Other autism resources from See Sam Run
Resources updated and annotated, from See Sam Run
After I signed a contract with UNT Press for See Sam Run back in 2005, the publisher asked me to develop an appendix with autism resources. I didn’t feel like an expert and hesitated at first. However, because the publisher was an academic press, I understood this was part of their mission. Fortunately, various professional associations were starting to put resources on their websites, so that gave me a leg up. I grabbed one of my earliest journals, which had evolved into a resource diary, to annotate a resource list for See Sam Run.
After migrating from Blogspot to a website, we added that appendix as a resource page. After another migration, the resource page needed updates. I confess, that editing job sat on my to-do list until now. The autism world has morphed in the last 20 years—and that made me hesitant all over again. Still, passing on things you know and what helped your autism journey, parent to parent, is one of the best ways for us to build knowledge and support each other.
Where to find general autism information and parenting support
Formed in 2006 by two self-advocates, this group run by and for autistic people, “Nothing About Us Without Us,” focuses on public policy, scientific issues, and disability rights.
This grassroots group has evolved since it was founded by an autism parent in 1965 and hosted annual conferences. They remain one of the flagships for autism information and advocacy in the United States, with local chapters serving as a place of connection and support in about 70 communities nationwide. It is home to the Autism Justice Center, which is developing resources for legal professionals, including public defenders, so they may better represent and support Autistic clients. According to the center, by age 21, approximately 20 percent of youth with Autism have been stopped and questioned by police, and nearly 5 percent have been arrested.
Founded in 2005 by the grandparents of a child with autism to support autism research, this nonprofit raises private funds for research and advocates for public funding. It also offers some basic information and support to families facing a new diagnosis or working with Level III autism. Wikipedia has more information the group’s controversial history in relation to vaccines and its early views of autism as a disease.
There’s no support quite like a parent who’s been there. This national network began in Nebraska in 1971 and has a version in nearly every state. In addition to helping build one-on-one peer support, some host online meet-ups and local conferences to build connections and resources.
Health resources
American Speech-Language-Hearing Association
Their website includes valuable information for parents to help foster speech development, which often comes slowly in young children with autism. The stages of speech and language development for babies, toddlers and preschoolers are valuable guideposts for what comes next, and when.
Centers for Disease Control and Prevention Web site, Act Early page
The CDC campaigned to alert family practitioners and pediatricians to the need to diagnose early. The website links to information about, and encourages doctors to take the time for, developmental screenings.
Checklist for Autism in Toddlers (CHAT)
This screening instrument for children eighteen months old was first described in a paper by Simon Baron-Cohen et al. published in the Journal of the Royal Society of Medicine 93, no. 10 (October 2000): 521-525. Researchers have been refining the checklist, which is offered in multiple languages and can be administered at home.
Journal of Autism and Developmental Disorders, Autism Research, and other research publications
Leading research journals can be a resource for doctors and allied health professionals as well as teachers and parents. Original papers cover behavioral, biological, educational, and community aspects of autism. One of Sam’s speech therapists encouraged us to read autism research, telling us to simply skip past the literature review and methodology, which can be difficult for the lay reader, and go right to discussion and results. Those sections often had new, useful insights. For example, we learned how to use video modeling to teach some social skills by reading the research studies on the technique for ourselves.
Reading recommendations, with updated annotations, from See Sam Run
1. Ayres, Jean A. (2004) Sensory Integration and the Child. Los Angeles: Western Psychological Services.
Ayres draws on extensive clinical experience to develop sensory integration theory. A seminal work for occupational therapy, she describes sensory dysfunction in meaningful ways.
2. Farrow, Elvira and Hill, Carol (1975) Montessori on a Limited Budget: A Manual for the Amateur Craftsman. Ithaca, N.Y.: Montessori Workshop.
Filled with simple projects you can make or build.
3. Frith, Uta (2003) Autism: Explaining the Enigma. Malden, Mass.: Blackwell, 2003.
I found the case descriptions created a picture of autism far less abstract than lists of general characteristics.
4. Harris, Sandra L. and Glasberg, Beth A. (2003) Siblings of Children with Autism: A Guide for Families. Bethesda, Md.: Woodbine House.
5. Montessori, Maria (1995) The Absorbent Mind. New York: Holt.
Dispatched to teach the children living in the slums of Rome, Maria Montessori was ahead of her time in observing and describing the way children learn, “a child’s work.” Children are ready to soak up all they can through their five senses, she says.
6. Montessori, Maria (1964) The Montessori Method. New York: Schocken Books.
She describes the science behind the learning activities that she designed. The most important idea was that of toys that teach, designed so that a child can readily see errors and fix them.
7. Powers, Michael D. ed. (2000) Children with Autism: A Parents’ Guide. Bethesda, Md.: Woodbine House.
Foundational guide to the special education system.
8. Rolfe, Randy. (1990) You Can Postpone Anything but Love. New York: Warner Books, 1990.
Rolfe underscores that we all come into the world as loving beings and that layers of loving interaction sustain love’s vibrancy.
Where to find some educational resources
This publishing company specializes in educational books and guides, and they hold conferences to bring authors together with parents, teachers, and people with autism.
Our visit to the preschool in Syracuse opened our eyes to the power of inclusion for kids with autism. Teachers and administrators, while easy to convince of the value of inclusive education in principle, didn’t always have the skills to pull it off.
Lekotek, adaptive toys, and toy libraries
Lekotek was an international network of toy libraries, adaptive computer devices, and trained therapists who help children with disabilities develop through play. Our Lekotek therapist helped us see how much Sam learned when played, too. She had a gift for finding toys that Sam responded to, even though much of her training was toward adapting toys for physical disabilities. There is a toy library association that can help you find services in your community. Some offer adaptive toys, and some are membership-based.
PATH, the Professional Association of Therapeutic Horsemanship
Horseback riding provides stimulation that develops the trunk and core muscles that many kids with autism don’t seem to develop normally. In addition, horseback riding reinforces a social relationship between the rider and the animal. Programs accredited by PATH have submitted to outside review of their programs and operations.
Social Stories
Once social cues are described, kids with autism usually know how to respond. Social Stories can be a gentle, effective way to communicate social cues. The collection has been updated here.