A new book builds connections for families navigating autism in McLean County
Bloomington-Normal is a community rich in resources for families navigating autism, but knowing where to find those resources can be daunting.
Jacquie Mace learned that firsthand after her son was diagnosed with autism 20 years ago.
Mace founded Autism McLean in 2002 to help families like hers better navigate an autism diagnosis. This year, Mace partnered with Marty Murphy to consolidate her years of research and experience into a guidebook titled “Autism: Little Book of Resources."
“Anytime that they can get information in a timely manner is going to help them further what they need for their children or young adults," Mace said of families. "This really targets all ages. There’s so many different key transition times in children’s lives that you need that information as you go along."
Because there are many different key transition times in children, Mace designed the guidebook to provide families with support for all ages.
The book offers information on how to access therapists, where to find dentists that work well with children with disabilities, information on funding streams for families, housing information, and more.
It also includes personal testimonies from local families about what navigating autism was like for them.
“I think anybody, whether you’re having a new baby, or you’ve been through a loss, or you’ve gotten a new diagnosis of some kind — you’re looking for somebody you can connect with who understands what you’re going through at the time," Mace said.
"So, at the beginning of the book are a couple of family stories that gives other families that, ‘Oh I’m not alone. Somebody does get it.’ I think that’s really important to anybody in any walk of life,” she explained.
Mace said community support is also important for families dealing with autism. Support from those around them is also critically important for the growth of people with autism.
“Early on, it was very difficult to go into the community with a child who would throw themselves on the floor, who would scream, who lacked communication means at the time. People didn’t understand autism, and so families, including myself, didn’t like to take their children out into the community," Mace said.
A lack of broader understanding about autism spectrum disorders meant parents didn't like taking their into the community.
“So, one of the things that we have really strived to do is build that community connection with getting our children out, getting our adults out, making sure that there’s jobs for them,” Mace said.
Autism spectrum diagnoses have increased drastically in the last 20 years. In 2018, the Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network reported 1 in 44 children had an autism spectrum disorder.
“When we first got a diagnosis for my son in 2000, there were very few actual resources geared towards autism. Now we are a community very rich in resources, and there’s a lot of providers that provide speech therapies and ADA therapies, play therapies, just lots of different things,” Mace said. “That comes from the increase, and it comes from the awareness and it comes from the push from communities and the families to get those resources, to get those needs met for their children.”
Not only can families benefit from accessing the guidebook, but Mace said businesses that have an increased understanding of what autism is can better accommodate people with autism.
Whether it means offering more pictures on a menu in a restaurant for people who cannot communicate or it means having sensory friendly playgrounds, Mace said the autism resource book offers insight on how Bloomington-Normal and beyond can uplift people on the autism spectrum.