Parents and caregivers of children with autism often describe those first moments following the diagnosis in a similar fashion. The complex layers of emotion they feel run the gamut - from mourning the loss of certain dreams and expectations they had for their kids to finally feeling empowered with the knowledge they’ll need to best care for their children.
In the days and months that follow the day of diagnosis, these same parents and caregivers - still processing a life-changing piece of information - typically begin a comprehensive self-guided study of autism. They delve into research at a level that might match the intensity one would need to craft a dissertation, looking for every piece of information that will help them unlock the incredible potential of their kids. And they conduct this research with unfailing perseverance, all while making the countless phone calls required to get services underway, which include exchanges with occupational, speech, and physical therapists, school district social workers, and admissions representatives at special needs schools, all of whom might at first be strangers but will play some of the most important roles in the lives of their children.
What’s more is that their intensive studies on all things autism, and their quest to assemble the right team for their kids, is all happening as they navigate the challenges of raising a child who can present with a wide range of communication and sensory processing difficulties. These parents bring unwavering dedication to this 24/7 effort, no matter what. They do it while they’re sleep-deprived. They do it while trying to maintain their own careers or while juggling the needs of other children.
And, for so many, they tend to do all of it alone. They may choose to internalize everything, feeling that nobody can fully understand what they are going through. Or they simply don’t have the bandwidth - or time - to explain.
But for many, simply tapping into a circle of support that includes families like theirs can be a transformative experience.
And I believe it’s time that our society does more to ensure that these folks no longer feel they have to “go it alone.”
Agencies and communities who don’t have something in place should consider formalizing plans to develop programs specifically for family members and caregivers of people with autism and other special needs. At Anderson Center for Autism, we have a group called Anderson Family Partners that has made all the difference for members. It is a safe space in which families can open talk with one another, explore new industry-related information, gain an understanding of best educational and therapeutic practices, collectively advocate for public support, share strategies, work together to build a broader societal culture of acceptance, and raise funds for programs that directly enrich the lives of their beloved children.
Regardless of socioeconomic, religious, or cultural backgrounds, and regardless of what state or town or city they call home, these families report feeling an immediate kinship with fellow participants upon their introduction to Anderson Family Partners (AFP). They’ve shared anecdotes with me over the years about how lonely they felt before finding this community, and how being involved has helped promote a greater sense of belonging, purpose, and overall well-being. Some have turned their own adversity into their “life’s work,” making AFP the primary benefactor of their expertise, talent, and time.
With 1 in 54 now diagnosed with autism, we must find ways to create communities like AFP for families all over the world. Every person who is on the journey of caring for someone with autism shares a unique set of experiences that bond them to one another. When we give them the opportunity to join an extended family, we provide them with the nourishment needed to achieve the best outcomes for their wonderful children. We also provide them with the collective voice and energy needed to build a more inclusive society.
And that’s a win for everyone in our broader human family.
Learn more about Anderson Family Partners by visiting this link.
Patrick Paul is the CEO/Executive Director of Anderson Center for Autism, located in Staatsburg, whose organizational mission is to "optimize the quality of life for people with autism."
Visit andersoncenterforautism.org to learn more.