I’ve come across a terrific book for parents of children on the autism spectrum, or kids with Aspergers. I wish my parents had it when I was growing up! But as you’ve undoubtedly read in my book Unforgiving, Memoir of An Asperger Teen, in those days no such guide existed.
Today’s parents have a huge advantage in raising children on the spectrum. There are many resources available now, and one of them is this book whcih combines the expertise of three PhD’s, Ozonoff, Dawson and McPartland, A Parent’s Guide to High Functioning Autism Disorder–How to Meet the Challenge & Help Your Child Thrive is informative to say the very least.
Published in 2013, the book discusses research and developments including significant changes from the Diagnostic & Statistical Manual of Mental Disorders IV (DSM-4) and the current diagnostic manual–DSM 5. The authors specifically address how these differences may relate to your child’s diagnosis.
The book is divided into two sections: Understanding High Functioning Autism Syndrome Disorder (A.S.D.)which includes history and diagnostic and research approaches, and Living With High Functioning A.S.D.
Both sections contain significant information on the syndrome itself as well as its various implications on the life of a child and their family.
While the book is obviously directed at the lay person, I would not say it is light reading. Wisely, the authors use anecdotes from recent case histories to illustrate the application of much of the information. These anecdotes along with some more personal notes make the book very readable.
The reference section alone, 15 pages of book titles, CDs and Websites is worth the price of the book.
All in all, its a great resource and I heartily recommend it for reference purposes. Look for it in the bookstore, or in your local library.
People who are different somehow are often subjected to unpleasant treatment. Sometimes very harsh treatment. Social isolation. Bullying. Discrimination. Unfortunately, people on the autism spectrum can often find themselves in these unpleasant situations.
Many now-famous people have found themselves in very dire situations, suffering treatment or circumstances which might easily have left them forever emotionally scarred if not dead.
One such man, Viktor Frankl, imprisoned in Auschwitz for several years during WWII, was fascinated by his own and others’ ability to survive conditions which should have killed them.
“Sensitive people who were used to a rich intellectual life…” Frankl concluded, would often survive, even if they seemed more fragile emotionally and physically than other men.
In his book, Man’s Search For Meaning, Frankl credits their survival to an interior sphere of intellectual stimulus to which they could retreat.
This brings to mind the biography and now, movie Unbroken. Cast adrift on a raft for weeks with no food or water, Louis Zamperini and his pilot survived. Both credited their survival with intellectual discussions and debates which took their minds off their plight. They were also able to devise ways to catch fish (rarely) and capture drinking water from the occasional rainfall.
Also, the story of Nelson Mandela, (movies, Invictus and Long Walk To Freedom) a man who endured unthinkable punishment in prison under the Apartheid system of South Africa. He had a dream to live for; to see his people live freely in their own country.
While most Aspies or high-functioning autism spectrum individuals will never live under conditions as dire as these, it is encouraging to know that interior intellectual lives have meaning and value.
It is important to learn to cope socially, to hone our social skills to the point where we can move freely in our societies with confidence. However, nurturing that rich interior life can help move us through periods of suffering.
Frankl says also that people who had an unfinished work that only they could complete, people who had a dream to fulfil, and people who had someone else (a loved one) to live for, also found reason to endure.
Frankl notes that unavoidable suffering gives a person a unique opportunity to express his finer self in how he/she manages or bears his suffering.
Please note that Frankl is speaking of unavoidable suffering. To suffer when it is avoidable, Frankl maintains, is mere masochism.
Click on the link, then click ‘play’ to see the film.
Hey, Aspies! There’s a ground-breaking autism research project and you can be a part of it!
MSSNG is a groundbreaking collaboration between Google and Autism Speaks to create the world’s largest genomic database on autism.
By sequencing the DNA of over 10,000 families affected by autism, MSSNG will answer the many questions we still have about the disorder.
Thanks to the Google Cloud, this vast sea of information will be made accessible for free to researchers everywhere.
The greatest minds in science from around the world will be able to study trillions of data points in one single database.
Our pilot program of 1,000 whole genomes has led to new discoveries about the disorder.
With over 10,000 whole genomes and the help of the global science community we can far outreach what has been accomplished so far. MSSNG will identify many subtypes of autism, which may lead to more personalized and more accurate treatments.
For questions about MSSNG, please contact us at info@mss.ng or call (646) 385-8593.
To learn more, go to https://www.autismspeaks.org/
Growing up in the 1960’s when nobody knew about Asperger’s syndrome, when it hadn’t even been officially accepted or even described by the AMA, was confusing and frustrating.
In my book, Unforgiving, Memoir of an Asperger Teen, I talk about that frustration.
And if it was bad for me, I hesitate to think how tough it was for my parents to have an Asperger’s Syndrome child in an era when manners and social conformity meant everything.
Thank goodness now there are several organizations whose sole purpose is to guide parents and adult Aspies through the maze of diagnosis, treatment and general support.
Positive affirmation is the guiding principle.
I am impressed to read in the Autism Speaks website (www.autismspeaks.org) that many adult-diagnosed Aspies “make great strides by coupling their new awareness with counseling”.
The Autism Speaks website is a great resource, with it’s many articles and references. Especially popular is their Asperger Syndrome Tool Kit.
Included in that tool kit is Ellen Notbohm’s Ten Things Every Child With Autism Wishes You Knew. I wish my parents could have read it. Maybe your child feels that way, too.
And if you’re an adult with Asperger’s? Read it anyway. It can help you let your friends know how to help you.
RENTON, Wash. – The Seattle Seahawks announced today the arch lights on the roof of CenturyLink Field will be among many iconic monuments around the world being illuminated blue to support the United Nations-sanctioned World Autism Awareness Day on April 2.
In addition, the team will donate 10% of sales to “Ben’s Fund” for every regular priced hat and knit cap sold during the month of April at the team’s four retail stores. The retail stores, known as THE PRO SHOP, are located at CenturyLink Field, 401 Pike Street, The Landing in Renton and Alderwood Mall.
Ben’s Fund, launched in 2012 by Seahawks Executive Vice President/General Manager John Schneider and his wife Traci in partnership with Families for Effective Autism Treatment (FEAT), provides grants to families across Washington State to help cover costs associated with medical bills, therapies and numerous other aspects of supporting a child, or children, on the autism spectrum.
“On average, autism costs a family approximately $60,000 a year,” said Seahawks GM John Schneider. “We created Ben’s Fund to help ease the financial stress that impacts families with a child on the spectrum.”
Ben’s Fund was established at FEAT in order to provide grants to families for their children on the spectrum and to drive families to FEAT so they will be connected to a larger community to receive ongoing guidance and assistance as they continue their journey with autism.
One in 68 children and one in 42 boys are affected with autism.
“Through Ben’s Fund, we have raised more than $850,000 and distributed more than $400,000 dollars in grants to over 500 families in the state,” said Traci Schneider. “These grants help pay for a variety of therapies, services and even tablets to help with communication.”
The primary fundraiser for Ben’s Fund is an annual celebrity waiter’s event with participation from Seahawks players and coaches. Prime Time will be held on April 23 at El Gaucho and is sold-out for the fourth consecutive year.
Being praised for being smart can unwittingly lead bright kids to a downward learning spiral.
So says Mary Loftus in an April 2013 Psychology Today article; Smooth Encounters.
Loftus suggests kids who are told they are bright may not put in as much effort, thinking things should come naturally to them.
This can lead to poor results which can make them doubt their ability.
Praise effort, Loftus suggests. Praising the work leading up to the brilliant report or impressive project is often more helpful for the child seeking reassurance. Praise persistence. Praise performance. Remind the child of obstacles overcome.
This kind of praise leads to intellectual and social success.
Free the Children is a great read. I couldn’t put it down. It is the true story of one young boy’s determination to change the world.
Thinking about Free The Children by Craig Kielburger, I realized if you want to start an organization of your own, an analysis of Kielburger’s success is a good place to start.
Vision: Kielburger’s goal? To continue the work of a freed child-labourer who had been assassinated.
Mandate: Children working together to right injustices perpetrated against impoverished children. Kielberger envisioned children (up to and through their teens) and not adults being in charge. In pursuit of that vision, he enlisted the help of his schoolmates. They encouraged each other in the belief that this was possible.
Education: Kielburger and his team educated themselves on the topic, learning all they could. And when confronted by people who saw the situation from a more sophisticated perspective they researched & studied until they were able to return and respond appropriately. This later served Kielburger well in dealing with governmental agencies and other administrative bodies.
Action: He first worked locally, and then through his network of friends, travelled the world. He wanted to see the situation firsthand so that he could report accurately from his own knowledge. In his travels he interviewed many of child labourers. He found he was often surprised by their perspectives.
Respect: He showed respect, even for his opponents, as well as for the impoverished children, government officials and charitable organization administrators. He observed and analyzed positions of the various authorities under whom child labour existed. HIs cool and knowledgeable demeanour won him the respect of all.
The Free the Children organization is responsible for building more than 650 schools providing daily education 55,000 children.
Touch can strengthen relationships, show closeness, and increase co-operation. This applies to touching in “safe zones”.
So says Laura Guerrero in an April 2013 Psychology Today magazine article. Touch, Guerrero maintains, is important in developing social relationships.
As Aspies, we often don’t like to be touched. And we almost never feel comfortable touching others.
So, perhaps more than non-Aspies, we can understand the need to observe the other person’s reaction, of how they respond to your intention to touch.
Do they tense up? Pull away? Don’t touch.
Do they relax, seem open to touch? Keep to the safe zones.
Because touch is the first sense humans acquire, Guerrero maintains it is a key element in building relationships.
Staying within the safety zones, observing a person’s response to your intention to touch, these are key to successful touching.
Do not touch complete strangers, or people you hardly know. That is an unwelcome touch.
Safe zones are hands, shoulders and arms.
Examples of safe-zone touches? High fives. Hand shakes. Back slaps. Shoulder taps.
In the office? Let your manager, supervisor or boss initiate contact, Guerrero warns.
Keep your handshake firm. Not limp, not bone-crushing.
And when in doubt? Don’t touch.
Guerrero researches non-verbal communication at Arizona State University and is the author of the book, Close Encounters, Communication in Relationships.
It’s SMALL. Bytes of conversation as opposed to megabytes or gigabytes.
Keeping it short and impersonal can be challenging when you’re longing to express thoughts and ideas you have harboured inside yourself for so long that they are bursting to come out. But you must manage your conversations, especially when you are first meeting someone.
Remember: Bytes. Little. Little bits of conversation.
When you are first introduced to someone? This is not the time to tell them about your fascination with engineering systems, national infrastructure or energetic reactions. Save those conversations for networking meetings or gatherings of people with similar interests.
Socially? Small talk is for when you first meet someone. It’s a time to establish a safe conversational zone for both you and the person who is the object of your conversation.
Topics? The weather. Recent outings or vacations. Current events. Popular movies.
If the other person takes you deeper into their personal life, political or religious persuasion, fine, let them go on.
But rein yourself in. Keep your conversation pleasant, interested and attentive. Excuse yourself politely if you feel you must escape them.
I was born with Asperger’s so I had markedly different ideas and behaviours from the average girl, and definitely from my mother and father.
In my book, Unforgiving, Memoir of an Asperger’s Teen, I talk a lot about the lack of relationship between myself and my parents. That sense of disconnection, the feeling that I was some sort of interloper.
At the time, in my teens, I thought Mom’s ideal daughter would have enjoyed sewing, crocheting, baking bread with her, and sharing her enthusiasm for Woman’s Day magazine. I was into classical music, movies like Lawrence of Arabia, poetry, Shakespeare and boys.
Was I right about Mom? I’m not so sure.
My mother’s house was always dusty, rather untidy. She went out to work, you see, when few mothers did, straining in the steaming heat of the Empress Laundry or cleaning low-rent motel rooms.
Once you’ve been out to work, you’ll never want to stay home again, she told me in a rare moment of mother-daughter confidence.
And of course the housework had to be done by someone. And as the eldest daughter by nearly eight years, naturally that lot fell to me and to my grandmother. I talk about that in Unforgiving, too. About how I just took these duties for granted.
What did Mom want? Just a daughter who didn’t talk so loud? Who didn’t speak out of turn? Who could get a job and keep it?
The truth is, I will never know. Relationships are complicated.
Deeper into my adulthood, Mom and I came a little closer. When she got Alzheimer’s? After Dad died she came to live with us.
Goodnight, Mom, she’d say as I tucked her into bed.
She had forgotten I was her daughter. All she knew was that I was someone who lovingly tucked her in at night.
Maybe that’s all we needed to know about each other.
Margaret Jean 