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All About Autism
Understanding
Autism Treatment and Education
Autism is a complex developmental
disability that affects an individual in the areas of social interaction
and communication. Autism is a spectrum disorder that affects each
individual differently and to varying degrees of severity. As many as
1.5 million Americans - children and adults - are thought to have autism
today.
Quick Facts About Autism
Autism occurs in 1 in
every 500 births and in a rate of 5 boys to every girl.
Autism
currently affects over 400,000 people in the U.S.
Autism is the third
most common developmental disability following mental retardation and
cerebral palsy.
Autism is more common than multiple sclerosis, cystic
fibrosis or childhood cancer.
Autism receives as little as 5% of the
research funding as other less common diseases.
The annual
per-person allocation for persons with autism is approximately $35. In
contrast, multiple sclerosis receives roughly $158, diabetes $424,
breast cancer $600, and AIDS $1,000. Currently there is no medical
detection, treatment or cure for autism.
Information provided by
the CAN Foundation (Cure Autism Now)
Additional Facts
Many kids are making
enormous strides and a significant number are now indistinguishable from
their peers.
Behavioral therapies, diet, vitamin and mineral
supplementation, and medical interventions are some of the treatments
effectively being used.
Most of the above interventions are
considered experimental and are not supported by the medical community.
Autism
is a condition whose treatments are specifically excluded by some
insurance companies.
 What Does IDEA
Mean For A Child With Autism IDEA is our nation's special education law.
IDEA stands for Individuals with Disabilities Education Act. IDEA guides how states and
school districts provide special education and related services to more
than six million eligible children with disabilities. Learn more about
this important federal law here!
What does IDEA mean for a child with
autism?
IDEA is divided into four sections, called Part A–D. Each
part relates to some area of educating children and youth with
disabilities. These parts are:
1. Part A defines the terms used in
the law. For example, the terms Child with a Disability and Free
Appropriate Public Education are defined in Part A.
2. Part B gives
money to States to provide services for eligible children and youth with
disabilities. Part B includes the rules and regulations that States and
school systems must follow to receive funds from the Federal
government. This includes what must be done with respect to:
•
evaluating children for the presence of a disability and their
eligibility for special education and related services;
• notifying
parents and involving them in their child's education;
• working
with parents to write IEPs for eligible children;
• providing
special education and related services to children with disabilities;
•
resolving conflicts between parents and the school system; and much,
much more.
Because Part B focuses on schools and children, it is
probably the best known part of the law.
3. Part C is the Early
Intervention Program for Infants and Toddlers with Disabilities. This
program helps States develop and operate a system for providing early
intervention services to infants and toddlers and their families. This
system must include all of the agencies that might provide services,
such as the Department of Education, Health, and Social Services. Some
of these services may include family training, counseling and home
visits, speech-language services, occupational therapy, and physical
therapy. Like Part B, Part C is well known, primarily because it, too,
deals with children.
4. Part D helps State education departments and
other agencies improve how they work with children and youth with
disabilities. Although lesser known than Parts B and C, Part D is
critically important, because it builds the capacity of early
intervention systems and schools to address the unique needs of children
who have disabilities. Part D provides the information and research
that informs professional practice and families. Under Part D, the
Federal government provides grants to universities, colleges, and other
organizations to:
• Prepare teachers to teach all students, including
students with disabilities;
• Do research into best practices for
children and youth with disabilities;
• Publicize information about
services to parents, teachers, and other professionals working with
children;
• Operate parent training and information (PTI) centers,
which work directly with families;
• Operate information centers
like NICHCY;
• Develop technologies for professionals and children;
and
• Operate demonstration projects that investigate new or
promising educational practices.
Each part of the law has a crucial
role to play in the education of children with disabilities. Together,
they work to ensure that the four purposes of the law are carried out.
As stated in the opening words of IDEA's implementing regulations for
Part B:
"The purposes of this part are—
(a) to ensure that all
children with disabilities have available to them a free appropriate
public education that emphasizes special education and related services
designed to meet their unique needs and prepare them for employment and
independent living;
(b) To ensure that the rights of children with
disabilities and their parents are protected;
(c) To assist States,
localities, educational service agencies, and Federal agencies to
provide for the education of all children with disabilities; and
(d)
To assess and ensure the effectivenessness of efforts to educate
children with disabilities." (34 Code of Federal Regulations Section
300.1, Purposes.)
 Developmental
Delay Resources
 ABA Resources
More Autism Facts and Info
Autism is a neurological
disorder in which people have difficulty communicating and interacting
socially with others.
Autistic children often speak little, ignore
others and display repetitive behavior, such as spinning in circles or
focusing on one object for hours. They may excel at something in detail,
such as spelling or playing a musical instrument, but become
overwhelmed when trying to navigate the world at large.
In the
United States, about 17 percent of children have a developmental or
behavioral disability such as autism, mental retardation and
attention-deficit/hyperactivity disorder.
New studies suggest that
the earlier the detection, the greater chance of improvement in
language, cognitive, social and motor skills.
Early Signs of
Autism:
At 6 months:
Not making eye contact with
parents during interaction.
Not cooing or babbling.
Not smiling
when parents smile.
Not participating in vocal turn-taking (baby
makes a sound, adult makes a sound, and so forth).
Not responding to
peek-a-boo game.
At 12 months:
No attempts to speak.
Not
pointing, waving or grasping.
No response when name is called.
Indifferent
to others.
Repetitive body motions such as rocking or hand
flapping.
Fixation on a single object.
Oversensitivity to
textures, smells, sounds.
Strong resistance to change in routine.
Any
loss of language.
At 24 months:
Does not initiate
two-word phrases (that is, doesn't just echo words).
Any loss of
words or developmental skill.
Source: Rebecca Landa, Center for
Autism and Related Disorders at the Kennedy Krieger Institute,
Baltimore.
Links, and information
Sleep Better, A Guide to
Improving Sleep for Children with Special Needs; V. Mark Durand http://www.autismndi.com/
Autism Aspergers Digest
Autism Society of America site is well done, and tries to present objective
information--something not always done on the web, especially in such
an emotion laden area such as autism. The most useful information is
under the RESOURCES section. Check it out.
Mail: 7910 Woodmount
Ave., Suite 650, Bethesda, MD 20814.
Phone: (800) 3-AUTISM
OASIS (Online Asperger Syndrome Information and
Suppport) is a wonderful site and message board dedicated to Asperger's
syndrome. In particular, see WONDERFUL SUGGESTIONS FOR
THE TEACHERS. http://www.udel.edu/bkirby/asperger/
Aspen (Asperger Syndrome Education Network)
lists support groups and features articles on Asperger's. www.aspennj.org/
TEACCH - Information on Autism offers a select
series of informative articles on Autism and Asperger's.
BBB Autism Online Support covers an enlarged autistic
spectrum.
Autcom has excellent, responsible information. See
especially their Red Flags page for evaluating treatment claims.
Asperger Syndrome Coalition of the U.S. has excellent
materials on Asperger's and related conditions.
www.TonyAttwood.com includes
numerous excellent articles and an Asperger's rating scale by the leader
in the field of Asperger's syndrome.
Asperger
Syndrome: Australian Support Center has selected out some truly useful
information.
A
Survival Guide for People with Asperger's Syndrome,
by Marc
Seeger, provides great insight and suggestions from an expert--someone
who lived with Asperger's. www.udel.edu/bkirby/asperger/aswhatisit.html
Adults with Asperger's
Syndrome Autism Society of America http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=212
Asperger's Disorder American Academy of Child
and Adolescent Psychiatry (also in Spanish)
What is
High-Functioning Autism and Asperger Syndrome? National Autistic Society
 Action Plan for Parents with Newly Diagnosed
Kids
1) Testing, Testing, Testing The more the
better. Test early to get a baseline picture of where your child is. A
clear picture of your child's biological condition can facilitate the
proper vitamin and mineral supplementations, and provide a roadmap for
treatments and therapies to follow. This will aid in recovery. See Dr.
Jeff Bradstreet's site for a comprehensive list of tests. Dr. Jeff
Bradstreet's Site
2) Learn and read as much as possible as
quickly as possible. There is an enormous amount of information
available. There are many websites and books. Immediately get a second
phone line and a fax machine so you are able to have uninterrupted
access to the internet. Try to keep an open mind and do not focus on one
intervention or therapy exclusively. There are many autism treatments
and therapies out there. All of them work for certain individuals,
however none of them work for everyone. Search until you find the right
combination for your child. See the following links:
Booklist:
AutismInfo.com
Booklist
Links to other websites:
Other Autism Websites
When
you begin to research, the information can be very complicated, however
the more you read and learn, the easier it is to understand. After a
while the complicated medical information will begin to make sense. This
is like putting together a huge puzzle.
National Library of
Medicine's Medline Search Service
3) Set up an ABA program in
the home.
What is ABA / Discrete Trials / Behavior Modification?
The
more hours the better. ABA works! There are many books and publications
available. In addition there are many organizations around the country
which will set up your program and provide consulting services. A
discussion on ABA is beyond the scope of this site, but please see
Catherine Maurice's books on the booklist, which provide a comprehensive
discussion on ABA. A few general suggestions regarding ABA include
being certain everyone has the same expectations and goals. Have your
tutors and consultants read and sign a "contract" specifically stating
what is expected of them, and what is expected of YOU the parent. This
will make certain everyone is on the same page from the start.
ABA
is a full-time endeavor, but it produces results. Start a program, and
stick with it. It will pay off!
4) Consider a restricted diet
for your child. A wheat-free (gluten) and dairy-free (casein) diet has
helped many children and adults. This is another challenging endeavor
but well worth the effort. In addition, it is complimentary with other
therapies (particularly secretin therapy.) The following links are
excellent:
The Gluten Free/Casein Free Website
List of Vendors
Join
ANDI (Autism Network for Dietary Intervention)
5) Start your
child on a vitamin and mineral supplementation based on the results of
the medical tests. Consult with a nutritionist and your pediatrician.
Try to find both who have expertise in autism. There are many wonderful
doctors and nutritionists who specialize in autism. Find good ones you
feel comfortable with and trust. They may end up providing services
long-distance. (One family I know lives in Atlanta, consults with a
physician in Florida and a nutritionist in Washington DC.) Try this
excellence source:
The Apothocary Custom Vitamins
Dietary
Overview of Autism-Kelly Dorfman Nutritionist
Dr. Woody McGinnis
6)
Begin speech, occupational, and physical therapies where necessary. Try
to get an occupational therapist who specializes in the area of sensory
integration. These are "mainstream" therapies and are generally covered
by one funding source or another.
7) Immediately begin
investigating financial assistance which may be available. You must
continually pursue avenues of financial aid. These are generally
available at the county level for children under the age of three. Apply
for Medicaid requesting the "Katy Beckett" deeming waiver. Autism will
quickly drain your resources, however there is funding and assistance
available. You must ask for assistance. I was amazed at the amount of
help I received. If you do not ask, you cannot possibly receive. You
need to pursue it. In addition, try to keep financial records as best as
possible. Anybody who is providing funding to you, may possibly want a
reasonable accounting from you from time to time. Reed Martin, J.D. has
an excellent website, and has excellent resources available. Reed
Martin, J.D.
8) Consider major lifestyle changes including a
change of jobs or downsizing of your home. Autism will drain your
resources. Sacrifice in the short-term for your child to benefit in the
long-term. You may have to give up golf on the week-ends and make other
personal and professional sacrifices. These personal sacrifices are a
major hurdle for many parents of newly diagnosed kids to overcome. If
you are lucky enough to have a spouse or significant other, support each
other and establish a division of responsibilities. Autism treatment
takes sacrifice, but the hard work will be worth it in the long run.
9)
occasionally, try to get out and relax. This many times becomes the
ideal setting for plotting future strategies for treatment and therapy.
Keep the faith (whatever faith you believe in).
10) Be the moral
booster ("cheerleader") for your doctors, therapists, teachers and
family. By having a positive attitude, others will become invigorated
and will want to help your child and your family. A positive attitude is
infectious! Continually provide those in a position to help, with the
most up-to-date information possible. Educate your doctors and encourage
them to read about autism and autism research.
Read this now
for a bit of motivation and support
A Final Note......
Treating
autism will probably be the most daunting challenge you will face in
your life. Do not give up. Many of the treatments and interventions take
time before results are recognized. Have reassurance in knowing there
are many dedicated parents, researchers, doctors, and other individuals
who are working hard every day to find answers. Work hard every day for
your child or loved one, and demand that others work hard. Benefits will
come as a result.
***
Attitude is Everything!
Don't
Give Up!
 AutismInfo.Com features information in multiple languages.
AHA/AS/PDD
offers an annotated Suggested Reading list and links.
My Brother Has
Asperger Syndrome a free e-bookAutismLink to Collaborate with University of
South Florida
AutismLink is pleased
to announce collaborations with the University
of South Florda CARD
(Center for Autism & Related Disabilities) to
develop and
implement an "Ask The Expert" artificial intelligence
database on
both the AutismLink and USF Card websites.
The site, which will
launch in the Fall of 2006, will feature the
ability for parents or
teachers to pose questions to experts in
autism spectrum disorders,
including educators, doctors, speech
therapists, occupational
therapists and more.
Look for the official launch of the site
soon!!
Cindy Waeltermann
Director
 A Guidebook for
Family and Friends
This page is written for family
and friends of a person with autism. The authors are parents of an
autistic child. We want to provide advice and guidance to persons who
want to understand and help their family members and friends, but do not
know where to begin.
Action Plan for Concerned Family Members
and Friends
Learn as much as possible about this bewildering
disorder. See
our What is Autism Page. Choose a couple of books to start with.
Autobiographies of autistic persons are a great source of information. Dr.
Temple Grandin is an accomplished autistic adult. Her two books
"Thinking in Pictures" and "Emergence, Labeled Autistic", are both
excellent. These can be ordered from Amazon.com or any of the online
booksellers. They may be hard to find in a bookstore though. For more
books, see our booklist. Reading an autobiography will give you the best
understanding of the disorder itself. When you have learned about the
disorder, you will be better able to effectively help your loved one.
If
you live near your loved one, a great contribution is to watch their
child from time to time. Getting out is a great break for parents, most
of whom are under such financial pressure that even if they did have the
time, they couldn't afford a sitter. In addition, a person who familiar
with autism is better capable of caring for an autistic child. Parents
will have peace of mind while they are out, knowing their child is in
responsible hands.
Use
your skills to best help your loved ones. Many kids are on special
gluten-free and dairy-free diets. These diets require a great deal of
effort on the part of parents to impliment and maintain. If you have
good cooking skills, learn about the diets and help in this area.
Additionally, if you have good computing skills, lend your time
researching the internet in autism areas your loved ones are interested
in, and pass the information on to them.
Understand
that visiting another person's house is a challenge for a family with
an autistic child. Consider visiting their house instead, where the
child is in their own environment. Remember, that when strangers
(persons other than immediate family members) are in the house, the
child is anxious and may retreat. Consider making shorter visits with
only part of the family, instead of a larger group.
Try
not to ask why the child does not do things other kids do, or why they
do unique things. This is part of autism. It is frustrating and
distressing to parents when other people expect their child to act a
certain way. We would love for our children to be able to sit at the
table for a whole meal or sit for a half an hour and read a book, but
many of these kids just are not capable of doing it.
Understand that
autistic kids learn better by breaking a relatively complicated task
down into a series of smaller tasks. An example might be going to the
bathroom. In it's entirety, this consists of:
Recognizing the
urge to go
Finding the bathroom
Undressing
Going to the
bathroom
Wiping
Re-dressing
Flushing
Washing hands
It
is hard for people unfamiliar with autism to understand that an
autistic child cannot just learn this immediately. Teaching each of the
tasks separately is an effective way to accomplish the goal. This method
of teaching is called discrete trial training, and is the basis of
behavioral therapies commonly called ABA. This is the most common
teaching method for autistic kids. Becoming familiar with this
methodology will help your loved ones and you when it comes to
interacting and teaching the child.
If
you have children yourselves, teach them about autism, and why their
cousin or friend does not always respond to them or acknowledge their
presence. Coordinate play sessions and try to incorporate things that
are currently being taught. Encourage your kids to be understanding and
compassionate of their friend who is different.
Be understanding
during the holidays, birthdays or special occasions if your family
declines an invitation to a get together. These situations are very
overwelming for an autistic child and usually, they will just shut down
or worse "melt down". Needless to say, this is stressful for both the
child and parents, and is just no fun. If the family does not make it,
try calling and telling them you understand why they are not able to
come, and just wanted to let them know you were thinking of them.
Try
to plan activities that the autistic child can enjoy. Maybe she excels
in swimming. You could plan a pool party or an outing to the beach.
Maybe they like animals and would enjoy a trip to the zoo. Try to find
an activity that all the family members are comfortable with.
When
purchasing a Christmas or birthday gift, try giving a functional gift.
Great gift ideas include supplies to be used in a home therapy program,
special diet items, vitamins, and nutritional supplements. They
may not seem like the most exciting gifts, but they would be
appreciated. In addition, shopping for an autistic child is difficult.
Chances are, they wear certain types of clothing because of sensory
issues, and play with a limited number of toys and books. Checking with
your loved one is a way to enure your gift will be a success. Consider
giving a gift certificate.
After a couple of
years, if you are comfortable with autism and caring for your autistic
loved one, consider offering to stay with the child for a few days to
allow the parents to take a quick "overnight" vacation. Chances are,
unlike you, they have not had a real break in a long time.
Think
about joining an autism organization to show support for research and
awareness. Your family or friend probably is involved with an
organization already and would be grateful for your support.
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