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Society for Management of Autism Related issues in Training, Education and Resources
It is a FAMILY SUPPORT ORGANIZATION which is run by Parents and Family members for Parents and Family members EXCLUSIVELY FOR AUTISM from CHILDHOOD TO OLD AGE in a Seamless Journey to Interdependent
What does Helpful vs. Harmful Therapy look like?
What does Helpful vs. Harmful Therapy Look like? Posted November 7, 2014 by unstrangemind Uncategorized. I mentioned that sorts of practices that are not advisable and what to look for to see if the therapy your kids is getting is helpful or harmful. I was thrilled to hear from lots of parents whose children are getting therapy that builds them up in many ways. I am so happy that there are professionals out there who understands autism and work to help kids grow up to be their happiest, most productive Autistic selves instead of training them to pretend to be someone they aren’t.
It is not my intention to publically shame anyone by using publically available videos. I’d like to start with a four-minute video titled “Isabella 22 – Knock-down drag out battle for Severely Autistic Child to attempt Speech”. I watched this video several times so I could analyze and write about it and it was very hard for me, too. There are reasons why I am only sharing one examples of harmful therapy and one of those reasons is that I just can’t handle watching very much of it myself.
And, again, I want to emphasize that I am not accusing Isabella’s parents of anything. I am 100% sure that they are loving parents who care deeply about their child and her future and who believe that they are helping her to have a better life with the therapy they are providing for her. But I cringe in pain when I see what the poor girl is being put through in the name of helping her. I assume her parents put this video online to help others know more therapy. Please take my comments in that light as well.
Let me start by talking about my broad impressions of this therapy session. Just the title of this video is a first clue about the attitude the adults in her life have towards Isabella’s therapy. They call it a “knock-down drag out battle.” Now, I’ll be the first to admit that parenting, or being parented, can often be a battle of the wills. I was pretty difficult kid and I’ll admit that. But this video is nearly four minutes of Isabella crying with frustration and confusion while her therapist repeats “ma ma ma!” at her, over and over, trying to get Isabella to say “mama” and get gummy bears as a reward.
The therapist showed her candy, then withheld it from her while making lots of confusing sounds at her and leaving Isabella to try to figure out what the heck was going on, what was expected of her, and why she could see but not get the candy. If I dangled candy in front of a child but refused to give it to her and made her cry with frustration, you would call be a bully and say I was taunting the child and that I should stop making the little girl cry and just give her the candy, right? But because Isabella is Autistic, some professionals believe it’s not cruel: it’s therapy.
What is happening in this therapy session is closer to the way animals are trained to perform tricks. When I was a pre-teen, I thought my standard poodle to shake paws. He never understood what a handshake meant to me – all he ever knew was that it made me very happy if I put out my hand and he put his paw in it. And he lied to make me happy, so he learned to shake paws very quickly and would do it every time I offered my hand. And I never used food to teach him, just affection. And I never made him whine with confusion or behave in a distressed manner.
Now, I don’t mean to compare an Autistic child to a dog. That would be demeaning. But look at his speech therapy and tell me that Isabella is not being trained like a dog to mimic a behavior she doesn’t understand any more than my dog understood a handshake. In fact, Isabella is being treated far worse that most dogs are treated, because she is in real distress as she tries to get the candy and has no idea what is going on or why she keeps getting teased with candy. This is exactly the sort of trial-and-error behavior shaping you see when people train monkeys or bears to perform in circuses. It assumes that the subject being trained is incapable of understanding anything and must be bullied, badgered, and tempted until it randomly preforms the act (or makes the sound) and then operant conditioning is applied to strengthen the desired response. This is not speech therapy, it is monkey training and, my apologies to Isabella’s parents, but it is painful to watch. This is not a therapy that respects Isabella’s personhood or addresses her needs.
Not only is this treatment cruel, it is setting the stage for potential future violence. This kind of therapy creates massive amounts of frustration in people who have limited ability to express their needs and wants and who are often not allowed agency or autonomy. Right now, Isabella is wringing her hands and pulling at her clothing. How much of this can she take before she starts pushing the therapist away? When pushing doesn’t make the frustration stop, how long will it take before she resorts to hitting or biting? I was a hitter and a biter, and just watching Isabella’s frustration makes me want to forget everything I’ve learned that keeps me from hitting people now.
This is really important. People worry a lot about their “violent” Autistic children as they get bigger and stronger and harder to control. But far too often, the “violence” is stirred up by years of very frustrating therapy just like the session you are seeing in this video of Isabella. There’s only so long that a person can take being pushed into sobbing meltdowns or frustration before they are willing to do whatever it takes to get the torment to stop. It is not only heart-breakingly cruel to treat a child this way, It is grossly irresponsible. Therapy like this creates problems. The best it will produce is a child trained to do things that make no sense in order to avoid distress and get rewards. The worst it will produce is a child that bites, kicks hits . . . and gets bigger and stronger along with becoming less and less controllable. This therapy is not designed to raise a child who feels safe and comfortable with who they are, who feels safe to express their individually, who is mentored in growing and developing into the best person they can be, expressing their true nature in ways others can come to connect with. The goal of being “indistinguishable with their peers” is a goal meant to make other people feel comfortable and happy. THE GOAL OF ANY THERAPY FOR AN AUTISTIC CHILD SHOULD BE TO HELP THE CHILD FEEL MORE COMFORTABLE AND HAPPY. THERAPY IS NOT SUPPOSED TO BE ABOUT PREFORMING FOR OTHERS – IT IS SUPPOSED TO HELP A PERSON GROW AND EXPRESS THEMSELVES IN THE TRUEST, HEALTHIEST WAY POSSIBLE.
Do you think i am having fun?
OFTEN THE BEHAVIOR of children with autism "makes little sense" to us, and even appears irrational. However, all behavior is "rational" (makes sense) if we can see the world from the eyes of the child. When you can see the world form how the child experiences it, the behavior usually "makes sense!". I learned this lesson when i was an intern. I was working with a young man who was brought in for running down the street screaming and stripping his clothes off. At first thought, this behavior seemed trully irrational; no apparent reason for its occurrence, no obvious adaptive function that it served. However, after gaining the person's trust, he relived the experienced for me; telling me that his clothes were on fire and he was screaming and trying to get the burning clothes off from him. He was, in his words, "freaking out" because his clothes were burning. So, what initially looked like a very irrational behavior now made more sense. Although he was hallucinating and delusion he was responding to an experience that was very real for him. From that moment on, i realized that we must first see the world from how the
person is experiencing it to truly understand the behavior and eventually help the person.
Once we understand what function the behavior serves and what the child is trying to communicate with the behavior, it makes sense. We need to "make sense" of the behavior, it makes sense. We need to "make sense" of the behavior, identify what fucntion the behavior serves, in order to truly help the child. Once it does "make sense" then it is a lot easier to support the child and teach more appropriate alternative responses. We must listen, observe, and investigate closely in order to understand and "make sense"of the behavior. We must be able to see the world the way the child does to truly understand his behavior. We have to know the child's sensitivities, vulnerabilities, and current skill level to grasp how he is experiencing the world. We often make the mistake of jumping in and trying to "change" the behavior, before understanding it. Not only do we often guess wrong, but we often invalidate the child by trying to change him rather than teach more appropriate ways of meeting his needs. So when we first see a behavior that seems irrational to us, take your time to listen, observe, and understand it before trying to change it.
DSM - 5 DIAGNOSTIC CRITERIA
Autism Speaks is pleased to provide the full-text of the diagnostic criteria for autism spectrum disorder (ASD) and the related diagnosis of social communication disorder (SCD), as they appear in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). As of May 2013, psychologists and psychiatrists will be using these criteria when evaluating individuals for these developmental disorders. For further context, please see our full DSM-5 coverage here Social (Pragmatic) Communication Disorder 315.39 (F80.89)
A. Persistent difficulties in the social use of verbal and nonverbal communication as manifested by all of the following:
1. Deficits in using communication for social purposes, such as greeting and sharing information, in a manner that is appropriate for the social context.
2. Impairment of the ability to change communication to match context or the needs of the listener, such as speaking differently in a classroom than on the playground
talking differently to a child than to an adult, and avoiding use of overly formal language.
3. Difficulties following rules for conversation and storytelling, such as taking turns in conversation, rephrasing when misunderstood, and knowing how to use verbal
and nonverbal signals to regulate interaction.
4. Difficulties understanding what is not explicitly stated (e.g. making inferences) and non literal or ambiguous meanings of language (e.g. idioms, humor, metaphors,
multiple meanings that depend on the context for interpretation).
B. The deficits result in functional limitations in effective communication, social participation, social relationships, academic achievement, or occupational
performance, individually or in combination.
C. The onset of the symptoms is in the early developmental period (but deficits may not become fully manifest until social communication demands exceed limited
D. The symptoms are not attributable to another medical or neurological condition or to low abilities in the domains or word structure and grammar, and are not better
explained by autism spectrum disorder, intellectual disability (intellectual developmental disorder), global developmental delay, or another mental disorder.
A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive
1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
3. Deficits in developing, maintaining and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
Specify current severity: Severity is based on social communication impairments and restricted repetitive patterns of behavior (see Table 2).
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g. simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g. extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g. strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).
4. Hyper- or hypo activity to sensory input or unusual interests in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement)
Why do children fidget: And what can we do about it
WHY CHILDREN FIDGET: And what we can do about it A perfect stranger pours her heart out to me over the phone. She complains that her six-year-old son is unable to sit still in the classroom. The school wants to test him for ADHD (attention deficit and hyperactivity disorder). This sounds familiar, I think to myself. As a pediatric occupational therapist, I’ve noticed that this is a fairly common problem today.
The mother goes on to explain how her son comes home every day with a yellow smiley face. The rest of his class goes home with green smiley faces for good behavior. Every day this child is reminded that his behavior is unacceptable, simply because he can’t sit still for long periods of time. The mother starts crying. “He is starting to say things like, ‘I hate myself’ and ‘I’m no good at anything.’” This young boy’s self-esteem is plummeting all because he needs to move more often. Over the past decade, more and more children are being coded as having attention issues and possibly ADHD. A local elementary teacher tells me that at least eight of her twenty-two students have trouble paying attention on a good day. At the same time, children are expected to sit for longer periods of time. In fact, even kindergarteners are being asked to sit for thirty minutes during circle time at some schools.
The problem: children are constantly in an upright position these days. It is rare to find children rolling down hills, climbing trees, and spinning in circles just for fun. Merry-go-rounds and teeter-totters are a thing of the past. Recess times have shortened due to increasing educational demands, and children rarely play outdoors due to parental fears, liability issues, and the hectic schedules of modern-day society. Lets face it: Children are not nearly moving enough, and it is really starting to become a problem. I recently observed a fifth grade classroom as a favor to a teacher. I quietly went in and took a seat towards the back of the classroom. The teacher was reading a book to the children and it was towards the end of the day. I’ve never seen anything like it. Kids were tilting back their chairs back at extreme angles, others were rocking their bodies back and forth, a few were chewing on the ends of their pencils, and one child was hitting a water bottle against her forehead in a rhythmic pattern. This was not a special needs classroom, but a typical classroom at a popular art-integrated charter school. My first thought was that the children might have been fidgeting because it was the end of the day and they were simply tired. Even though this may have been part of the problem, there was certainly another underlying reason. We quickly learned after further testing, that most of the children in the classroom had poor core strength and balance. In fact, we tested a few other classrooms and found that when compared to children from the early 1980s, only one out of twelve children had normal strength and balance. Only one! Oh my goodness, I thought to myself. These children need to move!
Ironically, many children are walking around with an underdeveloped vestibular (balance) system today--due to restricted movement. In order to develop a strong balance system, children need to move their body in all directions, for hours at a time. Just like with exercising, they need to do this more than just once-a-week in order to reap the benefits. Therefore, having soccer practice once or twice a week is likely not enough movement for the child to develop a strong sensory system. Children are going to class with bodies that are less prepared to learn than ever before. With sensory systems not quite working right, they are asked to sit and pay attention. Children naturally start fidgeting in order to get the movement their body so desperately needs and is not getting enough of to “turn their brain on.” What happens when the children start fidgeting? We ask them to sit still and pay attention; therefore, their brain goes back to “sleep.” Fidgeting is a real problem. It is a strong indicator that children are not getting enough movement throughout the day.
We need to fix the underlying issue. Recess times need to be extended and kids should be playing outside as soon as they get home from school. Twenty minutes of movement a day is not enough! They need hours of play outdoors in order to establish a healthy sensory system and to support higher-level attention and learning in the classroom. In order for children to learn, they need to be able to pay attention. In order to pay attention, we need to let them move.