Changing Attitudes Towards Repetitive Behaviors and Autism

Repetitive behaviors in those with autism have long been viewed as something to be eradicated. My own son’s problems in school began with his teacher’s intolerance for his incessant rocking and pencil tapping in class. These compulsions got him habitually thrown into the hall, and eventually out of school. 

But times are changing and so are attitude towards self stimulating or “stimming” activities.

In a recent press release, The Son-Rise Program announced that it had been voted "Best Autism Therapy," which included input from over 4,000 autism professionals and parents. The Autism Treatment Center of America, which runs the popular program, issued this statement regarding repetitive behaviors:

"We have a deep acceptance of and respect for our children. That enables us to reach across the chasm separating their world from ours by doing something bold and unusual. We join, rather than stop, a child’s repetitive, exclusive and ritualistic behaviors. Doing so builds rapport and connection, the platform for all future education and development. Participating with a child in these behaviors facilitates eye contact, social development and inclusion of others in play."

Behavior is a form of communication. When other avenues of communication are closed for a child with autism, behavior is how we get a sense of what they want or need. The better we are able to decipher their behaviors and what they are trying to express, the more effective we will be in helping them.

Repetitive behaviors have even emerged as a civil rights issue. The Autism Self Advocacy Network (ASAN) points to the fact that fleeing undesirable situations is a behavior that often indicates that a person with autism is being emotionally or physically abused. They fear that a medical diagnostic code for wandering and/or bolting will lead to proactive restraint, shutting down the person’s ability to express that they are in an intolerable situation. Their fear is certainly not ungrounded given some of the harrowing conditions in our schools and residential treatment centers. 

Other individuals with autism point out that just about every person performs repetitive behaviors to cope with their stress, some are just deemed more socially acceptable than others. Few neurotypical people are castigated for pacing, twiddling their thumbs or turning over rosary beads. And there are also repetitive behaviors of Buddhist monks who move a grain of sand at a time, resulting in exquisite sand paintings. 

Tony Attwood, the famed autism expert, once said that the way to cure Asperger’s is to have a child with Asperger’s go to his or her room and close the door, meaning the problem with autism is as much with the world’s acceptance of it as it is with the individual with autism.

It is encouraging to see the gradual shift of society’s understanding and acceptance of repetitive behaviors by those with autism, but many would agree we still have a long way to go before the stereotyping, labeling and ostracizing are completely eliminated.

Equine Therapy for Autism

Equine Therapy

istockphoto.com/matthewleesdixon

Anecdotal stories pore in about the wonderful and therapeutic effects that animals have on children with autism. Reports from Thailand about children on the spectrum riding elephants leave me wishing our elephants weren’t confined to the zoo. But Hippotherapy and Therapeutic Riding are available for our children to benefit from riding a large animal — namely, the horse.

Hippotherapy, derived from the Greek word “hippo” for horse, is a physical therapy provided under a physician’s supervision as part of a comprehensive therapeutic program benefiting individuals of all ages with physical and/or developmental disabilities. Therapeutic Riding has many of the same benefits, but it is more of a recreational riding program for the disabled and does not usually involve a physician’s supervision. 

Hippotherapy and Therapeutic Riding use a horse’s multidimensional rhythmic movement, which resembles the natural walking gait of human’s to achieve specific therapeutic goals. Specially trained physical therapists, occupational therapists and speech-language therapists have reported the following results in patients with developmental disabilities:

* Relaxed Muscles 
* Increased Balance 
* Greater Muscle Strength 
* Sharpened Hand-Eye Coordination 
* Better Sense of Body Awareness 
* Better Sense of Self Control
* Better Sense of Self Confidence
* Improved Communication
* Improved Concentration
* Improved Socialization
* Improved Patience
* Improved Fine Motor Coordination
* Improved Sensory Integration

A horse moves a person in multiple ways by tilting, rotating and moving the rider, which would take an entire session of difficult physical therapy exercises to achieve. Sitting on a horse improves core muscle strength, muscle symmetry, balance, posture, flexibility, circulation, coordination and breathing (which encourages speech). Hippotherapy can greatly improve an individual with autism’s sense of their own bodies in space. Often riding bareback, the child receives sensations from the horse’s movements, making a child aware of his or her body in relation to the horse. The tactile sensations the child receives from the horse’s fuzzy skin, rough mane and tail, as well as the soft nose also help to draw the child out of their shell.

The excitement of riding encourages speech. Non-verbal autistic children have been known to suddenly start talking in order to use the horse’s name and get it moving.

Special relationships develop with the horses who are specifically chosen and trained to be gentle, patient and calm. The unconditional, non-judgmental bond between the horse and the patient encourages the child to form an attachment with another living being, which translates into other aspects of their lives.

It should be noted that children with autism can be initially upset by the new environment and activity of riding, but that rapidly subsides when the riding gets underway. Some equine therapy ranches have a policy of letting the horse pick the child, a unique method that has had excellent results. A staff person leads a child to a horse, and watches for the horse’s reaction. If the horse dips his head or nuzzles the child, the child has been “chosen.” 

As the individual’s with autism’s confidence grows, therapists frequently see them making eye contact with their horse, then with people. Some riders progress to learning how to groom and tack and otherwise take care of their animal, a milestone in assuming responsibility.

Equine therapy has a calming effect on individuals on the spectrum and has the added benefit of getting our largely urbanized youth back out into nature.

Disney’s Animal Kingdom and Children with Autism

Disney's Animal Kingdom

Courtesy: Panoramio - jrranger

In light of my most recent post about zoos and children with autism, it was only fitting that our family decided to pack our bags and head to Disney’s Animal Kingdom at the Walt Disney World Resort in Orlando, Florida. Having never been to this specific park, we were both anxious and curious as to what the trip would hold for our high-functioning, nine-year-old son.

For starters, the place itself is amazing and is a theme park, zoo and wildlife preserve all rolled into one. For animal lovers, there’s just about everything you could imagine and plenty of animal exhibits, including several walk-through "treks" that contain a host of animals from around the world. There is even a special section of the park devoted to Dinosaurs.

However, a major criticism is that many of the "featured" attractions at this park are not autism-friendly at all. Most of them are likely to put a child on the spectrum into sensory overload mode, which actually occurred with our son in several instances. Here’s a brief overview:

DINOSAUR – Regardless of how much your child may love dinosaurs, this ride could be a traumatizing experience. This is a bouncy, dark and extremely loud ride that can be summed up in one word: intense.

Expedition Everest – Much like DINOSAUR, this is also an extremely intense ride. This is a full-blown roller coaster that actually goes backwards in some spots and there are also loud sounds and fast drops and turns. While there are no upside-down loops, this roller coaster is unlike Big Thunder Mountain Railroad and is fast and extreme.

Kali River Rapids – Expect to get soaking wet on this ride and it is a good idea to bring a change of clothes as a result. If your child has tactile sensitivity with water, this ride needs to be avoided.

It’s Tough to be a Bug 3D Show - A great 3D show that gets intense halfway through. Hopper, the grasshopper character from "A Bug’s Life" decides to get "revenge" on the audience, unleashing an army of spiders, bees and other "angry" insects. Dense fog, darkness and stink bombs are all part off this sensory-filled experience. Out of all the rides, our son had the most difficulty coping with this one.

Kilimanjaro Safaris – By far, this was the highlight of our visit to Animal Kingdom. This is a simulated safari through the African savanna, which includes a 100-acre tour with a chance to see giraffes, rhinos, lions, crocodiles and elephants (just to name a few). What struck me the most about this ride is that the vehicles are not on safety tracks like most other Disney rides. The tour takes place in an actual safari truck with an actual driver. Other than a few bumpy moments, this ride should thrill your animal-loving child.

Overall, Disney’s Animal Kingdom was a great experience. However, it was a bit disappointing that most of the highlighted attractions created sensory difficulties with our child. Regardless, this is no reason to avoid the park as there is plenty of other things to do, including some less intense rides such as TriceraTop Spin.

We’ll be back.

Summer Reading for Children with Autism

Summer can be a time of stress for a child with autism and parents are mindful of not wanting their children to lose ground educationally over the long break. 

Reading is an important element of the summer structure and you’ll want to create a pleasant experience outside his or her usual routines. A great way to prepare your child for the big change is by reading books about it. 

Seattle Children’s Hospital Autism Center recommends these books to help your child get ready for the summer: 

Picture Books:

• The Night Before Summer Vacation by Natasha Wing 
• How I Spent My Summer Vacation by Mark Teague 
• Go Go America by Dan Yaccarino 
• Last Day Blues by Julie Danneberg 
• A Couple of Boys Have The Best Week Ever by Marla Frazee 
• To Be Like the Sun By Susan Marie Swanson 
• Monkey and Me by Emily Gravett 

Reading Books:

• The Aurora County All Stars by Deborah Wiles 
• The Life and Crimes of Bernetta Wallflower by Lisa Graff 
• Violet Bing and the Grand House by Jennifer Paros 
• Greetings from Nowhere by Barbara O’Connor 
• Moxy Maxwell Does Not Love Stuart Little by Peggy Gifford 

Check to see if your city’s library has a summer reading club and/or story time for children with autism. Many libraries across the nation have become more inclusive and sensitive to the needs of the developmentally disabled. 

Experts offer some reading tips to parents wanting to make sure their child’s skills don’t regress over the summer months. Those include: 

• Set aside a specific time each day to read. 
• Choose non-fiction books rather than fantasy. 
• Read books that prepare them for events and/or engage their special interests. 
• Choose book with a tactile component such as different textures or a pop-up format. 
• Ask frequent questions about the story. 
• Have them recount the story to you after you’ve finished reading it. 
• In advance prepare pictures of nouns in the story that your child may not know so that you can show rather than tell him or her what they mean. 
• Use flash cards for phonics. 
• Emphasize simple rhymes. 
• Repetition. Repetition. Repetition. 

To this, I would add a personal story. One of my sons with autism is dyslexic and didn’t begin to read until he was in the fourth grade. His breakthrough came when he got an audio book of a story set in colonial times. He holed up in his room and read the paperback version as he listened to it being read over and over again every day for two weeks. After that, he could suddenly read and was beside himself with excitement and joy. So while visuals are important, sometimes it’s the audio component that switches on the light inside the autistic brain. 

Here is a website that has free printable charts for reading and other daily activities that you may find useful for your child.

Happy summer reading!

Zoos Can Benefit those with Autism

Giraffe

istockphoto.com/MarkPapas

It’s no secret that children love animals, particularly those that are found in zoos. And for those on the autism spectrum, this affinity for zoo animals is seemingly compounded due to the comfort and respite they provide. Some zoos have taken notice, even offering special programs specifically geared towards those with autism, making their zoo experiences more enjoyable in the process.

There is plenty of anecdotal evidence that demonstrates the benefits of animals for those with autism and other related conditions, and there are even some studies confirming this fact

Karin Winegar, author of “Saved: Rescued Animals and the Lives They Transform,” has addressed this phenomenon and was previously quoted in a New York Times article, stating:

“The human-animal bond bypasses the intellect and goes straight to the heart and emotions and nurtures us in ways that nothing else can …We’ve seen this from coast to coast, whether it’s disabled children at a riding center in California or a nursing home in Minnesota, where a woman with Alzheimer’s could not recognize her husband but she could recognize their beloved dog.”
Temple Grandin is another example of how one’s connection to animals can impact lives. Diagnosed with severe autism as a child, Grandin found her passion in animals and animal science, eventually going on to transform the slaughterhouse industry, which now affects the way livestock animals are treated this very day.

As one of our other authors previously noted, our worldview of autism is often shaped by our own personal experiences. With this in mind, there are few things in the past six years of our autism journey that stand out more than the frequent trips to our local zoo. It was during those times when our son’s condition and symptoms seemed to miraculously vanish as he became enthralled and captivated by the world around him. As zoo members and annual passholders, our visits became near-weekly occurrences, with each trip providing something new and different for my child each time.

As the years progressed, our son became increasingly interested in animals, eventually able to identify complex animal names and species classifications. His uncanny ability to identify and classify even the most obscure of animals is something that would impress even the most seasoned zoologist.

Zoos can be therapeutic for many children on the autism spectrum and unlock something unique inside a child. If you have yet to experience the joys of a zoo outing, take the time and plan a trip. You just may discover something new about your child and find out that you have the next Jack Hanna on your hands.

Autism: A Disability or Disorder?

disability disorderAs we all know, the vaccine-autism debate can often be as virulent as the diseases the vaccines are intended to prevent. But equally as rancorous is the debate of whether autism is a disability or a disorder.

The question cuts to the heart of issues from allocation of funding to how individuals with autism want to be perceived by the world. 

By definition, a disorder is a set of symptoms or undesirable traits separate from the person who has them. A disorder has no rights under the Department of Disabilities Act (DD Act) or any other legislation. A disorder must be prevented, fought, eradicated and is typically spoken of in highly negative and combative terms.

A disability, however, grants personhood and legitimacy to the person who has one. The DD Act presumes that a person with a developmental disability has the right to self-determination, inclusion in the community, as well as care and treatment that maximizes the potential of that person with the disability. It specifies that no person with a disability can be subject to a greater risk of harm than to any other person in the general population. Protections for the disabled are offered via the Protection and Advocacy (P&A) system.

There is a huge philosophical divide in the use of the two terms. 

Autism Speaks, the fundraising powerhouse, comes down on the side of autism being a disorder. While the organization enjoys a great reputation, many people were highly offended by their “I am Autism” video that was released several years ago and some questioned their motives in producing it. 

The spot created a PR headache for the organization, drawing the ire from many in the neurodiversity movement and elsewhere. The video also gave rise to parodies such as “I am Autism Speaks” and "I am Socks."

Standing in sharp contrast to Autism Speaks is The Autism Self Advocacy Group (ASAN) headed by Ari Ne’eman, President Obama’s appointee to the National Council on Disabilities. Mr. Ne’eman has Asperger’s Syndrome and many people vehemently objected to his appointment because of his professed desire to treat autism as a civil rights issue of honoring “neurodiversity." ASAN’s motto is “Nothing About Us, Without Us” and they are unhappy that Autism Speaks does not employ anyone with autism within their organization.

The website for ASAN is eye-opening. I found them to be opposed to legislation that I thought had sounded like a good idea. For instance, giving “wandering” a diagnostic code to draw more attention to the problem seemed like a no-brainer. But ASAN points out that no one deems wandering to a be a medical condition and a specific medical diagnosis could have the unintended effect of institutions proactively constraining and restraining individuals who might wander. In effect, the code would create an excuse for abuse in schools and residential institutions. As far as alerting rescuers to a missing person, they contend that using the Amber Alert system would be as or more effective than creating a diagnostic code. ASAN’s perspective is useful in terms of them always being alert for the implications of legislation upon the civil rights of those who have developmental disabilities and I have found their opinions enlightening.

Personally, I think the range of people’s opinions on disability vs. disorder is going to be as broad as the autism spectrum itself. While I fully understand the desire to cure autism, to me it’s a slippery slope. My fear is that concentrating on finding a cure will lead to future abortion of fetuses deemed to be autistic and that would be a tragedy in and of itself.

As the mother of teens with autism, I am profoundly disappointed in the public school system’s ability to address their needs and worry about how they will fare as young adults. Quality of life naturally take precedence in my mind. 

However, each person’s autism story and experience will certainly shape their outlook and worldview on the issues that divide us and simultaneously hold the key to us finding common ground.

Mother Found Not Guilty of Murdering Son with Autism

Yvonne Freaney

Yvonne Freaney

In an upsetting story out of the United Kingdom, a 49-year-old mother has been found not-guilty of murdering her 11-year-old son with autism, despite admitting to strangling him in a hotel room back in May of last year.

Yvonne Freaney, a resident of Wales, strangled her son Glen with a coat belt because she "was frightened about who would look after him." After killing her son, Freaney laid down and attempted to take her own life, but was unsuccessful. Prosecutors described her as a "sad, defeated woman." 

Freaney was living in the Sky Plaza hotel with her severely autistic son due to alleged domestic violence episodes, causing her to move out of the family’s home. Some incidents were violent enough to require Mrs. Freaney to seek medical attention for her injuries, but she never pressed charges against her husband, Mark. In fact, during the trial, he was shown to have sent a text message to a friend that read, "I’m a wife beater and proud of it. She deserves it.”

Clearly, the jury showed compassion and spared Freaney of murder charges and this case highlights the extreme emotional stress that parents of children with autism can often be subjected to. Further compounding matters, Freaney’s hotel stays are an indicator of the lack of a support structure around her.

This case is tragic for all involved and underscores the need for respite care for parents and caregivers. While Freaney clearly should have been found guilty of murder, she also should never have been in the position she was in to allow these incidents to occur.

Parents with children on the low end of the spectrum can often be exhausted physically, emotionally and financially — and for those who are emotionally unstable, it doesn’t take much for them to reach their breaking point.

Freaney is being held until her sentencing on June 10th for the lesser charge of manslaughter.

Top iPad Apps for Autism and Expressive Language

iPad for Autism

Courtesy: apple.com

By now, we’ve all heard that iPads can be very helpful to children with autism, allowing them to communicate desires and feelings in ways not otherwise possible. Gone is the keyboard and mouse as the child now has direct control over the entire interface. The devices are considered “cool” and don’t call unwanted attention to a child. 

If you’ve committed to getting an iPad for your child, you already know that it can be a dilemma figuring out which ones are the best and most appropriate. 

Speech therapist Lois Brady uses “iTherapy” extensively with her patients with autism and has authored the book “Apps for Autism." 

Brady has compiled a list of her most highly recommended apps that specifically address expressive language, which include:

* Proloquo2go by AssistiveWare

* My Choice Board by Good KarmaApplications

* Assistive Chat by Assistive Apps 

* Predictable by Therapy Box 

* TapSpeak Button by TapSpeak Apps  

* Sign 4 Me by Signing Apps 

Additionally, for those with PCs, Martin van der Kooij has developed Picto Selector specifically for the PC, which has also recently become available for MAC. For more information, visit: http://www.pecsforall.com 

With so many choices, the world of iPad apps can be daunting. It’s good there are professionals like Ms. Brady who have examined every app under the sun and is able to share her assessment and opinions with us.

If you would like to hear Ms. Brady compare and contrast these apps you can find her valuable information in the video below:



DIR/Floortime Therapy for Autism

DIR/Floortime is one of the many time tested therapies available to treat autism and other developmental disabilities. The stated objectives of DIR/Floortime are “to build healthy foundations for social, emotional and intellectual capacities, rather than focusing on skills and isolated behaviors." DIR stands for Developmental, Individual, Relationship-based, a model that enables clinicians, parents and educators to conduct a comprehensive assessment of an individual and develop a treatment program unique to them. 

“Floortime” is a specific technique and a form of emergent curriculum where a child takes the lead in revealing to the adult his or her natural emotional interests. The therapist, in turn, uses that expressed interest to challenge the child towards greater mastery of their social, emotional and intellectual capacities. With young children, this playful relationship literally occurs on a mat-covered floor, but carries over into conversation skill-building and interactions in other environments. Parents are also brought into the equation.

I saw a video on Floortime in which a child who was riveted by a toy and oblivious to her attendant parents, ended up happily sharing the toy with them. A watershed event for the entire family, the child was so excited by these people who’d yearned to connect with her and had regarded it as an impossibility.

Adolescents and adults can also benefit from DIR. In fact, doctors maintain that many individuals with developmental disabilities are prematurely written off in terms of improvement that can be made in their conditions. They point to unconscious reactions in adults to the size of older individuals with developmental disabilities as being a factor. The adult reaction to an angry three-year-old is much different than that of a sixteen-year-old who is acting out. The attending adult wants to address the needs of the three-year-old who evokes their nurturing impulses, while seeking to punish, contain or restrain the teen. Certainly, these forces are at work in public school systems and residential treatment centers, entrapping many needy individuals in a vicious and escalating cycle. 

Doctors have also warned that children shouldn’t be labeled “retarded” until three full years of treatment render no improvement. Succumbing to such resignation isn’t necessary when work can be done with a child and their family to improve his or her processing capacities. Striving to remediate specific deficits such as deficient motor-planning and sequencing, which affects function across the board can lead to overall improvement. Working to identify underlying conditions and identifying the strengths and weaknesses within an individual’s many systems is much more demanding of diagnosticians and therapists, but brings hope to people who in many cases, have been written off, including self-injurious children with autism. 

DIR/Floortime’s comprehensive approach is scientifically grounded and effective at improving the quality of life for children with autism. It’s very expensive and that puts it out of reach for my family, but if you have good insurance, it’s definitely something to consider. In addition, these types of services may be covered under your State’s autism funding, grant or scholarship programs:  http://www.icdl.com

Autism Changes the Role of Grandparents

iStockphoto.com/AndreasREH

A groundbreaking survey from the Interactive Autism Network (IAN) paints a picture of grandparents assuming a larger role in the lives of their grandchildren with autism. They are often the first to suspect that a child may have autism and once diagnosed, they have their own struggles in coming to terms with it. Some are resilient, while others confess to having a hard time moving through their grief.

Thereafter, grandparents become immersed in the daily life of the child, even going so far as to have some say in their course of treatment.

Overwhelmingly, grandparents are a savvy group, doing extensive research to empower themselves as an advocate for the grandchild and taking up autism causes.

Among the survey’s findings:

  • Over 36 percent say they take care of their grandchild at least once a week and about 1 in 5 indicate that they provide regular transportation for the child. 
  • 72 percent of grandparents say they play some role in making treatment decisions for their grandchild.
  • Many say they moved so they could be closer to their grandchild, while 1 in 10 report living in the same household.
  • A quarter of grandparents report spending up to $99 a month on their grandchild, with some contributing over $500 or $1,000 monthly. 

Grandparents are making considerable sacrifices for their child with autism both in terms of money and freedom as they retain the role of caregiving long after they thought it would be over.

While unscientific in that uninvolved grandparents would be unlikely to participate in the survey, the findings do reveal a trend towards a more tightly-knit extended family, a village forming to help raise the child with autism. This is very touching and heartening to me that at a time when modern life is seeing families more scattered and estranged, autism is bringing them together.

Even more, over ninety-percent of the survey respondents reported that they feel much closer to their grown child because of their grandchild’s autism diagnosis. As in many other areas, this appears to be yet another silver lining for families facing autism on a day-to-day basis.

Much like within neurotypical families, grandparents are often the unsung heroes and deserve much more credit and recognition for their part in dealing with autism.

 
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Did You Know?

  • * In 1970, Autism affected 1 out of 10,000 children
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