New iPhone app aims at helping children with autism

When your child is diagnosed with autism, a million questions begin running through your mind. “How do I help him/her?” “How do I find a doctor that I know is qualified” “How am I going to pay for this?” “How can I effectively help my child in their development?” Many of these answers are dependent a variety of different factors and the nature of your specific situation.

Nowadays, whenever a “how-to” question is posed, typically one of two answers are given; A) ‘Google That’ or B) ‘There’s an app for that.”. The latter of course is referring to Apple’s revolutionary iPhone and iPod, both of which feature download-able applications (“apps”). There are apps available that assist you in a variety of tasks ranging from getting a cocktail recipe to ordering movie ticks and booking a hotel room. Even more impressive is the possibility that there will soon be an app available targeted to help children with autism.

Lisa Domican lives in Dublin, Ireland and is the mother of two children with Autism; Liam (11) and Grace (9). With both Liam and Grace, Lisa has practiced Picture Exchange Communication, also known as PECS which is an alternative form of communication that enables children to use pictures instead of words to create sentences and communicate.

“You are constantly having to replace loose cards and make new ones,” said Ms Domican. So out of that came the idea to develop an iPhone application that would make the process more efficient. Coincidentally, the application was created under the name “Grace”, her 9 year old daughter.

“With the iPhone, the screen looks like a Pecs book. It’s ok to have a four-year-old walking around with a Pecs book; it’s not ok for a 10 or 12-year-old. They’re very personal to the kids; it’s their voice. The [Pecs books] really stand out, whereas the iPhone is discreet and always there.”

Domican collaborated with Steven Troughton-Smith, a software developer for the iPhone who has created a number of bestselling applications. The application is backed by O2 Ireland who supplied the devices and testing for the application while it was in development stage. Domican’s daughter, Grace has become so comfortable with the device that she adds her own pictures to the PECS library with her iPhone Camera.

The application is still undergoing testing at a few schools to see if parents, students and teachers can use the application easily. Once approved, it will be sent to the Apple iPhone application store.

Neurotherapy as a Treatment For Autism

Neurotherapy Treatment For AutismCanadian neurotherapist Paul Swingle will be the first to admit that his methods of treatment for Autism are often criticized. Many claim that there are no dependable studies that prove his neurotherapy sessions work.  Melanie Lewis of Harrogate, England is a firm believer in Swingle’s treatment and she says her son is proof of its effectiveness.

When Melanie’s son, Martin was three years old, she and her husband began to worry about him. His speech was delayed, he lacked coordination and was unable to focus on any one thing for too long. He soon began to have seizures and visited doctor after doctor who would simply give him more medication and send them on their way.

At 8 1/2 years old, Martin began having a different kind of seizure.  Melanie took him to several different doctors and neurologists who gave negative prognosis and their answers were to up his dosages on his medication. Melanie says, “It was a time of fairly major disillusionment in the medical system.”

Melanie, a doctor and her husband, previously a doctor, now a lawyer have always taken a “proactive” approach to their son’s condition. They tried everything from modifying his diet to horse-back riding to having him take Ritalin and anti-seizure medication. None of these things seemed to help, at least not dramatically.

It was across the world that Melanie would soon locate Paul Swingle, a psychologist from Vancouver. She says she was browsing around the internet and came across Swingle’s website. The neurotherapy that he specializes in made sense to Melanie and this convinced her to fly halfway across the world to try to find a successful treatment for her son.

Having surfaced in the 70’s, neurotherapy was introduced to treat a variety of disorder’s including attention deficit disorder, autism, epilepsy and addiction. It has also been used as treatment for stoke victims.

Swingle describes neurotherapy treatment as involving normalizing, modifying and optimizing brain functioning.  He goes on to say that “We find areas [of the brain] that are not functioning efficiently.” Then neurotherapeutic exercises are introduced to stimulate the non-functioning areas.The idea is similar to physical exercises that enhance muscles.

The first step in the neurotherapy treatment is an initial analysis which includes the measurement of brainwaves. An electroencephalograph (EEG) is used to determine which brain waves are excessive and which are under or dysfunctional. This information is then used to give feedback to the patient and they can then learn how to regulate their brain waves to achieve successful relief from symptoms.

Swingle says that “self-regulation” of brain activity can be compared to using Yoga and meditation to reach complete relaxed states, focusing on the power of the mind. He says this can mind control also be achieved using neurotherapy exercises.

What exercises are used to reach the point of regulation? Swingle explains in his book, Biofeedback for the Brain:  How Neurotherapy Effectively Treats Depression, ADHD, Autism and More that “A brain-controlled Pac-Man game is often a popular and effective reward. Using rewards of sounds and game-like computer images that provide information about successful brain regulation allows the person to learn what concentration feels like and, better yet, how to sustain that mental state.”

Melanie admits that she was a bit nervous about flying across the world to have her son take part in a treatment that she hardly knew anything about – but the changes she has seen have made her a believer.  Within 5 days, Melanie claims Martin was off of the Ritalin that he had been on since he was 2 years old. He hasn’t had any since.  Though he still does take anti-seizure medication, his dosage has been cut in half since he began neurotherapy. Melanie also reports that she has seen drastic changes in Martin’s behavior, social skills and cognitive function.

As mentioned, neurotherapy has its critics.  On, along with Facilitated Communication which we discussed a few weeks ago, Neurotherapy is listed as a method of treatment that “should be avoided. ” Although documented cases of success exist, ” a comprehensive review has concluded that none of these claims is supported by well-designed studies.”

Despite this, Melanie explains that being a parent of a child who has diagnosed disorders you will try anything to help them. Neurotherapy has worked for her son and she’s happy for this.

Neurotherapy sessions with Swingle cost about $105 per session.  It is also worth mentioning that this method is traditionally only used with high-functioning autistic children in an attempt to correct dysfunctional brain-wave patterns.

Drama Therapy Opens Up New Alternatives to Autism Therapies

Drama Therapy is generally defined as the use of drama and theater processes toChild Actingachieve therapeutic goals. The technique is often used in schools, hospitals, correctional facilities and the mental health field to achieve behavior change, personal growth and improved emotional stability. Though this not a new method of therapy, it has more recently been used to help those with Autism.

Many people with Autism are in fact verbal, however they are unable to successfully communicate socially. Incorporating theater processes enables the participants practice social skills, learn improvisation and memorize lines to recite with increased emotional awareness. In addition and even more importantly, it gives the participators the opportunity to become an actor, preform a show and get applause for their efforts and in turn get a feeling of social acceptance and achievement.

Cindy Schneider is the author of the book Acting Antics: A Theatrical Approach to Teaching Social Understanding to Kids and Teens with Asperger Syndrome. In the book, Schneider discusses in depth the benefits of using Drama Therapy for those with Autism. She offers classes to both adults and children with a variety of diagnoses including Asperger’s Syndrome, high-functioning Autism and non-verbal Autism. According to her findings,  participants may gain:

  • self-confidence not only in performing, but in interactions
  • improved self-esteem; pride in their accomplishments
  • improved recognition of emotions in others
  • improved identification and labeling of own emotions
  • new leisure time activity in a group where they can be successful
  • new awareness of volume levels and beginning modulation of level
  • new skills for functioning as part of a group
  • new skills for following directions
  • improved ability to interact with peers
  • increased self-confidence through success

The organizers of a Drama Therapy Company are usually educated in the Psychology field as well as in Theater fields which gives them more experience and the specialized skills necessary in working with the selected group of participants. It is a bit difficult to locate a Drama Therapy Coach who specializes in Autism,  given the treatment’s relatively new status in the Autism community. The good news is that most Drama Therapy coaches do have the skills necessary to successfully and adequately work with those who are Autistic and can modify their teaching technique to be conducive to the needs of participants with Autism.

Facilitated Communication – A Controversy

A few weeks ago, we took a look at Carly, a young girl who has Autism. She is FCnon-verbal however she independently communicates via keyboard to her family, friends, Twitter Followers and Facebook Friends. She often fields questions from followers and she answers them herself. Once in a while her father has been known to send out a message just making a general request. Recently, for example, Carly’s father sent a message out kindly asking that people use Twitter to communicate with Carly as opposed ro Facebook. This was simply because Carly prefers Twitter over Facebook. Other than these once-in-a-while instances, Carly communicates everything herself with near no assistance.

As common as  individual communication methods have become, there are still some non-verbal people who are unable to successfully use a keyboard.  Hand-eye coordination is required to be able to utilize the keyboard method and many people lack this skill, especially if they have Autism. There are alternative methods of communication that have opened the doors of possibility for those who are non-verbal and lack the hand-eye coordination to successfully use a keyboard. One method in particular is known as Facilitated Communication or FC. In this method, specifically targeted to those who cannot type, there are two people involved; the communicator, (whom is often autistic, deaf, mute, etc) and the Facilitator. The facilitator is responsible for conveying the message of the communicator by assisting them in finding the right key, easing their hand to the desired letter, or pressing they key down that the communicator indicates.

Despite the numerous success stories that have come from this method, it is still under much controversy and has been for years.  In 1977, Rosemary Crossley claimed to have successfully used facilitated communication with a group of non verbal children. In 1989, the Facilitated Communication Institute was founded by Douglas Bilkin at Syracuse University in New York. The school was designed to educate families who were exploring such a method.

Facilitated Communication has had its advances over the years, but both medical and psychology experts claim that there is not enough hard evidence to prove the success of FC. In the 1990’s the American Medical Association and the American Psychological Association issued statements that opposed the use and validity of FC. Their main criticism being that the facilitator had influence over what the communicator was attempting to say.

In 1997, Diane Twatchman-Cullen, the editor-in-chief of the Autism Spectrum Quarterly journal published “A Passion to Believe: Autism and the Facilitated Communication Phenomenon. ” In the book, Twatchman-Cullen takes a look at the conditions that led parents, teachers and others to depend on FC.

Also featured in the book is an examination of the study that Twatchman-Cullen conducted in 1990 of three adults with non-verbal, non functioning Autism.  All three people spent their educational and informative years in institutions so they had no real external exposure. With a facilitator, however, all three were able to communicate ideas about the outside world.

“I don’t think that the vast majority of people were deliberately typing their own messages,” she said. “I really don’t believe that, but I do believe there was unconscious facilitation.”

Though rare, there have also been a few cases in which individuals have graduated from using FC to independent communication.

It is estimated that there are about 700 – 1,000 people worldwide who communicate using FC.

The Voice of Autism

Every time I watch the scene from Rain Man when Dustin Hoffmann’s Autistic character, Raymond has a meltdown, I cannot help but to feel sorry for his new-found brother and caretaker, Charlie (played by Tom Cruise).  As Charlie stands by and watches his brother have a meltdown in a crowded airport, he looks helpless, confused and scared.

CarlyWe often sympathize with the parents and guardians of autistic children and people because its difficult to imagine being in the overwhelming position of caretaker. We put focus on advocates of Autism, giving them thanks for raising awareness and funding for the cause. We praise the doctors and researchers who are studying this neurological disorder in hopes to find new causes, links and treatments that can help us to better understand Autism. We often wonder how all of these life-changing individuals get through each and every stressful day.

Parents. Caregivers. Advocates. Doctors. Researchers.

We’re forgetting someone. Actually, we’re forgetting thousands of people; those who are living with Autism.  Of course, I say this more figuratively than literally as we all know that the people who are suffering from this disorder are never forgotten.  However, they are often overlooked on the list of people who we wonder “how they have the strength to do it.”

In the years that Autism has been under the microscope, we’ve discovered how it affects the brain, what types of medications help to treat it, what types of things are linked to it, etc. It’s generally known what the symptoms are and what they look like as these are things that can be researched and proven. There are some things that you unfortunately cannot put under a microscope, particularly emotions and feelings. So, we’re left with the often unanswered question: What does it feel like to be autistic?

14 year old Carly Fleischmann was once assumed to be mentally retarded because she was unable to speak. She was diagnosed with Autism and 2 years ago began interacting with people via keyboard. The words that had been caught inside her for years were starting to come out and now she communicates very well using moderm technology.

Carly describes in detail how she feels both physically and emotionally, like no one else other than she would be able to do:

“It is hard to be autistic because no one understands me. People look at me and assume I am dumb because I can’t speak…It feels like my legs are on first and a million ants are crawling up my arms……Our brains are wired differently. We take in many sounds and conversations at once. I take over a thousand pictures of a person’s face when I look at them. That’s why we have a hard time looking at people. I have learnt how to filter through some of the mess.”

Carly also “speaks” about the things that any 14 year old girl does, like her fustrations with her siblings and her interest in the  opposite sex.  She has already inquired about when she will be allowed to go out on a date.

Though people diagnosed with Autism are deficient in many neurological areas, they still share commonalities with all of us. They do in fact have feelings and emotions. More importantly, they have unwavering amount strength and courage to be able to get up every day and deal with the often harsh,  judgmental world and the unpredictable, often terrifying reality that is Autism.

Carly has a website, Carly’s Voice, in which she shares more of her feelings and experiences, and also reaches out to other people living with Autism.  She uses  her website, Twitter and Facebook to answer readers’ questions and to provice a first hand account of what it’s like living with Autism.

I leave you with a quote from the brave and courageous Carly:

“I am autistic but that is not who I am. Take time to know me, before you judge me. I am cute, funny and like to have fun….I think the only thing I can say is don’t give up. Your inner voice will find its way out. Mine did.”