4/12/2022
Amanda Weaver, Product Marketing Manager, Healthwise Marketing and Communications
My 18-year-old son, Logan, is a person with autism. Logan was born prematurely, but when he was a baby, I sensed there was something going on beyond his premature birth. For example, as an infant he didn't want to be held, even during feedings, and he had oral aversions toward metal utensils and certain textures. I’m fortunate that I come from family of healthcare workers—we recognized that Logan was different, which allowed us to access intervention services when Logan was around 18 months.
Logan is not alone. The CDC estimates about 1 in 44 children have autism spectrum disorder (ASD), with 1 in 27 boys being identified and 1 in 116 girls being identified. While autism can impact anyone, minority groups tend to be diagnosed later and less often. Early diagnosis and early intervention services like ABA (applied behavioral analysis) and occupational, speech, and physical therapy provide the best opportunity for the development and long-term success of children with autism. But autism can be hard to detect. It’s not as consistent as diagnoses like schizophrenia or Alzheimer’s. Autism is unique to each child and family, so it’s hard for parents to know the signs, where to begin, and where to turn. That’s why I’m an autism advocate: because it’s so important for people to understand and be educated about autism.
Finding a Doctor Who Has The Right Experience Despite years of research and the ability to accurately diagnose as early as age 2, most children are not diagnosed until after age 4. As a parent, you know your child best. If you notice something, speak up and ask for an evaluation referral.
It’s challenging to find a primary care physician who has the experience and patience to adapt care to special-needs children. Logan is mentally a toddler, but physically he’s now an 18-year-old young man. His aversion to blood draws and dental care means he must be put under general anesthesia to receive these services, and our doctor knows it’s important to coordinate his care plans to minimize the risk to Logan. That type of care coordination can be difficult for parents and caregivers, so kids with autism often go years without preventive care assessments.
A physician who's experienced with the autistic population also knows what resources are available. For example, almost half of those with autism wander or bolt, putting their safety at risk. This behavior qualifies them for a handicap placard, making public outings less stressful and safer for the autistic person as well as the caregiver. I wouldn’t have known we could get a handicap placard if our doctor hadn’t asked the right questions and suggested it without an air of shame or embarrassment.
Autism and the Public School System It’s key to understand what services are available to people with autism. Under the Individuals With Disabilities Education Act (IDEA), public school systems are federally obligated to provide children with disabilities an education equal to that of a child without disabilities. Part B specifically allocates funds for the school system to provide early-intervention services free of charge beginning at age 3 and allow a disabled child to remain in the public school system to receive services through the age of 22 when deemed necessary.
With Logan, that’s where I’ve had to advocate the most. Once he entered the public school system, advocacy rested solely on me. Schools are legally obligated to make accommodations, but as a parent l have to advocate for what accommodations are needed. Some states even offer out-of-district placement if a school can’t meet a child’s needs. Typically, parents and caregivers work with their doctor to determine what interventions are needed. Then parents work with the school to create an Individual Education Plan (IEP) that’s reviewed every year. If the plan changes, the school is required to get parent approval.
During the COVID-19 pandemic, advocacy for children with autism became even more challenging. When schools switched to virtual learning, children with special needs were at high risk of falling behind. Children with autism thrive on structure, and when you pull them out of that structure, it throws them into a spiral. Trying to do Zoom is rarely successful, because that type of interaction and learning just doesn’t work for them. At the beginning of the pandemic, in the morning Logan would sit in the car with his backpack, waiting to go to school because that was part of his routine. So many parents thought, “We’re on our own, we’ll figure it out,” and didn’t realize they needed to meet with the school to discuss their child’s needs. For every hour Logan didn’t get special therapies that were part of his IEP during COVID closures and changes, the school is now obligated to offer compensatory or makeup services. Unfortunately, many parents and caregivers were unaware of this, and the schools remained silent on the topic.
Any disruption to an autistic person’s schedule can set progress back significantly. This includes summer break. Every spring, your IEP coordinator should begin discussing ESY (extended school year) as an option for your child. ESY allows them to keep their routine during the summer break and continue receiving critical therapies. Consider how your child adapts during winter break: Do they struggle to get back in the swing of their school day? Do adverse behaviors surface when returning from breaks? If yes, then your child will likely benefit from ESY.
Caring for the Caregiver One way to learn more about autism and get resources is through national and local organizations. For parents and caregivers, finding resources can be a challenge, and these organizations can help:
Caring for a special-needs child requires early planning and consideration that's more complex than most people realize. As a parent of an autistic child, I have to think about what happens to Logan if something happens to me. When planning for the future, there are a few things to consider:
When it comes to autism, education and knowledge are so important. If more people understand autism and what resources are available, then children with autism are more likely to get the help they need and be more successful in society.