Regardless of which candidate holds greater autism awareness, both call for increased funding (including Obama’s insurance reform measures). In Pennsylvania, a newly-passed bill has been heralded as a triumph for compelling health insurance companies to fund up to $36,000 per year in specified services for families of children with autism under age twenty-one. More pointedly, and as directed by the bill, insurance will now be required to cover Applied Behavior Analysis, promoted as most efficacious among treatment options. ABA is defined in the bill as “the design, implementation and evaluation of environmental modifications, using behavioral stimuli and consequences, to produce significant improvement in human behavior or to prevent the loss of attained skill or function…” Call me a killjoy, but instead of a victory I see the bill as a defeat. It is, in essence, not only an endorsement of one therapy to the exclusion of others (covered by insurers, that is), it green lights the additional, exhaustive expenditure of funds that no parent is going to decline if it’s there for the taking. But there is a greater issue at heart.

ABA requires that professionals—degreed, specially trained and certified in ABA therapy techniques—engage autistic children in intensive treatment activities. Oftentimes, these activities are in the guise of play and usually take form as “drills” in which the ABA professional repetitively conditions the child to comply with various modes of conduct, activities, and desired responses. In one example, the ABA professional, seated across from the child, holds up a flash card of a cow and prompts the child to identify “cow” until he does so correctly and often enough to be considered to have mastered the skill. Negative responses, tripped by “behavioral triggers,” are identified and modified in the environment or discouraged in favor of positive reinforcement. The positive response of the successful child may be rewarded with verbal praise, a food item, favored activity, or toy.

Sounds great, right? The only problem is that’s not how most autistics think, learn, process and retain information, let alone possess the capability to transfer what’s learned in ways that are functional and appropriate. And if it sounds similar to Pavlov’s dogs you’re not far off base, though what thrills parents is behavioral compliance—their child has been conditioned to suppress his autistic traits long enough to be less of a “behavior problem” and outwardly present as “normal.” But compliance for the sake of obedience does not equal success. It means someone has been conditioned to reply by rote. Further, we’ve portrayed autism as so complex and complicated, we’ve disempowered parents from parenting. We’ve supplanted their ability to develop a relationship with their own children by dictating that a professional, previously a stranger to the child, is solely qualified (and required to be so) to interact with their child for hours on end. This creates system dependency instead of imparting skills, techniques and strategies to parents that empower them to parent effectively, capably, and competently.

If you want me to learn “cow,” help me learn it naturally in the context of a mutually respectful, reciprocal relationship that makes it interesting, pleasurable, and intellectually stimulating to learn. If you want me to learn “cow,” show me a cow. Take me to an open pasture and introduce me to cow; or at the least, let’s learn about cow together, parent to child, by reading age-appropriate material, watching video of cows, and creating recipes using the food produced by cows. This is the type of quality interaction that those of us on the autism spectrum record for safekeeping and replay years later as pleasing recollections. By contrast, there are precious few, if any, adult self-advocates who joyfully espouse the childhood rigors of systematic programming.

As Senator McCain advises, there are myriad options for supporting persons on the autism spectrum to integrate with their bodies, and to tame and refine their reactions to the environment; some are respectful, some are not, and some are simply abuse disguised as treatment. To parents, use as a measuring tool the following queries: Does the treatment presume that my child is intelligent; does it help me further my understanding of parenting my child without system dependency; and is my child happy, interested and making progress? And to our presidential candidates, a caution—be careful of what you wish for when planning for the future of our nation’s autistic citizens, and above all be clear to distinguish the “cow” from the manure.

© 2008, William Stillman

It would be irresponsible to say that certain design techniques will benefit everyone. Children with special needs, disabilities and behavioral disorders are as unique as fingerprints. Each child requires a different type of support. But there are several general principles that apply to almost all people, and particularly those with special needs.

A child’s surroundings are often given far too little consideration. Parents typically focus on the obvious. With a boy, for example, the ‘typical boy” subject matter is introduced into their bedrooms and play rooms: primary colors, trucks, race cars and sports. Without realizing it, we can be exacerbating their already heightened sensitivity to color, light and pattern. The materials we utilize are equally significant. The basic materials we use often emit undetectable fumes, gases and chemicals. These can be unhealthy, if not harmful. Unfortunately, sometimes we are unaware of the damage until it is too late.

To provide the healthiest environment for your child, try giving special consideration for the following suggestions:

1) Paints and finishes release low level toxic emissions into the air for years after application. The source of these toxins is a variety of VOC’s (Volatile Organic Compounds) which, until recently, were essential to the performance of the paint. Fortunately, this is no longer the case. There are several brands of paint that have significantly reduced VOC’s, or are 100% free of the. Several maintain excellent coverage and fast drying time and are available in a variety of colors and shades. We recommend Benjamin Moore’s Aura Guard, Natura and FreshAire Choice paints for example, their scent is minimal, with a natural citrus origin. They can be found at your local Benjamin Moore store of Home Depot location.

2) Color has a great deal of impact on emotional state. If you take a moment to consider how the color and lighting of a room makes you feel, you may realize that you have an immediate, and in some cases, visceral response. Your child will most likely have an immediate and more significant reaction, and if the colors provide the wrong kind of stimulation, the emotion response may lead to acting out verbally or physically, or completely withdrawing. Soft blues and greens are calming colors. Yellows and pinks are mildly stimulating. Shapes and patterns can be used to draw focus and increase concentration. There is no color or pattern that is ideal for any special needs child. Consider your child’s individual needs, and if you can, consult a specialist.

3) Bringing elements of nature indoors. Plants, whether real or artificial (let’s face it, we don’t all have a “green” thumb) make a big difference. Large or small, greenery, or some element of nature in general, always makes a positive difference. Try a cornstalk dracaena, a great “green” house plant. They are physically appealing, robust, and are great for providing oxygen while feeding on the carbon dioxide in the air. This benefits both children and adults.

4) Spend time outdoors in the sunshine. Go where it’s green. Sunlight, greenery and fresh air have a natural tendency to raise our spirits. Remember that special needs children have a heightened sensitivity to sensory stimuli. What we feel as adults, they feel much more intensely. Don’t forget the sunscreen!

5) Tactile elements can have a profound affect on a child’s sense of connection to his or her environment. The experience of feeling the roughness of tree bark, getting wet in the rain, smelling flowers, or touching different types of rocks or sand provides interactivity and stimulation. Since children with special needs are often very sensitive to texture, experimenting with these in a natural environment can help us find the objects that will be most effective in their home environment.

6) Sound and music can be key factors in creating the optimal environment. Soundscapes can be very effective at soothing an agitated child, or stimulating a withdrawn one. Music can have strong positive influence on mind and spirit. Experiment, see what your child responds to, and incorporate it into their environment appropriately.

By acquiring a better understanding of these principles, parents can create and environment for their child that is healthy, comfortable, and emotionally supportive. The improved surroundings will help the child be happier, more well adjusted, and better able to connect with parents, family members, and friends.

With some basic design knowledge and an understanding of your child’s specific needs, you can make a profound difference. Remember, always design With a Brush with Love!

While it’s proven time and again that parents are NOT responsible for their child’s autism, many parents have this nagging little feeling somewhere deep inside that they are to blame.  If they don’t feel they caused the autism, they typically feel that their child would be doing better and progressing faster if they just put more effort into it.

One can only equate it to preparing for the Bar exam.  No matter how much you study, you could always do a little more.  Simple every day activities result in great emotional stress for an autism spectrum parent.  It’s not long before the “guilt factor” spills over into every area of life.

HOW THE GUILT FACTOR IMPEDES YOUR LIFE

Your autism spectrum child is interested in animals.  In a completely “non-typical” method of conversation, your child names all the farm animals and wants you to repeat it back to him.  Again and again and again!  You do so and the guilt factor sets in.  “This is so inappropriate” you think to yourself.  “I should take this opportunity to teach my child how to converse appropriately.”  But you know that if you don’t comply to your child’s wishes he’ll have a meltdown, and you’re busying making dinner, your two year old is crying because she’s hungry and your eldest needs help with her homework questions.  Disheartened, you continue the banter with your child, blaming yourself for not doing a better job.

The telephone rings and it’s your friend.  You’re thoroughly enjoying the conversation but just then you notice your child repeatedly spinning the wheels on a toy truck while making a strange noise.  “I shouldn’t be talking to my friend.  I should be teaching my child how to play with that toy” you silently berate yourself.  Then your child begins to run up and down the hall and you silently reprimand yourself.  “I must get off this phone.  Time is precious and I should be engaging my child”.  Feeling discouraged, you’re torn between hanging up on your friend and redirecting your child.

When picking up your child from OT, you chat politely to the other parents.  One mother mentions that her daughter has extra speech therapy.  Another one talks about the social skills group she enrolled her son in.  Another one declares that she just signed her child up for Karate with an aide to help him.  Despair and guilt wash over you.  “These parents do so much” you think to yourself.  “How do they do it?  Where do they find the time?  I should do more.  Perhaps I should have signed my child up for Karate instead of swimming.”  As the guilt factor sets in, you shamefully accuse yourself of being a bad parent.

It’s been a long day and you’re exhausted.  You’ve been to work, dealt with tantrums, spoken to three teachers, rearranged your child’s therapy schedule, cooked dinner, bathed your children, cleaned up and prompted your child through simple activities.  As you plop on the couch to watch some TV, that feeling of guilt washes over you.  “I shouldn’t be relaxing.” You say to yourself.  “I should be re-writing my child’s program.  I should be researching new methods of treatment.  I should be going over my child’s IEP.”  But your brain can’t take one more thought about autism and you guiltily sink into the couch and think “Tomorrow, I’ll tackle it tomorrow”.

KEEP IT IN PERSPECTIVE

Paradoxically, parents of autism spectrum kids are one of the most proactive groups that exist.  While they commonly feel they’re not doing enough, these parents should be honored and commended.    They’re able to cope with more in a day, a month and a year than most can conceive of coping with in a lifetime.  Their resilience, creativity and persistence help their children progress and reach potential that nobody thought possible.  The great strides that have been made in the autism community are largely due to parent driven establishment.  The next time the guilt factor sets in, keep it in perspective and remember the following points.

1. You’re not alone

You are a great parent.  You are your child’s best advocate.  You have a lot on your plate.  Your days are often filled with a great deal of mental anguish and emotional stress.  You help your child through small activities that most parents don’t even think about.  You fight for services for your child.  You fight for the best class placement.  It can be tiring.  It can be exhausting.  As you look around, you often feel that other parents are doing a better job.  Realize they think the same of you.  The guilt factor impedes their life too.  Parents of autism spectrum kids have a common bond.  They understand, they empathize and they spur each other on.  If you declare “My 6 year old dressed independently today” they rejoice with you, because they too appreciate every milestone, large or small.

2. Organizations

Parents of children with autism have been the catalyst of some of the largest and most successful establishments for helping those on the spectrum.  This is on a worldwide basis.  A large number of autism schools have been driven by parents.  Special education distributors and manufacturers often have parents at the helm.  Researchers and educators are often parents.  Increased services in schools and communities are the result of parent driven efforts.  Non profit establishments have teams of dedicated parents who are committed to helping those on the spectrum.   You might not be part of one of these establishments but you have made a difference.   It’s the combined unity of parents and a strong voice when advocating for your child that calls these organizations into being.

3. Relationships

When your child is born you are instantly a parent.  The role of a parent is to love, educate and support your child.  You provide your child with values, teach right from wrong, build their self esteem and guide them to become happy, independent adults.   When you have a child with autism, you become a teacher.  The role of a teacher is to educate a child.  Whether it’s a small task or a large task, teachers use every opportunity to educate a child.  As a parent of a child on the spectrum it’s difficult to maintain a balance.  While you want your child to learn as much as possible, you also simply want to be a parent.  The next time the guilt factor sets in because you’re not teaching your child at every moment, release it immediately.  Your child loves it when you’re just being a Mom or just being a Dad.  While it’s perfectly fine to teach some of the time, a healthy balance leads to a healthy relationship between you and your child.  Enjoy those moments with your child.  Even if they aren’t typical interactions, they’re certainly fun!

4. Acceptance

On asking adults with autism “What’s the single piece of advice you would give to parents of autism spectrum kids?” the answer is almost always a unanimous “Unconditional love and acceptance.”  For just a moment, view your child’s perspective.  Almost every action gets corrected.  Almost every behavior is modified.  Method of play is considered inappropriate.  Self stimulatory behavior is often halted.  Your child is constantly being told to think, talk and act in a way that is foreign to his inner nature.  It can’t be easy to keep one’s self esteem intact.  I certainly advocate teaching as many skills as possible to help your child function in life.  However, it’s essential your child knows you believe he is perfect just the way he is.  It’s simply unfortunate that others might have difficulty understanding him.  Your child should intrinsically know the reason he’s learning new skills and altering his behavior is not because you want to change him, but because it will help others relate to him, grant him acceptance and allow him to lead a more productive life.  The next time you feel guilty about not correcting your child’s behavior or mannerisms, remember that delighting in your child’s unique qualities is just as important as teaching appropriate actions.

The next time the Guilt Factor impedes your life, simply acknowledge its presence.   You don’t feel guilty because you’re a bad parent.  You feel guilty because you’re an outstanding parent.  You’re a parent who loves your child dearly.  You’re a parent who is so committed to helping your child learn that you feel bad taking time for yourself.  Your hard work, dedication, energy and eternal giving are unbeknown to most and recognized by few.   I acknowledge you and say “Well done!  I know how committed you are and what it takes.  You are an exceptional parent and I recognize your greatness!

What drives this kind of reaction? Two things, in my opinion. First, there is still a very prevalent medical model in how autism is defined. It is listed in the Diagnostic and Statistical Manual of Mental Disorders, which immediately sets the negative precedent that autism is a mental illness (it’s not) and requires intensive treatment. This is further perpetuated by some clinicians who are not sensitive or compassionate when making a diagnosis, or who are unaware of quality resources to direct parents to. (Inconceivably, there are still doctors who suggest that autism is attributable to parental blame, or recommend parents institutionalize their children.)

Second, the media often stigmatizes autism as a tragic affliction to be feared or pitied. In addition to Asperger’s Syndrome, I have a same-sex orientation. I would no sooner expect an interviewer to define my sexuality using a derogatory slur because it would be an outrageous violation, yet it is presently acceptable for the same interviewer to describe me as “suffering from a severe disorder.” Until the Rosa Parks of autism emerges, this will persist. At the least, much media representation of autism reinforces antiquated stereotypes, and that is a disservice.

From the outset, many parents are portrayed a grim projection for their child’s future. They are led to believe their children with autism are incapable, unaware and of substandard intellect, a lost cause that will always function at the level of a four-year-old, even as an adult. This often results in parenting approaches of two extremes: tireless endeavors to eradicate autism through high-cost, intensive, one-on-one (adult to child) behavior therapy for countless hours on end (that, in some cases, may involve a regimen of physical restraints and anti-psychotic medications). Or it results in the “back room kids.”

The proper response to autism is to re-envision it as a neurological disconnect relative to those with Cerebral Palsy, Tourette’s, Hodgkin’s, Parkinson’s, Lou Gehrig’s, recovering from stroke, or any other such experience that compromises brain-body connections and impairs movement or articulation of speech. Even though the physical is unreliable or not of good service, the cerebral is intact, thought processes operate at capacity, and mental capability is completely competent (it just doesn’t measure that way through I.Q. scores). There is emerging scientific research to support the re-evaluation of autistics using non-verbal intelligence testing to reveal their true intellect commensurate with, or beyond, their chronological age.

Some parents who don’t foresee true intellect as a possibility for their children, due to the preceding conclusions, have bought into the myth of autism—that is, autism equals intellectual inferiority or mental retardation. In addition to shame and guilt, despair, denial and hopelessness may prevail. The thinking may become that of day-to-day maintenance and minimal standards of caregiving. Hence, the back room kids.

I see them, watching me from their baby-gated existence of the screened-in porch or the distant bedroom at the rear of the house. Many of them don’t have much meaningful connection with their families. They have free-reign to do as they please because parents are afraid to apply fair discipline or have been told not to because their child won’t understand. Some back room kids are overweight, have poor diets and are provided age-inappropriate books, toys and videos. Some are still on bottles and in Pampers at age five…six…nine. This is unacceptable.

When I meet them I think: “I see you there, little one. You with your grubby bag of orange cheese curls and the Veggie Tales video repetitively looping. You with your bright, glistening, welcoming eyes. You with your hunger for knowledge and information beyond the back room, or even your back yard. I see how very smart you are inside. I see you.”

Refusing the myth of autism, building relationships founded upon a belief in competence, and challenging autistic intellect is what will create a cultural shift for the growing numbers of very young children diagnosed with autism each day. It will also yield hope for the adults with autism who have endured in silence, only offered Little Golden Books, Strawberry Shortcake puzzles, and Lady and the Tramp videos.

The regrettable irony is that we have a long and unfortunate history of back room kids—“retarded defectives” as they were once known—only, in another era, the back room was confinement to the basement or an attic. Shame and guilt were very much a motivation for those parents then as much as it is for some parents now.
Isn’t it curious that what’s called for is simply acquiescing our own agendas and compelling ourselves to be more sensitive—to listen fruitfully with our ears as well as our eyes? We’re not only talking about presuming intellect, we’re talking about demonstrating a renewed respect.

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Prior to 1964, one of the prevailing and prominent medical understandings of the cause of autism had been articulated by Bruno Bettelheim. Autism was seen as having psychological rather than physiological origins.  Bettelheim laid the onus on “refrigerator mothers,” cold and intellectual mothers who had rejected their children.  His solution was psychotherapy for the mother and play therapy for the children so that they could rid themselves through aggression of the rejection by their mother.

This psychological understanding of autism was rejected by Bernard Rimland, Ph.D., a psychologist for the U.S. Navy, when he and his wife, Gloria, had Mark, their second child.  Their first child, Helen, was neuro-typical, but Mark was autistic.  Dr. Rimland reasoned that his wife had not suddenly changed and become “cold and intellectual, a refrigerator mother.”  There must be another cause.  Thus began his vast reading and research and practical observation which led him to write INFANTILE AUTISM, published in 1964, and he began his life long search for answers.  He was led to found and direct the Autism Research Institute (see www.autism.com/ari) and initiate the DAN (Defeat Autism Now) conferences which continue to bring together the best medical minds to share the latest biomedical research and the practical, experiential wisdom of parents.  His Autism Research Review International, a quarterly publication, reviews biomedical and educational research in the field of autism and related disorders.

In 2003 Dr. Rimland edited with Dr. Stephen Edelson (the new director of ARI) TREATING AUTISM: Parent Stories of Hope and Success, one of the most important, readable, and useful books I know about.  In addition to 30 chapters written by parents of autistic children, many of whom are medical doctors, telling of their success in treating their children, the book also contains a chart that shows the results of over 26,000 responses to a survey on the treatment effectiveness of Drugs, Supplements, Diets, & Misc. Therapies or Conditions.  What an incredible source of information for parents and doctors!  Write ARI to obtain a copy of the survey and the results or to order a copy of the book.  One example of the data is the survey: “Bar graphs depicting the rating of 49 drugs and 8 nutrients by thousands of parents of autistic children note that Ritalin, the most frequently used drug, helped only 29% of the children, while making 44% worse (based on 3082 parent surveys).  Compare that with the ratings of nutrient therapies.

In 1978, I was introduced to a small personal account of the mystery of autism (this was the first time I had ever heard or seen the word “autism.”) that described a unique approach to reaching a child with autism.  We were living at the time in the tiny fishing village of Bucks Harbor, Maine, and our eldest daughter brought home a copy of SON RISE by Barry Neil Kaufman (1976).  A classmate had given the book to Laura who simply said to me, “Daddy, I think you would like to read this book.”  Such a simple, synchronistic beginning to my thirty year journey into the fascinating world of autistic savant artists.  The Kaufmans’ contribution and approach was to seek to enter the world of the child with autism, to learn how and what his son, Raun, was trying to communicate, rather than demanding and forcing his son to come into the parents’ world.  In 1994 the publication of SON RISE, THE MIRACLE CONTINUES, chronicles the brilliant career of this “hopelessly autistic son.  Chapter 1, “Birth of a Miracle” (pages 3-26) is an excellent summary of the typical response of the “experts” of the time that autism “is a life long disability. No cure, No complete reversal.”  The common advice given the Kaufmans and countless other parents was to “put Raun away, forget him, and focus their attention on their two normal children.” (page 25),  The book documents the development of the Option Institute and the Son Rise approach to treatment. See www.son-rise.org  or email sonrise@option.org.  I WANT WANT MY LITTLE BOY BACK is a stunning VHS documentary produced by the BBC that also presents this method of treatment.

My own journey of understanding continued when a friend gave me a copy of Karyn Seroussi’s UNRAVELING THE MYSTERY OF AUTISM AND PERVASIVE DEVELOPMENTAL DISORDER: A Mother’s Story of Research & Recovery. It is one of the most significant books to enter my life.  It reads like a detective story.  I was given a copy, and I read the entire book in two days.  It brought together some of the people and information that I had gained in two conferences in 1981 & 1982 on “Behavior  (Criminal and Violent) and Nutrition” and connected them with autism. The book is the story of a mother’s quest to discover and destroy the monster that had invaded her child’s body. Her son at an early age lost all speech and eye contact.  He was diagnosed as a clear case of autism.  She discovered that in her son’s case: 1) there had been an overuse of antibiotics for numerous ear infections, 2) he was allergic to both milk and wheat, and 3) he had an adverse reaction to numerous vaccinations all of which together led to the diagnosis of autism. Quick intervention in all three areas led to a re-diagnosis from autism to gifted and talented. It also reaffirmed Dr. Rimland’s statement that “In the past 40 years the most significant research in the field of autism has not been done by men in white lab coats, but by mothers!”  I cannot tell you how important this book is.  Each Appendix is filled with resources.  Page 262 has information about the Autism Network for Dietary Intervention.  Both Karyn Seroussi and Dr. Lisa Lewis (author of SPECIAL DIETS FOR SPECIAL KIDS) frequently speak at the DAN conferences and founded the Network for Dietary Intervention.  See www.autismNDI.com.

Lastly, in 2008, a small book of only 157 pages entered my life at just the right moment.  Again, a mother, not a researcher in a white lab coat, is the expert.  Told with the directness and self-confidence of an explorer of new and exciting territory, Kim Marie Lesso in BACK IN MY ARMS details her 13 year journey with her two children on the autism spectrum.  Kim was told early on that her son Tad would never speak, that he was un-teachable, and that he would never even recognize her a human being.  Her younger daughter, Kaitlyn, has been diagnosed with Asperger’s Syndrome.  This small gem of a book is filled with practical, down to earth tips for bringing out the knowledge that her children with autism already possess.  Kim learned that Tad could read before he could speak.  Yes, at 16 ½ years old, he speaks and attends school and church and is somewhat of a gentle giant of a man/child.  Kim can be reached and her wonderful book can be ordered through her web site at www.autismguru.com.

It seems to me that new books and films appear almost daily.  I hope these resources will provide you with valuable new information for your own journey.  As you discover new and helpful resources, please share them with me.  My listing of resources is constantly being updated.  I look forward to adding your suggestions.  My life has been blessed by so many people, and the synchronicities are almost overwhelming at times.

“If we be TRUE
to
the integrity
of
the moment
who knows, what or where,
wonders, beasts, adventures
will sweep us UP
into their flood!

A Reflection on Synchronicity
Laurence A. Becker

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Levitin reminds us that music is a global process. Therefore music does not just tap into one area, but in many areas of the brain at the same time. This means that music can transcend neurological injury or impairment, often forging its way through our neuron circuitry and finding the roads that work (through a process called neuroplasticity). Mark Tramo, assistant professor of neurology at the Harvard Medical School started to study how different forms of brain damage interfere with normal perception of music and speech. One subject of a case study lost most of his auditory cortex to strokes. He could hear but complained that music and speech were hard to understand. However, the part of his brain that survived the impact could still recognize his favorite songs.

During sessions at the Association for the Rehabilitation of the Brain Injured (www.arbi.ca) music therapists use the music from the client’s senior high school years as a means to stimulate long and short-term memory. One 40 year-old female who sustained a head injury demonstrates that she has sensitive feelings towards music from the 1980’s. She will often close her eyes during reflective moments in the music and may cry to a lyric or melody that has particular meaning. Although unable to speak she is able to blink once for yes and twice for no. Through this process, and over many weeks, a song was written about people, things and experiences that were important to her.

It seems that there are many different spins on the musical brain. In an article by Mark Wheeler published last month, he wrote of Istvan Molnar-Szakacs who will be using “emotional music” to examine the brain regions involved in emotion processing. “Music has long been known to touch autistic children,” Molnar-Szakacs says. “Studies from the early days of autism research have already shown us that music provokes engagement and interest in kids with ASD. More recently, such things as musical memory and pitch abilities in children with ASD have been found to be as good as or better than in typically developing children.” His research hypothesis is, “if we are able to engage the brain region involved in emotion processing using emotional music, this will open the doorway for teaching children with ASD to better recognize emotions in social stimuli, such as facial expressions.” (online resource: http://newsroom.ucla.edu/portal/ucla/using-music-to-explore-the-neural-49912.aspx)

In study after study scientists are finding correlations between music making and some of the deepest workings of the human brain. Research has linked active music making with better language, improved social behavior and school grades.

Recently I found a reference to Albert Einstein’s grade school years. At one point, teachers told his parents to take him out of school because he was “too stupid to learn.” The school suggested that his parents support Albert in getting a manual labor job. Instead of following the school’s advice, Albert’s parents bought him a violin. Albert had a natural affinity towards the violin and he became proficient on the instrument. He loved the music of Mozart and Bach the most. A friend of Einstein, G.J. Withrow, said that the way Einstein figured out his problems and equations was by improvising on the violin.

I had the pleasure of attending an “open mic” for persons with disabilities who chose to display their musical growth and talent in front of an audience filled with loving friends and family. Some of the performers have autism and/or autistic tendencies. One young woman who performed had been told that she would never be able to learn anything. Not talk, walk, read, or any of the other things that we all take for granted. Not only did she perform two pieces of music….she read every note.

As we continue to discuss music therapy at a professional and community level many more questions will be considered in the area of using music as therapy. There are however some things we know for sure. As the professor of music at Harvard Kay Shelemay states, “All humans come into the world with an innate capability for music.” Perhaps for some it may just take extra time, patience and professional support to unlock the musical brain in each of us.

Cromie, W (2001) Music on the Brain: researchers explore the biology of music. Harvard University Gazette, March issue
Levitin, D. (2007) This Is Your Brain on Music: The Science of a Human Obsession USA: Penquin Group Inc.
Sacks, O. (2007) Musicophilia: Tales of Music and the Brain USA: Knopf Publishing Group
Wheeler, M. (2008) Study uses music to explore the autistic brain’s emotion processing UCLA Newsroom http://newsroom.ucla.edu/portal/ucla/using-music-to-explore-the-neural-49912.aspx

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Our bodies evolved to respond to stimuli or “commands” from the brain. The remarkable reality is that our bodies will perform movements regardless of our readiness or ability to safely and efficiently negotiate the action. If we were unable to complete actions our body was not ready to perform perfectly, there would be no pulled hamstrings on the track, no herniated discs at the factory, and no tennis elbow. Muscle compensations occur when there is an imbalance between muscle groups and/or a weak and inhibited muscle. With respect to the young autism population, muscular imbalances can develop as a result of pre-existing movement deficits combined with sedentary daily routines and a lack of vigorous physical activity. Here’s the equation:

Movement Deficit + Compensatory Movement Pattern x Continued Cycle of Inactivity = Muscle Imbalances and Poor Quality of Gross Motor Skills

As discussed in previous FBF articles, physical fitness is a gateway towards a wide range of abilities and options in life. A foundation of poor movement quality will often result in a decreased motivation to engage in novel play or regular physical activity. For younger individuals, both neurotypical and on the autism spectrum, muscular imbalances can be easily addressed and remedied with some smart programming and ingenuity. The majorities of movement imbalances that I come across with my athletes are hip-based, and usually evident in poor gait and posture. The typical “intervention” involves, strangely enough, hip-based exercises and activities.

One of the big gross motor movements is squatting, or a low bending of the knees. This action can be used as both an assessment and as a fitness activity integrated into a physical education program. What we are after is hip-flexion, or a bending motion. Individuals with tight hip-flexors often lean forward when attempting to perform a low squat, or rise up on their toes with the heels off the floor. A compensation pattern I’ve found to be quite popular in the autism circle is bending with straight legs and a rounded back, bypassing the whole leg-bending ordeal entirely. This type of compromise can not only lead to poor postural stability, but to injury as well.

Fortunately, there are PLENTY of different exercises and activities that can be used to develop proper hip flexion. I have found the “Grab Ball Complex” (GBC) extremely effective in teaching children on the spectrum how to perform a squat properly. The GBC is performed by holding a ball slightly lower than the athlete’s hips (about knee level), and having them grab and then pass the ball back to the instructor. Monster walks, which consist of taking BIG steps across a particular area of space, are another great hip-flexion exercise, particularly when used as a warm-up. Having trouble coming up with some squatting variations? Just consider the goal of getting the butt close to the ground with the feet planted on the floor and design the activity around that. Get creative and fun, and make sure the athlete can perform the activity independently before moving on to more challenging exercises. Remember, exercise is something we do. Fitness is something we live.

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Although neither one of us knew it at the time, Charles Hart was describing the quintessential deficit in theory of mind—the lack of knowledge / appreciation that different people have different minds and hence different ways of thinking, feeling, and believing; and further, that these internal mental states have a lot to do with the person’s external behavior. The following examples may help to illuminate these important points.

To have a theory of mind is to be able to attribute mental states to others. In other words, we use mental state terms to try and understand what people mean in order to make sense of their behavior—for example, she’s crying (external behavior) because she feels (internal mental state) sad. People who don’t have autism attribute internal mental states to external behavior quite naturally, using their attributions to guide their own behavior. For example, you wouldn’t ask your boss for a raise if he or she were speaking harshly to someone and hence, in an obvious bad mood! The importance of being able to link external behavior with internal mental state cannot be overstated, since assigning an internal reason for the behavior that we see:

• helps us to understand (i.e., make sense of) a person’s behavior (Daddy is yelling at me because he is angry.);

• enables us to use the information that is gleaned to predict what a person might, or might not do (If he’s angry he might not let me have dessert.); and,

• provides the basis by which we may modify and/or adjust our own behavior to meet the needs of the situation (I’d better not ask him for a cookie right now.).

There is a great deal of research today that indicates that individuals with ASD have deficits in theory of mind, and further, that these are linked to language development. Like autism itself, these deficits exist on a continuum from mild (in the case of more able individuals), to severe (in the case of those with significant challenges).

By “reversing” the content of the bulleted points above one can get an idea how deficits in theory of mind impact individuals with ASD:

• If you aren’t able to understand that a person’s overt behavior has a lot to do with his or her internal mental state (e.g., harsh words reflect anger), you will not be able to make sense of the person’s behavior.

• If you can’t make sense of a person’s behavior, you are not likely to be able to predict what he or she will do.

• Without the ability to predict likely future action, one would not know how to adjust his or her own behavior to meet the demands of the situation.

Joint Attention as an Early Indicator of Theory of Mind Knowledge

Normally developing children, from approximately 9 – 12 months of age, will follow an adult’s line of regard—that is, his or her point or eye gaze—for the purpose of sharing attention. This is called joint attention, and while very few people have even heard of it, joint attention is a critical precursor to language development. In fact, it is actually the gateway to intentional symbolic communication, and very much reflective of underlying theory of mind knowledge. Eventually, neurotypical children learn to use a pointing gesture themselves to attempt to get adults to follow their line of regard, as they quite literally point out items and events of interest to them. Pointing to share attention is considered one of the earliest indicators of theory of mind knowledge. Conversely, the lack, or impoverishment of this type of behavior in children with ASD is indicative of theory of mind difficulty. It should be obvious that given its intimate connection to communication and language development, the competencies involved in the social-cognitive construct of theory of mind should be targeted in intervention activities.

Putting the Horse in Its Proper Place

If one doesn’t understand the concept of theory of mind and how it relates to language development, it is easy to put the proverbial cart before the horse. This happens when we ignore the importance of joint attention and comprehension, and start intervention at the level of language expression. It also occurs when we fail to build in intentionality because we are too busy force-feeding vocabulary. That said, I belong to the “it’s never too late to get it right” school of thought. Human beings are amazingly resilient. Under motivating conditions, it is relatively easy to establish joint attention and to build in intentionality. And, since both of these constructs are foundational to communication and language development that is where the focus of language intervention should always begin.

© Diane Twachtman-Cullen, Ph.D., CCC-SLP

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