Once shrouded in stigma, the autism spectrum has steadily become better understood over the past couple of decades, and with that has come wider acceptance. But for those families dealing with the condition, the struggle is as intensely personal as it’s ever been.
“I think it’s true that the stigma is not what it used to be, but when it’s your kid, stigma or no, I think this is something that’s still hard for some families to accept,” said Dr. Angela Scott, associate professor of pediatrics at UAMS. “You get pregnant, you have this baby, and you can’t help but imagine what kind of person they’re going to be in the future. When the path deviates from what you’d imagined, it can be hard to kind of readjust.”
According to the National Autism Association, the condition now affects one in 44 children with more than half classified as having an intellectual disability or borderline intellectual disability. Diagnoses of autism have grown rapidly in recent years, although many experts suggest awareness and better diagnostic protocols have merely brought to light what was always there, either misdiagnosed or hidden by families entirely.
Whatever the explanation, the surge in numbers has put a strain on diagnostic, educational and therapeutic resources, especially in smaller, predominantly rural states like Arkansas. Scott said that not unlike health care in general, access to services related to autism continues to be a thorny issue for many families.
“There’s a lot of data now about health disparities and diagnosis, and the reality is [that]it’s a relatively privileged set of people who can navigate the path to diagnosis — unfortunately, people who can take the time, who can pester their primary care physicians, drive up to Little Rock and afford to stay in a hotel overnight,” she said.
UAMS has an outreach program that conducts diagnostic assessments on a quarterly basis in rural areas of Arkansas, Scott said. “But there’s still a lot of work that needs to be done.”
Once a diagnosis is made, too, challenges arise, like where to access the kind of specialized educational and therapeutic services needed to help a child reach his or her individual potential.
“I’ve done testing and evaluation and diagnosed autism for well over 20 years now, and I find a big part is not only educating my families on what autism looks like, but also how to serve in the advocacy role for their child,” said Kimberly Newton, a licensed psychological examiner who’s evaluation and resource center director for Access in Little Rock.
“Their child’s disabilities are protected by law, and I encourage them to be aware of that, especially for my families who are coming from a public school setting. Some families need more help to understand they are truly their child’s advocate now.”
As for specialized schools such as Access, the field of therapy for children on the autism spectrum continues to evolve. Access serves clients both through its full-time academy and as supplemental education for kids attending regular school, as well as a bevy of therapies to meet individual needs.
“I think we’re moving towards more of an individual-centered focus, which is not to say that hasn’t always been the case, it just means we’re more open to and mindful of aspects of autism coming from a positive standpoint,” she said.
“Let’s focus on the strengths and not the weaknesses or negatives. We really make a very concerted effort to not talk about what is ‘wrong’ with someone’s child, but their abilities and what they are able to do. I think that shift in presentation and focus helps not just our professionals working with students, it really helps our families so that the diagnosis doesn’t feel as heavy, enabling them to go forward.”
As the mother of a child with autism, Scott knows what families today go through from diagnosis to education to worrying about their child’s ability to function in adulthood. She said the outlook of parents, family members and other people within a child’s support group is the most critical success factor in navigating the challenges of the condition.
“This is your kiddo, and it may not be what you expected but what your kiddo needs right now is for you to get moving, get going with it,” she said. “[Autism] is a way of being in the world; it’s not necessarily viewed as something terribly wrong, it’s just a particular pattern of strengths and weaknesses with some people having more severe trouble and medical problems associated with it.
“Sometimes the pattern of strength is just as remarkable as the pattern of weakness. Yes, your kid may have trouble communicating initially and it may not come naturally to them to understand body language and small talk, but they’re smart in other ways. Where other kids are going to need good teachers to teach them calculus, these kids need good teachers to teach them social skills and communication. Our job as parents is to support these kiddos in the areas where they need help so that they can shine in the areas that they’re really good at.”