WeAreAutism.org - The Social Support Network for People Living with Autism

WeAreAutism.org Makes the List! 100 Useful Sites, Networks, and Resources for Parents of Autistic Children

May 22nd, 2009 by Valerie Chavez

It is difficult to read the news or watch TV today without hearing
about autism. What many believe has become an epidemic has brought
autism to the forefront of society as scientists scramble to understand
it and parents reach out for ways to help their children. The following
resources include organizations, social networks, informational sites,
helpful articles, blogs from parents and science-based writers, and
even ways to help with the financial burden that autism can place on a
family.

Organizations and Groups

The following organizations and groups all promote education,
research, and support for families touched by autism and all have
plenty to offer.

1. Autism Society of America.
   Find out about research and programs, get tips, learn about living with
   autism, autism news, resources, and even sensory-friendly film showings.
2. Autism Speaks.
   This organization is promoting public education as well as research for
   a cure. They include information on early signs as well as other
   information, autism in the news, sponsor walk events, and offer family
   support through social networks and outreach.
3. TalkAutism.
   With a database of professionals, a place for those seeking help to
   reach out with their requests, and online presentations offering
   information on a variety of topics this group offers support for
   parents and caregivers.
4. Organization for Autism Research.
   This group was organized by parents and grandparents with autistic
   children and focuses on educating parents, teachers, and caregivers
   about autism through applied science.
5. Unlocking Autism.
   Working to speak for those with autism by getting information to the
   public as well as providing parents with information about legislation,
   biomedical research, and more, this group is a great resource to stay
   on top of what’s going on behind the scenes.
6. National Autism Association.
   Educating and empowering families while funding research for autism are
   the goals of this organization. Learn about research projects, find
   help for families, and more.
7. Autism Research Institute.
   This organization is the home to the Defeat Autism Now! approach that
   believes autism can be cured through biomedical intervention that moves
   the focus of treatment away from psychotropic drugs as a primary means
   of treatment. This site offers tons of information on autism.
8. Easter Seals: Help, hope and answers. The resources here include results from the Easter Seals’ Living with Autism Study, state-by-state profiles and services, and their autism blog.
9. The Arc of the United States.
   This national group offers information and support for families and
   adults living with intellectual and developmental disabilities with
   local chapters that can offer services such as advocates to attend ARD
   meetings at your child’s school, case management services, and respite
   care.
10. Autism Network International. This organization is run by adults with autism with the goals of self-help and advocacy for those with autism.
11. Families for Early Autism Treatment (FEAT).
    This specific group is based out of Northern California, but they have
    chapters in many other cities across the US and focus on
    scientifically-based intervention and treatments for children with ASDs.
12. The National Autistic Society. This organization from the UK offers support, information, news, events, and more.

Support and Social Networks

These groups are specifically created for support and networking
opportunities for parents, educators, and caregivers working with those
with autism.

1. Autism and PDD Support Network. Find forums and message boards, links to resources, and their new community–Moms Fighting Autism.
2. Parent to Parent USA.
   This nationwide organization has local chapters that link parents with
   other parents who have children with similar medical or behavioral
   issues. They have a section specifically for autism spectrum disorders.
3. Moms Fighting Autism. Create your own profile to meet others or just browse through the posts on this social network of moms fighting autism.
4. Autism Speaks Social Network.
   This social network sprung from the larger organization by the same
   name and offers groups, forums, blogs, profile pages, and more for
   members.
5. Autism Support Network.
   Find a group, connect with other members, or read what others have to
   share about their experiences with autism and Asperger’s.
6. Model Me Kids Social Network. The members here include parents, caregivers, educators, and people with autism and Asperger’s.
7. WeAreAutism.org. This social network is for those living with ASDs and allows opportunities for social connection and sharing.
8. Autism Parents.
   This site is specifically for single parents who have a child or
   children on the spectrum and offers a place for support and social
   connection.
9. The A-N Social Network.
   Create a customized profile page, post photos and videos, or talk with
   others on the forums at this social network designed to connect those
   dealing with autism.
10. Grandparent Autism Network.
    This organization serves a dual purpose with articles and videos to
    help inform and support grandparents of grandchildren dealing with
    autism and also providing face-to-face support for grandparents and
    their families in southern California.

Understanding Autism

From recognizing early signs of autism to understanding
communication and autism, the following resources will help you learn
more about autism.

1. Learn the Signs. Act Early.
   Get plenty of information about child development from the information
   here that is designed to help parents, educators, and caregivers
   recognize developmental disorders in children from birth to 5 years.
2. American Academy of Pediatrics Developmental Stages.
   You can rely on this information to provide you with developmental
   stages of typically-developing children. Use this as a general
   guideline to recognize if your child is developing according to this
   schedule.
3. First Signs. This resource offers information on recognizing autism, screening and referrals, treatment options, and more.
4. Autism A.L.A.R.M..
   This fact sheet is specifically designed for physicians, but provides
   helpful information on recognizing the potential of ASDs.
5. What are the Autism Spectrum Disorders?. This article offers a good overview of the various autism spectrum disorders and their similarities and differences.
6. Your Child: Autism, Autistic Spectrum Disorders (ASD) and Pervasive Developmental Disorders (PDD).
   From the University of Michigan Health System, this resource provides
   basic information about the various types of autism spectrum disorders.
7. CDC Autism Information Center.
   Find early warning signs, learn about screenings and diagnosis, learn
   about treatment and therapy options, and read research about the
   suspected relationship between vaccinations and autism.
8. Autism Research at the NICHD. Learn about the autism research going on at the National Institute of Child Health and Development.
9. NIMH - Autism Spectrum Disorders. This resource offers a close look at ASDs, including diagnosis, treatments, and research.
10. Autism and Communication.
    Learn about autism and communication with the information here from the
    National Institute on Deafness and Other Communication Disorders.
11. MedlinePlus: Autism.
    This resource offers links to many articles and publications offering
    information on everything from the basics about autism to diagnosis and
    treatment to coping to clinical trials.
12. AutismWeb: A Parent’s Guide to Autism and PDD. This site provides several links to everything from warning signs to treatment options to finding support.

Treatments and Therapies

Learn about various treatments and therapies used with children on the spectrum with these resources.

1. Lovaas Institute.
   Dr. O Ivar Lovaas is a pioneer in the treatment of autism and began
   using his method of Applied Behavior Analysis (ABA) over 40 years ago.
   Learn more about this treatment therapy and find help in your area here.
2. ABA Resources for Recovery from Autism/PDD/Hyperlexia. This page is run by a father with a child with autism and provides information about ABA therapy.
3. The Interdisciplinary Council on Developmental and Learning Disorders Floortime Overview.
   Founded by Stanley Greenspan, MD, and Serena Wieder, PhD, this project
   helps parents, educators, and caregivers connect with children on the
   spectrum by focusing on social, emotional, and intellectual abilities.
4. The PLAY Project.
   The focus of this project is to provide opportunities for parents,
   caregivers, and educators to learn interventions appropriate for young
   children with ASDs based on the work done by Dr. Stanley Greenspan.
5. Autism Treatment Center of America.
   This organization is the home of the Son-Rise program, which approaches
   treatment through embracing what the autistic behaviors communicate
   about children with ASDs and working to discover and incorporate what
   motivates them into the treatment plan.
6. Sensory Fun.
   This website offers a quick glimpse at Sensory Integration Dysfunction
   as well as provides ideas for activities and tools to help your child.
7. Social Skills.
   With plenty of links and examples for teaching social skills, this is a
   good place to start if you are working on teaching social skills to an
   autistic child.
8. ANDI - Autism Network for Dietary Intervention. Learn about dietary intervention and find support and resources too at this site.
9. The GFCF Diet. This site will help you learn about implementing and maintaining a gluten and casein-free diet to help treat autism.

Articles Discussing Autism Issues

From tips for traveling with an autistic child to helping a fussy
eater to understanding new genetic discoveries, these articles offer
information you may want to know.

1. Researchers Find First Signs of Autism Even in Infancy. Learn how researchers are discovering what signs to look for in young infants to recognize the potential for autism.
2. Six Tips for Traveling with an Autistic Child.
   If you decide to take a family vacation or need to go out of town for
   any reason, read this article for great suggestions to minimize the
   disruption that may be difficult for your child to manage.
3. Interview with Dr. Temple Grandin.
   Read what Dr. Grandin has to say about her experiences living with
   autism and her views on the current issues surrounding autism.
4. Finding and Fighting Autism Early.
   With the importance of early detection and intervention, this article
   looks at how practitioners are working to improve detection so that
   children with ASDs don’t get overlooked.
5. Guide to a Low Cost Intervention Program. Learn how you can start early intervention at home without investing in expensive therapies.
6. Is the Autism Epidemic a Myth?. This article explores the possibility that the rate of autism hasn’t risen, just society’s awareness and recognition of it.
7. Fussy Eaters and Autism.
   Discover why many autistic children are such fussy eaters and learn
   strategies to get your child to eat a wider variety of foods.
8. New research brings autism screening closer to reality. Learn about the controversial issue of screening during pregnancy for autistic traits.
9. Step Forward in Autism Genetics.
   This article explores a discovery scientists have made bringing them
   closer to understanding a genetic predisposition to autism.
10. New Theory of Autism Suggests Symptoms or Disorder May Be Reversible.
    Science Daily reports how scientists are working with a new theory that
    says autistic brains may be disregulated and may possibly be regulated
    to reverse symptoms.

Blogs

Read about current news and trends in autism research or follow
along as parents write about their experiences living and loving a
child on the spectrum.

1. Child Psychology Research Blog. This blog brings research-based news with a heavy emphasis on autism and ASDs.
2. Autism Vox.
   Posts here are written by both the mother and father of a child with
   autism and include insight to their lives as well as some of the latest
   news and suggestions for others.
3. Autism Blog.
   Written by a mother of a child with autism, this blog offers tips and
   support to those working with or living with people affected by autism.
4. Social Skills for Kids.
   Specifically for parents of children with autism, Asperger’s, or ADHD,
   this blog includes great posts touching on important social skill
   issues such as providing down time, helping kids understand subtle
   emotions, and tips for school success.
5. Autism Watch: 2007.
   Parenting her autistic son since his birth in 2000, this mom writes
   about news, research, her experience, and opinions on the current
   trends.
6. What We Need. This mom shares her experience rearing a son with high-functioning autism.
7. Interverbal: Reviews of Autism Statements and Research. This blog written by a special education grad student takes a critical look at the world of autism.
8. Asperger-blog.com.
   Find links to books, resources, and news or get first-hand reports of
   what it’s like having a son with Asperger’s with this blog.
9. Hoping, Not Coping. Spreading the word about autism and sharing their family’s journey, this blog strives to educate others about autism.
10. Action for Autism. From the UK, this father of a son with Asperger’s is also an educator and writes books and speaks about autism.
11. Vaccine Blog. This blog takes a scientific approach to the pro-vaccine stance.
12. Vaccine Awakening. Striving to support parent rights to vaccine choices, this woman blogs about legislature and news surrounding parents’ rights.
13. VaccineEthics.org Blog.
    This bioethics research organization focuses on ethical practice of
    medicine. Their blog reports the latest news on the vaccine and
    bioethics front.

Regional Resources

These resources are aimed at helping those in specific geographic
locations, but also often provide helpful information on their websites
no matter where you live.

1. Families Together.
   Families in Washington, Idaho, and Maryland can benefit from the
   workshops designed for parents and typically-developing siblings of
   those with disabilities as well as Family Enrichment Weekends.
2. Families Together, Inc.. This organization offers support for families in Kansas who have a child with special needs, including autism.
3. Southwest Autism Research & Resource Center.
   Families in the Arizona area will benefit from the services offered
   through this organization. There is also a Spanish version of this
   website.
4. Thoughtful House.
   Located in Austin, TX, this center focuses on recovering those with
   autism spectrum disorders through a combination of diet, therapies, and
   medical care.
5. The Help Group.
   Founded in 1975, The Help Group has seven campuses in the Los Angeles
   area offering specialized day schools to children on the spectrum from
   Kindergarten through high school.
6. Fay J. Linder Center for Autism. This center provides services for children and adults with autism in the Long Island area.
7. Douglass Developmental Disabilities Center. Families in the New Jersey area can take advantage of the ABA services provided by Rutgers.
8. McCarton Foundation.
   This foundation in New York offers a school that incorporates ABA, peer
   interaction, and speech and language therapy as well as research done
   in conjunction with Rutgers and a training facility for parents,
   educators, and caregivers.
9. TEACCH Autism Program.
   Located in Chapel Hill, NC, this program offers clinical services,
   training, and current research to help those on the autism spectrum.
10. Koegel Autism Center.
    A part of the University of California, Santa Barbara, this center
    focuses on research and treatment of ASDs with a specific interest in
    Pivotal Response Treatments (PRT).
11. Autism Center - University of Washington.
    Not only can those located near this university participate in research
    studies, this site offers lots of links to information about autism
    spectrum disorders.

Financial Assistance Resources

Having a child with autism is expensive. Many couples discover that
one partner must stay home with their child as child care is not
available and the treatments and interventions are often expensive and
frequently not covered by insurance. Use these resources to help lessen
the financial burden autism may create for your family.

1. Helping Hand.
   This grant is funded through National Autism Association and provides a
   one-time opportunity for those families in serious financial need.
2. Family First.
   Another grant from NAA, this one is a one-time grant for couples
   seeking marriage counseling to help prevent the alarming rate of
   divorce among couples with a child on the spectrum.
3. Aid for Autistic Children Foundation.
   This organization provides financial assistance to families who are
   burdened with the expenses associated with caring for someone with
   autism. They typically provide assistance for therapies or services
   already paid by the family.
4. Direct and Indirect Financial Support for Families. This resource offers suggestions for finding financial help grouped by the country in which you live.
5. Mesa Angels. This organization provides financial assistance to those experiencing catastrophic experiences, including medical issues.
6. Financial and Medical Assistance for Families with Autistic Children. Learn how to apply for Social Security assistance with medical expenses related to autism treatment.
7. ModestNeeds.org.
   This organization works to help those who are employed and trying to
   stay afloat financially an opportunity to connect with donors in order
   to fund their modest needs. Several of those seeking funds are doing so
   for ASD-related issues.
8. Autism Assistance Resources and Information.
   Started by a mom with two children on the spectrum, this blog offers
   places that families coping with autism can turn to for financial
   assistance.
9. Grants for Families Living with Autism. This About.com article offers resources for families to find financial aid when dealing with autism.

Shopping Resources

The following resources offer online shopping for items specifically geared toward making life easier or treating autism.

1. Autismshop.com.
   Parents and educators can find books, software, sensory chewables, time
   timers, visuals, music, and games and toys all specifically designed
   for those with autism.
2. ABA Educational Resources Ltd.. Find flashcards, videos, books, and other tools to help you with your ABA therapy at home.
3. Natural Learning Concepts. This store offers educational materials, therapy tools, and sensory toys for children with special needs, especially autism.
4. DreamCatcher Weighted Blankets.
   Shop the selection of weighted blankets available at this store run by
   parents of a son with classic autism who designed the blankets around
   their son’s needs.
5. Giving Greetings. Parents and educators can find visual support material to help promote communication.
6. OZMO. Find fun toys, books, puzzles, and more specially designed for those with autism.

Pervasive Developmental Disorders (PDD), Asperger’s Syndrome, and Nonverbal Learning Disorder

Typically considered higher functioning types of autism, these resources offer information on PDD, Asperger’s, and NVLD.

1. Childbrain.com - PPD/Autism. Find out what PDD is and how it relates to autism, how it’s diagnosed, and more from this site.
2. The Eli & Edythe L. Broad Asperger Center.
   Read publications, find out about current research projects, and
   discover presentations occurring on the topic of Asperger’s from this
   center out of UCSB.
3. Weird Not Stupid.
   This website is run by a sibling with an older sister and a younger
   brother who both have Asperger’s Syndrome. You can find plenty of
   helpful information about Asperger’s and NVLD here.
4. O.A.S.I.S.. This site has a wealth of information for those learning about Asperger’s and related disorders or seeking support.
5. MAAP Services for Autism and Asperger Syndrome.
   This group offers regional resources as well as information and news
   for families dealing with ASDs–especially those higher functioning
   individuals.
6. Asperger Syndrome. From Family Village, this page offers tons of resources for those seeking information on Asperger’s and related disorders.
7. Asperger’s Syndrome.
   The Yale Child Study Center provides this overview of Asperger’s as
   well as two PDFs that provide guidelines for assessment and diagnosis
   as well as treatment and intervention.
8. Nonverbal Learning Disorders.
   While the debate continues whether NVLD is a milder form of autism, a
   part of Asperger’s, or a completely different disability altogether,
   this article offers a close look at what NVLD is and how it can be
   handled in school.
   
   LINK: http://www.mastersinhealthcare.com/blog/2009/100-useful-sites-networks-and-resources-for-parents-of-autistic-children/