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.

World Autism Awareness Day

About World Autism Awareness Day

On December 18, 2007, the United Nations General Assembly adopted resolution 62/139, tabled by the State of Qatar, which declares April 2 as World Autism Awareness Day (WAAD) in perpetuity. Her Highness Sheikha Mozah Bint Nasser Al-Missned, Consort of His Highness Sheikh Hamad Bin Khalifa Al-Thani, the Emir of the State of Qatar, supported the campaign for a World Autism Awareness Day through the current 62nd UN General Assembly Session, garnering consensus support from all United Nations Member States.

This UN resolution is one of only three official disease-specific United Nations Days and will bring the world's attention to autism, a pervasive disorder that affects tens of millions. The World Autism Awareness Day resolution encourages all Member States to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges.

World Autism Awareness Day shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe.

By bringing together autism organizations all around the world, we will give a voice to the millions of individuals worldwide who are undiagnosed, misunderstood and looking for help. Please join us in our effort to inspire compassion, inclusion and hope.

Show your appreciation of Autism Awareness..!