I recall my husband saying, “I think he may be autistic.” It was something that had entered my mind, but it was not until I heard it out loud that I knew it was time to address our mutual concerns. Our 18-month-old son was not pointing, looking us in the eye or even responding to his name. After scheduling an appointment with our pediatrician and talking with her about our concerns, she recommended we have our first-born child screened by Infant and Toddlers, an early intervention program. It would be another 10 months before his speech therapist called to let me know that we should have Louis screened for Autism since he had not gained any more verbal skills.
When we received the results of the screening, we were both shocked and relieved. We now knew what it was and now we had to address it.
For parents who have a child with autism, they know this is just the beginning of the struggles and anxieties we have as we advocate for our kids.
When we lived in Maryland, Louis participated in early intervention programs provided by Baltimore City Public Schools and eventually Montgomery County Public Schools when we moved. I remember spending hours going to sensory integration classes and speech therapy. When it was time to move him to the next class up, our child care provider did not want to move our then 2-year-old son until he was potty trained. At the time, he could not verbalize more than five words and we started to see him regress. Fortunately, we were able to pay for an advocate and round up a public school official to meet with the director and teacher of the intervention program. As a result, our son, who was visually gifted, moved onto the next class and was potty trained within a few months after aligning all of his caretakers and our home plan.
That transition was a pinnacle moment for his development. Within two months, I noticed that Louis could spell words and his verbal skills, although limited, were slowly picking up. One day, I heard him spell the name of his best friend, Garrett, an already difficult name to spell. I wondered how many other names from his class he could spell and asked the teacher the next day. I remember the look on her face and tone of her voice like it was yesterday, “He can spell all 17 students’ names,” she said – like it was no big deal.
Even though he was making progress, we knew more could be done. As part of the intervention program at the preschool – we paid for his teacher to attend a “what is autism” workshop hosted by the Baltimore City Childcare Consortium. It was a great opportunity for her to learn and understand the signs to take back to the rest of the team. After the workshop, I remember her telling me that she thought there may be more children based on the information she learned.
I consider myself lucky that at the time of this life-changing event for our family I worked in education for one of the largest private philanthropic contributors to public education and was able to provide these resources to my son. Unfortunately, there are many families who do not have the resources and network of people to navigate the complexity of services and treatments – or even worse, there are millions of children who will not be diagnosed until they are much older, making it more difficult to prepare for a productive life.
In 2004, the year my son was born, 1 in 125 children were on the autism spectrum. In 2012, 1 in 68 children are in the autism spectrum and today we expect 1 in 45 children in the United States are diagnosed with autism. While there are debates and conflicting facts about the cause of autism, one thing is clear, there is a lot that you can do to improve outcomes for children with early intervention. As school districts work with community members and programs to make sure every child is prepared for a productive life, coordinating services for early intervention is critical. From the pediatricians who are trained in understanding developmental delays and make referrals for services, to the speech therapists, to the child care providers and schools – the partnership between all of these entities is key to helping our students with autism. As Elaine Hall, founder of “The Miracle Project” said, “It takes a village to raise a child. It takes a child with autism to raise the consciousness of the village.”
Andrea Foggy-Paxton is the managing director of The Broad Center’s Partner Strategy team.