Asperger's Syndrome
Links to Information On Asperger's Syndrome:
Asperger’s Syndrome is a
form of Autism. Autism is neurological in nature. It might be
described as the brain being wired a little differently. People with
Asperger's Syndrome or Autism think a little differently.
Statistics currently report that 1 in 150 children have Autism.
Many clinicians feel it is still under-diagnosed. The
causes of Autism are still unknown, though it is thought to be genetic,
or there is a genetic link that is somehow triggered by an
environmental factor. There is no known cure for Autism.
Asperger’s Syndrome was named after a German doctor in 1944 who noticed some children he saw had different kinds of behaviors than other children of the same age. He studied them and tried to help them. His name was Dr. Hans Asperger. In 1994, it was officially recognized in the United States. It was thought early on that 1 in 10,000 children had some type of Autism.
What Asperger's Syndrome or Autism is not: A disease, a disorder, an affliction, mental retardation, or schizophrenia. It is not treated with medications. It is not something that needs to be cured, but rather understood. It is not an indicator of low intelligence.
What does not cause Asperger's Syndrome or Autism: Bad parenting
Emily has Asperger’s Syndrome, and she is going to help me write this
article. We are going to use the term "Neurotypical or NT" to
describe a person who does not have Autism. We identify Kids with
Asperger's Syndrome as we are directing our information to parents.
Of course Kids become Adults! If you are or know of an
adult with Autism or Asperger's Syndrome, these things still apply.
Also, and most importantly, people with Autism are different.
They don't all have the same symptoms to the same degree, but
they share commonalities. Some are verbal, some are non-verbal.
The most important rule to remember about people with Autism, or
really anyone who is "different" is to Presume Intellect.
Asperger's Syndrome is more commonly diagnosed in boys. It affects mostly social issues. It can also co-exist with other issues such as ADHD, Sensory Integration Disorder, and Generalized Anxiety Disorder, to name the most common.
Kids with Asperger’s syndrome tend to have normal to superior intelligence. Some learn to read and write at a very early age, some may not speak but sing beautifully. Some may be able to mimic another person's speech and tone perfectly but may have a great deal of trouble coming up with their own words. This is called Echolalia.
Kids with Asperger’s Syndrome have a lot of trouble with social situations. They don’t notice “social cues”. This is the ability to look at someone and get a sense of how they feel, or notice someone’s body language or facial expression. Anything that an NT person learns by osmosis in the way of social understanding, has to be specifically taught to someone with Asperger's Syndrome. Eye contact can be especially difficult. Some feel it is painful to look into someone's eyes, and other make quite good eye contact. Others learn to fake it by focusing on another part of someone's face. Some think it's very important that eye-contact be taught, however, we personally believe in the "fake it" approach.
Kids with Asperger’s Syndrome are very sensitive to things like loud noises, bright light, some kinds of clothing, flying bugs, and other things that are disruptive to them. Sometimes these things interfere with their lives so much that they simply can't function without some type of intervention. For things like loud or reverberating sounds, head phones can be very useful. We know an adult with Asperger's Syndrome, who when making his speaking engagements must have fluorescent lightning turned off. He describes the buzzing sound these lights make, as a trumpet blasting in his ears, and causes him physical discomfort. We know of children who can not stand the feeling of scratchy materials or tags in their shirts.
Kids with Asperger’s Syndrome tend to be very literal. Euphemisms are often lost on them. Things like "Speak of the Devil" might elicit a response such as "why do you want me to talk about the devil?" Abstract ideas are not easily understood. They tend to be very honest. They prefer structure to open-ended activity. They talk a lot about one special subject (for Emily it’s video games) and about themselves.
Kids with Asperger’s Syndrome sometimes have fine motor delays or can be clumsy and awkward, which simply means, they have trouble writing, drawing, coloring, jumping rope, riding a bike, running. Dysgraphia is the term used for writing difficulties, and there is a section on that here as well.
Kids with Asperger’s Syndrome tend to get bullied. They are gullible, and literal, and don’t always understand sarcasm. They are book smart, not social smart, and other kids sometimes pick up on that and take advantage of what they are sensitive to. Bullying isn’t something anyone needs to go through, and in lots of schools across the country, kids are beginning to stick up for each other and protect their differences, rather than point them out and make fun of them. Everyone has something that makes him or her unique. All of us being the same would be rather dull.
Communication is an important thing for all of us. It allows us to understand each other and learn. It allows us to get relief from pain. It allows us to share experiences and find comfort. For people with Autism, communication can be a huge issue. As I said previously, some people with Autism are non-verbal. this does not mean they don't think, feel, or need comfort. It means they can't communicate these things effectively to an NT and have their needs met. Some children who are verbal have difficulty finding the words to describe the things they feel. In either case, sometimes negative behavior is the only way they can express themselves.
To illustrate, I recently watched a movie entitled Autism: The Musical. It was about a mother of a non-verbal autistic boy that created a program to teach theater arts to kids with different forms of Autism. In the movie there was a birthday party for the boy. It was held in a park and there were lots of people. When he blew out his candle, the crowd cheered, and he ran away from the group at the sound (sensitivity). Later he kept going toward a smaller child and gently touching his shoulder, as an adult supervising him reminded him "gentle touch". He went back to the child again, gently touching his shoulder, and then ran his hand down to the little boys wrist and pulled him to the ground. Naturally this is not acceptable behavior, but what I saw was communication. His mother explained sternly that he can't ever do this, and of course he can't. But a means of communication must be found! He was not also validated, as his feelings that he was trying to communicate weren't heard. My best guess is he felt that his gentle happy birthday experience felt more like being thrown to the ground in pain. Later in the movie, the mother had received some assistive technology in the form of a voice producing keyboard for her son. While a therapist steadied his arm, the boy's first "words" were, "Mom, I need to put you on the spot. You need to be a better listener."
We need to listen sometimes very carefully to those that are different and can not communicate effectively. We need to find ways to meet them half way. One should never assume, that lack of verbal communication equates to idiocy. Always presume Intelligence.
Imagine you are visiting a foreign country, and you don't understand the language. Perhaps you're need is to find a bathroom pretty quickly, and you go to some people to ask for directions to the nearest restroom. Perhaps they think you're looking for a bus stop and they begin to lead you toward it. Others might get involved, and you may feel embarrassed, frustrated, and angry that you can't be understood. They may feel frustrated and angry that you aren't grateful for receiving their help. This is Autism. That's what it can be like for someone who can not communicate effectively.
Self-advocacy is important for everyone. After communication, those with Autism next need to learn to communicate what they need to be happy and successful. Someday our children will grow up and we won't be there to explain who they are and why they do what they do. They will need to do it for themselves.
For instance, Emily's school day is filled with social interaction, and it is tiring to navigate through it. Her flight/fight response to stress is screaming. Naturally, the typical school setting is not the place for screaming, especially when you are 12, 13, or 14 years of age or older. One of her needs is a "social out". This means she will sometimes need to simply excuse herself and be allowed to immediately leave the classroom for a few minutes to regroup. Teachers and other staff need to be aware that this request doesn't mean she wants to get out of doing her work. Emily has begun to write letters to her team of teachers, so that she can help them understand her from her point of view, and let them know how she can overcome her obstacles with their help. She excels academically and wants very much to continue doing so.
There are some great websites and books that offer information on Asperger's Syndrome and Autism. Many have ideas, suggestions and support for a variety of issues people with Autism face. You'll find them at the top of this page.
A great starting point are two books by William Stillman, The Autism Answer Book (in which a question and solution of my own writing was included) and The Everything Parent's Guide to Children with Asperger's Syndrome. He has written others as well, and authored several articles, all of which can be found on his website. I am partial to the advice given by Mr. William Stillman, as he has become a very good and caring friend of ours and we are grateful to him for his help on our own path which has proven invaluable to us. His seminars bring to the NT world a focus on understanding Autism and differences, rather than a "How do we control this" point of view. If you are a teacher or therapist, you will find this point of view very unique. His website is a must see! Please learn as much as you can. Our understanding of Autism is vital to those who have it.
William Stillman has a new book coming out in August.
I can't wait to read this! This is from Bill:
EMPOWERED AUTISM PARENTING
My new book, Empowered Autism Parenting: Celebrating (and Defending) Your
Child's Place in the World, will publish this August but is available NOW for
pre-order on Amazon.com (find it by doing a search on the title). It promises to
be my most political, radical, controversial and (you guessed it) empowering
work to date. Among the very candid contentions are the following:
· Acknowledging your child’s true intellect despite diagnoses to the contrary
· Realizing your own “autisms” to see why we are all more alike than different
· Why your child doesn’t need traditional therapy or medication for autism
· How the autism industry perpetuates parental fear and guilt
· Understanding your non-verbal child’s symbolic communications
· How your child is unnecessarily set up for failure every day
· Reinterpreting “autistic behaviors” as legitimate communication
· Identifying your child’s passionate interests if he appears to have none
· Why the real autism “epidemic” has nothing to do with young children
· How those autism ribbons and public awareness cards send the wrong message
· Understanding how your child best thinks, learns and retains information
· Ten ways to enrich the relationship with your child through a belief in
competence
The book's equally passionate foreword was written by Lu Hanessian, former NBC
anchor, host of her own Discovery Channel parenting show, author, and founder of
Wear Your Spirit for Humanity. Learn more about Lu at www.letthebabydrive.com.
Lu is also mom to a son on the autism spectrum, and her voice lends authenticity
to my own.
