Sunday, December 25, 2011

Autism, Anxiety, Stress & Anger

Are Children with Autism more susceptible to Anxiety, Stress and Anger?

Anxiety symptoms and disorders are the number one health problem in America. One percent of the population of children in the United States ages 3-17 have an Autism Spectrum Disorder. These two facts affect the lives of thousands of families across the country. Children diagnosed with Autism are usually more susceptible to Anxiety Disorders, Stress and feelings of Anger. Autism and anxiety go hand-in-hand as does stress and anxiety. It’s challenging enough for any parent to deal with a child who is experiencing anxiety or anger but parents of an Autistic child face even greater challenges. Below are a few triggering points that cause heightened anxiety in children with Autism followed by ideas from parents on how to minimize the effects?

Change in the autistic child’s routine
You can anticipate upcoming changes and help your child prepare for them by using stories and pictures when possible. If an established routine needs to be changed or altered it’s a good idea for parents to begin to get the child accustomed to the change days before. Discuss the change with your child. Show them pictures that can help them begin to understand what might be happening. Go slow at first to gauge their receptiveness to the change. This will give parents an opportunity to see how open or understanding they are to this type of change.

Change in their environments
If you're taking a family vacation start discussing the trip a week or so ahead of time and show your child pictures pertaining to the vacation. Discuss the trip and break it up into section. Travel the place you are staying and any events you plan on doing as a family. The more you plan and introduce your child to a situation the more comfortable they will be once it happens. If you are taking a road trip make sure you have items with you that your child is use to having in the car on short trips. Parents should call ahead to find out what the facilities are like, get a brochure or website and investigate what amenities they have. Have your child be part of the planning.

Sleep Problems
While nightmares are common with all children, children with Autism have frequent sleep problems and have a much harder time calming themselves and regulating their emotional state.

You can introduce your child to relaxation music at an early age. Children can be taught simple diaphragmatic breathing exercises to help relax and calm themselves either before bedtime or during transition or stressful times. If you make it fun for the child they will respond more positively all while they are learning this empowering technique.


Wednesday, December 21, 2011

The Mindful Child

How to Help Your Kid Manage Stress and Become Happier, Kinder, and More Compassionate

The techniques of mindful awareness have helped millions of adults around the world to reduce stress in their lives. Now, children - who are under more pressure than ever before - can learn to protect themselves with these well-established methods adapted for their ages. Based on a program affiliated with UCLA, The Mindful Child is a groundbreaking book, the first to show parents how to teach these transformative practices to their children.
Mindful awareness works by enabling you to pay closer attention to what is happening within you—your thoughts, feelings, and emotions—so you can better understand what is happening to you. The Mindful Child extends the vast benefits of mindfulness training to children from four to eighteen years old with age-appropriate exercises, songs, games, and fables that Susan Kaiser Greenland has developed over more than a decade of teaching mindful awareness to kids.

These fun and friendly techniques build kids’ inner and outer awareness and attention, which positively affects their academic performance as well as their social and emotional skills, such as making friends, being compassionate and kind to others, and playing sports, while also providing tools to manage stress and to overcome specific challenges like insomnia, overeating, ADHD, hyper-perfectionism, anxiety, and chronic pain.
When children take a few moments before responding to stressful situations, they allow their own healthy inner compasses to click in and guide them to become more thoughtful, resilient, and empathetic. The step-by-step process of mental training presented in The Mindful Child provides tools from which all children—and all families—will benefit.

Sunday, December 18, 2011

Tips for Challenges with Personal Hygiene

An email from a mother…

"I have a question, how do you deal with helping children to take care of themselves, their personal hygiene. I have a 11 year old daughter who does not do the daily things without reminding, brush hair, shower, brush teeth, and she cares nothing of her appearance. Do not get me wrong, I am not big on appearance, but I do want her to look presentable and clean. (brushed hair etc.) Any advice?"

Personal hygiene is often a challenge of those on the autism spectrum. It is equally if not more of a challenge with boys. Kids, teens and young adults want to have friends. But lack of understanding of how they appear to others and poor personal hygiene contribute to autism spectrum disorder (ASD) kids having so many problems both getting and keeping friends.

Why those with AS don’t understand personal hygiene
Because those with autism spectrum disorders (ASD) have such difficulty reading social cues, they can’t seem to pick up on the “social slang” that their peers use; they can’t talk easily and casually like so many of their peers do. Because of this, they are often shunned. They can’t break into conversations. They stand just on the outside, looking in. 

Contributing to this is social ridicule and bullying that can occur with being different—whether that is lack of understanding how to dress or looking (and smelling) bad! Those with ASD want friends but can’t figure out how to get them; some don’t have any desire for them. 

For those who want them but can’t figure out how to make friends, it can be especially painful. They try the best they know how; maybe they talk about spaceships and current events and politics. Topics that make sense to them. They don’t know that these topics don’t interest their peers. They might try to copy their friends’ language and words but it comes out sounding forced and scripted. Most of their peers just don’t have the patience for their oddity and awkwardness. 

Making matters worse is their lack of understanding that personal hygiene is important! Other people do not want to be around a person who they perceive as dirty, has bad breath or never combs her hair.

Three Strategies that often work
  1. Relate the behavior change to something concrete. One way to instill the necessity of personal hygiene is to explain to your daughter that in order for her to have friends, she needs to stay clean—brush her hair, her teeth, take showers and wear deodorant. Other kids pick up on these issues naturally or get “hints” from their peers. This is not the case with many ASD kids.   
  2. Explain why they should care. The best way to change behavior of an ASD child is to explain to them why it is important—in a way that makes them want to change. Most all kids want friends. Associating staying clean with having friends can motivate a child or teen to focus on these issues.   
  3. Be specific. Hints often fall short when communicating with a person with autism. This is true whether they are 5, 15 or 55. Explain that if she does not use deodorant she will smell very bad and people will not want to be near here.

Use something that is important to your loved one as a motivator
Try using something that is important to your child as a link to their own motivation, to reduce your having to remind and prompt all the time. 

For example, most (even autistic) teens want friends and want dates with the opposite sex. Helping her understand that stinky armpits, greasy hair, and nose picking might hinder her from getting what she wants will—hopefully—building some inner motivation. It’s still a long haul though. Just remind her of what is important to HER.

It is all about their self-interests, not yours!
Younger loved ones with ASD are often rather indifferent to what people think of them as long as nobody is making fun of them or bullying them. A mom tells how she motivates here 13 year old autistic son…

"He is VERY committed to having long hair (something about a world’s record…) so that is MY key to motivating him to keep himself clean and combed. He also gets pretty bad acne around his hairline if his hair isn’t clean. I regularly remind him that if he chooses to avoid washing his hair he is choosing to have me cut his hair short (or even “shave it off” if I’m really frustrated! You know, just sayin’). He’s even taken to treating his acne with Proactive and is more interested in washing his face now because he knows he’ll lose something that is important to him if he doesn’t. It’s all about their self-interest and not at all about what is important to me, though.
Did you watch the HBO film on Temple Grandin? In one scene, as she’s an adult with a job, her boss walks past her slamming a can of deodorant on her desk and speaks bluntly: “It’s deodorant, Temple. Use it. You stink!” The blunt approach is what works best for my boys. It seems harsh, but as Craig says, the subtle teen clues that other’s use isn’t getting through to our kids."


Wednesday, December 14, 2011

Safety Skills for Asperger Women

How to Save a Perfectly Good Female Life

Life with Asperger Syndrome can be a challenge at the best of times, and trials and tribulations that neurotypicals take in their stride can leave Aspies perplexed and unsure of how to solve problems and keep themselves safe, both physically and emotionally. Liane Holliday Willey explores the daily pitfalls that females with AS may face, and suggests practical and helpful ways of overcoming them.

The focus throughout is on keeping safe, and this extends to travel, social awareness, and general life management. With deeply personal accounts from the author's own experiences, this book doesn't shy away from difficult issues such as coping with bullying, self-harm, depression, and eating disorders.

The positive and encouraging advice gives those with AS the guidance to safeguard themselves from emotional and physical harm, and live happy and independent lives.

This book will be essential reading for all females with Asperger Syndrome, their friends and families, and all professionals whose work brings them into contact with females with AS.    

Monday, December 12, 2011

Lego Autism Therapy

VOORHEES, N.J. — The Lego raft carrying the Lego castaways approached the Lego island, “chased by raptors.”

Lewis Roberts, a 12-year-old from Medford, N.J., moved the raft an inch, then another young filmmaker snapped a digital camera. A third boy consulted their script.

“Quiet on the set!” In the sudden silence, the boys let out a raptor-like “ROAR.”

Lego animation is like a cartoon. The illusion of movement is created with a sequence of slightly different photographs of the colorful plastic brick construction sets.

But this wasn’t just fun and games. It was “Dr. Dan’s Lego-based Social Development Therapy” _ one of the many interventions that have been developed to teach social skills to children with autism.

The eight preadolescent boys who gathered one evening recently in the playroom at the Center for Neurological and Neurodevelopmental Health in Voorhees, N.J., have been diagnosed with some form of the mysterious malady.

Their weekly hour together under the watchful guidance of three trained adult leaders helps them learn to interact and communicate socially _ crucial abilities that are, by definition, impaired by the neurological disorder.

“They’re willing to be social creatures _ as long as they can get this Lego thing built,” said the aptly named Daniel “Dr. Dan” Legoff, the center’s pediatric neuropsychologist.

At first glance, the $45 session just looked like a bunch of boys having fun, not surprising since Lego Club members have good language skills and average or above-average intelligence. In contrast, children at the severe end of the autism spectrum may be mute and have catatonic behaviors.

But signs of problems were soon evident. A boy wearing a long-sleeve T-shirt stood amid the hubbub, staring at the floor, obsessively pulling the hem of his shirt _ until leader Greg Shugar gently drew him into an activity. At a table, Lily Brown, another leader, helped two boys revise their “script” _ a sheet of lined paper covered with angry scratch-outs and scribbles.

Jonathan Shanahan, 13, of Riverton, N.J., rocked from foot to foot and acknowledged that earlier that day, in school, he threw a pencil at a classmate.

“He’s my archrival,” Jonathan declared, holding a winged Lego beast he had created.

Autism is a heartbreaking puzzle. The cause is unknown, although theories abound and genetics seem to play a role. The incidence of autism has increased dramatically over the last few decades, yet no one knows whether this reflects greater awareness and improved diagnosis, or environmental changes, or both.

The encouraging thing, said Mark Mintz, president and founder of the center where the boys were gathered, is that early intervention usually helps: “You can change the developmental biology.”

The surest way of doing that is unclear. Countless approaches, techniques and medications _ not to mention alternative therapies, special diets and vitamin injections _ are available. Few have been subjected to rigorous studies of effectiveness.

In Legoff’s opinion, too many popular strategies involve “skillstreaming” _ systematically explaining, modeling, and role-playing acceptable social skills to children.

“I found that approach to be, first, boring and painful to go through for the kids. And second, it didn’t seem to work,” said the psychologist, who has treated children with neurological disabilities for 20 years. “I needed to find something that they could practice but that they would enjoy and be motivated to do.”

About 15 years ago, during post-doctoral training in Honolulu, Legoff noticed that his autistic patients, most of them boys, ignored a playroom full of toys _ except for Legos.

A hallmark of autism is an obsessive dedication to one or two interests or activities _ typically involving taxonomies, mechanical systems, hierarchies.

“A couple kids came with Lego creations they made at home,” Legoff recalled. “In the waiting room, these kids started talking to one another, which surprised their parents. These are kids that don’t have any friends because they’re socially rejected or isolated.”

Thus was born the Lego Club.

To force communication and collaboration, Legoff assigned rotating roles. The “engineer’s” design had to be acceptable to the “builder,” who had to get parts from the “supplier.”

Jonathan’s year-old group, one of eight at the center in Voorhees, has reached the club’s premier level _ “master builder” _ so now members devote their sessions to producing stop-action videos. These are shown at the Lego Club’s annual “film festival,” attended by adoring fans (relatives).

“I feel bringing Lewis here has brought him out of himself,” said Karen Roberts, mother of one of the filmmakers. “He’s loved Legos since he was a tiny kid. But before this, he didn’t really socialize a lot.”

Lynda Shanahan, Jonathan’s mother, said: “I wouldn’t say he has dramatically changed since coming here. The diagnosis is like layers: Peel away one problem and another comes up. But I have seen growth. This has helped him get a group of friends where he fits in. It’s built his self-esteem.”

Legoff _ who says he’s tried and utterly failed to get freebies from the Lego company _ has made modest efforts to popularize his therapy. He has published two studies of its effectiveness in medical journals. He has given presentations to several school districts.

And he has done collaborative research on the methodology with Simon Baron-Cohen, a distinguished psychologist at Cambridge University’s Autism Research Centre in England.

Sunday, December 11, 2011

Autism and Religion (Jewish)

"The Jewish Perspective"   

By Joshua Weinstein

Before Passover, my other children enthusiastically presented me with the projects they had made in Yeshiva (Hebrew school). My heart sank when my son who has autism and attends a public school brought me his book bag, which I opened only to find the Easter egg he had painted in class. My son knows how to say the "Shema" prayer, but can also tell me stories about Santa and the Reindeer.

We have accepted that God has chosen for us to have a child with autism. When he became of school age and we sought to provide him with a Jewish education, we were extremely disheartened to learn that not a single school program existed that would serve the needs of Jewish children with autism. Doesn't each and every Jewish child deserve the opportunity to receive a Jewish education to the best of their individual abilities? -Excerpt of a letter from a parent to the Shema Kolainu School

This was my first introduction to the pain and feelings of a Jewish parent on her inability to send her child to a school of her choice that would help keep the family identity. There were no Jewish schools using ABA (Applied Behavior Analysis, an intensive behavioral intervention technique) for children with autism anywhere in the United States.

Since I founded Shema Kolainu, the first Jewish school using ABA on a one-to-one basis for children with autism in the U.S. in 1988, we have been flooded with phone calls from heartsick parents on a daily basis. Although not a religious school, Shema Kolainu fulfills the need to learn about Jewish culture and heritage as well as focus on the bilingual needs of its students. Our programs and services are designed to accommodate a broad range of functional levels and varying degrees of disabilities. Students are taught about Jewish holidays through music and arts and crafts, to give tzedakah (charity) at circle time, to say and read the Aleph Beth (alphabet), and are taken to a matzo bakery to bake matzos before Passover, to name a few.

The official name of our school is Shema Kolainu, which means Hear Our Voices. Hearing the voice of the child and the family means assisting the child to reach his or her potential, both in an academic setting as well as a community setting. It is not enough for a child to achieve in the classroom and then not have the skills needed to be successfully integrated into their community and partake of his or her own culture and heritage. This is extremely important and beneficial for the individual with autism, the family, and the community at large.

Rituals and Individuals with Autism
Children who have autism spectrum disorders benefit greatly from consistency. The Jewish religion has practices such as daily prayer and weekly ceremonies in a synagogue. One mother told me how her 16-year-old daughter who has autism attends synagogue each week, uses a prayer book, and even answers "AMEN" along with the congregation. A local synagogue gives a young person with autism the honor of collecting the prayer books after services.

Below are other examples of activities in which children with autism may be encouraged to participate:

  • opening and closing the ark before the Torah (Jewish scripture) is read
  • helping the reader turn page numbers
  • assisting in preparing and setting up the Kiddush (Sabbath reception)
  • helping to put away the prayer shawls after service
Familiarity with these practices from an early age promotes greater inclusion into the community as adults and helps some children to better understand their cultural and religious practices.
Special Ceremonies
Ceremonies can be a wonderful and meaningful experience for both the child and his or her family. When a Jewish child turns 12 or 13 years old, he or she undergoes a ceremony called a Bar Mitzvah (boys) or Bat Mitzvah (girls), which symbolizes entrance into the realm of adulthood and the observance of mitzvahs (positive deeds).

A child with autism, depending on his or her functioning level, can participate in a variety of ways:
  • some may be called to read from the Torah
  • others may recite a passage from a prayer book
  • still others may recite a Bar Mitzvah speech
One family chose to make a Bar Mitzvah for their son with autism. They invited family and people who had made a difference in their son's life over the years. The mother says emphatically that this was the best decision she has ever made. Her son enjoyed the ceremony and reception, and the family felt comforted to know that they were surrounded by people who love and support them. Their son's favorite activity is to look through his Bar Mitzvah album and watch himself on the video.

The holidays can be a stressful time for a person with autism because it is a breach in their daily routine. If a child is educated about the holidays before they arrive, he or she will be more comfortable and feel at ease. This, in turn, will alleviate much stress from the family.

It is important, therefore, to remember to apply the techniques used to involve the individual with autism in daily activities to these special activities. The individual with autism may be asked to participate at some level in many rituals or ceremonies, such as:
  • the weekly Sabbath festivities in the home
  • the Sabbath festivities at the synagogue
  • the Passover Seder
  • Chanukah candle lighting
All of these activities create a bonding between the parent and child and the community at large.

Judaism and Special Children
Judaism has strong traditions regarding special children. It is said that Chazan Ish, a great Rabbi, always stood up when a special child entered the room because he said that their souls are lofty and pure.

Even so, a local synagogue may need some guidance and sensitization to the needs of its special congregants. If there are issues that arise concerning a person with autism or other special needs, it is a good idea to set up a private appointment with the rabbi.

Issues that can arise may include a child's disruptiveness during services, inclusion into youth group activities, and fostering greater understanding and sensitivities from members of the congregation toward the population with autism.

Inclusion of people with autism and other disabilities into our community and places of worship is beneficial to us all. We can all learn a tremendous amount from them about patience, perseverance, dedication and sincerity.

When we introduce an individual with autism into a religious community and help them relate to the holidays, customs and celebrations become more meaningful to everyone. This, in turn, helps those in the community understand the child better as he or she performs certain rituals together. This brings parents and siblings closer to their child with autism, and benefits both the family members and everyone close to them.

It may sound cliché, but the following statement is both apt and true: "Families that pray together stay together."

Joshua Weinstein, M.Ed., MBA, is the President and founder of Shema Kolainu - Hear Our Voices, the first Jewish school for children with autism in the U.S.

Saturday, December 10, 2011

Autism and Religion (Christian)

"The Christian Perspective"  

By Terri Connolly

The church experience is often one of generational tradition for many families. Other families recognize their need for a place of spiritual refuge and nurturing for the first time in their lives when they have children or at other trying times.

Christ's example of "agape," or unconditional love, is paramount to our understanding of the role of acceptance in the church. Too many parents and siblings, as well as the individual with autism, are asked to leave or feel so uncomfortable that they lose this most precious part of their lives, and at a time when they are most in need.

The behaviors associated with autism often present challenges for the family church experience, yet I often find myself wondering: "If not church, then where can an individual be accepted exactly as they are with unlimited love and inclusion?" Families of faith need to find a church where all of its members can be nurtured. By integrating the individual with autism as a regular member of the church, with resource help and community-wide education, the church becomes accessible to the whole family, and the family, in turn, is strengthened through shared faith experiences.

Tips to Supporting Inclusion
Initiate contact. lnitially, parents may want to contact the pastor or Sunday School teacher to introduce themselves and prepare them to provide a successful experience for everyone. Include information about educational goals and discuss communication methods.

-Discuss your expectations. 
When attending a worship service, it would be wise to discuss with the worship leader what he/she might expect. In return, the worship leader should offer supports to the family, such as someone to stay with siblings should the parents need to leave during the worship service or to accompany the individual with autism to another comfortable place should he or she become distressed.

-Be prepared. 
Most experienced parents know that all children and many adults become fidgety during church. Being prepared with a quiet object of concentration, such as a rubber band, pictures, books, or an object of visual focus, can be very helpful, particularly if it has religious significance to enhance the worship experience in a different way. Items that provide comfort and security at home might be made available at church.

-Get acclimated. 
Since it is thought that many individuals with autism experience things holistically, attention should be given to the sights, sounds, and even smells within the sanctuary or classroom. A visit to the sanctuary and classroom in a church when they are empty might give the individual an opportunity to explore in ways that might be inappropriate when crowded. With special permission, one might also explore the organ or piano to prepare the individual for the sudden and sometimes loud sounds during worship.

-Teach by example. 
The worship leader may comfortably acknowledge any distracting behavior with a simple, sincere acknowledgment. "So glad you could join our worship today, Tom," after which the worship leader continues as if Tom's participation is perfectly natural. The worship leader's acceptance is very important. Sensitivity and joint strategy planning are critical.
-Develop peer partners. 
In order to help relationships and friendships blossom, peer partners who rotate responsibility for assistance can help to create a wide base of support for the individual while fostering a truer atmosphere of inclusion.

-Help the individual feel welcome. 
Several adults or children should assume quiet lay leadership roles by greeting the individual with eye contact, a "Hi, Bryan," a high-five, a popular stylized handshake, or a pat on the shoulder. It is often this simple, yet critical initiation that communicates the gospel message. A kind of "underground" effort of greeting creates a wonderful atmosphere of acceptance.

-Stand firm. 
Finally, the family should stand firm in their belief that we all have a place in the worship experience. When one member is missing, the experience of all is diminished.

Younger Children and Sunday School
In being part of the community of faith, all individuals need the opportunity for active participation. Doing what others do promotes a feeling of inclusion. For children in Sunday School, the following ideas have been successful:

-Use the Bible. 
Encourage the child to hold the Bible open to the appropriate page. Use a bookmark or guide the child's hand to follow as others read aloud.

-Ensure participation. 
Pass a ball or talking stick while sharing or learning parts of a memory verse. The child with autism is the assured a chance to participate with the help of another to communicate the message. A notebook from home could tell about experiences and add prayer requests, if necessary.

-Rotate buddies. 
Remember to encourage multiple friendships and acquaintances by rotating peer escorts and buddies.

-Use visual cues. 
Use extra visual cues, such as pictures, during a story at any age level. Quietly reword a story as needed so that it is understandable to the individual.

-Encourage imitation. 
Encourage, but do not force, imitation of body postures, such as bowing one's head and clasping hands for prayer, standing to sing, and looking toward the person who is speaking. This will certainly vary with the individual, but it helps to create an attitude of prayer and participation.

Older Youth and Participation
Older youth and adults with autism can participate partially or fully in different ways, just as most youth and adults without autism. Encouraging participation and service to others is important for the individual as well as the community.

The following suggestions are based on the approach that was used with a particular individual with autism:
  • Greet people with a smile, and hand out service bulletins.
  • Gather up the bulletins and papers left in the pews after the service, restoring order to the sanctuary.
  • Carry the offering plates to the safe following the service. Deliver crackers and juice to the little ones in the preschool classes.
  • Collect and deliver Sunday School attendance records to the attendance clerk.
  • Assist in the delivery of cards or food to homebound individuals.
  • Participate with deacons in the packaging and delivery of food and toys to the needy during the holidays.

Christians celebrate the birth of Christ with much pageantry, tradition, and cultural ritual. Augmenting the typical worship service adds to the richness of meaning, while making the celebration more personal.

Talk about the spiritual aspects of the Christmas time in normal daily conversations. Describe the upcoming ritual and pageantry through simpler methods, such as through pictures, role-playing, and storytelling.
Bring a special item that might represent some element of the holiday celebration that can be held during worship. It may be a piece of textured "swaddling cloth," a shiny star, nativity figures, or cinnamon sticks. One symbolic item brought forth at the right moment may become part of the holistic experience of celebration.

During the service, follow along in the bulletin and prepare the individual for the moment any loud, dramatic music is to occur. Covering the individual's ears and gradually uncovering them may work. However, be prepared if does not; what is musical to one person may be cacophonous to another.

Giving Gifts - A Unique Approach
One church that I know has a wonderful celebration in early December where they gather to recognize the natural talents and spiritual gifts of its members -a bit of a twist on the gift-giving theme. From young to old, with talents that range from the artistic and musical to gifts of compassion and hospitality, many are recognized and encouraged. It would be a wonderful tradition for any church to duplicate.

As for the individual with autism, I know of one individual who has amazing attention to visual detail, which could be displayed with examples of his or her favorite pictures. I know of another person who has the warmest smile I have ever seen. This friend also demonstrates amazing altruism, and would make a wonderful greeter.

Community ResponsibilityIntroduce the concept that the responsibility for every member of the congregation is a corporate, shared responsibility. This is a true fellowship. The participation and inclusion of individuals with autism should not rest on the shoulders of one or even a few volunteers who are "trained" or ''assigned." Children and youth will need guidance to facilitate inclusion, as will many adults. Gradually, the focus of special assistance should fade as everyone accepts shared responsibility.

It takes effort and intention to help a person with autism discover his or her gifts. But in doing this exercise, we all would be challenged to focus on what the individual can do. By providing for inclusion of one individual, we meet the needs of each individual in the family by allowing their full participation in a faith community.

Terry Connolly is the mother of five children and an active member of the Highland Baptist Church in Louisville, KY. She has a Master's degree in Special Education and provides consultation and training in early childhood development.

Friday, December 9, 2011

Liane Holliday Willey

Liane Holliday Willey is an author, avid horsewoman and owner of an equestrian show barn. She has her doctorate of education with a specialty in pschyolinguistics. She taught at the university level for over 15 years.

Liane likes to share her experiences of living with Asperger's syndrome with audiences world wide, including in her presentations humor and positive insight along with the real and not so happy memories she has gathered in her almost 50 years.

A good day for Liane includes time with her children, a ride on her horse, late hours with a good book and lots of TV. You can reach Liane at or


Wednesday, December 7, 2011

Autism and the Myth of the Person Alone

Biklen, Douglas
Trade Paper, New York University, 2005 ISBN: 0814799280

Autism has been defined by experts as a developmental disorder affecting social and communication skills as well as verbal and nonverbal communication. It is said to occur in as many as 2 to 6 in 1,000 individuals. This book challenges the prevailing, tragic narrative of impairment that so often characterizes discussions about autism. 

Autism and the Myth of the Person Alone seriously engages the perspectives of people with autism, including those who have been considered as the most severely disabled within the autism spectrum. The heart of the book consists of chapters by people with autism themselves, either in an interview format with the author or written by themselves. 

Each author communicates either by typing or by a combination of speech and typing. These chapters are framed by a substantive introduction and conclusion that contextualize the book, the methodology, and the analysis, and situate it within a critical disability studies framework. 

The volume allows a look into the rich and insightful perspectives of people who have heretofore been thought of as uninterested in the world.

Thursday, December 1, 2011

Strengths & Advantages of being an Aspie!

Asperger’s Syndrome is NOT all about dysfunction and disability etc. There are many good points and advantages to being an Aspie. Here’s a refreshingly different perspective from the medical profession,  by Dr Tony Attwood…

Friday, November 25, 2011

Asperger's Syndrome and Mindfulness

Understanding who you are can be a lonely and difficult process following the diagnosis of Asperger's Syndrome (AS). Asperger's Syndrome and Mindfulness illuminates this experience as an empowering path of discovery through the teachings of Buddhism.

Chris Mitchell draws parallels between the experience of his own journey towards personhood through AS and the spiritual tenants of Theravada Buddhism, as outlined through the Eightfold Path, a guideline to personal development. Worry and anxiety, confusing desires or negative thoughts are among the everyday hindrances a person with AS faces. This book takes the reader through the key beliefs of Theravada Buddhism, such as Mindfulness and the Four Noble Truths, showing how practices such as Insight Meditation can lead to a positive resolution of these feelings.

Talking openly about his own personal experiences, Chris Mitchell provides helpful tips and suggestions for improving confidence and self-esteem towards an overall better sense of self that will be of interest to anyone diagnosed with AS or their family and friends.

Wednesday, November 23, 2011

Loving the Tasmanian Devil

- Reflections on Marriage and Asperger Syndrome

Having a partner with Asperger Syndrome can feel like a roller-coaster ride for the neurotypical spouse -- riding high one moment on the spouse’s charming quirkiness, only soon to spiral downward, exhausted and discouraged -- sometimes by the very same traits, which have suddenly taken new forms of expression. 

In this charming and well-written book, the author combines research on autism spectrum disorders and her vast knowledge of literature, pop music, and philosophy with accounts of daily life on a large dairy farm with three sons and a husband with an ASD. 

In sharing the ups, the downs, the growth, and the regression in their particular AS-NT journey, the author hopes that others on a similar path may find humor, recognition, and ways to view the unique life of loving an Aspergian from a new angle. 

The book will also appeal to those curious about ASD and how it affects someone’s life and love. Any reader in a long-term relationship will resonate to the challenges and joys of living in such close relationship with another.

If you want, you can follow the writer's blog HERE

Saturday, November 19, 2011

Aspergers Emotions and Adult relationships

It has been often said, or implied, that people with Asperger's don't feel emotion. Anyone who's known me through the years can testify that that is absolutely not true. As with many others with Asperger's, I feel emotion, and feel them intensely, sometimes more so than a person who did not have Asperger's.

When it boils down to it, I believe the root of this assumption goes back to the difficulties that many with Asperger's have with communication.

Difficulty in expressing emotions in a way that people outside the autistic spectrum can understand, can lead to ongoing challenges and problems in personal relationships, both big and small. 

This can cause people with Asperger's to be perceived as uncaring or as lacking accountability, while the reality may be the opposite - they may be internally beating themselves up, but just don't know how to communicate it, make it right or how to comfort the other person. They are simply, "At a loss."

Another area that can badly affect relationships is emotional regulation. Just as the neurological system can be less than efficient in handling sensory input, so can it be with emotional input. A person with Asperger's may feel raw emotion, but not be able to immediately identify it or its cause. Not only does this cause breakdown in communications in common, everyday situations, it can also be very dangerous.

The inefficient processing of emotion can be very draining - as the emotion temporarily takes over it can impede awareness and rational thought. The emotional warning signs that are meant to protect you from difficult or harmful situations may malfunction, or work with such a delay that they lose effectiveness. This means that they may be less than prepared to defend themselves verbally (or, in bad situations, physically) in an argument or conflict.

When I think of this, I think of the old stereotypes, used often in movies and sit-coms, of a school bully who says something mean to a "geek" type character, who doesn't immediately respond in an appropriate way, but then a moment later says, "Heeey!" The indicators that should have told him that the teasing was not OK, worked at such a slow pace, that his own delayed response becomes further feed for the bully, who sees it as a sign of weakness and/or stupidity. Typically, it garners a laugh from the TV or movie audience, too.

At worst, the grown up equivalents of these situations can be much less than funny. Since the social issues of those on the spectrum often cause them to be naïve, it can be very easy for them to be preyed upon. An adult who gets involved with a violent, abusive, or manipulative person, is then doubly vulnerable. In an emotional situation the delayed response/awareness may then open them up to further exploitation.

It can also be dangerous, because the energy and focus necessary to sort things out when in an emotional state can also cause someone to be injured due to a reduced awareness of the physical world around them. In that state, a person could walk unaware into a dangerous area of town, walk out in front of a moving vehicle, or trip or fall.

Another reason that people with Asperger's may be perceived as "not having emotion" is that they may have different triggers than a person who did not have Asperger's. Because people with Asperger's tend to be concrete and literal, they may struggle to identify with, and therefore be emotional about, situations which they do not have a direct connection to, such as global tragedies, or people on the news. But, they may be very upset and emotional if their schedule is changed, or their environment is tampered with in some way. My stepfather, whom I strongly suspect had Asperger's, seemed very untouched by large scale tragedies in the news, but would become extremely upset if his ashtray was moved from its customary location.

Of course, like most situations, there can be a plus side to the emotional difficulties, too. I've heard of some people with Asperger's who were very good in certain crisis situations, because of their emotional detachment. The delayed emotional response gave them the initial ability to respond to a crisis without feeling anything at all, then if they could learn to not engage the emotion and defer its processing to an appropriate time, they were then able to keep a cool head. I have myself used this tactic in certain problem situations at work. My ability to not immediately emotionally react to a boss or client that was being testy or unreasonable has often been a distinct advantage, and saved me from the pushback or retribution others received. However, in those situations, self-monitoring is critical to ensure that you're being assertive and looking out for your own interests (not being a doormat).

On the bad side, unchecked, these emotional processing and communications issues can wreak havoc on a person's ability to build and sustain adult relationships. For those of us who strongly desire human interaction, they can create very painful situation. As with many things, though, I think awareness is the key. If you, and those that care about you, are aware of why these issues happen, it makes a big difference. In fact, it does some of the communication for you, because it can change the paradigms of both you and the other person, so that your presuppositions are not running at cross purposes. You know how to interpret each other, and, crucially important, what's going on with yourself. I continue to learn every day - and I hope never to stop.

Based on an article on Psychology Today's blog: Asperger's Diary

Want to read more?
Books on Marriage and Aspergers syndrome

Wednesday, November 16, 2011

'Nightline' Looks at Adult Autism

More than 1 million Americans are autistic. It's the fastest-growing developmental disability, estimated at one in 166 births a year. Much has been reported on autistic youth and as we come to terms with this trend among children, many wonder: What happens when all these children grow up?

As ABC News correspondent John Donvan reports, a significant challenge facing these families is establishing enduring support for their children to last through adulthood and life. Jim and Jen Hoppe -- whose 21-year-old daughter, Jamie, is profoundly autistic -- helped develop a school where Jamie made enormous progress for 16 years.

For the parents of Paul DiSavino, who is 36 and autistic, the concern now is what will happen to their son when they are gone. Their current solution is a group home, but the alternative would be unbearable. Says Paul's mother, Marlene, "He will not survive it ... it would be regressing back to the institutions, back to not caring, just doing, just warehousing them ... not recognizing what's important, and just abandoning them."

Saturday, November 12, 2011

Adults with Autism Spectrum Disorder

Some adults with ASD, especially those with high-functioning autism or with Asperger syndrome, are able to work successfully in mainstream jobs. Nevertheless, communication and social problems often cause difficulties in many areas of life. They will continue to need encouragement and moral support in their struggle for an independent life.

Many others with ASD are capable of employment in sheltered workshops under the supervision of managers trained in working with persons with disabilities. A nurturing environment at home, at school, and later in job training and at work, helps persons with ASD continue to learn and to develop throughout their lives.

The public schools’ responsibility for providing services ends when the person with ASD reaches the age of 22. The family is then faced with the challenge of finding living arrangements and employment to match the particular needs of their adult child, as well as the programs and facilities that can provide support services to achieve these goals. Long before your child finishes school, you will want to search for the best programs and facilities for your young adult. If you know other parents of ASD adults, ask them about the services available in your community. If your community has little to offer, serve as an advocate for your child and work toward the goal of improved employment services. Research the resources listed in the back of this brochure to learn as much as possible about the help your child is eligible to receive as an adult.

Living Arrangements for the Adult with an Autism Spectrum Disorder
Independent living. Some adults with ASD are able to live entirely on their own. Others can live semi-independently in their own home or apartment if they have assistance with solving major problems, such as personal finances or dealing with the government agencies that provide services to persons with disabilities. This assistance can be provided by family, a professional agency, or another type of provider.

Living at home. Government funds are available for families that choose to have their adult child with ASD live at home. These programs include Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid waivers, and others. Information about these programs is available from the Social Security Administration (SSA). An appointment with a local SSA office is a good first step to take in understanding the programs for which the young adult is eligible.

Foster homes and skill-development homes. Some families open their homes to provide long-term care to unrelated adults with disabilities. If the home teaches self-care and housekeeping skills and arranges leisure activities, it is called a“skill-developmen” home.

Supervised group living. Persons with disabilities frequently live in group homes or apartments staffed by professionals who help the individuals with basic needs. These often include meal preparation, housekeeping, and personal care needs. Higher functioning persons may be able to live in a home or apartment where staff only visit a few times a week. These persons generally prepare their own meals, go to work, and conduct other daily activities on their own.

Long-term care facilities. This alternative is available for those with ASD who need intensive, constant supervision.

Want to read more?
Go to this page with Books about Autism on Amazon  

Wednesday, November 9, 2011

Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure

Offit, Paul
Trade Cloth, Columbia, 2008 ISBN: 0231146361

A London researcher was the first to assert that the combination measles-mumps-rubella vaccine known as MMR caused autism in children. Following this "discovery," a handful of parents declared that a mercury-containing preservative in several vaccines was responsible for the disease. If mercury caused autism, they reasoned, eliminating it from a child's system should treat the disorder. 

Consequently, a number of untested alternative therapies arose, and, most tragically, in one such treatment, a doctor injected a five-year-old autistic boy with a chemical in an effort to cleanse him of mercury, which stopped his heart instead. 

Children with autism have been placed on stringent diets, subjected to high-temperature saunas, bathed in magnetic clay, asked to swallow digestive enzymes and activated charcoal, and injected with various combinations of vitamins, minerals, and acids. 

Instead of helping, these therapies can hurt those who are most vulnerable, and particularly in the case of autism, they undermine childhood vaccination programs that have saved millions of lives. An overwhelming body of scientific evidence clearly shows that childhood vaccines are safe and does not cause autism. Yet widespread fear of vaccines on the part of parents persists. 

In this book, Paul A. Offit, a national expert on vaccines, challenges the modern-day false prophets who have so egregiously misled the public and exposes the opportunism of the lawyers, journalists, celebrities, and politicians who support them. 

Offit recounts the history of autism research and the exploitation of this tragic condition by advocates and zealots. He considers the manipulation of science in the popular media and the courtroom, and he explores why society is susceptible to the bad science and risky therapies put forward by many antivaccination activists.

Saturday, November 5, 2011

!0 things you should know about Autism!

1. Autism Is a 'Spectrum' Disorder
People with autism can be a little autistic or very autistic. Thus, it is possible to be bright, verbal, and autistic as well as mentally retarded, non-verbal and autistic. A disorder that includes such a broad range of symptoms is often called a spectrum disorder; hence the term "autism spectrum disorder." The most significant shared symptom is difficulty with social communication (eye contact, conversation, taking another's perspective, etc.).

2. Asperger Syndrome is a High Functioning Form of Autism
Asperger Syndrome (AS) is considered to be a part of the autism spectrum. The only significant difference between AS and High Functioning Autism is that people with AS usually develop speech right on time while people with autism usually have speech delays. People with AS are generally very bright and verbal, but have significant social deficits (which is why AS has earned the nickname "Geek Syndrome").

3. People With Autism Are Different from One Another
If you've seen Rainman or a TV show about autism, you may think you know what autism "looks like." In fact, though, when you've met one person with with autism you've met ONE person with autism. Some people with autism are chatty; others are silent. Many have sensory issues, gastrointestinal problems, sleep difficulties and other medical problems. Others may have social-communication delays - and that's it.

4. There Are Dozens of Treatments for Autism - But No 'Cure'
So far as medical science is aware, there is at present no cure for autism. That's not to say that people with autism don't improve, because many improve radically. But even when people with autism increase their skills, they are still autistic, which means they think and perceive differently from most people. Children with autism may receive many types of treatments. Treatments may be biomedical, sensory, behavioral, developmental or even arts-based. Depending upon the child, certain treatments will be more successful than others.

5. There Are Many Theories on the Cause of Autism, But No Consensus
You may have seen or heard news stories about possible causes of autism. Theories range from mercury in infant vaccines to genetics to the age of the parents to almost everything else. At present, most researchers think autism is caused by a combination of genetic and environmental factors - and it's quite possible that different people's symptoms have different causes.

6. Children Rarely "Outgrow" Autism
Autism is ausually lifelong diagnosis. For some people, often (but not always) those who receive intensive early intervention, symptoms may decrease radically. People with autism can also learn coping skills to help them manage their difficulties and even build on their unique strengths. But a person with autism will probably be autistic throughout their lives.

7. Families Coping with Autism Need Help and Support
Even "high functioning" autism is challenging for parents. "Low functioning" autism can be overwhelming to the entire family. Families may be under a great deal of stress, and they need all the non-judgemental help they can get from friends, extended family, and service providers. Respite care (someone else taking care of the person with autism while other family members take a break) can be a marriage and/or family-saver!

8. There's No 'Best School' for a Child with Autism
You may have heard of a wonderful "autism school," or read of a child doing amazingly well in a particular type of classroom setting. While any given setting may be perfect for any given child, every child with autism has unique needs. Even in an ideal world, "including" a child with autism in a typical class may not be the best choice. Decisions about autistic education are generally made by a team made up of parents, teachers, administrators and therapists who know the child well.

9. There Are Many Unfounded Myths About Autism
The media is full of stories about autism, and many of those stories are less than accurate. For example, you may have heard that people with autism are cold and unfeeling, or that people with autism never marry or hold productive jobs. Since every person with autism is different, however, such "always" and "never" statements simply don't hold water. To understand a person with autism, it's a good idea to spend some time getting to know him or her - personally!

10. Autistic People Have Many Strengths and Abilities
It may seem that autism is a wholly negative diagnosis. But almost everyone on the autism spectrum has a great to deal to offer the world. People with autism are among the most forthright, non-judgemental, passionate people you'll ever meet. They are also ideal candidates for many types of careers.

Wednesday, November 2, 2011

One Of Us: A Family's Life With Autism

Osteen, Mark
Hardcover, University of Missouri, 2010 ISBN: 0826219020

Plenty of recent bestsellers have described the hardships of autism, but those memoirs usually focus on the recovery of people who overcome some or all of the challenges of the disorder. And while that plot is uplifting, it's rare in real life, as few autistic children fully recover. 

The territory of severe autism of the child who is debilitated by the condition, and who will never be cured has been largely neglected. One of Us: A Family's Life with Autism tells that story. 

In this book, Mark Osteen chronicles the experience of raising his son Cam, whose autism causes him aggression, insomnia, compulsions, and physical sickness. In a powerful, deeply personal narrative, Osteen recounts the struggles he and his wife endured in diagnosing, treating, and understanding Cam's disability, following the family through the years of medical difficulties and emotional wrangling. One of Us thrusts the reader into the life of a child who exists in his own world and describes the immense hardships faced by those who love and care for him. 

Leslie and Mark's marriage is sorely tested by their son's condition, and the book follows their progress from denial to acceptance while they fight to save their own relationship. By embracing the little victories of their life with Cam and by learning to love him as he is, Mark takes the reader down a road just as gratifying, and perhaps more moving, than one to recovery. 

One of Us is not a book about a child who overcomes autism. Instead, it s the story of a different but equally rare sort of victory the triumph of love over tremendous adversity.

Tuesday, November 1, 2011

Autism disorders to be covered under new law

ALBANY — A measure requiring health insurers to cover autism disorders was signed into law this afternoon, making New York the 29th state to enact such coverage mandates for the complex neurobiological disorder.

An estimated 30,000 children in New York are afflicted by autism spectrum disorders, such as Asperger's and Rett's disorder, that affect social skills and learning abilities.
"When government steps up to ensure a brighter future for such children ... this, to me, is government with its priorities in order," Assembly Speaker Sheldon Silver said at the bill-signing ceremony at the Capitol.
Cost estimates for insurers, and ultimately policyholders, vary, but the legislation's fiscal impact statement said insurance expenses overall would rise one-half of one percent. The note said other states with similar laws have seen "very modest" cost increases.
The legislation, signed into law today by Gov. Andrew M. Cuomo, was approved unanimously by both legislative houses in June.
"Over many years, you'll find the payback will be substantial," said Robert Wright, founder of Autism Speaks, a national group that has been pushing the legislation in New York for seven years. Wright, the former head of NBC and NBC Universal, said schools in the state will see student performance rise as a result of the new law.
But one health insurance trade group said the average policyholder in New York will see costs increase by several hundred dollars annually, and thousands more for businesses that offer health insurance benefits, as a result of the new autism mandated coverage.
"For some New York families and employers, it could be the added costs that finally price them out of coverage all together," said Paul Macielak, president of the New York Health Plan Association, which represents 26 managed care companies.
The group said the bill's signing comes as Cuomo and the state Insurance Department are  pressing insurers to lower rate hikes as a way to encourage affordability. It added the mandate will boost costs, as well, for state and local governments enrolled in government health insurance plans, as well as Medicaid costs. 
"The New York Health Plan Association (HPA) recognizes the myriad challenges that families caring for an autistic child face, including financial challenges," Macielak said. "However, it is important that we all also recognize that while this proposal to mandate coverage may ease the fiscal hurdles for some, it will not eliminate them and will actually erect new barriers for many others."
The legislation won't take effect for a year. It expands coverage for the screening, diagnosis and treatment of autism spectrum disorders. Advocates say families can spend $50,000 in out-of-pocket expenses to care for children with the disorders — care now to be covered by insurers.
The bill states that coverage can be subject to annual deductibles and co-payments, but not out of the ordinary when compared to insurance charges for other benefits. A different version of the bill that passed in 2010 was estimated to result in a 2 percent increase on overall insurance premiums. Then-Gov. David A. Paterson vetoed that bill.
Cuomo called the new law "a burden the insurance companies can carry." He said the new measure caps at about $45,000 per person per year the financial exposure that insurance companies will face for the autism-related coverage.
The American Academy of Pediatrics says there is no cure for autism-related disorders, but that children, with treatment, can progress and learn new skills. Experts say early diagnosis is key to helping improve conditions for children afflicted with autism. The group says one in 110 children has an autism disorder. The physicians group recommended all children between 18 to 24 months be screened for autism spectrum disorders.