Friday, July 30, 2010

Preventing Meltdowns: Outsmarting the Explosive Behavior of Individuals with Autism Spectrum Disorders

Judy Endow, MSW

Meltdown behavior is quite common for those with Autism Spectrum Disorders. And, indeed, the most frequently asked question by parents and educators is: “What do I do when my child has meltdowns?” 

When the meltdown is occurring, the best reaction is to ensure the safety of all concerned. Know that explosive behavior is not planned but instead is most often caused by subtle and perplexing triggers. When the behavior happens, everyone in its path feels pain, especially the child.

Stages of Explosive Behavior

So, what exactly is explosive behavior? In my book Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals with Autism Spectrum Disorders (Endow, 2009), explosive behavior is defined as having four distinct stages, followed by a clearly defined recovery period. In addition, the physiological fight/flight mechanism is triggered immediately prior to the explosion.

In this model, the four stages of explosive behavior are the same for all experiencing explosive behavior and are depicted by four train cars called Starting Out, Picking Up Steam, Point of No Return, and Explosion. The idea is to try to prevent the train cars from hooking up because when they do we have a runaway train that ends in explosion.

Working backwards, the Explosion is the stage where the meltdown behavior is evident. Immediately prior to this is the Point of No Return, which is exactly what it implies -- there is no going back from the meltdown because this stage is where the fight/flight response is triggered. The pupils dilate, and breathing and heart rates increase. Physiologically, our bodies respond as if our very lives are at stake, and we automatically behave accordingly: We fight for our lives. It is entirely impossible to reason with anyone in this survival mode. As soon as you see the child’s identified Point of No Return behavior you can know the Explosion is coming and need to do your best to quickly create and maintain a safe environment.

The place to impact explosive behavior is ahead of when it occurs. In the Starting Out phase, whispers of behaviors are evident. The Picking Up Steam phase is just that—the whispers become louder. Though you can learn to successfully intervene at these stages, the most effective way to manage explosive behavior is proactively, before the whispers even start.

Strategies to Prevent Meltdowns Before They Start

An individual mix of three major supports and interventions is usually most effective in preventing the first stage of meltdown behavior from starting. These three major supports include proactive use of a sensory diet to maintain optimal sensory regulation, visual supports, and managing emotions that are too big (Endow, 2010).

People with AS usually do not have sensory systems that automatically regulate; instead, they must discover how to keep themselves regulated. This is most often accomplished by employing a sensory diet. A sensory diet for a person with autism is like insulin for a person with diabetes. It is easy to understand that a person with diabetes has a pancreas that is unable to regulate insulin effectively. We can measure blood sugar and know the exact state of affairs, and from there figure out how much insulin the person needs.

Sensory Diet: Unfortunately, medical science does not allow us to take a blood sample to measure sensory dysregulation. However, we can figure out and employ a sensory diet to prevent dysregulation, and just like insulin prevents serious consequences for a diabetic, a sensory diet prevents serious troubles for an individual with ASD. As an adult with autism, I spend time every day on sensory integration activities in order to be able to function well in my everyday life. A sensory diet employed proactively goes a long way in preventing the Starting Out stage of explosive behavior from ever occurring (Brack, 2004).

Visual Supports: Another crucial area of support to put in place proactively is that of visual supports. As an autistic, I can tell you the saying “A picture is worth a thousand words” is the monumental truth. Although each person with ASD has a unique experience, processing written and spoken words is not considered by most of us to be our “first language.” For me, the meaning I get from spoken words can drop out entirely when I am under stress, my sensory system is dysregulated or my felt emotions are too big. Visual supports can be anything that shows rather than tells. Visual schedules are very commonly used successfully with many individuals with ASD. Having a clear way to show beginnings and endings to the activities depicted on the visual schedule can support smooth transitions, thus keeping a meltdown at bay. For maximum effectiveness, visual supports need to be in place proactively rather than waiting until behavior unravels to pull them out.

Managing Felt Emotions: A third area in which many with ASD need proactive support is in managing felt emotions. Most often, felt feelings are way too big for the situation. An example in my life is when I discover the grocery store is out of a specific item; I get a visceral reaction very similar to the horror I felt when first hearing about the 9/11 tragedy. I know cognitively the two events have no comparison and, yet, my visceral reaction is present and I need to consciously bring my too big feelings down to something more workable in the immediate situation. Managing felt emotions does not come automatically, but can be learned over time with systematic instruction and visual supports such as The Incredible 5-Point Scale (Buron & Curtis, 2004).

The good news is that explosive behavior can be positively impacted. With proactive supports, explosive behavior can be outsmarted so individuals with ASD can move on to living purposeful and self-fulfilling lives. 

Brack, J.C. (2004). Learn to Move, Move to Learn! Sensorimotor Early Childhood Activity Themes. Shawnee Mission, KS: Autism Asperger Publishing Company.

Buron, K.D., & Curtis, M. (2004). The Incredible 5-Point Scale. Shawnee Mission, KS: Autism Asperger Publishing Company.

Endow, J. (2009). Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals with Autism Spectrum Disorders. Shawnee Mission, KS: Autism Asperger Publishing Company.

Endow, J. (2010). Practical Strategies for Stabilizing Students With Classic Autism: Getting to Go. Shawnee Mission, KS: Autism Asperger Publishing Company.

First printed on with permission of the Autism Society.

Thursday, July 29, 2010

Autism Service Dogs

Sarah Oriel

In the Fall of 2003 my mother sent me an article from the Vancouver Sun newspaper. It was about an organization in Canada that was training dogs specifically for young, autistic, children. I was fascinated and excited -- Josh was 5 at the time and I had already been thinking about whether a dog could be of some help to him.

National Service Dogs in Canada (NSD) was responding to a need they discovered quite by accident. They had been in the business of training assistance dogs for adults with other types of disabilities.  Then they received a desperate plea from the mother of a young autistic boy, asking if they could train a dog to help her keep her son safe. This little boy was a "runner": he would get out of their house at all hours of the day or night, and take off while in dangerous places. His family was at a loss.

The NSD trainers weren’t sure what they could do, but after talking with the family in depth, came up with a training plan they thought might work. It involved the dog working with the child and an adult handler as a three member team. The child would be tethered to the dog using a special belt attachment and the adult would be the one managing the dog on a leash. They worked on this new system with the family and the result was an amazing success. Not only did the tethering system have the obvious benefit of keeping the boy safe, but a bond developed between this child and the dog that no one expected.

NSD began receiving more and more requests from parents of autistic children. There was clearly a need in our community, they’d seen real success with the program they’d developed, so from that point on, they chose to focus entirely on training and placing service dogs with autistic children.

Working dogs are new to the autism world. Working dogs for children are new to the entire service dog industry. Less than ten years ago, working dogs were only trained/placed with individuals considered old enough to handle the dog on their own -- the minimum age I found while doing my own research at the time was 16, and for most organizations it was 18. And no one was training dogs for people with autism. Well, almost no one. There was NSD. In my later research I found that there were one or two other organizations in the U.S. also working on programs for children on the spectrum but at the time of my initial searching, NSD was all that I could find.

My son is not and was not ever a classic “runner.”  He did have a tendency to wander though, and had on a few occasions either left or tried to leave the house. Taking him anywhere in public was a struggle -- he would wander off if I didn’t have him by the hand, but he didn’t want to be held on to and would always fight to get free. This was always frightening in places like parking lots or anywhere his pulling away from me could possibly put him in danger. 

The other benefit I hoped a dog could provide was simply to be a calming influence for Josh, who was prone to some pretty horrific tantrums. Josh is and always has been a very sensory experience-seeking child. I thought that a dog, with its fur, warmth, and constant presence, might just help Josh feel less stressed, give him an anchor, something he could count on always being there without placing demands on him. The testimonials from families that already had dogs were amazing. (Of course, all of our children are different, and you really don’t know how your child will respond to having a service animal and what, if any, relationship might develop, until you actually have one.)

With that in mind and after a great deal of discussion with Josh’s dad, I started down the road to get a dog for Josh. It took three years. It was a long, and often frustrating process that for us also involved changing organizations mid-course. 

One of the questions, and it is a big, important question regarding a service or assistance dog is “how much does it cost?” Depending on the organization, it will cost anywhere from around $8,000 to upwards of $15,000.  Before you stop reading because those numbers just stabbed you in the heart, here is the rub: this is not a “fee” for the dog. All of the organizations that train service animals are 501c3 entities, they cannot ask you to “pay” for the receipt of a dog. What they want is for you to fundraise for them. It’s a lot of legal semantics, because yes, you send them money, you get a dog. But the money is considered and deemed a charitable donation to the organization. You get a dog because you were accepted to their program.

It’s a fine line, and I know of only two exceptions: Canine Companions for Independence -- who were not training dogs for autistic children when we were going through the process but do now -- do not require any financial commitment from you at all. Despite being new to providing dogs for autism assistance, they are certainly not new to the service dog industry. Their application process is much longer and more involved than any of the others and I would imagine that because there is no financial obligation of any sort that it is much, much harder to be approved for a dog from them -- and I could not tell you what their waiting list is like. They have been training many different types of assistance dogs since 1975.  NSD is the other exception. While they do ask you to fundraise to reach a certain donation amount, you will receive your dog regardless of whether or not you reach that set goal. All of the other organizations ask for and require the donation requirement be met prior to receiving your dog.

So the other big question, "how long will it take to get a dog?" depends primarily upon which organization you work with and how long it takes you to meet the fundraising requirements. If you are fortunate to have the means to make the donation yourselves, then you will have your dog much faster than if you have to fundraise, though with NSD your place on the wait list is your place, regardless of meeting your goal quickly or not. Most of the larger organizations have programs in place to assist you in the fundraising process so there is usually a lot of help and guidance available.

We started out with NSD but after about two years on their wait list and facing what would likely have been another year, I was impatient. I started searching for alternatives and found one in 4 Paws for Ability.  They are an Ohio-based organization that had been training dogs to work specifically with children with all sorts of different disabilities, and autism was now one of them. Because they did not rely on a breeding program for the dogs that they trained (unlike NSD and several other groups), they were able to speed up the process somewhat. They also set you up for training once you met your donation requirement. 4 Paws uses donated dogs, rescued dogs, and some that they have bred for their programs.  All of their dogs are temperament-tested before being placed in to a training program.  There are pros and cons to this that I will address later.

I had NSD take us off their list, then set to work with 4 Paws. With any of the organizations, a training session is required. They vary in length a little, but you should count on anywhere from 1- 2 weeks where you will have to travel to their location to train with your new dog. This includes your child, since you will be working as a team. Most of the training is for the adult that will be the dog’s primary handler though, so, make sure if you decide that a dog is right for your child, you have the ability to travel with at least one other adult who can be with your child during the times they are not involved in the training sessions.  Keep in mind, the cost of your travel and related expenses will be up to you. Also remember that the journey home will include your dog, so if your travel has to include flying you will need to talk to the airlines ahead of time.

Our journey was a complicated one and we ended up coming home from our first scheduled training early, without a dog.  There had been issues in communication and some misinformation between the 4 Paws staff and myself, as well as a situation that arose during training that we were unable to resolve.  Due to some of the issues, I was not sure I wanted to continue with them but after some discussion with their director, chose to continue to work with them to get my son his dog. We went back a few months later for another training session with a different dog and came home with Buddy, my son’s autism assistance dog. 

Buddy was a rescued dog, a Katrina refugee if the story is to be believed, though he really had come to 4 Paws with very little information about his past. No one even really knows what kind of dog he is, though everyone seems to have a theory. We have decided he is a Catahoula Leopard dog, though probably not a pure-bred one. 

Having the dog has made a big difference for us. Josh does not mind being tethered to him, and seems to appreciate the freedom to move about on his own somewhat without anyone having to hold on to him physically. It has kept him safe and easily managed, from places like the grocery store, to very expensive furniture stores that would otherwise have been a nightmare, to Disneyland. Our first trip to Disney was before we got Buddy, and though it was fun, it was somewhat difficult having to keep Josh in a stroller all the time. We have been twice with Buddy, and both times were much better: I knew Josh was safe, never had to worry about him taking off and getting lost in the crowd, and he didn’t have someone hanging on to him and had enough freedom to move around on his own so he was happy.

Buddy was trained in tracking as well as obedience work, so if Josh ever did wander off, we would be able to get to the business of finding him very quickly and it was one of the things we practiced extensively in training.  Josh does not wander so much any more, so it’s a skill that I doubt we’ll ever have to have Buddy use. It is still important for many families, though. Josh has not developed a “special” bond to Buddy that any of us can discern so we have not seen some of the benefits that can come along with that, such as the dog being sensitive to the child’s needs -- but it does seem that Josh is more content to do whatever it is we are doing when he is tethered to the dog and not being held by the hand. It can make such an enormous difference.

Also, and this is one of the biggest benefits aside from safety, the dog is a wonderful ambassador.  When out in public with Josh before we had Buddy, most of the attention he got would be negative.  When he is with Buddy, it’s all positive. People come up to ask me questions now instead of simply staring at us, and I use the opportunity to do a little educating.  This is of particular importance for kids who are higher functioning and taking their dogs to school, as it really helps build relationships with the other children and even staff.  Instead of seeing a child who is “different” that they might not want to approach, the kids see the dog, and naturally want to know all about it  -- it’s an ice-breaker that almost always promotes positive interactions.

A service or assistance dog is not for everyone, so I encourage you to think very, very carefully about your decision. Dogs in general require a lot of care and on-going maintenance; dogs that are specially trained to work require even more. And having a child or children on the autism spectrum is itself a ton of work, so just remember that while potentially being of great benefit, you will be adding to your workload with a service dog. Having a service animal requires much more of you when traveling, for example.

You should also determine whether you feel a therapy or companion dog would be better for your family; they are not the same as service/assistance animals. A therapy/companion dog is still trained specifically for certain behaviors, however they are not trained nor certified to be in public places with you. My experience is with the service/assistance dogs, but I would imagine a therapy dog would involve less expense overall. It really depends on what your needs are.

Look at your candidate organizations as closely as possible, because there are a lot of considerations: Ask as many questions as you can and then make the best choice for your family:
  • Some organizations will send their trainers to you to spend time helping you after you get home from your initial training, which I believe is invaluable. But not all of them do this.  
  • Some use dogs only from their own breeding programs, ensuring the breeds and temperaments that are necessary for these dogs to work as they do.  
  • Some will use rescued dogs or donated dogs, and even though they have all been temperament tested and trained, you never know what that dog has been through in the past -- this is a concern with Buddy right now.  
  • Only one of the organizations currently trains the dogs to track, if that is a skill you would like them to have.  
You have to decide what your priorities are, look at all of your options and go from there.

All of the organizations have satisfied and very happy families that can tell you how great their experiences were, so read the testimonials. Just keep in mind not everything always goes smoothly.  If I had it to do over again knowing all that I do now, there are some things I would do differently but I would still want a dog for Josh.  In the end, if you believe a service dog could help your family/child, it will be worth what it takes to get there. 

Here is a list of the organizations I've found that are training dogs for children on the autism spectrum:

Wednesday, July 28, 2010

On Autism and Self-Compassion

Kristin Neff  Ph. D.

My field of study is self-compassion, it's what I do all my research on, and I'm writing a book. One of the things that this practice has given me is that I'm really okay with being my honest, authentic self.

It's not that I like people judging me. It was kind of hurtful, some people really went after us because of the [Horse Boy] movie, they said that we made it all up, that we're in it for the money, and people who didn't know me were making all these assumptions about my character. It was really strange; I never thought I'd be in that position.

But in terms of the stuff that is true about me, I'm really okay with it. I'm also okay with admitting my flaws and my shortcomings, and that it's okay to be imperfect. In my book [on self-compassion], I actually go into some quite personal details about my life, because I feel that if you're going to tell a story honestly, and if you're going to affect people, and if you then make it a picture-perfect, Ozzie and Harriet-type thing, it's not real life.

Self-compassion made a huge difference in raising Rowan [my son with autism]. Both Rupert and I are really committed to self-compassion. We really made sure we had compassion for how difficult it was to be Rowan's parents. We gave each other breaks, nights off.

I think a lot of autism parents are so in problem-solving mode, and they're so focused on helping their kid -- it's hard to admit the grief, because you feel, "I love my kid so much -- how can I admit how difficult, and how painful, and how depressing it is sometimes?" And I think that you have to acknowledge those painful feelings, and that actually allows you to love your child even more. I don't think autism parents do that nearly enough -- or any parents, for that matter. But especially the autism parents. You have to acknowledge the grief.

When Rowan was first diagnosed, I went to a local Autism Society of America meeting, and everyone was kind of happy, and talking about this and that. I said, "Look, I am struggling with an intense amount of grief right now" and then they all helped and supported me.

So it can be really hard, like this morning, when Rowan had a bad day, and for an hour he was in such distress, and there was nothing we could do. I made him a little replacement toy wheel [for his train] and I was so clever and I was so proud of myself -- and it would not do. It's really really frustrating and hard. Sometimes. And then sometimes it's beautiful and glorious, and he's the best kid in the entire world -- and he is! But it's all of it. It's the whole -- spectrum.

It's not the positive instead of the negative, it's both. As Kahlil Gibran says, "The deeper that sorrow carves into your being, the more joy you can contain." And I think there is really some aspect to that with autism. The amount of sorrow and frustration and grief is really intense, but it matures you. And then you have the joy and you have the good things, and that's more intense. I think it's a growth-learning-opening experience, every bit as much -- or more, actually -- for the parents than the kids. And that's beautiful, and it's difficult. It's certainly an interesting path to go down, isn't it?

I think autism breaks open your heart. The big lesson in life is that you can't control things, and you have to be open to what life brings you. You can bang your head against the wall of reality as much as you want and it won't help. Autism forces you to accept what you don't want. That is the whole lesson with Buddhism and a lot of spiritual traditions, it's all about surrendering to this greater unfolding and not trying to control things. Autism parents are forced to learn that lesson, and that's a really good lesson to learn.

Excerpted from a interview.

Tuesday, July 27, 2010

What to Ask of an Occupational Therapist

Barbara H. Boucher, OT, PhD, PT

My identity as an OT runs as deep as my sense of being an adult. I begin on a personal note because if you have trouble discerning a person’s face or need concrete affirmation of my being you might imagine me to have three heads: As a naive undergraduate I learned at the feet of Jean Ayers’ generation of occupational therapists. For reasons that are most easily characterized as my professional "developmental" trajectory, I became a physical therapist, also. A complete psychological profile of me might read that I received a great deal of reinforcement in an academic setting. From my Doctor of Philosophy (PhD) in Human Development and Family Sciences I claim the title of Child Development Specialist.

If the words "occupational therapy" (OT) are new to you and accompanied your child’s diagnosis, you are not alone in struggling to understand what "OT" means. Just last week my cousin asked me if occupational therapists (OTs) assist people in finding a job. Yes, well, if you mean helping a person through the eleventybillion steps, tasks and activities necessary to obtain a job!

In my own words1:
  • Occupational Therapy (OT) is therapy for learning to (do) renew or revive those daily activities we do in everyday life.
  • For those activities that cannot be revived, OTs are specialists for adapting the home, person, or activity for participation in that activity again.
To get a more personal or individual benefit from the OT treating your child I offer several request-suggestions for you to make of your child’s therapist. These might appear to be different phrasings of the same questions, but I am intentionally giving you several verbal options for you to choose from in order to gain understanding between you and the therapist. There is no "magic" in good communication (with apologies to speech therapists) but the results can be magically effective for your child.

First request-suggestion: Please show me how to help my child live comfortably in our home with our family.

This broad request can open up a slew of techniques for helping you emotionally adjust to your child’s diagnosis and give you options to choose from or trial. Assuming your therapist is sensitive to your responses, if you are overwhelmed she will adjust the slew to one suggestion at a time. I also expect your therapist to give you the opportunity to prioritize your concerns -- to say which issue you would like to address first.

Along with the semantically-strange name for therapy (OT) you are also learning the meaning of a whole new vocabulary to describe your child’s particular responses to sensations. Response to sensations and using sensations as techniques is often misunderstood as curative of the behaviors commonly seen in children with spectrum diagnoses.

I am intentionally suggesting this request first to dispel the thought of OT as curative or medicinal. Therapy is distinctly different from medicine in that it is a process -- many repeated actions over time that effect a change. Sadly OT and PT have been "dosed" in a medicinal manner – as though 30 minutes 2x/week will effectively decrease autistic behavior. Sincerely, therapy is not curative so much as therapy can make life more livable.

Sensory dysfunction, rather dysfunctional response to sensations, can accompany cognitive and social learning delays. Problems, issues, neural dysfunction evidenced by extreme responses to sensations  are parallel to cognitive and social development, not the sole impediment preventing cognitive and social development. (Similarly, seizures are common in children with autism spectrum diagnoses. Uncontrolled seizures impede learning.) The behaviors that indicate sensory dysfunction can impede learning and need to be managed. An occupational therapist can help you manage your child’s sensory dysfunction. (Alternatively, medicine is the primary means for controlling seizures.)

Dysfunctional response to sensation can mask learning potential, but careful and effective sensory management will reveal a child’s potential on the intelligence spectrum. Indeed, many children have sensory proclivities that do not land them on the autism spectrum. If your child is on a different developmental trajectory, an OT can help you guide your child’s growth and development toward a more independent (functional) life by meeting his innate potential. Home is the place to begin this guidance and I urge you to invest your energy there first before you charge the school with your rights booklet in your raised, fisted hand.

Second request-suggestion: Please help us create a sensory diet for our child.

The analogy of a sensory "diet" is apt for the kind of lifestyle habits needed for managing sensory dysfunction. Food is necessary in life. Diets are individual to tastes -- so many foods, so many ways to cook and serve them! I support the sensory diet concept2: "a carefully designed, personalized activity plan that provides the sensory input a person needs to stay focused and organized throughout the day," but it can be difficult for parents to implement. Some have difficulty reading the daily nuances that indicate a child's need for a different "snack," and are best helped by following therapist-prescribed protocols (a diet). 

By asking an OT for a sensory diet, you acknowledge and understand that your child’s responses to sensation are interrupting your family life, and you want help to make changes to improve your family’s life. Be open to the idea that you will (by extension) be receiving services from the OT. Treating the family "by extension" is consistent with OT theory and philosophy -- the patient/child is seen as functioning within a context or "ecology" and not in a separate clinic setting.

Third request-suggestion: Please explain the services maze available for my child.

With this request you are asking for a map and a compass into the jungle of acronyms and costs associated with your child’s diagnosis. Some of this information is mandated to be given to you (the rights booklet). However, no matter how much regulation dictates that you be informed, unless you go forward expecting to use a machete to cut your own path, you will be at the mercy of eleventybillion "mosquitoes."

Different and overlapping regulation layers exist for employers, licensing, schools/special education, insurance, Medicaid, and medical care. Each layer might touch (bite) your child’s (your) life. Some of those regulations are particular to your state, and some apply to the entire country but are implemented in a seemingly individual manner -- as with the "I" in IEP (Individualized Education Program or Plan) and IDEA (Individuals With Disabilities Education Act).

Commonalities between family experiences abound, so it is good find other families with children with an autism diagnosis -- add the words "support" and "advocacy" to your list of desirable jungle plants. Expect your OT to guide you to the sweetness of not feeling alone by showing you where to find other families "flowering" with autism.

If an OT shows you to the thorny “I’m-not-allowed-to-tell-you” bush, consider that a red flag. If you can, rephrase your request. Some information is not allowed to be passed between the therapist and acaregiver, responsible person, patient, or child. If you are able, seek out as much information as you can yourself via the Internet or a library before asking your OT.

Fourth request-suggestion: Please show me how to help my child progress in school.

This request logically follows the previous three requests. Before you armor yourself with rights and expectations for IEP battle, be sure you know your child really well. I have met parents who have been led to believe that a one-on-one aid with inclusion is the Holy Grail of success for a child in public school. Expect an OT to help you see the (many) steps needed for your child to be more independent in public school. OTs are philosophically-primed to understand process -- or how-to-get-there.

Knowing your child really well -- as in how she responds to different sensations and the many methods of helping her manage her responses -- will help you interact with her teacher(s). However, this information is not necessarily the point of an IEP meeting -- the P in IEP stands for plan or program, but not the lesson plan. Knowing your child really well you can bring suggestions for possible next achievements in school (goals) to the IEP meeting. I recommend you focus on the annual goals and enlist the help of an OT determine those goals.

Fifth request-suggestion: Please show me how to help my child prepare for life after public school.

Whether your child is recently diagnosed or you are the veteran of years of special education meetings, looking towards the future can be painful. Lean on your OT, calculate her services into the long view for your child. 

Using the example of potty training (independence in toileting), ask your child’s OT to project the next step in independence toward that goal. Ask her to give you every method to help your child achieve that step -- to incorporate repetition at school. As I once suggested: what if there was only one goal on your child’s IEP and that was independence in toileting? What if everything in your child’s education was directed at independence in toileting? Once free of dependence in such a personal and typical activity of daily living, your child would be free to learn so much more. It would be like, well, having well-managed sensory responses. And once achieved, toileting would not be an issue for the rest of his life. Just imagine.

*snappingfingers* Back to reality, I am not suggesting a single-goal IEP because I think every child can learn in more than one domain at a time. At the same time, there is a relationship between rate of learning and what should go on the IEP. You will have to make decisions between learning components that appear academic, social skills that are cognitive, language dependent, and functional skills like toileting that are tied to motor development. Many children do better if more time is focused on fewer expectations. Since occupational therapists have a holistic mindset, you should mine the brain of your OT to make IEP decisions for your child that will lead to a good quality of life after school.

Throughout my whole career, I have met the patient/client where they are at and sought to nudge them forward or in their own self-determined direction. I truly believe in empowering people to grow beyond the time they spend with me. Expect the same from your child’s OT and you will get a return on the value of every cent you invest in her.


Monday, July 26, 2010

Autism: Feeding Issues and Picky Eaters

Judy McCrary Koeppen

Autistic children are often very picky eaters, or have eating issues. Having your child refuse to eat any foods that are not white and soft in consistency can be maddening, but as a speech therapist and parent I’ve found it most helpful to have a clear understanding of why a child self-limits their diet.

Eating is a multi-sensory experience. Each mouthful brings the possibility of a variety of flavors, textures and temperatures. A feeding specialist would break this down further, identifying "Flavors" including sweet, sour, salty, spicy, bitter and neutral; "Textures" including crunchy, chewy, soft, mixed, puree, thick liquids, and thin liquids; and "Temperatures" including cold, room temperature, warm, and hot. In addition, we experience food odors, and often the way they feel in our hands. Many children who are picky or problem eaters may have Sensory Processing Disorder (SPD). In her book The Out of Sync Child: Recognizing and Coping With Sensory Processing Disorder, Carol Stock Kranowitz, MA defines SPD:
Sensory Processing Disorder is difficulty in the way the brain takes in, organizes and uses sensory information, causing a person to have problems interacting effectively in the everyday environment ... SPD is an umbrella term covering several distinct disorders that affect how the child uses his senses.
As I see it, a child with SPD may by hypersensitive, hyposensitive, or a mixture of both. The hypersensitive child may experience flavors, textures, temperatures, and smells to a degree that is not perceived by most others, or they may under experience them. The smell and texture of grilled chicken may elicit the same noxious sensory response as being stuck in a room with skunk stench. “GET OUT OF HERE!” is the message the body will send. The hyposensitive child may seek out strong flavors and crunchy, hard textures to make up for experiences they are missing. They may like spicy food, sour flavors (lemon, vinegar), and only crunchy foods.

Food choices are based on individual children’s sensory experiences. Foods providing a favorable sensory experience will be selected over those that provide a noxious sensory experience. Because a child with SPD can have eating experiences that are altered and different from their parents', it can be very difficult to understand their preferences.

Autistic children can have SPD, but autism has its own factors that can contribute to picky eating. Autistic children are often uncomfortable with a change in routine. This preference for sameness can show up at meal time as well. Children may want foods to be from same container, the same brand, served on the same plate. So they may want a steady diet of McDonald's chicken nuggets (no other brand), Snapple raspberry tea (only from the Snapple bottle), and Dannon vanilla yogurt (no other brand or flavor) served on the same plate.

Eating involves the integration of a variety of sensory experiences and is influenced by the “mealtime experience.” So what is a “typical” eater and when is eating a problem?

The Continuum of Eating Types

A "typical eater" will usually:
  • eat a variety of foods
  • show interest in foods
  • tolerate the presence of new foods and try new foods
A "picky eater" can:
  • Have aversions to some foods, but still eat a variety
  • Eat foods from each texture group and food group
  • Tolerate the presence of new food
  • Be willing to touch or try new foods
A "resistant" or "problem" eater will often:
  • Eat 15 to 20 foods or fewer
  • Refuse of one or more food groups (often preferring carbohydrates)
  • Refuse of one or more texture type (often preferring crunchy or soft foods, not both)
  • Tantrum or melt down at meal times
  • Prefer one flavor (often sweet or salty)
  • Prefer strong flavors OR bland flavors
  • Prefer foods of the same color
  • Prefer certain foods to always be the same brand. For example, only chicken nuggets from McDonald’s.
  • Gag when trying new foods
  • Display anxiety over the presence of new foods on their plate, on the table or even in the room
  • Find the smell of certain foods to be noxious
A child who may become a problem eater often starts to refuse foods when parents introduce chunky baby food. The presence of a solid requiring chewing and puree (or liquid) that does not require chewing is often perceived as noxious. This can play out in a child refusing to eat vegetable soup of diced vegetables and broth, but then eating the same soup when pureed. Many fresh fruits can present the same way. Citrus fruits, watermelon, ripe peaches and pears consist of a solid and juice combination. These are also often refused. Children may have “food jags” where they will request and eat the same food at every meal. The problem with this is that often children will suddenly refuse this food. For a child with a severely limited diet the elimination of a key diet item can be problematic.

What parents of problem eaters need to understand is that they did not create the feeding problem. Problem eating is the result of very real physical and neurological responses on the part of the child. Usually the parent of a problem eater has continually offered their child a large variety of healthy foods. When given the choice of a food perceived as noxious or not eating at all, these children will choose to not eat. They would do so over consecutive meals if made to. Withholding food or physically forcing a child to eat is never a successful method to get them to eat. In her book How to Get Your Kids to Eat ... But Not Too Much, Ellyn Satter defines the role of a “good parent“ when feeding their children:
Good Parents are responsible for feeding their children ... Parents and professionals working with children are responsible for preparing and providing a well balanced meal at an appropriate schedule and setting. The child is soley responsible for whether they eat and how much they eat.
What You Can Do
  • Create the Best Schedule and Setting for Successful Eating
    • Have meals and snacks at predictable times. A written or picture schedule can be helpful.
    • Eating and drinking done at the table during snacks and meals
    • Offer water to drink between meals
    • NO GRAZING. If children are allowed to eat through out the day they will not be able to regulate sensations of hunger and satiation. They may also snack on preferred foods during the day to fill themselves and eat fewer healthier foods at meal time.
  • Rotate foods and when they are served. For example, If a child can predict always having a large glass of milk before bed, they will eat fewer foods offered earlier in the day.
  • Meal time should be a non-stressful experience for a child. Stress decreases appetite and children will avoid mealtime if the perceive it as a stressful time.
  • Don’t use dessert as reward-reinforces idea of having to eat “bad food” to get “good food.” Incorporate small amounts of dessert items into meals.
  • It’s okay to leave food.
  • Mix it up. It is okay to have pancakes for dinner.
  • If needed, post behavior rules (written or pictured) near table. For example, no throwing food.
  • Include preferred foods at every meal.
  • Be a model. Eat with your children. Talk about the foods and their textures, flavors, smells etc.
  • Have children participate in meal planning and preparation as is developmentally appropriate. Include them in: shopping, choosing foods, preparing and cooking foods, setting the table, serving food etc.
  • Let children chose the plates and cups they use at meal times.
  • Redefine “Success.” Children are taking risks and showing progress when they do any of the following with new foods: smell, touch, poke with a fork, touch to lips, touch to chin, or lick. Even tolerating a new food in the same room or on the table is success. All of these activities are worthy of big praise. It is important to recognize these as signs of success, even though they have not actually taken a bite.
  • PRAISE, PRAISE, PRAISE any participation in food-related experiences.
Rethink What Foods to Offer

The "Food Chaining" method for working with problem eaters looks at individual child’s eating habits. In their book Food Chaining: The Proven 6-Step Plan to Stop Picky Eating, Solve Feeding Problems, and Expand Your Child’s Diet, Cheri Fraker, Mark Fishbein MD, Sibyl Cox, and Laura Walbert offer a common sense approach to dealing with problem eaters. In short, an analysis of a child’s eating is done by looking at the characteristics of their preferred foods. Characteristics examined include: food groups, textures, flavors and textures. Foods which are highly similar to the preferred foods are selected to be introduced. I have had wonderful success in my practice using this approach and recommended their book for both parents and professionals. The Food Chaining courses are excellent as well.

An additional approach that has had excellent success is the the Sequential Oral Sensory (SOS) feeding program created by Dr. Kay Toomey. This program integrates sensory, motor, oral, behavioral/learning, medical and nutritional factors and approaches in order to comprehensively evaluate and manage children with feeding/growth problems. It is based on the “normal” developmental steps and skills of feeding. Information on this approach is available to professionals (and possibly parents) who attend SOS training.

What Else Can I Do?
  • Consult your pediatrician and/or nutritionist with concerns regarding adequate growth, nutrition and hydration.
  • Continue to educate yourself about SPD and problem eaters (see Resources, below)
  • Seek out support from other parents of problem eaters
  • Incorporate developmentally appropriate food experiences and education into your child’s day:
    • Songs about food: “Apples and Bananas”
    • Children’s books about food and eating (see Reference List)
    • Play with plastic foods. Sort by food groups, create pretend balanced meals
    • Paint with food. Make potato or melon stamps to use with paint
    • Use carrot, celery and other foods to paint with condiments
    • Avocado (or banana) can be cut up peeled and squished to use as finger paint or “shaving cream”
    • Load and dump toy trucks with various crackers, nuts. Talk about textures, colors, smells
    • Create a picture by gluing dry foods on paper (crackers, dry roasted soy nuts, dried fruit, freeze dried fruit)
    • Make necklaces of diced, pierced fresh, or dried fruits and veggies
    • Look at and experience foods in various forms: whole carrot with greens, peel the carrot, shred it, dice it, cook it, carrot juice, freeze dried carrots (can do with apples, peaches)
Professional Help

Quite often parents need to seek out professional help for their children. When pursuing an evaluation and treatment, it is important to find a feeding specialist who has experience with problem eaters. Speech or Occupational Therapists often seek out specialization in this area. Ask to have a phone consult with a therapist to gain information about the approach they use. While the use of one-to-one reinforcement for eating a new food (for example a bite of non-preferred saltine cracker earns a bite of preferred fish cracker) can be acceptable, forcing a child to eat is never acceptable. These therapy services can be expensive and it is reasonable to ask a therapist about their approach, training, and experience with problem eaters.

  • Ernsperger, Lori and Stegen-Hanson, Tania (2004). Just Take a Bite: Easy, Effective Answers to Food Aversions and Eating Challenges! Arlington: Future Horizons.
  • Ernsperger, Lori and Stegen-Hanson, Tania (2005). Finicky Eaters: What to Do When Kids Won't Eat. Arlington: Future Horizons.
  • Fraker, Cheri, Mark Fishbein MD and Sibyl Cox (2007). Food Chaining: The Proven 6-Step Plan to Stop Picky Eating, Solve Feeding Problems, and Expand Your Child’s Diet. New York: Marlow and Company.
  • Kranowitz, Carol Stock M.A (2005). The Out-of-Sync Child Recognizing and coping with Sensory Processing Disorder. New York: Penguin.
  • Morris, Suzanne Evans and Marsha Dunn Klein (2000). Pre-Feeding Skills, A Comprehensive Resource for Mealtime Development. Texas: Pro-ed.
  • Piette, Linda (2006). Just Two More Bites! Helping Picky Eaters Say Yes to Food. New York: Crown Publishers.
  • Satter, Ellyn (1987). How to Get Your Kids to Eat ... But Not Too Much. Bull Publishing
Children’s Books:
  • Brown, Marc (1997). D.W. The Picky Eater.
  • Elhert, Lois (1996). Eating the Alphabet.
  • Fleming, Denise (1996). Lunch.
  • Tenzyk, Judy (2009). Mommy What Do Carrots Do?: A Children's Book on Food.

Sunday, July 25, 2010

Supporting and Promoting The Thinking Person's Guide to Autism

Some of you have asked how you can help us promote The Thinking Person's Guide to Autism. Here are three simple actions:
  1. Follow our Twitter stream at @thinkingautism and retweet our posts. We publish a new essay every weekday, between midnight and 3 AM PST.
  2. Join the conversation: comment on our posts! We've had some great discussions, and look forward to more.
  3. Visit our Facebook page.
You can also install "like" code for our Facebook page on your blog, as we have in this blog's right-hand sidebar.  Email us and we'll send you the code.

Thanks so much,

Shannon, Liz, Jen, & Emily
Editors, The Thinking Person's Guide to Autism

Friday, July 23, 2010

Choosing a School for Children on the Autism Spectrum

Kristina Chew

My son Charlie has been in both public and private placements. He is 13 years old now; he started attending school -- a special education preschool classroom in the St. Paul Public School District -- when he was just around 2 years old. Looking back, he’s been through most every kind of placement, from special education classrooms located in a public elementary or middle school, to a small private school only for autistic children, to a large public center for some 200 children with autism and other disabilities.

Again and again, we have found ourselves looking for a school for Charlie. Too often, we have thought we have found "it" -- a school, a school district where the right program and supports and staff seem to be in place, and then things started to seem not so good, and then to fall apart. At no point have we simply found a school and been able to say "this is it," though we’ve come close to such in regard to his current placement at the large public center. We initially felt a lot of hesitation to choose a separate placement for Charlie, where all the students have disabilities and many are on the autism spectrum and there are no opportunities for interacting with "typical" children. As it has turned out, Charlie has (so far) seemed quite content at the center, a reminder to me that the best criterion for knowing if a school is right is based on how your child responds.

Please note: While some aspects of what follows are particular to New Jersey, I am hopeful that much of what I’ve noted here about choosing and assessing schools may be more generally applied.
Schools for Children on the Autism Spectrum

You've gotten past the 'early intervention' stage and it's time for your child to start going to school. Indeed, you sense that it’s time for your child to be in a school setting in addition to, or rather than, a home program, so that he or she may have opportunities for interacting with other children and be more independent and because it’s just time for your child to be in school, with other children. Perhaps your school district has a special ed preschool program that, from what you’re told and what you’ve read, uses the same sort of teaching methodology (perhaps Applied Behavior Analysis, which is pretty much the norm for autism programs in New Jersey where we live) and provides speech therapy and occupational therapy.

But, in doing your research, you’ve heard about this other school, a private one, that uses ABA too and is directed by someone whose name you recognize from some articles you’ve read and they’re holding an open house and you have this feeling, you must check it out.

Your local autism organization is one source to start with, to identify school programs. Also helpful are other parents of children with disabilities --- indeed, I’ve often found them the best sources of information, especially as regards getting a feel of what different schools are like.
  • In-district.Your child attends school in a school in your public school district. Depending on your child's needs, this school may or may not be your 'neighborhood' school; the district may have a program that suits your child's educational needs that is out of your ‘zone.’ Transportation is provided under the Individuals with Disabilities Education Act (IDEA) regardless of how far (or close) you live from the school.
  • Out-of-district. Your child attends a school that is not in your town. Such placements may be public (such as 'centers' run by a consortium of districts, or a county) or private schools.
  • Public. Your child attends a program that is run by your local school district and located in one of its schools.
  • Private. Your child attends a private school for children on the autism spectrum. Teachers and other staff members are employed by the school, rather than being employees of the school district. The school staff decides which children will be accepted into the school. Often, the school only has places for a specific number of students.
  • Non-Public Schools (NPS). These are not, strictly speaking, private schools; a child can only attend a NPS when funded by your school district of origin. Acceptance is based on need and the number of places is (or is supposed to be) dependent on the number of children who need such a placement.
Some charter schools have also been created for children on the autism spectrum. Besides ABA, other methodologies that schools might include DIR-Floortime, Verbal Behavior, and RDI (Relationship Development Intervention).

Assessing Schools

It’s imperative to see the classroom, program, school that your child will be in. Like many things, this is easier said than done.

(Caveat: Here in New Jersey, you have to live in the district before you can see a public school program. You can’t, that is, check out a program and then decide to move into a school district. This makes sense from the school district’s perspective -- programs ought only to be for residents of a town. But, before one makes the huge decision to pack up and move of course one would like to know what a program is like, rather than simply relying on word of mouth.)

When you look at a school, it's important to try to set your philosophical and political views aside, or at least to keep them under wraps, and focus on the people who will be teaching your child. How are the teachers interacting with the children? What is the ‘feel’ of the school? What is the noise/sound level at the school? A noisy school is not necessarily a bad one and a very quiet one (where you could hear a literal pin drop) is not necessarily the best, even for a child with sound sensitivities (who may prefer some ‘background noise’). The question to be answered is, is this a good school in and of itself? A place where students are educated, are respected and accepted for who are they; a place where teachers seek to teach students based on their individuals needs and not according to some unwavering pre-determined methodology and curriculum?

Private schools here in New Jersey have monthly open houses during the school year. Some of these schools being the ones that, according to a May 6, 2000 New York Times article, people come from Greece, Italy, and Israel to have their children attend, getting one’s child a spot has been said to be harder than getting into Harvard. Going to one of these open houses can be something of a tense experience, with everyone feeling that they’re trying to be on their ‘best behavior’ to garner a spot for their child.

Introductory sessions at the numerous private autism schools I visited all follow a general format, with a lecture/presentation by (usually) the school’s director followed by a tour. Given that these schools all had the teaching methodology and staffing that we were looking for -- plus some of the schools are housed in some very nice facilities -- what differentiated one from another?

It’s the atmosphere, the mood in the air, that -- after all those school visits and after all the different placements Charlie has been in -- that I’ve learned to look for. In visiting a school, I put out my sensor for a combination of acceptance merged with hope, with the sense that students are students and people first; for an aura of kindliness and caring.

I did feel this at one (quite famous) autism school. It was definitely an ABA school; the atmosphere was welcoming and warm. Other ABA schools I’ve visited seem more (if I may use the word) sterile, with most of an emphasis on having the students adhere to strict criteria for behaviors at all times. The introduction at the former school was highly informative and clearly indicated the experience of the director; still, there was a casual tone and an openness that was carried over to a tour of the school. Rather than lead us from classroom to classroom, visitors were allowed to go to whichever classrooms they wished, on their own. The director noted that we might see students upset and tantrumming and that this was routine; that students there had behavior challenges and the staff could deal with it, and in a humane way.

At the other school, and generally at most schools, visitors were required to stay together and visit rooms on a schedule so there was much more a feeling of the visit being controlled, as if to make sure that we didn’t see anything we oughtn’t.

For us, the right school has nothing to hide, is open about you visiting, asking questions, and making inquiries and even suggestions.

A Checklist

The first things that most people think about in considering schools is the academic program and the training of teachers. But other factors need to be taken into account, in particular:
  • How are ‘behaviors’ handled?
  • How open is the school? What is the visiting/observation policy? Is there a limit on how often you can visit? Can you simply drop in to see your child in his or her classroom?
  • How will the school communicate with you? A communication notebook? Email? Will there be a note every day regarding your child’s activities? Or fewer times? How will you get reports from the speech therapist, OT, PT, as well as the adapted physical education (APE)  teachers and music and art teachers?
  • What is the nurse’s training in addressing the health and medical needs of children on the autism spectrum?
  • How are staff supported? What kind of staff development is offered?
  • What is the policy for substitute instructors, when a head teacher, aide, therapist is absent?
  • Do you sense that the staff really wants to have your child there?
The building/physical setting of a school also needs to be taken into account. Once upon a time, I didn’t think this was important, but recent experiences have shown me how significant the physical setting can indeed be. First, many children on the spectrum, my son included, have sensory issues: Charlie is hyper-sensitive to sound and can hear noises in a neighboring classroom or down the hall or up in the sky and may have behavior problems as a result; due to his limited language, he is not able to explain that he has such problems. This sound sensitivity was an extra challenge for Charlie when he was in a public school autism program, with his classroom located in a large middle school. Also, being able to walk and move around has been crucial to help my son ‘manage’ his behaviors. In a public school, my son’s access to places to walk was severely limited. There were of course many children throughout the school in classrooms and Charlie crying or some such was quite noticeable and, for middle school students, not the usual sort of way to express frustration etc.

A separate school means severely reduced opportunities for interactions with other children. On the other hand, because he has access to lots of places to walk and even, if need to be, to lie down (Charlie’s sleep habits are sometimes irregular and he will be up very early or go to sleep very late, and still get up very early). There is a gym, a track, and a swimming pool. The school is in a huge building designed somewhat like a shopping mall, with open space at the center and classrooms around the edges in a circle. It’s an open layout that seems reassuring for him (Charlie seems less comfortable in small and confined spaces, though when he was younger he sometimes sought these out).

Teachers, Therapists and Training

I’ve included teachers and their training in a separate section as, in our experience, it is the teachers and the aides who spend the majority of the school day with your child who are key -- are the most important. 
  • What is the training and educational background of the teachers?
  • How long have they been teaching and in what sorts of settings and programs?
  • What kinds of supports and supervision do they receive?
  • What kinds of professional development?
That said, sometimes the best teachers my son has had have not come out of a 'traditional' educational course in school.  Just because someone has an educational degree, or even one in special education, does not necessarily mean they will be a good teacher. Teachers and aides might have majored in psychology or history or other fields. A very young teacher may have the credentials and ‘book knowledge,’ but there’s no replacement for actual experience. On the other hand, an older teacher may not have the same energy and enthusiasm as someone who is starting out.

The Issue of ‘Appropriate’ Placement

Ideally, the school that your child attends will be the one that you have determined to be the most appropriate for her or his educational needs. There are a few potential obstacles, however:
  1. The school may have a restricted number of spots.
  2. Your school district may not agree on the placement.
A school district may disagree about a placement on the grounds that it is not 'appropriate' for your child. In many cases, the reason for the objection may well be, ultimately, economic: The school district may have its own in-district program in mind that, on paper, may have the sort of educational and therapeutic methodologies that you may be seeking for your child, but you may find that it is actually not the right setting for your child, due to the ratio of staff to students, or the physical location and set-up of the classroom, or other factors. Too, who oversees the program that your son will be in and provides training for the aides and teachers? Is there a behaviorist on-staff or does the district have an outside consultant? And how was this consultant chosen?) How are behavioral issues addressed? What is the district’s policy on the use of restraints and seclusion?

Also, a school district may well object to an out-of-district placement at a private center due to the costs: If that placement is approved, the school district is required under the Individuals with Disabilities Act (IDEA) to finance both the tuition and transportation. The latter can be a significant part of the bill, and more so if the private placement is not located near your residence.

If, after having seen the in-district program offered by your school district, you do not deem it appropriate for your child, and if you have found a placement that you think is, you will have to prove to your school district why the placement that you have found is appropriate. This might be a point at which you decide to retain the services of an advocate and a lawyer who specializes in special education law, as you may face a legal battle with your school district over what is ‘appropriate’ for your child. If you and your Child Study Team do not agree about the placement, you may have to go into mediation, with a hearing officer learning about your side and that of the school district. If no decision results from that, you may have to go into due process and face a legal battle and, in some cases, even go to court.

Ideally, this will not happen, everyone will agree that they need to ‘do the right thing’ for your child, and you can focus not on legal issues, but the real heart of the matter -- making sure that your child has the education she or he needs to achieve her or his full potential, to learn and to grow, and to lead a good life.

Wednesday, July 21, 2010

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

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.


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

Tuesday, July 20, 2010

Autism and Biomed Protocols: A Primer on Pseudoscience

Emily Willingham and Kim Wombles

Emily's family has kept their biomed treatment -- or any treatment excepting occupational and behavioral therapies -- to a minimum, primarily because of some inherent skepticism. Their current biomedical interventions are limited to fish oil, probiotics, and some vitamins. 

The Wombles brood has generally taken a similar approach, although they spent four years gluten and dairy free (with Kim worried she was getting ALS every time she ate her own GFCF baking! Cough cough -- dry stuff) before admitting that it made no difference for them whatsoever, except that there were five much happier people once they went off the diet.

Many autism parents investigate biomedical or "biomed" approaches as a way to ameliorate negative manifestations of their child’s autism. These parents can also find themselves overwhelmed by biomedical protocol possibilities. Sorting through these protocols can be a daunting task, which is, of course, one reason for having a Thinking Person’s Guide to Autism.

What follows are analyses of three of the most overpromising biomedical approaches: the Cutler Protocol, the Yasko Protocol, and the Bioset Protocol. We urge readers not to rely solely on what they read here: please review these protocols on your own. We also strongly recommend that you do so in the context of pseudoscience awareness, as detailed at and Pseudoscience signs include:
  • A clear monetary reward
  • Requirements for paying more as you go along
  • A central personality rather than a core science supporting the therapy
  • Use of sciency-sounding but often nonsensical terms
  • A promise to cure a number of unrelated disorders 
Understanding what constitutes pseudoscience versus true science or scientific practice will help you avoid a number of biomed pitfalls.

The Cutler Protocol

The Cutler Protocol, created by research chemist Andy Cutler, is based on the premise that autism is mercury poisoning -- which can be cured by Cutler’s specially timed chelation system. If an individual has any dental amalgams containing mercury, these amalgams will have to be removed before the protocol can be begun. In fact, Cutler has made available a book and a special term (pseudoscience alert!) about “Amalgam Illness.” Cutler claims that he himself “got mercury poisoning” from his fillings, as detailed at his site

Cutler asserts that:
“Many conditions, from Parkinson's disease and autism -- widely recognized as terrible afflictions -- to those like chronic fatigue and fibromyalgia which, though equally serious, are disparaged as 'Yuppie flu,' can be undiagnosed mercury poisoning.” 
This laundry list of disorders is a key sign of a practitioner of pseudoscience. Naturally, his protocol for removing mercury from your body is available in his book, which he describes as a “practical guide to getting well.” Plus, if you add up what he recommends as a timeline for “treatment,” Cutler’s protocol may take years.

We won’t get into Cutler's list of things that “mercury does to you” or the distinction between the chronic and acute effects of mercury poisoning that he describes on his site, because mercury poisoning is not a viable causative agent in the development of autism. For a recent study finding no elevations of mercury in autistic children compared to non-autistic children (a first requirement for it to be causative), please check out this freely available, full-text 2009 paper in Environmental Health Perspectives, a well-respected, peer-reviewed journal:

The Cutler Protocol involves the chelators DMSA and DMPS and alpha lipoic acid (a fatty acid), which will supposedly reach the mercury deposited in the brain. The Protocol requires some testing of hair and/or urine to demonstrate that you have high levels of mercury. Unfortunately, these tests are basically useless as they don’t produce worthwhile information. Hair testing is entirely unreliable and misleading, while urine testing for mercury will give you one of two outcomes, depending on the circumstances:
  1. You will have mercury in your urine because everyone does; we carry it in relatively steady states, and your urine tells the story of your past mercury burden.
  2. You’ll do the test after a chelation protocol, which releases an abundance of heavy metals, including mercury, into circulation for dumping in the urine, so you’ll get elevated levels that aren’t a valid indicator of what you’re experiencing on a daily basis without chelation. 
This kind of provoked testing is common in the biomedical world, and it’s a poor guide for anyone to use in determining a treatment for mercury poisoning. And as long as we’re on the topic, chelation can kill, and the FDA recently warned consumers about another form of chelation involving the chelator OSR#1.

Let’s put it this way: If you’ve got mercury poisoning, you’ll know it. It’s not subtle. You won’t be looking online for a book to order; you’ll be at the doctor or hospital. Symptoms include “impairment of the peripheral vision; disturbances in sensations ('pins and needles' feelings, usually in the hands, feet, and around the mouth); lack of coordination of movements; impairment of speech, hearing, walking; and muscle weakness” (from

If you’re looking for more information on mercury toxicity, see Medscape's eMedicine. Note that the Public Health Service has concluded that dental amalgams are not a threat to public health.

The Yasko Protocol

The Yasko Protocol ( is a costly protocol sold by Amy Yasko, who has determined that something called the "methylation cycle" can have defects that contribute to a whole host of diseases and disorders (pseudoscience alert!), and autism is one of these disorders. If you want to know more, you’ll have to buy her books and DVDs (pseudoscience alert!). To select the appropriate individualized treatment plan, customers can order health tests (some for hundreds of dollars) and then base their ordering of various supplements and RNA products (also hundreds of dollars) on the test results.

We note here that legitimate biotech companies specializing in “RNA products” do so at great expense  and with a great deal of accumulated laboratory expertise to ensure that the products retain their RNA integrity. Yasko has to know this; she once was involved in such a company, called Oligo. RNA is a molecule notorious for its ability to degrade, and the things you have to put it in to keep it from degrading are not things you want to ingest. Yet her website gives the impression that she does not know the first thing about RNA; it is full of nonsensical terms and assertions that don't make scientific sense. What she appears to be doing, given her involvement with Oligo, is willfully and randomly tossing out a lot of sciency-sounding terms because she knows that most of her readers won’t recognize them as nonsense. That’s a pseudoscience red flag.

It’s easy to see how Yasko attracts people, though. Her site includes a few complex-looking graphs that purport to show the “methylation cycle,” which appears to involve in some mysterious way the amino acid methionine and the Krebs cycle, which is one of the steps of harvesting energy from glucose. What she’s really talking about, in a very roundabout manner, appears to be folic acid deficiency. The solution to that is usually to take more folic acid.

Yasko (or “Dr. Amy,” as she warmly calls herself) does offer a nice example of the way practitioners of pseudoscience reel you in and keep you. According to Discover Magazine: “She monitors biomarkers of detoxification in the urine as often as every week or two and tweaks supplements accordingly.” So in case the things she’s sending you aren’t producing any noticeable effect, send in some urine and a whole lot of money -- as often as every week or two -- and she’ll respond by tweaking the supplements you need to purchase. Parent bloggers have noted that they’ve paid thousands of dollars each month to comply with this protocol.

Whenever a “personality” like Dr. Amy is involved in something like this, first consider that a sign of a pseudoscience, and second, do some looking into the personality. A search on PubMed, the scientific literature database, yielded no hits on “methylation cycle” and “Yasko.” A PubMed search also turns up no hits for Amy Yasko; neither do searches of Medline, Health Source: Nursing/Academic Edition, Science & Technology Collection, or Academic Search Premiere. In her list of publications on her website, she provides only one that appeared in a peer-reviewed journal. It’s a great and highly respected journal: Cell. We tracked down the original paper. Yasko is an author on the paper (under the name Amy Arrow), but she is one of three, and she is neither first nor last. In scientific publications, her second-place listing means she didn’t play a significant role in the work, yet on her website, she posts the paper as though it is her own, first-author paper.

We found three ( other ( papers ( with Amy Arrow as an author on PubMed, and she is not first author on any of them. She appears on these papers in her capacity as a functionary with Oligo, the former biotech company with which she was involved. In other words, there are red flags for skepticism all over this one, including efforts to make work that isn’t her first-author or lead-author work appear to be so. That suggests an effort to magnify a limited scientific resume.

The Bioset Protocol

The Bioset Protocol is sometimes recommended by DAN! (Defeat Autism Now!) doctors as a supplementary treatment for food intolerance or allergies. It was originated by Dr. Ellen Cutler -- or Dr. Ellen, as she calls herself, unless she’s calling herself “The Empress of Enzymes." Dr. Ellen promises that her “system” will help the buyer with a laundry list of ills, ranging from herpes to migraines to “childhood illnesses or recurring infections.” This is a pseudoscience alert. These disorders, vague as the list is, have nothing in common -- neither causes nor treatments. "Bioset" also turned up no hits in the scientific literature databases listed above. Cutler offers a list of articles on her website, but not one is a peer-reviewed research publication. 

According to, Bioset, or "Bioenergetic Sensitivity and Enzyme Therapy," is an energy-based allergy elimination method:
"Originated by Dr. Ellen Cutler, this allergy elimination method views the body holistically, similar to the Chinese approach. This view accepts the fact that there is an energy system in the human body that is separate from the cardiovascular system and nervous system. This system, which is comprised of “meridians,” has everything to do with the way the body maintains its overall health." goes on to further explain Bioset:
“Bioset practitioners utilize Meridian Stress Assessment (MSA), for allergy testing, or they may use muscle testing (applied kinesiology), two non-invasive techniques that are both safe and reliable. MSA is computerized device that detects energy variations in the body.”
The concept of meridians has been debunked, and based on Dr. Ellen's own website and our searches in scientific literature databases, there is no evidence to demonstrate a physiological basis for the Bioset protocol, much less effectiveness with respect to Dr. Ellen's laundry list of Bioset-treatable disorders.


As a parent or a spiritual person, you may be thinking that there are more things in Heaven and Earth, Emily and Kim, than are dreamt of in the philosophy espoused here. Indeed, there are. But there are also many clearly established scientific standards, ones that have been demonstrated repeatedly. Examples include the disease-development pathways of many of the disorders that the above practitioners claim to cure.

What has not been demonstrated in any way -- and could not be, even if we moved Heaven and Earth to do so -- is that these peddled protocols, along with affiliated books and pills, have any effect whatsoever. All they ultimately do is take money from the pockets of parents desperate to do something for the children they love.

Please, if you’re considering any of these protocols, or any therapy or intervention -- take a critical look at it, as we have done here, before you reach into your pocket -- or inject or dose your child.

Friday, July 16, 2010

So What's the Fascination With Autism and Sex?

Lindsey Nebeker

A slight uncomfortable laughter was shared among the crowd of mothers sitting in a circle as one mother said quietly, “I’m really trying to avoid bringing up the topic of sex to my son. I hope that day doesn’t come up soon.”

This was during a recent speaking engagement I gave to a parent support group. I arranged for all of us to sit around in a circle since the group was small enough to pull that off. I often find that with circle-style seating, the conversation becomes more open-ended, and I hear more from my audience. And the conversation can get very interesting -- such as when it turns into a conversation about autism and sex.

I was tempted to chuckle at the level of discomfort these mothers had in linking the words “autism” and “sex,” but kept to myself and gave a quiet smile. I understand why they would feel that way. Parents often find it awkward to have the “sex talk” with their kids. For a child with a developmental disability, it can be even more awkward for parents to initiate the “sex talk.” Whenever I ask parents about this, the number one reason they give is that they are unable to tell the level of ability their child or teen will have in grasping such topics. And with such a spectrum of cognitive levels, who can blame these parents for wondering? There is no single formula to educate an individual with autism on sexual topics, and the teaching approaches will vary from person to person.

What we can’t deny, however, is that individuals with autism and developmental disabilities go through puberty, experience hormonal changes, become curious about their own bodies, and are sexual creatures by nature -- just like anyone else. Some people are asexual, and some people never desire to seek a romantic companion. However, just because an individual has autism does not mean they lack hormones and the natural development of a sex drive.

In the autism community, all this is well known. The parents and professionals who work with adolescents can tell you about it, and the adolescents and adults with autism can share that as well. Even though my brother, James, is non-verbal and has not established the skills of romantic companionship, my parents and I know he is aware of his hormonal shifts and his natural development of sex drive. Then, there are other autistic individuals (and plenty of them) who do have a desire to seek a partnership, get into relationships, and even marry and raise children of their own. When you attend an autism conference, you will find several books, DVDs, and other media materials on the subject of autism and sexuality, distributed by specialty publishing companies such as Future Horizons, Autism Asperger Publishing Company, and Jessica Kingsley Publishers.

To the general population and mainstream media, autism plus sexuality is an unfamiliar phenomenon. But as the topic is gradually introduced to the limelight, people are becoming more aware. One really good example was when the movie Mozart and the Whale (starring Josh Hartnett) came out in 2005, loosely based on the love story of Jerry and Mary Newport. Shortly after, their book Mozart and the Whale: An Asperger’s Love Story was published. This was the first major story on autism and relationships I can recall that really stood out in the mainstream media. The movie and the book had come out right around the time Dave and I started dating, so they definitely served as inspirations to me. I wished for more stories like that to reach out to the general audience.

That is why Dave and I were ecstatic to share our story when we were approached a few years later by Glamour magazine. I hadn’t really paid much attention to the content in women's interest magazines in the past, but we both knew it was a major publication and were aware of how big an opportunity this was. It was an opportunity to tell the world that there are individuals with autism who do find love, who do have sex lives, and experience the ups and downs of a relationship -- just like any other couple. But as much as I was eager to share this with the world, I was also nervous. I knew not all the feedback would be positive, and I understood why. I try hard to tell people that although not everyone will find love, the possibility and the concept of autism and sexuality exists, and is very real.

Since then, other stories have broken into the mainstream, such as the movie Adam (a fictional portrayal of a young man with Asperger’s and a woman who is neurotypical), and The Seattle Times article on the real-life love story of Emilia Murry Ramey and Jody John Ramey (who have also co-written a book called Autistics’ Guide to Dating). There have also been stories about the complications a person can face in seeking love and establishing a sex life, such as the story Paul DeSavino and his family shared with ABC News’ Nightline.

In addition, countless individuals and other members of the autism community have posted blogs, uploaded YouTube videos, and written articles about the concept of autism and sexuality, in efforts to continue reaching awareness to the general audience.

The fascination and curiosity has no limits when it comes to autism and sexuality, leading to questions regarding what goes on behind closed doors. Sometimes, it leads to taunting. A woman from Queens, New York posted an entry on her blog about flipping through her copy of the March 2009 issue of Glamour on her bus ride back home, and came across the article about me and my boyfriend. In reaction, she wrote: “Autistics having sex?!?!? I can’t believe it!! I’d pay to see that -- a couple of mental retards f***ing!!”

Sad to see? Yes, it’s always sad to see ignorance. But I’ve learned that is part of the price one pays for exposure, and the best thing you can do in negative criticism is to ignore it and move on.

Besides ... I think this woman from Queens would be quite disappointed if she ever did have the chance to witness two autistic people having sex. It’s pretty much like two non-autistic people having sex.


A version of this essay was published on Naked Brain Ink,