We asked SPARK participants to share information about their own or their child’s diagnosis and what types of services and therapies they received. Here we outline the latest information we have collected on the SPARK community and tell some of our participants’ stories.
As of May 2017, over 18,000 people with ASD have enrolled in SPARK — more than 15,000 children and nearly 2,800 adults. Families are heavily involved: More than 6,300 families consisting of two parents and at least one child have enrolled. (Family participation can help scientists interpret genetic discoveries better.) The SPARK community includes over 7,600 unaffected siblings. Roughly 22 percent of the families participating in SPARK have two or more children with autism.
Among children with autism enrolled in SPARK, the average age of diagnosis is 4.2 years old, similar to the nationwide average. A number of parents who responded to our survey described the challenge of getting a diagnosis. Some noticed issues with their child early on, such as lack of eye contact or language delay, especially compared with typically developing siblings. “At 9 months old, I noticed [my son’s] babbling was different than my daughter's was at the same age,” says Kracinda Mead. Mead’s son saw a number of doctors and specialists over the next few years before he was eventually diagnosed with autism. Other families described similar delays.
For children whose symptoms are relatively subtle, obtaining an autism diagnosis can be particularly challenging. A number of parents reported that their children were diagnosed with speech delay or attention deficit hyperactivity disorder (ADHD) before getting an autism diagnosis, sometimes years later. Indeed, research suggests that a diagnosis of ADHD may delay autism diagnosis by three years. (For more information, see this article from the Child Mind Institute.) Barb Matson’s son, for example, was diagnosed with autism at 9 years old, two to three years after being told he had ADHD.
One benefit of an official autism diagnosis is that it can open access to special services, including applied behavior analysis (ABA) therapy, speech therapy and occupational therapy. Once Matson’s son received his autism diagnosis, he “began receiving more appropriate help at school, though that was always a fight to get the services he needed,” she says.
Nearly 88 percent of the children with autism enrolled in SPARK reported receiving services related to their diagnosis, and more than 82 percent had an Individual Educational Plan (IEP), a document outlining individual objectives for children with disabilities. For many in our survey, these services have had a huge impact. “Xavier is now 5 years old and has shown major improvements,” says Mailyn Carignan. “He answers when you call his name and also gives eye contact.”
Others reported a long wait for access to services, often several months, and difficulty finding help for children with milder symptoms. Matson says her son falls into an underserved group within the autism community, “the almost-normal-functioning ASD individual who is trying to learn a career skill but who still need supports,” says Matson.
Autism is an overwhelmingly male condition: The disorder is roughly four times more common in boys, and 80 percent of SPARK’s child participants are male. As such, girls and women can have a particularly difficult time being correctly diagnosed. Scientists and doctors are beginning to realize that girls with autism often have different symptoms. They may have depression and anxiety, as well as eating disorders, and their obsessive interests can fall within the typical range of preteen girls. (For more information on the challenge of recognizing autism in girls and women, check out this article from Spectrum [Spectrum provides comprehensive news and analysis of advances in autism research. Funding for Spectrum comes from the Simons Foundation Autism Research Initiative (SFARI), but the team is editorially independent a publication funded by the Simons Foundation].)
Some research suggests that girls are diagnosed later than boys. In one study of children with mild symptoms, girls were diagnosed two years later than boys. Tracey Siegel’s daughter, for example, was diagnosed with ADHD and anxiety at 5 years old. It wasn’t until age 13 that she was officially diagnosed with autism. “As she has gotten older and social relationships more complex, it is a bit more evident at school,” Siegel says. “A professional diagnosis would have helped me both in the schools and with her father's side of the family in getting her earlier accommodations.”
The process was even more delayed for SPARK participant Erin McKinney, who got her autism diagnosis at age 22. Before that, she had been diagnosed with anxiety and depression. “I always struggled with eye contact, making and keeping friends, understanding social cues and sensory sensitivities, amongst other things,” she says. “I was the smart quiet girl who kept to herself.”
ADULTS WITH AUTISM
Roughly 15 percent of SPARK participants with autism are age 18 or older. Just over 40 percent live independently. Adults with autism who are participating in SPARK tend to have been diagnosed much later than child participants, at around 11 years versus 4 years old for children (interestingly, the average age at diagnosis for dependent adults was 5.3, whereas independent adults were diagnosed much later at 16.8 years). A number of people who responded to our survey were diagnosed in adulthood, which can bring its own challenges. “It's likely been a very difficult journey reaching this point, one filled with confusion, hurt and a pervasive sense of aloneness,” says John Long. “Parents may be gone, for better or worse. Family or friends may have pushed for a diagnosis, or have done their best to prevent it. Even when anticipated, being told you're autistic is a moment of truth unlike few others in life.”
For the most part, people were relieved to have a name for their struggles. “I am thankful that I was diagnosed with autism because it explained so much to me,” McKinney says. “I have found a small group of people who love and accept me for who I am and are helping me to learn to accept myself.”
For Tonya Price (pictured above), “learning about ASD and practicing coping strategies has helped me immensely in dealing with ASD as an adult,” she says. “I wish that my family, schools and health care professionals would have been able to recognize that I am autistic early on, as it would have saved me a great deal of anxiety and stress.”
In our survey, adults with autism reported a lack of available services. “While there is great awareness and many resources available for parents of autistic children, there are few to no resources available for adult autistics,” Price says. “We do grow up. We do participate in the greater world — we get educated, we engage in the workforce, we fall in love, we have children and do most if not all of the things that neurotypical people do. But we have unique challenges in doing so, and any help along the way would be greatly appreciated.”
Long echoes that sentiment. “There are no adult support groups where I live, no sympathetic friends or 100-day plans for the newly diagnosed who isn't a child,” he says. But he found help through online support groups. “I found my way to online blogs and websites by and about adults, to organizations advocating the right to be heard and supported when needed,” Long says. “I connected with people like me. It was the road back.”