Supporting a child with autism
April is Autism Awareness Month, an ideal time to learn about Autism and to be a proactive part of the community that supports children with Autism.
If you are reading this, you may have a child with an Autism Spectrum Disorder (ASD) or you know a child who has an ASD. The National Health Interview Survey (NHIS) estimates from 2016 indicated that approximately 1 in 40 children have an ASD, with Autism being much more common in boys. The increased occurrence of Autism since the 1990s has understandably raised concern. For example, could exposure to some unknown toxin cause Autism? There continues to be much effort directed toward understanding why more children are being diagnosed with Autism. While we know that vaccines do not cause Autism, part of the increased frequency is not well understood. At this point, it appears that changes in how Autism is defined, greater awareness and improved diagnostic testing explains much of the increase. Let’s celebrate Autism Awareness Month by reflecting on what we know and also consider how we keep momentum to support children with Autism moving forward.
Evaluating children for Autism for more than 20 years, I have been impressed with the increasing number of families who possess a basic understanding that Autism is a neurodevelopmental disorder involving deficits in social interaction and social communication together with restricted and repetitive patterns of thinking and behavior. We also now understand that people with Autism fall on a spectrum (or a continuum), which means that all people with Autism possess the core diagnostic symptoms, but that the severity (or expression) of these symptoms varies. Two children with Autism can appear to be very different in both their strengths and the challenges they experience.
Improved Autism awareness
Improved Autism awareness has occurred on many levels, among doctors, teachers, coaches and all those who are a part of children’s lives, and this increases the likelihood that children will be identified earlier so that they may receive necessary intervention and support. I have seen this greater awareness play-out in my referrals. Fifteen years ago children coming for an Autism evaluation were more often at least 5 years old with severe challenges; the referral precipitated by a worried parent whose child did not “outgrow” their failure to talk or engage others as they had been assured would occur. Now, referrals for evaluation are more often closer to 3 years old following informed observations from caregivers, including teachers, pediatricians and parents, regarding a child failing to meet important developmental milestones. This is so important because we have learned that early identified children provided with intensive Autism-specific services have the best outcomes. In other words, they show the greatest gains in development.
We should also celebrate the evolving quality and diversity of services designed for children with Autism. It was not too long ago that schools struggled to address the needs of children with Autism and that school-based intervention often involved segregating them from their peers. Too few community providers with necessary expertise were available. Now, quality systems of support are being widely utilized to support children with Autism. These systems may vary in some ways, which is good when appreciating that children with Autism are a diverse group, but they share some common features. These include a high staff to child ratio offering structured, flexible and intensive (at least 25 hours per week) programming that addresses core challenges impacting children with Autism. I have also been impressed with the emergence of innovative community programs. For example, in Denver, where I live, a community program that focuses on teaching trade skills to youth with ASD is available.
Beware of fake cures
Continued progress to effectively meet the needs of children with Autism requires that everyone who is part of a child’s life participate. However, the ultimate responsibility for managing the process of identification and then developing and maintaining a system of care falls largely on parents, which can be overwhelming. Unfortunately, the genuine progress in meeting the needs of children who have Autism has been accompanied by a tremendous increase in those offering fraudulent interventions and “cures” that do not help and can be harmful. While some retailers have recently banned scam artists peddling fake and potentially dangerous interventions, parents need to be critical thinkers in order to best advocate for their child. A small percentage of children diagnosed with Autism when young will no longer qualify for an Autism diagnosis when they are older, but the reasons why this occurs are unknown. Unfortunately, there is yet no cure for Autism. If a purported treatment sounds too good to be true, it is!
Advocating for a child with Autism
The best way to advocate for a child with Autism and make informed decisions is to be well informed. Noted by Thomas Jefferson more than 200 years ago, “Knowledge is power, knowledge is safety, knowledge is happiness.” An Autism diagnosis based on a questionnaire, a single test or “clinical expertise” will be of minimal help in developing an effective system of care. Strong evaluations ideally involve multiple professionals, and may include physicians, psychologists, social workers, speech/language pathologists, occupational therapists or physical therapists. They provide a baseline to understand where a child falls on the Autism spectrum that can support informed decisions around the type and degree of services needed to effectively support a child.
While much work remains, our understanding of Autism and our ability to support children with Autism continues to improve. Celebrate Autism Awareness month and support children with Autism by being knowledgeable and using that knowledge wisely.
See more from The Tot on Autism: