An autism diagnosis can be extremely overwhelming on a lot of levels. There is A LOT of information out there, some helpful, some downright toxic. This topic will be part of a 2-part series to allow caregivers the opportunity to fully explore resources available instead of being overwhelmed by the amount of information.
So where does BAC guide parents? Here are a few places to start …
BLOG POSTS BY PARENTS OF CHILDREN WITH AUTISM:
BLOGS WRITTEN BY INDIVIDUALS WITH AUTISM:
Emma’s Hope Book has compiled a wonderfully comprehensive list of blogs written by individuals with autism, some highly verbal, some moderately verbal, and some completely non-speaking. We can’t recommend enough scrolling through these blogs and getting to know these amazing people through their written words. There is no better insight into what it’s like to be autistic than from those who live it.
We are often hesitant to recommend books because, well, who has that much time? But here are a few that we think are worthwhile and are easy to read at one’s own speed …
The Loud Hands anthology is a collection of essays written by and for individuals with autism. Spanning from the dawn of the Neurodiversity movement to the blog posts of today, Loud Hands catalogues the experiences and ethos of the community and preserves both diverse personal experiences and the community’s foundational documents together side by side.
A favorite review of this fabulous book reads, “Full of practical advice and transcendent ‘Aha!’ moments, The Real Experts o ers young autistic people and their families the kind of wise mentorship from tribal elders that was unavailable in previous generations. It’s a landmark book.” – Steve Silberman, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity.”
According to the book’s contributors, this is “the book that many of us wish our parents would have had access to when we were growing up.” In this first book release from the Autism Women’s Network, the autistic contributors write with honesty and generosity about the emotional needs, sensitivity, and vibrancy of autistic girls.
RESOURCES FOR EDUCATIONAL ADVOCACY:
In 2002, Massachusetts Advocates for Children opened a dedicated autism center, focused on legislative advocacy and family advocacy. MAC provides legal services, advocates for children in need, and community workshops and online resources to empower families.
“FCSN provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. We support and encourage full participation in community life by all people, especially those with disabilities.”
“The mission of The Arc of Massachusetts is to enhance the lives of people with intellectual and developmental disabilities, including autism, and their families. We fulfill this through advocacy for community supports and services that foster social inclusion, self-determination, and equity across all aspects of society.”
Every town in the state of MA is required by law to have an active SEPAC (Special Education Parent Advisory Council) that works in an advisory capacity with the public schools. While some town PACs are more active than others, they can be a great resource for information, community, and advocacy. To find contact info for your town SEPAC, google “[Town] SEPAC.”
“We provide comprehensive, family-centered diagnostic and care services for children with autism spectrum disorder, together with strong family support. Depending on your child’s needs, we can coordinate visits with autism specialists such as developmental behavioral pediatricians, child neurologists, psychologists, psychiatrists, geneticists and gastroenterologists, as well as physical, occupational, and speech and language therapists. If you already have a health care provider you like, we can provide any medical services you need to fill in the gaps.”
“The Lurie Center is an integrated and multidisciplinary clinical, research, training and advocacy program dedicated to treating individuals with autism spectrum disorder and other developmental disorders. Our mission is to treat individuals and support their families across the lifespan.”