The Autism Project Celebrates 25 Years of Impact
By: Ariana DeAngelis, M. Ed.When The Autism Project (TAP) was founded in 1997, the Centers for Disease Control and Prevention (CDC) were not yet collecting data on autism in children. In 2000, when the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network began calculating the prevalence of autism, it stated that one in 150 children carried an autism diagnosis. Today, 25 years later, roughly one in 44 children has been diagnosed with autism spectrum disorder. As TAP marks its 25th year, we reflect on the changes that have transpired in the autism community and look toward the horizon as we plan our future impact.
The Autism Project was founded by a group of educators who recognized a gap in information and resources specific to educating people with autism. The professionals had little to no training and few resources to support an autistic student or to advise their parents. “The founding mothers of TAP were committed to the idea that parents deserved the same training as the teachers, because we were the ones supporting our kids 24/7 at home,” said Joanne Quinn, executive director of TAP and parent to a young man with autism. “Following a diagnosis, families were often told that the school would take care of our kids,” she continued. “TAP was founded to address this lack of training and information, and to bring evidence-based strategies and interventions and resources to Rhode Island for both parents and professionals.”
Today, TAP offers a variety of services for New England families, self-advocates, and professionals. The Family Support Services (FSS) team is entirely comprised of parents of adult autistic children with extensive training in autism and the best ways to engage and support an autistic individual. When a parent of a newly diagnosed child connects with an FSS team member, that family support specialist can empathize, relate, and share their own experiences. “Our Family Support team is really unique because each person in FSS has walked this road and can help families to navigate the unique journey of having a child with autism. As we say, we get it because we’ve been through it,” noted Quinn
The FSS team curated, over 15 years, a series of workshops called “Parent-to-Parent.” As parents of autistic children, the FSS team teaches other family members and caregivers about various subjects related to autism. “[These workshops have] taught me more to apply with my son and taught me better ways to approach, ask, or interact with him. Continue in your awesomeness and teaching. It is a blessing,” said a father. Families from across the US have reached out to the FSS team for information and guidance. Most recently, “Parent-to-Parent” was hosted virtually by a community on the Navajo Nation in Arizona.
The professional training team at The Autism Project provides an array of workshops, series, and professional development days for teachers, employers, community workers, and medical professionals. Covering topics from “Autism Thinking: Understanding the Core Challenges of ASD” to “Supporting Self-Regulation,” the training team arms professionals with the information and skills necessary to support the autistic population they serve. Said one recent participant, “I would suggest that [everyone] watch this [training], so that they have a better understanding of what our students with ASD experience. It was literally breathtaking and provided me with such a better understanding so that I can help our students be more comfortable and understood.”
The professional training team has also moved to bring TAP training to organizations across the US and internationally. The Autism Project trained in British Columbia, Ontario, Belarus, South Korea, South Africa, Dominican Republic, Chile, and Eswatini. As part of the “25 Hours for 25 years” initiative, TAP is working to donate 25 hours of training to honor TAP’s 25th anniversary. So far, TAP has donated trainings to Eswatini, Dominican Republic, Chile, and Crossroads Rhode Island. We are truly grateful to pass on the knowledge we have acquired over the last 25 years.
Direct work with the autistic population takes place through TAP’s social skills groups and summer camp. Social groups for children, five-years-old and over, and young adults with autism, are designed to strengthen their social interaction and communication skills. These social groups offer the opportunity to foster positive peer relationships, engage in shared experiences, work on life-skills, social judgment, and build self-esteem. Our social skills staff transitions to summer camp, Camp WANNAGOAGAIN!, during two weeks in the summer. The purpose of camp is to provide a safe, supported, and fun camp experience for children, young adults, and teens with ASD.
As The Autism Project moves through its 25th year, we do so with immeasurable gratitude to our greatest teachers: the autistic community. The children and adults who we have worked with and learned from over these last 25 years have provided invaluable information and insights. We thank you for your wisdom and patience and look forward to the next 25 years of collaboration.
Note: This article uses both “person-first” and “diagnosis-first” language, as we have been asked by members of our community to use both types of language when referencing those on the spectrum.
Data and Statistics on Autism Spectrum Disorder, CDC, (2022). Retrieved 7 March 2022, from https://www.cdc.gov/ncbddd/autism/data.html.
Article written by Ariana DeAngelis, manager of adult training, The Autism Project, an affiliate of Gateway Healthcare, a Lifespan partner.