Whether you join a support group, volunteer for an activist group, raise money, or simply talk to anyone who asks, there are a tremendous number of things that you can do. It is important to become a member of an organization that supports autism, if only for the power of numbers. The more members that an organization has, the more power they have to create change. And there is change needed in so many areas:
However, it is critical to understand activism. Effective activism is, as an old quote says, “The difference between getting someone in your corner and cornering them.” Activism is not absolutism and is highly political in nature. Things get done either incredibly slowly or incredibly quickly and much of it is based on who gets involved at what time.
There is a continuum of activism that you can choose. Just by having a child diagnosed with autism, you are involved, and that involvement can then grow in many different directions.
Local activism seeks to make small, immediate changes in the local schools, community, or businesses. It is a more personal approach and people and their families are immediately known.
State-level activism seeks to make larger, more significant changes in the state’s schools and laws. It generally involves working at a local level and the connection of a local organization or community to state-level politicians. Very often, educational and insurance reforms are the goals at the state level. Such changes take a little longer to take effect, but can have powerful impacts on the children within that state.
National-level activism seeks to make very significant changes in the nation’s awareness, research findings, and treatment of autism. Rather than making changes at the immediate local level of response to autism, national efforts tend to focus on the understanding and treatment of autism, and promoting national, and even international, networking and fundraising. Such changes take a significantly longer time than local changes, but the effects can be larger and longer-lasting.
Whatever your role—parent, educator, researcher, activist, family member, or person on the spectrum—each of us has a very important role to play in communicating, learning, and helping others. It’s interesting that a condition that resists communication and social behaviors should require so much of it. Your little part can help tremendously.
The following is a list of resources that I found helpful in my “map” for high-functioning autism. This is a partial list of everything possible, and I encourage you to seek out the many, many other resources out there. This is a map that you create as you go along, and there are lots of roads, paths, and travel agents to help you along the way.
Asperger’s Association of New England—http://www.aane.org
Autism Collaboration—http://www.autism.org
Autism Europe—http://www.autismeurope.org
Autism National Committee—http://www.autcom.org
Autism Research Institute—http://www.autism.com
Autism Society of America—http://www.autism-society.org
Autism Speaks—http://www.autismspeaks.org
Autism Treatment Center of America—http://www.autismtreatmentcenter.org
Autism Watch—http://www.autism-watch.org
Childnett.tv—http://www.childnett.tv
CHIME—http://www.chimeinstitute.org
Dan Marino Foundation—http://www.danmarinofoundation.org
EEG Spectrum International—http://www.eegspectrum.com
Families for Early Autism Treatments—http://www.feat.org
The Fathers Network—http://www.fathersnetwork.org
First Signs—http://www.firstsigns.org
The Global and Regional Asperger Syndrome Partnership—http://www.grasp.org
Indiana Resource Center for Autism—http://www.iidc.indiana.edu/index.php?pageId=32
The International Center for Reiki Training—http://www.reiki.org
International Society for Autism Research—http://www.autism-insar.org
A Little Wiggle Room—http://www.alittlewiggleroom.com
MAAP Services for Autism and Asperger Syndrome—http://www.asperger.org
National Autism Association—http://www.nationalautismassociation.org
The National Autistic Society—http://www.nas.org.uk
National Dissemination Center for Children with Disabilities—http://www.nichcy.org
National Institute of Mental Health—http://www.nimh.nih.gov
Picture Exchange Communication System—http://www.pecs.com
Sacral Occipital Therapy (S.O.T.)—http://thewaytooptimalhealth.com/Sot.htm
Stanley Greenspan (Floortime)—http://www.stanleygreenspan.com
Talk About Curing Autism—http://www.talkaboutcuringautism.org
Treatment and Education of Autistic and related Communication-handicapped Children—http://www.teacch.com
UC Davis M.I.N.D. Institute—http://www.ucdmc.ucdavis.edu/MINDInstitute
University of Louisville Systematic Treatment of Autism and Related Disorders—http://louisville.edu/childevaluation/star-autism-treatment-program
US Autism and Asperger Association—http://www.usautism.org
Wrightslaw—http://www.wrightslaw.com
The Arc—http://www.thearc.org
Beach Center on Disability—http://www.beachcenter.org
Centers for Disease Control and Prevention—http://www.cdc.gov/ncbddd/autism
Council for Exceptional Children—http://www.cec.sped.org
National Association for Gifted Children—http://www.nagc.org
Autism’s Edges—http://autismsedges.blogspot.com
Autism Diva—http://autismdiva.blogspot.com
The Autism Hub—http://www.autism-hub.co.uk
Ballastexistenz—http://ballastexistenz.autistics.org
Day Sixty Seven—http://daysixtyseven.blogspot.com
Hopeful Parents—http://hopefulparents.org
Left Brain/Right Brain: Autism News, Science and Opinion—http://leftbrainrightbrain.co.uk
MOM-Not Otherwise Specified—http://www.momnos.blogspot.com
One Dad’s Opinion—http://onedadsopinion.blogspot.com
NTs Are Weird—http://thiswayoflife.org/blog
University Students With Autism and Asperger’s Syndrome—http://www.users.dircon.co.uk/~cns
#Asperger—http://www.inlv.demon.nl/irc.asperger
The Autism Channel—http://www.theautismchannel.com
Collins, P. (2005). Not even wrong: A father’s journey into the lost history of autism. New York, NY: Bloomsbury.
In his search to understand his son’s autism, Paul Collins delves into historical figures that would be considered autistic today, particularly the “Wild Boy” from the 18th century and other talented eccentrics. It describes both his family’s work with his son while contrasting their process with historical perceptions.
Cutler, E. (2004). Thorn in my pocket: Temple Grandin’s mother tells the family story. Shawnee Mission, KS: Future Horizons.
Written by the mother of one of the most prolific authors with autism, Temple Grandin, Thorn in My Pocket describes how she fought to keep her daughter out of an institution as a “infant schizophrenic” during the 1950s—a time where mental disorders were not understood, nor accepted in the mainstream of family life. She also traces the evolution of autism as a poorly misunderstood and frightful issue to one that is an extreme of our own humanity.
Gardner, N. (2008). A friend like Henry: The remarkable true story of an autistic boy and the dog that unlocked his world. Naperville, IL: Sourcebooks.
This is a very uplifting account of how a dog helped a boy with autism begin to open up and learn to communicate with others. It shows how animal therapy, often overlooked, can help treat different conditions.
Gaston, L., & Gaston, R. (2009). Three times the love: Finding answers and hope for our triplets with autism. New York, NY: Avery Publishers.
Describing their experiences with triplets with autism, the Gastons share their negative experiences with Applied Behavior Analysis and their search for alternative therapies. It details their battles with local schools and their choices for biomedical interventions. They have been featured on Good Morning America and CNN.
Grinker, R. R. (2008). Unstrange minds: Remapping the world of autism. New York, NY: Basic Books.
With a daughter diagnosed with autism, Dr. Grinker examines the worldwide explosion of autism and concludes that it is a societally defined difference that is in fact, a numbers game. He travels to, and looks at, other countries’ perspectives of autism and states that the changes in numbers reflect an anthropologic shift, not a true increase. He expresses significant frustration that his daughter’s strengths are ignored over her challenges.
Iverson, P. (2007). Strange son: Two mothers, two sons, and the quest to unlock the hidden world of autism. New York, NY: Penguin Books.
This is the story of Tito Mukhopadhyay and his mother who were convinced to come to the United States by Portia Iverson, the co-founder of Cure Autism Now (CAN). Together, they sought to tell their stories of how much potential their children have.
Kephardt, B. (1999). A slant of sun: One child’s courage. New York, NY: Harper Perennial.
Written before autism became so prevalent, this book is one of the first to describe a parent’s journey to diagnosis and treatment. It is a description of finding help, accepting differences, and developing strengths in a child who improved significantly.
McCarthy, J. (2006). Louder than words: A mother’s journey in healing autism. New York, NY: Plume.
This is a great book about a mother’s journey of how she found the GFCF diet to help her son. It was very warmly written and “spoke” to me because of her common sense approach.
McCarthy, J. (2008). Mother warriors: A nation of parents healing autism against all odds. New York, NY: Dutton.
An activist’s journey, the book describes how Jenny McCarthy found a group of like-minded mothers who are working to save their children from autism through inoculation reform and diet.
Maurice, C. (1994). Let me hear your voice: A family’s triumph over autism. New York, NY: Ballantine.
One of the first books written by a mother about rescuing her child from autism, it has served as inspiration to many mothers.
Merchent, T. (2007). He’s not autistic, but... How we pulled our son from the mouth of the abyss. Noblesville, IN: Joyous Messsenger Books.
This book details a mother’s search for treatments for her child’s challenges that appeared to be autistic behaviors. With the help of a master herbalist and prayer, she worked to cure her son’s aluminum poisoning, parasites, and yeast issues.
Notbohm, E. (2005). Ten things every child with autism wishes you knew. Arlington, TX: Future Horizons.
This is a great short book listing ways to understand your child with autism. From “(1) I am first and foremost a child,” to “(10) Love me unconditionally,” the book traces philosophical underpinnings when working with children.
Paradiz, V. (1996). Elijah’s cup: A family’s journey into the community and culture of high-functioning autism and Asperger’s syndrome. Glencoe, IL: Free Press.
This book describes a mother’s acceptance of her son’s Asperger’s syndrome and her efforts to help him develop self-advocacy skills. Rather than focusing on “fixing” him, she worked on teaching others and teaching him to develop his abilities.
Senator, S. (2005). Making peace with autism: One family’s story of struggle, discovery, and unexpected gifts. Boston, MA: Trumpeter.
Senator’s book about raising her 15-year-old son with autism describes the process of working with the school system, as well as information about her marital issues.
Seroussi, K. (2002). Unraveling the mystery of autism and pervasive developmental disorder: A mother’s story of research and recovery. New York, NY: Broadway Books.
This excellent book is full of medical and scientific information about the GFCF diet. It traces Seroussi’s path as she became a cofounder of the ANDI network devoted to dietary intervention for autism.
Stacey, P. (2003). The boy who loved windows: Opening the heart and mind of a child threatened with autism. New York, NY: De Capo Press.
This is very first book I read that gave me hope and introduced me to Floortime by Stanley Greenspan. Her son had terrible delays and improved significantly.
Whiffen, L. (2009). A child’s journey out of autism: One family’s story of living in hope and finding a cure. Naperville, IL: Sourcebooks.
A memoir of a mother who set up an Applied Behavior Analysis training program in her home and trained the therapists. It details her son’s first 4 years as they tried multiple therapies and the consequent stresses on her marriage, finances, and livelihood.
Carley, M. J. (2008). Asperger’s from the inside out: A supportive and practical guide for anyone with Asperger’s syndrome. New York, NY: Perigee.
Written by the executive director of The Global and Regional Asperger Syndrome Partnership (GRASP), this is an excellent book for adults with Asperger’s syndrome as it describes his diagnosis at the same time as his young son was diagnosed.
Barron, J., & Barron, S. (2002). There’s a boy in here: Emerging from the bonds of autism. Arlington, TX: Future Horizons.
Written in collaboration with his mother, Sean Barron describes his journey “out” of the autism realm to develop his abilities. It describes his perspectives very well.
Grandin, T., & Scariano, M. M. (1996). Emergence: Labeled autistic. New York, NY: Warner Books.
Grandin, T., & Barron, S. (2005). Unwritten rules of social relationships: Decoding social mysteries through the unique perspective of autism. Arlington, TX: Future Horizons.
Grandin, T., & Duffy, K. (2006). Developing talents: Careers for individuals with Asperger syndrome and high-functioning autism. Shawnee Mission, KS: Autism Asperger Publishing Company.
Grandin, T., & Johnson, C. (2006). Animals in translation: Using the mysteries of autism to decode animal behavior. New York, NY: Harvest Books.
Grandin, T. (2006). Thinking in pictures: My life with autism (Expanded ed.). New York, NY: Vintage Press.
Temple Grandin has a tremendous number of books written about her experiences with autism. She is one of the foremost and most prolific authors with autism.
Jackson, L. (2002). Freaks, geeks and Asperger syndrome: A user guide to adolescence. London, England: Jessica Kingsley.
Written by a teenager with Asperger’s syndrome, this memoir provides incredible first-person insights into the challenges faced by teens with differences.
Lawson, W. (2000). Life behind glass: A personal account of autism spectrum disorder. London, England: Jessica Kingsley.
Lawson, W. (2001). Understanding and working with the spectrum of autism: An insider’s view. London, England: Jessica Kingsley.
Lawson, W. (2003). Build your own life: A self-help guide for individuals with Asperger syndrome. London, England: Jessica Kingsley.
Lawson, W. (2005). Sex, sexuality and the autism spectrum. London, England: Jessica Kingsley.
Lawson, W. (2006). ASPoetry: Illustrated poems from an Aspie life. London, England: Jessica Kingsley.
Wendy Lawson, less well-known than Temple Grandin, but prolific in her own right, provides excellent, clear advice on having autism.
Mukhopadhyay, T. R. (2000). The mind tree: A miraculous child breaks the silence of autism. New York, NY: Riverhead Books.
Mukhopadhyay, T. R. (2008). How can I talk if my lips don’t move? Inside my autistic mind. New York, NY: Arcade.
A series of poems and stories written when he was 8, 11, and an adult, these books share Mukhopadhyay’s perceptions of the efforts his mother went through to get him services and help.
Page, T. (2009). Parallel play: Growing up with undiagnosed Asperger’s. New York, NY: Doubleday.
Formerly a classical music critic for The Washington Post, Tim Page recounts how he grew up smart, but socially outside of his peers. Diagnosed at age 45 with Asperger’s syndrome, Tim describes how his diagnosis explained so much of his fascination with music, but his struggles with people.
Robison, J. E. (2007). Look me in the eye: My life with Asperger’s. New York, NY: Crown.
The brother of Augusten Burroughs, who wrote Running With Scissors, John Elder Robison details the combination of ASD and mental illness that surrounded him as he was growing up.
Stillman, W. (2008). The soul of autism: Looking beyond labels to unveil spiritual secrets of the heart savants. New York, NY: Career Press.
Stillman, W. (2009). Demystifying the autistic experience: A humanistic introduction for parents, caregivers and educators. London, England: Jessica Kingsley.
Providing a view of what autism is like and the reasons behind many behaviors that are misunderstood, these books offer a very “human” view, as well as a deep insight into spiritualism from someone who has autism.
Tammet, D. (2007). Born on a blue day: Inside the extraordinary mind of an autistic savant. New York, NY: Free Press.
Exploring synesthesia and autism, the book details the amazing and insightful talents of a man with autism and giftedness in math and numbers.
Willey, L. H. (1999). Pretending to be normal: Living with Asperger’s syndrome. London, England: Jessica Kingsley.
Written by a woman with Asperger’s syndrome, this story recounts how she grew up knowing that she was smart but quirky and her eventual marriage to a sympathetic partner. The story also describes how she relates to her daughter, who was diagnosed with Asperger’s syndrome early in life. The book is interesting because it’s one of the few about women with this issue.