Tuesday, January 22, 2008

Help for a Mom in need!

Today I recieved an email from my dear friend Whitney Hoffman, host of the very popular child development podcast, LDPodcast. It discusses the plight of a mother of a wonderful Autistic child in a country that not only has very little support for special needs kids, but actually regards them as a form of divine retribution for parental misdeeds.

Whitney has a plan to help one of these brave parents, but she needs all of us to lend a hand, too. here is her message:

Imagine, just for a moment, discovering your only child has autism. Imagine this happens while living in a Country of 1.3 Billion people, where only two state-run schools exist to serve all of the people with autism. You live in a culture where the very existence of autism has only recently been recognized as a disability, and your child's disability is seen as sign that you, the parent, did not lead a virtuous life. People with disabilities may be able to work in fields, but are generally shut away to avoid a loss of face for the family. What would you do?

What would you do if you were a Mom a continent away, but also realized you could, with a few calls and emails, help this Mom who is struggling against odds you can't fully imagine?

A week ago, an article in the Wall Street Journal caught my eye- a mother in China discovered her daughter had autism. There were only 2 schools in all of China for autistic children. Ma Chen opened an additional school, and is currently hoping to buy a piece of farm land for $10,000, so that the children will have a place to go and something to do after they finish school.

China is a place where disabilities are often seen as a sign of being a bad parent, even though we know that many of them are genetic disorders. The New England Journal of Medicine reports that there is at least one form of autism caused by a spontaneous "micro deletions and "micro replications" of specific genes. You can read more about it here.

I want to help. By coincidence, one of my childhood friends is the Senior Cultural Attache for the US Department of Agriculture in Beijing, China, so it seemed easy enough to email him and ask if there was any way to verify the story. If we could, I want to try to raise enough money, $10,000 US, to help Ma Chen purchase this farm as a "Mothers to Mothers" way of making the World better for our children. I asked Eric if there was a way to get the money directly to Ma Chen, and also not cause an international incident in the process. Eric is continuing to pursue the matter through diplomatic channels, and to look into whether there can be help offered through the USDA directly as a development project, and is hoping to have more news shortly.

In addition, Ian Johnson, the writer from the Wall Street Journal, has been in contact with their office in Shanghi. He can help us arrange a Western Union transfer directly to Ma Chen and her organization to help her with her school and the purchase of this farm for the children.

I think it is currently "safe" to try to raise funds to help Ma Chen and her school and have confidence we can get the money directly to her.

As a mom of a child with a learning disability, I know how painful it can be, and how much worry it causes. Starting from a sense of something not being right with your child, to finding out what is wrong, to trying to figure what you can do to make it better can be exhausting and a frustrating process. It's even harder for the parents I know who have autistic children, who don't know whether their child will be able to hold a job or make a living when they grow up, or what will happen to them after the parents pass away. And that's here in the US, where we acknowledge autism as a disability. Ma Chen faces challenges dealing with these same issues in China that make all of our very real worries seem insignificant by comparison.

Our goal is to raise $10,000 for Ma Chen, to help her purchase the farm, so these children have a place to go- a sheltered work environment, where people understand them, and a place where they can be productive. This is a tangible way we can collectively help make a lasting difference in the lives of children a continent away, for little more than the cost of a latte.

I've started a Chip-in page for this cause at http://ldpodcast.chipin.com/ma-chen-autism-school-in-china. If you are interested in supporting this cause, you can make donations of any size here- for the cost of a latte, we may collectively be able to make a big difference in the lives of children with autism in a place where the parents and children face obstacles it's hard for us to imagine.

Thank you so much for your consideration- I would not ask if I was not assured we could get the funds directly to Ma Chen and make a difference in the lives of the children.

Whitney Hoffman
The LD Podcast


Please, if you are in a position to help, lend a hand for this wonderful cause!

Thursday, January 19, 2006

Award for assistive device for those with Asperger's

Asperger's Syndrome has been very much in the public eye recently. A major storyline on the popular television show "Boston Legal" this season has revolved around a character being denied a partnership in the show's law firm because he "makes the clients feel uncomfortable". This is despite the fact that he is the firm's top researcher with an encyclopedic knowledge of tort law and legal precedents. It turns out that he is able to obtain a settlement form the firm because he recieves a diagnosis of Asperger's syndrome.

The show also touches on the question of whether or not those with Asperger's are violent by nature or not. This we will discuss at another time.

Another recent event that has brought Asperger's syndrome and those who have it into the public eye is Motorola corporation's MOTOFWRD contest. This year's winner has developed an idea for a cell phone that gives cues to its owner as to the emotional state of others. This device is the Mood Phone, created by John Finan, a student at Duke University.

While the phone does not physically exist at this time, it may be developed by Motorola, or another technology company in the future.

Thursday, January 12, 2006

Did Andy Warhol have Asperger's?

There is a fascinating article called Illness: the pathway to creative genius? which explores conditions that may have contributed to the great masters of the arts and sciences. Aside from a fascinating discussion of the influence of cataracts on the development of impressionism, the article goes on to single out Warhol as a likely Person With Asperger's:

At Oxford, Ioan James, a professor of geometry, is writing a book in which he investigates whether 20 influential figures, including Einstein and Newton, the composer Bartók, the mathematician Alan Turing and the artist Andy Warhol, had Asperger’s syndrome, a mild autism characterised by extremely focused attention. James argues that the obsessive and repetitious behaviour often associated with autism was a positive thing in these people. “Perseverance, perfectionism, disregard for social conventions and unconcern about the opinions of others could be seen as a prerequisite for creativity, and these are also behaviours associated with Asperger’s,” he says.


A great read, I recommend it to all.

Thursday, December 15, 2005

Asperger's Seminars Winter 2006

There will be a series of seminars on Asperger's syndrome held throughout New England this January and February. These sessions, entitled "Improving Outcomes for Children and Adolescents with Asperger's Syndrome", will be run by Cross Country Education.

These events are geared both to professionals and parents, and are recommended for everyone from school administrators and teachers to OTs, PTs, Speech Pathologists, Pediatricians and other medical professionals. Continuing Ed credits are available in many specialties.

Covered topics will include:
  • How to recognize and identify behavioral symptoms of Asperger's Syndrome

  • Techniques used in pragmatic language assessment

  • Frequent misdiagnoses and diagnostic progression

  • The social and emotional issues associated with Asperger's Syndrome

  • Specific techniques to improve successful outcomes

  • Intervention methods to combat social inappropriateness

  • Current research concerning Asperger's Syndrome

  • The unique difficulties present in Asperger's Syndrome

  • Intervention techniques for fine motor, gross motor and academic issues

  • Discuss intervention techniques to combat social inappropriateness

  • Review current research concerning Asperger's Syndrome

  • Understand the unique difficulties present in Asperger's Syndrome

  • Learn intervention techniques for fine motor, gross motor and academic issues


Locations and dates:
  • Manchester, NH - Jan 30

  • Worcester, MA - Jan 31

  • Boston, MA - Feb 1

  • Providence, RI - Feb 2

  • Hartford, CT - Feb 3


For More Information on these and other, related seminars:
www.CrossCountryEducation.com

Thursday, December 08, 2005

Autistic Children's Brains 5% Larger Than Average by Age 2

A study by researchers at the University of North Carolina at Chapel Hill and Duke University medical schools has found that on average, an autistic child's brain will be 5% larger than typical by the age of two. Although the process is not well understood, it is believed that the majority of the extra growth occurs late in the first year of life.

This study of 303 children, 113 with autism and 190 without, found the largest area of growth was in the Temporal Lobe (which controls language skills), but that enlargement was present across the entire cerebral cortex. The effect is directly measurable even in terms of head circumference.

Read more:
Autistic Children's Brains Grow Larger During First Years Of Development, Why Is Not Clear [Science Daily]

Tuesday, October 25, 2005

Tony Attwood: Quotes on Asperger's

Asperger's Syndrome writer and researcher Tony Attwood has a wonderful web site full of great information on many different aspects of Asperger's. One of my favorite parts is the page of quotations by people who have AS.

A particular favorite quote of mine:

"A very frightening experience when you discover for the first time you are in world full of people who have no reason to love or even like you and some even dislike you for reasons best known to themselves."

The above quote is from the autobiography of Attwood's sister-in-law, Sarah, who is an adult with Asperger's Syndrome.

Read More:

(Deep linking into Tony's site is not possible, please explore it yourself, particularly the Quotations page.)

Tony Attwood's Official Website

Friday, October 21, 2005

How is Asperger's diagnosed?

The diagnosis of Asperger Syndrome is complicated by the lack of a standardized diagnostic screen or schedule. In fact, because there are several screening instruments in current use, each with different criteria, the same child could receive different diagnoses, depending on the screening tool the doctor uses.

To further complicate the issue, some doctors believe that AS is not a separate and distinct disorder. Instead, they call it high-functioning autism (HFA), and view it as being on the mild end of the ASD spectrum with symptoms that differ -- only in degree -- from classic autism. Some clinicians use the two diagnoses, AS or HFA, interchangeably. This makes gathering data about the incidence of AS difficult, since some children will be diagnosed with HFA instead of AS, and vice versa.



Most doctors rely on the presence of a core group of behaviors to alert them to the possibility of a diagnosis of AS. These are:

  • abnormal eye contact
  • aloofness
  • the failure to turn when called by name
  • the failure to use gestures to point or show
  • a lack of interactive play
  • a lack of interest in peers


Some of these behaviors may be apparent in the first few months of a child’s life, or they may appear later. Problems in at least one of the areas of communication and socialization or repetitive, restricted behavior must be present before the age of 3.


The diagnosis of Asperger's is a two-stage process. The first stage begins with developmental screening during a “well-child” check-up with a family doctor or pediatrician. The second stage is a comprehensive team evaluation to either rule in or rule out AS. This team generally includes a psychologist, neurologist, psychiatrist, speech therapist, and additional professionals who have expertise in diagnosing children with AS.

The comprehensive evaluation includes neurologic and genetic assessment, with in-depth cognitive and language testing to establish IQ and evaluate psychomotor function, verbal and non-verbal strengths and weaknesses, style of learning, and independent living skills. An assessment of communication strengths and weaknesses includes evaluating non-verbal forms of communication (gaze and gestures); the use of non-literal language (metaphor, irony, absurdities, and humor); patterns of inflection, stress and volume modulation; pragmatics (turn-taking and sensitivity to verbal cues); and the content, clarity, and coherence of conversation. The physician will look at the testing results and combine them with the child’s developmental history and current symptoms to make a diagnosis.


This article appears courtesy of the US NIH.