SPARK Community Update: Diagnosis Stories
Updated: February 4, 2020
We asked SPARK participants to share information about their own or their child’s diagnosis and the types of services and therapies that they received.
As of December 2019, more than 84,000 people who have autism have enrolled in SPARK, including more than 70,000 children and over 12,000 adults. Other family members are represented as well. The SPARK community includes over 24,000 unaffected siblings. About 18 percent of the families that are participating in SPARK have two or more children who have autism.
Among children who have autism that are enrolled in SPARK, the average age of diagnosis is about 4 years old, which is similar to the nationwide average. Several parents that 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 neurotypical 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 many doctors and specialists over several years before he was eventually diagnosed with autism. Other families described similar experiences.
For children whose symptoms are subtle, obtaining an autism diagnosis can be particularly challenging. Several parents reported that their children were diagnosed with speech delay or attention deficit hyperactivity disorder, also called ADHD, before getting an autism diagnosis, sometimes years later. Indeed, research suggests that a diagnosis of ADHD may delay autism diagnosis by three years. Barb Matson’s son, for example, was diagnosed with autism at 9 years old, two to three years after being told that he had ADHD. For more information, see this article from the Child Mind Institute.
One benefit of an official autism diagnosis is that it can open access to special services, including applied behavior analysis, also called 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.
More than 80 percent of the children who have autism that are enrolled in SPARK reported receiving services related to their diagnosis. For many in our survey, these services have had a huge effect. “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 who have milder symptoms. Matson says that 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 about four times more common in boys, and 80 percent of SPARK’s child participants are male. In fact, it can be difficult for girls and women to receive a correct diagnosis. Scientists and doctors are beginning to realize that girls who have 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, an independent publication funded by the Simons Foundation that provides comprehensive news and analysis of advances in autism research.
Some research suggests that girls are diagnosed later than boys. In one study of children who have 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.”
Within the SPARK sample, 55 percent of adult women were diagnosed after the age of 18, compared with 40 percent of adult men. The average age of adult women to receive a diagnosis was 21, compared with age 8 for men.
Adults Who Have Autism
About 15 percent of SPARK participants who have autism are age 18 or older. Just over 40 percent of these participants live independently. Adults who have autism that are participating in SPARK tend to have been diagnosed much later than child participants, around age 12 for adults compared with age 4 for children. Not surprisingly, the average age at diagnosis for dependent adults was about 6 years old, whereas independent adults were diagnosed much later at age 20.
Several 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.”
Isaac Law, who is pictured above, is glad to participate in SPARK. Law says, “I want scientists to figure out why I’m creative and imaginative. What is going on in my brain that makes me so unique?”
In our survey, adults who have 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.”
Seventy three percent of the SPARK adult sample have attended college, with 23 percent earning a bachelor’s degree and 15 percent earning a graduate degree. Forty six percent of who have autism that are in SPARK are working at least part time.
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.”
Photo provided by Isaac Law