Patricia E. Kefalas Dudek
Advocate for Elders, People
with Disabilities
and Their Families

Disabilities - Autism

Articles, Publications, Organizations/Services, Resources

also see Autism news

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General Information:

The federal definition of autism is as follows:

The Individuals with Disabilities Education Act [IDEA 300.7 ©(1)(i)] defines Autism as "A developmental disability significantly affecting verbal and non-verbal communication and social interaction, generally evident before age three that adversely affects a child's educational performance. Other characteristics often associated with Autism are engagement in repetitive activities and stereotyped movement, resistance to environmental change or change in daily routine, and unusual responses to sensory experiences. The term Autism does not apply if a child's educational performance is adversely affected primarily because the child has an emotional disturbance.

Additionally if they are a California student (I am assuming they are since they qualify for Regional Center) then simply refer to the ed code statues which are more liberal and state that the student does not even have to be diagnosed as autistic rather simply display "autistic like" symptoms. The ed code is below:

(a) For purposes of this chapter, a "pupil with autism" is a pupil who exhibits autistic-like behaviors, including, but not
limited to, any of the following behaviors, or any combination thereof:

(1) An inability to use oral language for appropriate communication.

(2) A history of extreme withdrawal or of relating to people inappropriately, and continued impairment in social interaction from infancy through early childhood.

(3) An obsession to maintain sameness.

(4) Extreme preoccupation with objects, inappropriate use of objects, or both.

(5) Extreme resistance to controls.

(6) A display of peculiar motoric mannerisms and motility patterns.

(7) Self-stimulating, ritualistic behavior.

(b) The definition of "pupil with autism" in subdivision (a) shall not apply for purposes of the determination of eligibility for
services pursuant to the Lanterman Developmental Disabilities Services Act (Division 4.5 (commencing with Section 4500) of the Welfare and Institutions Code).

Articles

27 Genes (Change.org - 7/16/09)
That's how many genes might be "associated with either Asperger Syndrome (AS) and/or autistic traits and/or empathy" according to a new study in the July 16th Autism Research.
Patti's Comments: Amazing post about new research on Autism!

A Powerful Identity, a Vanishing Diagnosis (New York Times - 11/2/09)
Children with Asperger’s syndrome, a mild form of autism, are socially awkward and often physically clumsy, but many are verbal prodigies, speaking in complex sentences at early ages, reading newspapers fluently by age 5 or 6 and acquiring expertise in some preferred topic — stegosaurs, clipper ships, Interstate highways — that will astonish adults and bore their playmates to tears. In recent years, this once obscure diagnosis, given to more than four times as many boys as girls, has become increasingly common.

An Outbreak of Autism, or a Statistical Fluke? (New York Times - 3/16/09)
Autism is terrifying the community of Somali immigrants in Minneapolis, and some pediatricians and educators have joined parents in raising the alarm. But public health experts say it is hard to tell whether the apparent surge of cases is an actual outbreak, with a cause that can be addressed, or just a statistical fluke.
Patti's Comment: What do you folks think about this??? It kind of surprises me!

Ask the taxgirl: Autism & Special Needs Children
Can tuition in a private preschool with a program specifically for children with autism be tax deductible?

Autism and Girls, Women, Females in General
Autism manifests differently in females than it does in males. Because of this small but extremely essential difference, girls... in general are much harder to diagnose with autism, hence the 1 to 4 statistics of female and male diagnosed.

Autism Insurance Debate (My Great Kids - 6/7/10)
The raging debate over Autism Insurance is a battle raging in the courts, classrooms, therapy centers, doctors offices, legislator’s offices ….. and living rooms across this country, including right here in Michigan. The battle is being fought by parents on two fronts. On the first front is the push for legislation which would force insurance companies to stop dodging their responsibilities and cover Autism. The second, and no less active front, is being fought in the courts as parents, fed up with wrongfully denied insurance claims, are taking their fights to the courts …. and winning.

Autistic Adults Present a Growing Care Dilemma (KPBS - 11/12/09)
People are typically diagnosed with autism when they're very young. But kids grow up, and kids with autism carry their disability into adult life. What happens when autistic kids become adults, and still need a lot of care?

Autistic or Person with Autism? (Washington Times - 8/2/10)
When I write here, I use the words "person with autism" and "autistic person" pretty interchangeably. Every once in a while, this column gets a comment telling me I should use "person first" language, meaning I shouldn't use the word "autistic" to describe a person. Because I've heard this criticism more than once, I feel it necessary to tell you that I not only use the word "autistic" intentionally, but thoughtfully and with purpose.

Blasting Stereotypes in Autistic Females (Change.org - 3/24/09)
It's no secret that more males than females are diagnosed as being on the autism spectrum. Evidence shows that there are differing behaviors between autistic males and females.

Couple Lives with Autism, Comfort of Each Other (ABCNews.com - 2/25/09)
David Hamrick, 29, and Lindsey Nebeker, 27, look like a typical couple in love, but what's not apparent is how hard they've worked to be together.

Cyber Scout Puts Autism Studies on Faster Track (NPR - 4/8/09)
Scientists researching autism are getting help from a friend in cyberspace.
Patti's Comment: Great article about a network of families.

Disability Models, Tragedy and Identity (Change.org - 3/2209)
The social model of disability can be contrasted with the medical model. The medical model views disability as a flaw in a person that can be cured by some form of medical treatment; the social model views disability as a flaw in the way society treats a person that can be cured by some form of accommodation.
Patti's Comment: This is a great summary of the support model rather than the medical model of support for people with disabilities.

Don't Mourn For Us (Community Advocates - 7/26/10)
Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle. But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.

Drugs Hint at Potential Reversal of Autism (NPR - 8/23/08)
A director of the Picower Institute for Learning and Memory at MIT has discovered a system in the brain that could change the lives of thousands of people with the genetic disorder known as Fragile X Syndrome, a mutation on the X chromosome that can cause mental retardation and autism. Until now, there has been no treatment.

Hyperbaric Autism Treatment Shows Possible Promise (ABC News - 3/13/09)
Info about treatment in a hyperbaric chamber, where pressure is increased in an attempt to boost the amount of oxygen in the child's brain.

Inspirational Student with Autism: Haley Moss (MangoMon Blog - 7/26/10)
Haley Moss is an autistic teenager from Parkland, Florida. She is also an artist and a writer. At 16 years old, she currently has her artwork being shown at various South Florida galleries and has published her first book. She is a student at the Pine Crest High School in Ft. Lauderdale and attributes part of her success to the great teachers at the schools she has attended. She attends regular classes, and until now, many of her fellow classmates didn’t even realize that she had autism; they just thought she was shy.

Magic in the Water (Baltimore Sun - 1/5/09)
Trips to the National Aquarium are key to a Kennedy Krieger program that helps autistic youngsters master social skills.

New Studies Chronicle Stress in Mothers of Autistic Children (WKOWTV.com) - 11/10/09
A new pair of studies from the University of Wisconsin chronicle the daily physiological and psychological toll on mothers of adolescents and adults with autism. The studies reveal patterns of chronic stress, fatigue, work interruptions and a significantly greater investment of time in care giving than mothers of children without disabilities.

PICA Disorder
Many children that have sensory related issues /Autism deal with this disorder as well. Some are more severe then others.

Seven Easy Ways to Help a Family Diagnosed with Autism (Autism Support Network)
Today, almost everyone knows someone with autism. And yet, with all the talk about cures, causes and concerns, there is rarely any information on how we can support a family with this diagnosis.

Signs of Autism at 1 Month (Your Therapy Source - 8/2/10)
The August issue of Pediatrics reports on a retrospective study over 11 years of over 2100 NICU newborns. The researchers discovered that the infants who later received a diagnosis of autism had a higher incidence of persistant neurobehavioral abnormalities such as increased upper extremity muscle tone and asymmetrical visual tracking at one month of age.

Students With Autism Learn Business, Life Skills at Seaholm (Detroit News - 1/26/10)
High-functioning autistic adults can offer employers sought-after skills, such as intense attention to detail, a single-minded focus and a willingness to work on something until perfection.

Tax Planning for Parents of Children with Autism (Autism Support Network)
Parents or other caregivers of loved ones with autism may qualify for valuable tax benefits, which may be overlooked by some tax preparers who are unfamiliar with the autism spectrum disorder. These unique tax benefits may entitle parents to additional refunds of thousands of dollars.

Teaching Autistic Teens to Make Friends (Science Daily - 4/8/09)
It's hard enough to be a teenager...but it's harder still for adolescents with autism because they typically lack the ability to pick up on all the social cues most of us take for granted.

Teaching Kids with Autism the Art of Conversation
A team of researchers at Baltimore's Kennedy Krieger Institute has developed a course to help kids with autism improve their social skills.

The Aurora Project - Robots Helping Autistic Children (MangoMon - 8/2/10)
The Aurora Project was created as a long term project in the United Kingdom in 1998. It is a project supported by the University of Hertfordshire School of Computer Science with local schools. The program pairs autistic children with robots, a high-interest ‘toy’, to help them build educational and social skills.

Tips for Teaching High Functioning People with Autism (O.A.S.I.S.)
People with autism have trouble with organizational skills , regardless of their intelligence and/or age. Even a "straight A" student with autism who has a photographic memory can be incapable of remembering to bring a pencil to class or of remembering a deadline for an assignment.

Try Anything and Everything for Autism (New York Times - 1/19/09)
If anything definitive can be said of the popular therapies for autism, it is that treatments have to be individualized.

Two Area Young Men are National Merit Semi-Finalists (CourierLeader - 3/9/09)
Two area high school students, both with Asperger's Syndrome, a form of autism, have been named National Merit semi-finalists. Each scored in the Top 1 percent of high school students nationally on their preliminary SAT exams, qualifying them for the National Merit Scholarship Program.
Patti's Comments: Congratulations to these young men!

Underdiagnosed Girls With Autism Struggle to Fit In (ABC News - 1/23/08)
At first glance, 8-year-old Kaede Sakai is a typical first grader. She's a smart student, and most of the time she is kind and cordial in class. But recess is an exercise in frustration for her because no matter how hard she tries to fit in, she just doesn't click with the other kids.

What Autistic Girls are Made of (New York Times - 8/5/07)
It was a small, casual encounter and also an exceedingly rare one — a taste of teenage patter shared by two autistic girls.

What Autism is Not (MentalHelp.net - 2/14/06)
Autism is not Mental Retardation or a Lack of Intelligence. As intelligence is communicated through skillful use of language, autistic people's social and communication deficits can easily make them appear unintelligent. This is not necessarily the case, however. Autistic people vary in intelligence more or less as normal people do, only their language and social problems can make that intelligence harder to discover. Historically, autism was confused with Mental Retardation (MR). Today, MR and autism are considered to be distinct conditions.

When It Hurts (TeenAutism.com)
Sometimes, when you’re the parent of a teen with autism, you have to write letters like this...

Publications

Asperger's Syndrome Guide for Teachers
Guide prepared so that families could have a short description of AS and its behaviors to share with their children's teachers.

Autism and Autistic Symptoms Associated With Childhood Lead Poisoning (Journal of Applied Research)
The paper presents two case histories of children who, during periods of severe lead poisoning, developed autism or autistic symptoms.

Autism Safety Toolkit (National Autism Assn.)
To ensure safety and lower risk for a child or adult with autism, parents and care providers will need to become proactive and prepare an informational handout, outlined here.

Autism Spectrum Disorders (NICHCY - June 2010)
Discusses autism spectrum disorders (ASD), including common characteristics and the different kinds of ASD. Also provides information about the definition of ASD under the Individuals with Disabilities Education Act, tips for teachers and parents of children who may be on the spectrum and a list of organizations that provide help.

Children with Autism
The Government Accountability Office conducted a study on educating children with autism and quotes information from the NRC study.

Envisioning a Bright Future: Interventions That Work with Children and Adults with Autism Spectrum Disorders
Patti's Comment: This is a book that's available for sale, but I still wanted to share what looks like a valuable resource.

Grassroots Advocacy 101 (Autism Society of America)
The Autism Society has released the first edition of the “Grassroots Advocacy 101” handbook. Jeff Sell, Autism Society Vice President of Advocacy and Public Policy, drew on his skills as an attorney, former policy maker and advocate to write this helpful document, intended to help Autism Society chapters and concerned individuals more effectively advocate at the federal level, as well as provide basic information on how federal policy gets made and other more advanced resources.

One-to-One Aides for Students with Autism: A Practical and Legal Guide (LRP)
What do you do when parents request one-on-one assistance for their child with autism, but the district thinks it's unnecessary? When parents insist on a particular aide? Or challenge an aide's qualifications?

PICA Disorder
Many children that have sensory related issues /Autism deal with this disorder as well. Some are more severe then others.

The Voices and Choices of Autism
Learning to exist with hope and joy in a world that's not always your "friend."

Organizations and Services

Autism 360
A unique tool which provides an accurate report that captures the details of your child's or your own individuality and offers treatment options that have worked for others with closely matching records.

Autism Family Online
Working together to meet the challenges and share the triumphs of autism.

Autism Risk & Safety Management
Autism training and resources for law enforcement, emergency first responders, parents, educators, care providers, and the autism community.

Autism Society of America
Improving the lives of all affected by autism by increasing public awareness about the day-to-day issues faced by people on the spectrum, and providing the latest information regarding treatment, education, research and advocacy.

Autism Speaks
Dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder.

Autistic License Play
A docudrama, true-to-life play that takes audiences on the rollercoaster ride of raising a child with Autism. It's a sometimes exhausting, sometimes exhilarating, frequently terrifying trip that informs, enlightens and entertains.

Generation Rescue
Jenny McCarthy's autism organization - an international movement of scientists, physicians and parent-volunteers researching the causes and treatments for autism and mentoring thousands of families in recovering their children from autism.

Interactive Autism Network
An innovative online project bringing together tens of thousands of people affected by autism spectrum disorders and hundreds of researchers in a search for answers.

Marino Autism Research
The first philanthropically funded “virtual institute” designed to develop and implement cutting-edge research, including clinical studies and training, to address key questions about the causes of autism spectrum disorder and their treatment.

National Autistic Society
Champions the rights and interests of all people with autism and aims to provide individuals with autism and their families with help, support and services that they can access, trust and rely upon and which can make a positive difference to their lives.

Online Asperger Syndrome Information & Support (O.A.S.I.S.)
From the founder: Although recently reminded that there is no oasis or paradise for those with Asperger Syndrome, I sincerely hope that they, along with parents and professionals, will find a bit of shade and support via the information presented and links available at this site.

UM-NSU Card
A comprehensive outreach and support program serving people with autism and related disabilities, their families, and the professionals who work with them. UM-NSU CARD operates in three Florida counties under the supervision of a constituency board comprised of family members who help guide program policy priorities and activities.

Unlocking Autism
One goal of this organization is to bring the issues of autism from individual homes to the forefront of national dialogue.
Resources: Websites & Blogs

Another Piece of the Puzzle (blog)
The life and times of an introverted bookworm turned passionate autism mom.

Autism and the World Around Me
The story of two autistic ADHD boys from ages 5 and 7 onward who has struggled through many difficulties. We talk about Autism, ADHD, Feingold Diet, GFCF diet, autism news, ADHD news, advertising, communication, family, kids, adults, books, friends, and research.

Autism Bloggers
This is the home site for the Autism Support Netring. If you have a site dedicated to autism, then this is the ring for you. Powered By Ringsurf

Autism Interrupted (blog)
From a mom of a 7 year old son with autism.

Autism Risk & Safety Management
Autism training and resources for law enforcement, emergency first responders, parents, educators, care provides, and the autism community.

Autism Support Network
Connects families and individuals touched by ASD with each other, provides support and insight, and acts as a resource guide for treatments, strategies and therapies for autism. Patti's comments: This is a great resource for planning for social goals in education.

CareTrak Systems
Families with children affected by autism have used the Home Perimeter Sysem to alert them if the child leaves the yard, giving them the ability to actually track their child up to a mile away.

Disability Scoop
The first nationally focused online news organization serving the developmental disability community including autism and fragile X, among others.

Dr. Chris' Autism Journal
This blog provides “thoughts, commentary, and analysis on computer-assisted instruction and Autism Spectrum Disorders” by Dr. Chris, a licensed psychologist and board certified behavior analyst specializing in autism and related disorders.

Free Spectrum Pilot Programs for Autism, Aspergers and ADD/ADHD (Facebook group)
This is the Facebook group page for announcement, discussions and events concerning the pilot programs associated with spectrum disorders that are part of Michigan Indigo Children & Families Network.

Gluten Free Casein Free Food
The official GFCF diet support group re: dietary intervention treatment for
autistic spectrum disorders. Suggested by The Autism Research Institute & DAN! Practitioners, dietary intervention may be that one piece of "the puzzle" which helps a child with ASD toward the road for recovery.

Go to the Back of the Bus! (One Dad's Opinion Blog - Sept. 2007)
Regulations Proposed to Eliminate Federal Medicaid Reimbursement to Schools - an opinion from a dad raising an autistic child.

National Institutes of Health (Autism info)
Info and links.

New England Autism Examiner
A resource by the co-founder of the Autism Support Network.

No Myths
Offers a refreshingly positive and optimistic view about life with autism. And it was written and performed by people who should know--individuals who are on the autism spectrum themselves. The purpose of the PSA is to tell society that, with the right supports, people with autism can do anything anybody else can do, even if it isn't in the same way.

StimTalk (blog)
All Autism - all the time - to teach and share information, to listen and support, to give you options, to give you hope.

Teen Autism
This mom decided to start the Teen Autism blog as a way to connect with other parents of autistic teens, to gain insight from those who have been through the teen years, as well as to offer encouragement to those just entering them.

WrongPlanet.net (forum)
A web community designed for individuals (and parents of those) with Autism, Asperger's Syndrome, ADHD, PDDs, and other neurological differences.

 
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Disabilities Links: ADA/OlmsteadArticlesAssistive TechnologyAutismAutism NewsAwardsBlindnessBrain InjuryCerebral PalsyDeafnessDisability Rights MovementDown SyndromeEducation IssuesEmploymentEpilepsyFInancial Issues Health CareHousingLearning (Special Education)LegalMisc. • OrganizationsPeople First LanguageResources: (Websites/Blogs)Self-DeterminationTravel