, family practice physicians, and society at large.


The 10 things pediatricians and family practice physicians can do to help families affected by autism or other developmental delays in their in their practices:

1. Understand the ABCs of behavior
  • A= Antecedent = What happened immediately before the behavior?
  • B= Behavior = A description of the behavior (not "he got angry")
  • C= Consequences = How did the parent or teacher respond and/or what kind of reinforcement did the child receive?
For example, when David, my autistic son, was three, every time I fastened or unfastened his car seat (antecedent), he screamed and/or pulled my hair (behavior). I would usually say "stop" or sigh loudly (consequence) and try to get him in the seat as fast as possible. I tried distracting him with good toys or singing but nothing worked. I even cut my hair. He responded the same way regardless of the car or the type of seat.

David began seeing a certified behavior analyst for applied behavior analysis, ABA (click for video) to help with his language.She calmly watched as I struggled to get him in the car after a therapy session. She suggested I ignore the behavior. She said, "Be a robot. Say nothing. No anxiety or anger. No extra singing or extra toys to attempt distraction." It was really hard. After about 3 weeks, the months and months of hair pulling stopped.

As it became apparent, I was inadvertently reinforcing his resistance to the car seat by making sounds that he liked -- either the "stop!" or the sighing -- or both. Autistic children are motivated by positive reinforcement, but the trick is identifying the powerful reinforcers, as these are often different than the social reinforcers used to discipline most children. Discipline issues are never easy, especially with children who have limited communication skills.

According to the American Academy of Pediatrics (AAP) policy statement on discipline, parents are more likely to use aversive techniques like spanking when they are angry or irritable, depressed, fatigued, or stressed.Although I cannot speak for all the caregivers of developmentally delayed children, one of these adjectives describes me all the time. The policy statement also mentions that spanking can be a positive reinforcer for children much like my firm "stop it" or sighing were for David. The policy does not address developmentally delayed or autistic children. The AAP policy statement on the maltreatment of children with disabilities discusses the issue, but I hope most pediatricians address behavior management techniques before there is concern about maltreatment.

2. ASK and LISTEN.
Parents have low expectations. Many families assume that routine check ups for a child with autism are for vaccinations and other non-mental or behavioral health issues. Many families have seen or are actively seeing a developmental pediatrician or psychiatrist. Ask if these professionals are accessible and helpful when it comes to the very practical issue of daily discipline. If concerns are not being addressed, send your patients elsewhere. Sometimes just talking helps families find focus and prioritize what they juggle everyday.


3. Know where to send your patients.
My husband and I are both general pediatricians. Most of what we know about the evolution of disordered and/or delayed development we learned from practical experience with our son. Granted we trained ten years ago, but residents still are not learning what they need to know to help special needs kids and their families. Do you know the specific schools or programs in your community that excel for children with cerebral palsy, developmental delays, or autism? Which therapies do you suggest and for what reason?

Not all therapists are equally skilled, which is especially true if the child is seeing a therapist via a state early intervention program. When we lived in Oregon, we received excellent speech (SLP) and occupational therapy (OT) from early intervention. Then we moved to Ohio where we did not "qualify" for therapies because we were privately insured. Music therapy and aquatics, although not paid for by insurers, are ideal for certain kids.

If you reflexively send special-needs patients to the triad of occupational therapy (OT), physical therapy (PT) and Speech Language therapy (SLP), without determining a child's unique needs, the family's insurance, and what your patient's Special Education Local Area Plan (SELPA) offers, you are not providing a true medical home.

One thing you can do is to enlist the help of parents of special-needs children in your practice. Ask if they would mind if a parent in need contacted them. We wish desperately that a primary care doctor or specialist had done that for us, especially when we first relocated.

4. Send your patients to a certified behavior analyst with experience using ABA.
Although many of the studies supporting ABA were done with autistic children, non-autistic children with developmental delays benefit as well.

Any professional who tells you he uses an "eclectic" approach is not really using any solid approach. While there are some other developmental models for teaching children with autism or language delays -- Floortime, Relationship Development Intervention (RDI), Hanen -- if a child has significant behavior problems, ABA is your best bet. ABA is the most empirically proven reproducible method to improve functional behavior, social, and academic skills in a variety of settings for a range of diagnoses.

5. Advocate for insurance reimbursement.
While I endorse ABA, it is only paid for in a handful of states through early intervention, Medicaid, private insurance, or the school district. Otherwise, you will just have to hope your patient's family has significant financial means.

Until pediatricians, psychologists, certified behavior analysts and/or psychiatrists get paid for counseling in detail about behavior modification, families will continue to experience long waiting lists for available services, and limited options. General pediatricians in private practice cannot spend 45 minutes troubleshooting why an autistic child rips his mother's hair out when placed in a car seat.A dedicated pediatrician might do phone follow up over a few days and help the mom keep ABC (antecedent, behavior, consequence) data, but she will not get paid.

If you want private insurance to help, wait until the child pulls out everybody's hair and becomes a danger to himself or others. Then he can go to the ER while he waits for a bed at a an inpatient psychiatric facility. Obviously, I am not seriously advocating this course, as it is not humane -- or cost effective. Legislation in various states attempts to compel insurers to pay for autism therapies, but loopholes almost universally allow insurers to weasel out of reimbursing for ABA.

6. Say NO to drugs as a first line approach.
Say this three times out loud: "No medication should be started without an effective behavior plan. No medication should be started without an effective behavior plan. No medication should be started without an effective behavior plan.

Although the AAP policy statement on the management of children with autism advocates for this approach, (published November 1, 2007; reaffirmed December 1, 2010) the AAP policy statement does not mention discipline strategies in any detail nor does it broach the subject of child maltreatment. It spends one paragraph on the importance of a behavior plan for an a child with "challenging behaviors," and then three and half pages on drugs, most of which are not well studied. There is a one page table that suggests specific classes of drugs for specific problems. Why isn't there a comparable table illustrating behavioral solutions or approaches to common problem behaviors? The policy statement assumes that you will be able to easily send the child to a specialist for a functional behavior analysis while you get ready to write the prescription.

Imagine if pediatricians or family practice physicians handled asthma this way. The child would arrive at the office coughing and dyspneic [short of breath]. We would administer albuterol, oxygen and/or steroids while his mother sits next to him smoking a pack of cigarettes.

7. Help your patients' parents develop meaningful familial supports before crisis.
Of course an effective behavior plan requires not only an experienced professional for design but a motivated caretaker to implement. Personally, I can think of a handful of occasions when I would have benefited from a therapist in my home for intense short periods -- for example, when toilet training.

Here is one example: I write lots of prescriptions for diapers and incontinence undergarments for autistic children older than five, so that the parents can be compensated for the cost of these items. Many, if not most, children with autism can be toilet trained -- if their parents or caregivers have help from experienced professionals in this area. However, in my state, Medicaid pays for all the diapers you want but will not pay for any ABA or in-home behavior management.

8. Stop making parents the only "experts" on their child.
We do not diagnose a child with muscular dystrophy, brain cancer, or blindness, and then tell her parents that they are the real experts, but you will be available for consultation. We do not reassure parents of a child with these diagnoses that if things get too bad, they can go to the ER or call one of the triad: OT/PT/Speech for help. We should not use this approach for parents of children with an autism diagnosis.

How can we go from institutionalizing children with autism and blaming the disorder on their parents -- just 40 years ago -- to making parents the experts on autism treatments?

I like the idea of bridging this gap by "hospitalizing" the child and bringing the behaviorist to the house. I dream big. In the meantime, YouTube has great videos of families using RDI (sample search) or ABA (sample search). Autism Speaks now has its own channel.

It is sad that no physician has ever suggested to us -- fellow physicians -- that we could use resources such as online videos as a way for us to learn about therapies. Describing behavior therapies is like writing an essay about how to Salsa. Encourage families to find a way to observe it in action.

9. Advocate for better training for folks on the front line.
Who are those on the front line? Social workers, early intervention educators, caseworkers from your state's developmental and /or cognitive service provider, special education teachers, and therapists -- those are the front-line folks you will meet. All need ongoing training -- in advances in remediation, and advances in what is known about education and behavior management for people with developmental delays. With social media and telemedicine there is no reason that individuals well-versed in behavior management cannot help children even in the most remote areas.

I know a marvelous occupational therapist who worked full time with autistic children. She cut back her hours because of fatigue. She wants so much to help train other people, but there is no way for her to make a living that way. Sometimes schools, counties, insurance companies, and large free standing children's hospitals do not want to pay for consultation with a behavior specialist, or allow their employees to take time away from client duties to get better trained. In the big picture, it would not only save money it would save lives.

10. Stop corporal punishment in schools and in homes.
Human Rights Watch reported that children with disabilities including those with autism were more likely to endure corporal punishment in schools than their typical peers. Nobody would ever know if I hit my son on a regular basis. Although he is verbal, he would never be able to articulate abuse to anyone. There are limited studies on what parents do in the home for discipline. Most parents understand that their children are fragile and different. However, they lead incredibly stressful lives with very limited respite options. They need techniques to combat aggressive behavior effectively and safely.

Here's what can happen without adequate support:
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A version of this essay was previously published at the Pensive Pediatrician

Friday, January 28, 2011

On Autonomy and Establishing Guardianship for My Adult Son

Kim Wombles
http://kwomblescountering.blogspot.com/
http://www.science20.com/science_autism_spectrum_disorders

My husband and I obtained guardianship of my bright boy when he was approaching 18 years old -- the legal age of adulthood in the US. Bobby has a blood clotting disorder which lead to a stroke at aged nine, which left him with significant cognitive disabilities.

Bobby's certainly an adult, but he has a cognitive impairment; he can't spell more than a few words despite many long years of working at it, can't do double digit math.

He is my son, my bright boy, and while I accept and celebrate that he is an adult, the truth is that he is an adult with a cognitive impairment that requires he have assistance. We work very hard to find a balance that allows him the opportunity for growth, to reach his potential. We work very hard to allow him as much autonomy as he is capable of, but it is my job as his parent and his legal guardian to stand between him and those who would take advantage of him. It is my job to make sure he is in a safe environment, he is happy, he is doing what he wants to do with his life.

I take my responsibilities seriously. It is a constant balancing act, and my husband and I regularly reevaluate our decisions. Our experiences as our son’s parents have paved the way for our parenting of our daughters. We didn’t have the steep learning curve that we did with Bobby; we didn’t have the struggle to learn about autism, understand it, or accept it. We’d already done the heavy lifting. I am not where I once was, and I suspect that many parents who’ve been around for a decade or more aren’t. There are some autism bloggers who give us daily reminders that not everyone gets off the pity party, not everyone decides to see the good, to learn, to grow, or hell, even to take a real good look at themselves and their loved ones and realize that there’s a great deal of us in our kids, that we are bappy (broad autism phenotype—it really is a spectrum!) folks ourselves, if not skirting over into autism itself. When we see ourselves in our children, if we have accepted ourselves and our issues, we have no choice but to mirror that with our children, to see them, issues and all, and to love them completely.

Yes, there are serious issues that parents of autistic children face; serious issues that autistics face, as well. Denying these struggles does no one, autistic individuals included, any good. Not every child will overcome the obstacles the world and their neurologies present them. All the acceptance and appreciation in the world will not take a severely impaired child with accompanying medical problems or cognitive impairments and render them independent adults. Not facing that is a tremendous disservice. It ignores the reality that my mother faces each day at her work as a nurse at the assisted living center, that my husband saw every day for two years when he worked as direct care staff there. It denies those individuals their reality, if we assert that there is some potential gone untapped if only someone had tried harder. Accepting people as valuable members of society for who they are means accepting their realities, their neurologies and issues. And then busting our asses to make sure that those who need 24 hour care get the very best care there is, that they are respected, protected and allowed as much autonomy as they are capable of.

There are real questions about how parents balance the need to protect their children from bullies and the harsher realities while still promoting autonomy. How do they display sensitivity to the integral part that autism plays in the child's identity while acknowledging that not everything about a person is due to autism? How do autistic adults provide feedback to parents to guide them so that the decisions parents make are made with an eye to the future self their child will be, so that harm is minimized?

Before Bobby was homeschooled after his stroke at age 9, I was in the school with him many days, working hard to help him get the accommodation and assistance he needed. After his stroke, I was with him all the time, providing all the attention and assistance possible. I assure you, if a mother’s undivided attention and the right attitude were all it took to make an individual fully capable of independence, my bright boy would have had it.

If we are not free to admit where we once were and how we have grown as our children have taught us to see the world differently, then how will we move towards changing the world and making it a better place for all people, regardless of their issues? Admitting our mistakes and learning from them is a vital part of growth and development.

This essay was adapted from adapted from http://kwomblescountering.blogspot.com/2010/04/not-where-i-once-was.html

Monday, January 24, 2011

Rethinking Employment Opportunities for Adults with Autism

Scott Standifer
Disability Policy and Studies Office
School of Health Professions
University of Missouri
http://dps.missouri.edu/Autism.html
standifers@missouri.edu

Introduction from the editors:

Many of our readers are from outside the United States, or have children with autism under the age of 16, and so are not yet fully aware of some of the elements of employment and employment planning for adults with disabilities in the US, including autism. The following brief summary is an orientation.

In 1973, the United States passed a law that directed federal and state authorities to assist people with disabilities to find employment. In the same time period, the US mandated that children with disabilities must receive educational services, and to be provided with planning for transition from the school years to subsequent employment. In the subsequent years, transition from school to work has evolved in many ways.

In the US, the system for helping people with disabilities find employment is called “vocational rehabilitation,” or Voc Rehab.

Back in the 1970s, there were thought to be only three alternatives for employment for people with disabilities, including autism:
  1. “Competitive employment,” meaning “a regular job”-- employment in the same settings and with the same supports as a person without a disability; – that is to say, few to none.
  2. “Supported employment,” meaning nearly “a regular job” with additional systems of supports, such as a “job coach” or a job specifically developed for the person.
  3. “Sheltered” or “secure” employment (also called “a workshop job” , meaning a job in facility specifically designed for people with mental or physical disabilities). “Sheltered” may mean that the setting does not provide training that would allow for more independence, while “secure” tends to mean that workers also have further training in work skills and other social/behavior aspects that may later lead to more independence.
Over time, this model has been tested and adapted, as both the field of vocational rehabilitation has grown and the specific experiences of individuals with disabilities have revealed other needs.

The author of this post, Scott Standifer, is a leader in recognizing the specific employment challenges facing adults with autism, and in finding ways to meet those needs. He is one of the principals in a national conference to be held March 3-4 in St. Louis, MO, Autism Works. The goals of the conference are to enable people with autism, allies of those with autism, and vocational rehabilitation professionals to meet and develop new approaches to developing and sustaining employment for people with autism. Details on the Autism Works conference are available at http://dps.missouri.edu/Autism.html or at http://www.facebook.com/pages/Autism-Works/136057253090452

In this post, Standifer interviews Cary Griffin, another leader in rethinking the employment needs for adults with disabilities, and specifically for those with autism.

Cary Griffin is a noted disability employment consultant and author, and is a senior partner at Griffin-Hammis Associates, a nation-wide consulting firm that helps to develop employment opportunities for people with all kinds of disabilities. He has a long history in the field, with a special interest in nurturing self-employment for people with disabilities.

Griffin believes that traditional vocational rehabilitation supports (training for job seeking, interviewing skills, resume writing, etc.) are not the best answer to develop jobs for people with autism.

Speaking from his home in Montana, Griffin says, "Traditional job development (searching want ads, cold calling, using word-of-mouth connections), from an economic point of view, has always been based on faith and charity. You hear it in the comment "Well, no one would give me a chance". Why should they? That's not what business owners are there to do. It is up to us to make an argument for how this person can contribute and earn a paycheck – just as we all do for our own paychecks."

While people on the autism spectrum have some unique support needs for employment, Griffin says the failure of traditional job placement and job development strategies is not autism-specific. These traditional approaches have never worked well for any group of people with disabilities. He calls it "a dependence model and a poverty model" of employment.
Griffin is an advocate for a philosophy called Customized Employment. This term was coined from the top in 2001, when the Office of Disability Employment (ODEP) was created within the US Department of Labor. As always, it takes time for ideas to reach fruition with real clients.

The Customized Employment (CE) approach starts with building a deep-knowledge profile of the person with autism (or other disability), goes on to define the "ideal conditions of employment" for that specific person, and then engaging potential employers in interest-based negotiations that reveal the benefits which hiring a specific person will have for both parties.

"We have to mine the conditions and supply chains for businesses for opportunities for employment," Griffin comments. This means looking at what resources, supplies, and services local businesses need and how the particular individual might provide those. Griffin often proposes various types of self-employment as customized employment solutions. And the CE philosophy is achieving great successes for some clients.

One example Griffin points to is a young man with autism named Jason. Jason runs a towel sterilizing business that services local barber shops, tanning salons, and beauty parlors in a large metro area. Using the customized employment model, Jason's support team first defined the "ideal conditions of employment" for a clear understanding of what would work for Jason. Jason's father is a barber, which helped refine the business design. Today Jason not only has a successful business, he also has a part-time employee who drives to do deliveries and pickups with Jason, and to handle sales. Jason has not only found a job; he is helping local businesses be profitable and is creating employment for someone else.

In another example, a young man with autism named James has strong computer skills but lives in a rural area. James' support team noted there was a moderately large company with many small offices scattered across the rural area. Each office needed a computer technical support person, but the company could not afford to have someone on site across so many offices. James now meets that need by providing remote computer diagnostics. When an employee of the company has trouble, he or she calls James. James takes over their computer via the internet, diagnoses the problem using specialty software, and either fixes the problem or sends another team member to perform the repair.

Griffin says these customized approaches – individualized to both the person with autism and the needs of local business, are the best solution for employment: "The traditional job development approach is like retail - looking for jobs that already exist and are sitting on the shelf. It is as if you are saying 'I want to buy a box of jobs.' That doesn't work well. For really effective employment, the jobs will have to be off the grid. It will have to be something that matches the needs and skills each person with autism can bring to the job."

Thanks in part to the 25 or so consulting projects of Griffin's company, this customized employment approach is spreading across the country.

James Emmett, a national consultant on autism and employment, says the autism community should listen to Griffin: "Across the country, Cary Griffin has been a leader in, initially, supported employment, and now in customized and self-employment. He understands both the needs of business and of people with significant disabilities. Cary is someone who has always been ahead of the trends and he is part of what is going to be next for people with autism and employment."

Griffin admits there is still a lot of work to do around autism and employment. He sees vocational rehabilitation agencies across the country struggling to provide successful services to adults with autism and reaching out for options and alternatives. However, serving clients with autism is clearly part of the mandate for all vocational rehabilitation agencies: "The Rehab Act says Voc Rehab is to work with the most significant disabilities. I don't know how you can leave autism out of that."

"In Florida we helped Voc Rehab rewrite their self-employment policy to be more inclusive of people with significant disabilities like autism. That's exciting."

A previous version of this essay was published as Cary Griffin - Why Job Seeking Won't Work for Autism [PDF]

Resources

Wednesday, October 6, 2010

Autism and Potty Training: Never Give Up Hope

Shannon Des Roches Rosa

My clearest memory of an autism professional's FAIL happened when I was told that if Leo, then aged five, wasn't potty trained by the time he was six, he would likely never achieve self-sufficiency. Yet in the four years since that proclamation, our boy has completely mastered every aspect of toileting. Sure, he wets the bed occasionally, but so do plenty of neurotypical nine-year-old boys. That autism expert can, on matters toileting-related, kiss my ass.

We were lucky; we had the staggeringly competent behaviorist Supervisor M leading my son's home therapy program and countering the expert's declaration. She held my hand when I sobbed that Leo would never be potty trained because that autism expert told me so. Supervisor M reassured me that, in her considerable experience, kids like Leo can and do potty train -- but they need rigorous support and a lot of patience. Sometimes years of patience.

Supervisor M's practical outlook for potty training, and our patience and Leo's hard work have paid off. Let me tell you how we all went about achieving total toileting domination.

We readjusted our expectations, as we have for so many aspects of Leo's development since his autism diagnosis -- an accepting rather than pessimistic attitude. We knew that since Leo has delays, many of his milestones are stretched out or delayed as well. We set realistic goals for Leo and toileting: gradual successes while anticipating occasional regressions.

First, we looked for signs that Leo was ready to potty train. These signs were more subtle for him than for neurotypical children, because Leo is not conversational. At the beginning of his toilet training, he did not notify us when he needed to use the bathroom. So we looked for physical signs, and initiated his toileting proceedings at aged five, when he stopped tolerating wearing soiled pullups. (You don't really want to know how he demonstrated his readiness, do you? "Messy" would be a euphemism.)

Then we set up in-home potty boot camp. Telling him why he needed to use the toilet didn't really register, so we would wait until we thought he needed to go (usually an hour since the last time he went), then walk him over to the toilet and help him situate his naked bottom atop it. While he sat on his throne, we would let him watch a favorite video on my laptop until he produced -- that way he could see for himself why using the toilet was a good idea, and so much less icky than going in his pullups. And every time he produced, we gave him huge positive reinforcers: M&Ms, goldfish crackers, hugs, cheers -- sometimes all four.

His home ABA team backed us up not just with the toileting, but with its peripheral aspects -- of which there are so many, and which because there are so many can be overwhelming for kids like Leo who need extra time and support to process sequences. Like wiping (and checking for effective wiping); pulling up underwear first, then pants; and washing hands (multiple steps). We encouraged him via reinforcers with his post-toileting routine as well.

Once he started using the toilet reliably and compliantly, we took him out of pullups during mellow at-home times, and during his home ABA therapy sessions. He still wore pullups in the car, about town, at school, and at night. Then, when he started demonstrating that he could stay clean and dry for two to three hours, and was regularly letting us know when he needed to use the toilet (that magic spontaneous phrase, "Go to the potty!"), we gradually reduced pullup use until he wore underwear all day long. This transition took several months, during which time we tapered off his reinforcers as well.

When he was under stress and had regressions, we would ramp the reinforcer system back up, so as to reboot his motivation. To those worried that their children will become completely reinforcer (some might say "bribe") dependent, I will note that: 1) we've always been able to successfully fade out reinforcers, i.e., gradually stop using them, and 2) what do you think causes more stress for you, your child, and your household: cleaning up a poop- or pee-covered kid, or giving that kid a small treat for potty successes?

The final frontier for Leo was wearing underwear at night. And I have to be honest, I never considered this milestone a guarantee. Leo had a two-year stretch between the time he started strutting around in underwear all day long, and the time he became reliably dry at night. But, as of a month ago, he was waking up dry almost every morning, and we knew it was time.

It hasn't been breezy for Leo or for us, living this pullup-free lifestyle. Leo really protested changing his nighttime routine and giving up pullups -- we had to wait an extra ten days to begin Operation Bedtime Underwear because Leo knew exactly how many pullups were left in his drawer, and that he would be using one every night -- there was no donning of the bedtime underwear until all his pullups were gone. But he did make the change eventually. And I think that the extra laundry is worth both the money we're saving on pullups, and the dramatic demonstration of Leo's ongoing ability to master new skills. As with all matters autism and development-related, it's important to remain open to success.

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A version of this essay was originally published at BlogHer.com

Wednesday, August 11, 2010

Does Your Child With Autism Have a Daily Record?

Shannon Des Roches Rosa
www.squidalicious.com
www.canisitwithyou.org
www.blogher.com/blog/shannon-des-roches-rosa

There are so many factors that can influence or illustrate how our children with autism are wearing their own skin, including but not limited to: health, toileting, aggressive and/or self-injurious behaviors, sleep patterns, medications, language usage, diet, and school performance.

We've used a Google spreadsheet to successfully track important factors for my son Leo for the past several years. A daily record of Leo's important variables helps track and explain underlying patterns if and when things go awry -- or go well. Because we keep Leo's record online as a Google docs spreadsheet, it can be shared with his entire school and home program team, as well as with interested family and friends. Once a behavioral record has been set up, it takes only a few minutes each day to fill it out.

An online behavioral record spreadsheet has been an invaluable tool for information sharing amongst Leelo's team and fans, and also for providing fast, hard evidence of how well he learns and how much progress he's made when I start fretting that things aren't going so well. And, best of all, a daily record on Google Docs is free. I heartily recommend setting one up, if you haven't already.

Below are the factors we track for Leelo, with examples. I try to keep entries brief as that helps facilitate data analysis. We also including his weight at the beginning of the month, the medication and supplements he takes daily, as well as a list of the foods he typically eats.
HEALTH
Runny Nose

TOILETING
Accidents: 1 (pee, slept in, wet bed)
SLEEP
Up at 7, to bed at 10 PM

DIET (CHANGES FROM NORM)
French bread, tried bite of hamburger

MEDICATION
claritin, tylenol meltaways for his toothache

LANGUAGE
"Time to go swimming!" "I'm all done bath. Nice dry towel."

BEHAVIOR
0 aggressive (towards others)
1 self-injurious (slapped head when denied ice cream)

SCHOOL NOTES
I fill this out using daily communication notebook his teachers send home

HOME NOTES
Home program therapists, if any, can write notable items here.

ADDITIONAL NOTES
Extra category for factors that may influence Leo's behavior, e.g., "Spring Break" "Dad on business trip"
Tracking helps us back up our anecdotal observations: "Yes, he has had more self-injurious behaviors this week. He developed a runny nose on the second day of the behaviors, so possibly there is sinus involvement. The behaviors disappeared three days later, along with the runny nose."

Tracking helps us make better long-term behavioral analyses as well. When I enter an IEP meeting and ask for extra behaviorist support during winter months, I am backed up by several years' worth of data about Leo's increase in aggressive and self-injurious behaviors during that time of year.

Of course, there are incidents that need no additional interpretation, as when Leelo has a spectacular meltdown in the Costco checkout line because we arrived as soon as the doors opened and there weren't yet any nice people handing out food samples. I remained calm, helped him to his feet, reminded him to keep his hands down, and met the eyes of the people around me with what I hope was a look of Autism Parent Supreme Confidence.

And then I went home and recorded his behaviors in his spreadsheet.

This essay contains material from posts on www.squidalicious.com.

Wednesday, July 21, 2010

The One-Two Punch of Autism: The Case for Insuring Our Kids' Future

Liane Kupferberg Carter
http://www.huffingtonpost.com/liane-kupferberg-carter

Though this essay references legislation and congressional matters specific to New York State, the entire autism community could benefit from improved insurance coverage. -Eds

"Your child has autism."

It's a devastating diagnosis for a parent to hear. But it's a one-two punch when your insurance company then refuses to cover the critical, medically necessary therapies your child desperately needs.

When our then-2-year-old son was diagnosed with a developmental disability 16 years ago, a team of medical experts prescribed a rigorous program of therapies. However, state-funded early intervention services were only able to offer us an hour and a half a week of speech therapy -- for a child who wasn't talking. We found private therapists to work with our child. But when we tried to file an insurance claim, the insurance company turned us down flat.

"We don't cover educational treatment," they told us. We appealed. They turned us down again. "We don't cover developmental problems," the claims manager said.

Thousands of families like ours are who are dealing with autism are fortunate to have any health insurance at all. But in New York state, insurance coverage does not pay for essential medical services that are the only proven method for helping kids with autism reach their full potential.

The costs of intensive, one-on-one therapies, including speech, occupational and Applied Behavior Analysis (ABA), the gold standard in autism treatment, are prohibitive.

The yearly out-of-pocket expenses are equivalent to a year of private college tuition. So instead of getting a child the prescribed treatment regimen, which may entail 40 or more hours with therapists every week, families like ours cobble together whatever we can afford. We run through savings. College funds. Retirement money. It is a shared sacrifice that reverberates throughout the entire family.

According to the national Centers for Disease Control and Prevention, autism is now diagnosed in one in every 110 children, including one in 70 boys. The number of children diagnosed with autism is skyrocketing, while school budgets are simultaneously constricting. Unfortunately, many school systems are ill-equipped and insufficiently funded to handle the job of providing all these services. Child development experts agree that giving a child intensive help during his toddler and pre-school years increases the likelihood that he will be mainstreamed and require fewer special services by the time he reaches kindergarten.

Early intervention is our best hope of ensuring that those children become as independent and fully functioning as they are able. It's cost-effective too: Providing children with intensive therapies early on will reduce the state-funded services they will need in their school years and throughout their lifetime.

Last month both the Assembly and state Senate unanimously passed groundbreaking bipartisan legislation that will put New York at the forefront of a nationwide effort to provide health insurance coverage for people with autism. New York stands poised to become the 22nd state to require coverage of medically necessary ABA therapy, the most recognized, evidence-based treatment for autism. The New York law would cover treatments for people with autism throughout their life-span. Opponents have claimed that covering behavioral therapies for children with autism would dramatically increase insurance premiums. But according to actuarial analyses conducted on the proposed New York legislation, the New York proposal would only result in modest premium increases of slightly over one-half of 1 percent upon full implementation.

The bill awaits Gov. David Paterson's signature. It is a common-sense and fiscally responsible way to help families access the medically necessary, evidence-based autism therapies that they are currently excluded from receiving due to an autism diagnosis.

Giving children access to treatments today gives them their best chance to become happy, healthy and productive adults tomorrow.



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This essay was originally published in The Huffington Post and  The Journal News, Lohud.com.

Monday, July 19, 2010

What is Applied Behavior Analysis, and Why You Want a Behavior Analyst On Your Child’s Team

Michelle Hecht MA, BCBA

When it comes to helping children with autism to achieve their learning goals, and to become participating, contributing, and independent members of society, intensive applied behavior analysis, or ABA, is currently the educational treatment approach with the strongest scientific support. Given that as of yet there is no known cure or preventative treatment for this neurodevelopmental disorder, all parents and guardians of children recently diagnosed with autism should be equipped with ABA knowledge and skills. So, what is applied behavior analysis, and why should you have a behavior analyst on your child’s team?

What is Applied Behavior Analysis?

Behavior analysis is the scientific approach to understanding how environment affects behavior. These days it is generally accepted that behavior is impacted greatly by both biological and environmental factors. Professional and academic fields as diverse as education and advertising examine how various aspects of the environment affect human behavior, to promote their respective knowledge bases and goals. Behavior analysis stands out among these fields as a science. It relies on the same tools as other sciences: clear definitions, objective measurement, controlled experimentation, data analysis, and replication. Applied behavior analysis utilizes these tools in order to bring about important changes in the behavior of individual clients. A behavior analyst then, is a scientist-practitioner who can help your child to achieve her own goals and potential.

What Does a Behavior Analyst Do?

A behavior analyst is an expert observer, and her focus is behavior of the individual. Your behavior analyst will directly observe your child’s behavior in a variety of environments, to develop an accurate picture of his current learning strengths and needs. The behavior analyst will objectively define the behaviors she is observing, so that everyone on the team can also observe, and reliably agree on what they are seeing. She will clarify murky terms such as “share” into more precise descriptions, like “put a toy in someone’s hand.” Such clear, objective information provides you with an accurate baseline of your child’s current skills and performance, and permits ongoing evaluation as to the effectiveness of therapies and treatments. This is essential for you in order to make sound decisions about your child’s treatment.

Your behavior analyst is also skilled at experimentation. She selects procedures to address your child’s various learning goals, and then design mini-experiments to determine the effects of these procedures on your child’s behaviors. When it comes to which treatments to use, she is well-positioned to select interventions that are likely to work with your child.

Her treatment toolkit is uniquely stocked with interventions supported by the latest scientific research, and anchored in the durable principles of behavior analysis. One example is video modeling, in which video clips are used to prompt a child to perform a new behavior, such as putting on a jacket. Another is prompt fading, in which the assistance provided to a child while acquiring a new skill is systematically reduced to promote independent use of the skill and to prevent dependence on adult assistance. Your behavior analyst will train instructors, family members, and others to implement the selected procedures, so that your child will use his new skills across the many people and places in his life. She will oversee data analysis on how your child’s behavior is responding to the various treatments to ensure they are working for him, and will recommend program modifications based on this data.

In summary, a behavior analyst will help you to clearly define the strengths and learning needs of your child. She will address those needs using research-based methodologies, and will guide your child’s program based on his performance data, to maximize her progress and development.

Why Do I Want a Behavior Analyst on My Child’s Team?

Because your child is a unique individual. If your child has been diagnosed with autism, then a professional has determined that he is experiencing significant challenges in the three general areas: language, social communication, and restricted interests/repetitive behaviors. Yet, while all children with autism show some challenges in each of these diagnostic areas, the similarities between children end there. One child may speak somewhat typically but be unable to engage in a two-way conversation, while another may not speak at all; one child may repeat all of the bus routes in town, while another may only play with a single Thomas the Tank Engine by rolling it along the edge of a table. In other words, children with autism all share similar diagnostic features, but they are very different from one another.  Behavior analysts are well-suited to this predicament; by definition, behavior analysis examines the behavior of the individual. A behavior analyst applies her knowledge of autism treatments to her understanding of how these challenges manifest distinctly for your child. Importantly, the behavior analyst addresses these challenges by building on your child’s personal strengths and motivations.

Every opportunity should be a learning opportunity. We know that early intervention works. A majority of young children with autism respond well to early intensive ABA intervention, and earlier gains can magnify subsequent learning opportunities and later progress. As a parent, you want to maximize your child’s time spent engaged in learning that is working to address her autism symptoms and further develop her strengths. This means selecting the most effective and efficient treatments for your child -- a daunting task, given the explosion of internet and other material directed at parents of children with autism: the tempting promises of cures, simple fixes, and attractively packaged therapies.

When recommending and selecting procedures to use, your behavior analyst begins with those documented in the scientific behavior analytic literature, ideally with subjects who are similar in age and diagnosis to your child. There are now hundreds of scientific studies documenting the effectiveness of various behavior analytic procedures for children with autism. The behavior analyst narrows the selection based on individual variables related to your child’s profile, such as pre-requisite skills, child and parent preferences, and ease of implementation. Examples of well-researched, effective ABA procedures include prompting, fading, shaping, chaining, and differential reinforcement.

Some of the more celebrated ABA approaches, such as pivotal response treatments and discrete trial training, are actually complex combinations of individual procedures. Uniquely, all applied behavior analytical procedures are based on the original behavior analytic principles -- the science of behavior -- which have been established for more than fifty years.

Your behavior analyst will not only ensure that your child’s time is being spent engaged in evidence-based therapies, she will supervise the collection of data to ensure that these therapies are actually working. If your child is not progressing with specific treatments, she will recommend modifications.

If you are interested in pursuing non-behavior analytic treatments, a behavior analyst can assist you in evaluating the quality of evidence available for these treatments, so you can make informed decisions on how to maximize your child’s progress, and avoid ineffective and possibly harmful treatments. (All parents of children with new autism diagnoses should read Gina Green’s chapter Evaluating Claims About Treatments for Autism in Catherine Maurice’s book Behavioral Interventions for Young Children with Autism.)

Your behavior analyst will not make promises. ABA does not come in a glamorous package. It is smart, hard, effective work.

Behavior analysts like to talk about pivotal behaviors, and so should you -- we all need to focus on pivotal behaviors. They lead to desirable changes in the environment which then lead to more and more complex pivotal behaviors, and then further positive environmental changes -- an upward spiral of skill growth and resulting increase in life opportunities.

Let’s look at the ability to make a choice as an example of a pivotal behavior. For a young child with autism, making a choice may begin as simply choosing between two visible selections. This generally results in a positive change for him -- he might get to participate in an activity he himself has selected, rather than one chosen by someone else. When our actions have preferred outcomes, we tend to repeat them. So, this child will likely continue to make choices -- perhaps initially from two visible options, and later when presented with a few verbal options, and perhaps in the more distant future when discussing together with the family “what should we do this weekend?”

The significance of learning this basic skill of choosing between two selections is pivotal because it can naturally lead to further vocabulary growth and independent choice-making behavior. As a society we greatly value being able to make choices for ourselves, and often consider our options and ability to make choices as a quality of life indicator. So, too, will your child be happier and less likely to use problem behaviors when there are opportunities to make choices in his life, and when he has the skills to take advantage of those opportunities.

A behavior analyst will guide your child’s program towards such pivotal behaviors, which maximize the kind of learning that leads to further learning and a greater quality of life for your child.

How do I Find A Qualified Behavior Analyst? 

The first place to look is the Behavior Analysis Certification Board (BACB), where a list of board certified behavior analysts (BCBA's) in your area can be found. A BCBA is qualified, at a minimum, with master’s level course work in behavior analysis, supervised practice as a behavior analyst, and a passing score on a board certifying exam.  BCBA's have master’s degrees in behavior analysis or related fields (e.g. special education, psychology), and BCBA-Ds have doctorates. In addition to the above initial qualifications, BCBA's are obliged to document their engagement in ongoing professional development activities such as conferences, workshops, and coursework. BCBA’s must also adhere to the Behavior Analysis Guidelines for Ethical Conduct. Thus, a BCBA is accountable to the communities she serves via the Behavior Analysis Certification Board.

This is not to imply that practitioners without a BCBA are not skilled or qualified. There are expert behavior analysts who have had years of training and experience, who are not board certified. And board certification does not guarantee that a behavior analyst is good, or is a good match for your child.

Beyond the above minimum competencies, seek a behavior analyst with at least a few years of experience in working with young children with autism, and with current knowledge of the autism research literature. Finally, as with all professionals on your child’s team, find someone with whom you feel comfortable -- a good match.

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References

Websites
Professional Research Journals
  • Journal of Applied Behavior Analysis (JABA)
  • Analysis of Verbal Behavior
  • Journal of Autism and Developmental Disorders
Books