Jeremy and Chantal Sicile-Kira
When my son Jeremy was little, the Internet was not yet available to use at home, and autism
was pretty rare, so it was hard to find practical information.
Those days are long gone, and now, it seems like there is too much information. Parents still have to learn how to become experts about autism, and they need to be observant of their baby or child's strengths and challenges, and how they differ from others. Because every child is different, what is helpful in terms of treatments, therapies and strategies for one child may not be for another. Some children have medical health issues, some do not. Some have more sensory processing and mortor challenges than others. Sorting through all the information for what your child needs is necessary.
In last week’s blogpost, I shared some basic tips for parents of newly diagnosed children with autism. Here, I’ll be listing some recommended non-profit organizations and free on-line resources to start empowering yourself with knowledge. As explained in my updated book Autism Spectrum Disorder, whether you are a parent or a professional new to the world of autism it’s important to get information from valid sources.
Here are some national organizations with which to start your research; they all have good websites. Some offer free webinars, others have downloadable papers and toolkits and still others have local chapters that you can join. Some are mainly geared towards young children, others towards teens and adults. I've listed them alphabetically.
Autism Research Institute (ARI) provides online and in-person educational events for parents and caretakers and continuing education credit for physicians, teachers, dietitians, and occupational therapists. A good resource for new parents to read on this website is: Advice for Parents of Young Autistic Children (2012, Revised) - Part 1 and Part 2
Autism Society of America (ASA) increases public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy. There are local chapters.
Autism Speaks has grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. There are local chapters.
Autism Women’s Network (AWN) is an online community of autistic girls and women, their families, friends and supporter, and provides a place where all can share their experiences amongst a diverse, inclusive supportive and positive environment.
Autistic Global Initiative (AGI), a project of the Autism Research Institute, is comprised of a committee of adults diagnosed with autism spectrum conditions and exists to foster the development of adults on the autism spectrum and those who work with and for them.
First Signs First aims to educate parents, healthcare providers, early childhood educators, and other professionals to ensure the best developmental outcome for every child. Goals include improving the screening and referral practices and to lower the age at which young children are identified with developmental delays and disorders.
Global and Regional Asperger Syndrome Partnership (GRASP) works to improve the lives of adults and teens on the autism spectrum through peer supports, education, and advocacy with an emphasis on community outreach and individuals advocating for their own needs. There are local chapters.
National Autism Association (NAA) responds to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential. There are local chapters. The NAA is also the leading and most expereinced organizaion on autism-related wandering prevention and response.
Organization for Autism Research (OAR) uses applied science to answer questions that parents, families, individuals with autism,teachers and caregivers confront daily. Free downloadable resource guides on numerous autism topics are available.
Profectum exists to create a community of caring families, clients, multi-disciplinary professionals and leaders in the field, committed to promoting treatment approaches that address the unique needs of the individual at any stage of development from early childhood to adulthood, integrating the best treatment models across disciplines and intervention approaches.
Talk About Curing Autism (TACA) is dedicated to educating, empowering and supporting families affected by autism. For families who have just received the autism diagnosis, TACA aims to speed up the cycle time from the autism diagnosis to effective treatments. There are local chapters.
For more informaiton on resources, see Autism Spectrum Disorder; but these are a good start.
Next week I'll share more tips a parent new to autism may find useful.