Living in a rural area has made getting the right diagnosis and proper treatment for my son with autism a problem I didn’t anticipate. Like many children with autism, he requires many hours of a variety of therapies to thrive. But what happens when my son can’t receive the treatment he needs?
In rural areas and small towns like mine, emergency services, therapies, and diagnostic resources can be hard to come by. Clinics and therapy offices are spaced great distances apart, which makes it infeasible for my family to find the time to travel to appointments. For example, my son’s autism pediatrician is a forty-five-minute drive in each direction for an hour appointment. Although my family makes the trip, a doctor’s appointment for him becomes a full-day excursion instead of an hour or two out of our day. Travel time to and from appointments is a major problem and inconvenience that we face.
Because of the lack of nearby resources, I have to depend on my local school district for referrals, autism services, and support, an issue that many rural families deal with. After a couple of weeks of my son going to preschool, his teacher pulled me aside to talk with me about getting my son screened for autism. But because we live in a rural area, we were referred to the nearby school district for an autism screening instead of to a doctor.
Once we went to the school district for an autism screening, we were met with personnel that included a school psychologist, speech therapist, and occupational therapist. But due to the limited budget and small student population, all three professionals travel between multiple school districts in the area, which cuts down the amount of time they can spend at any one school.
After my son’s autism screening, they developed an individualized education program (IEP). Although an IEP will help my son while he attends preschool through the school district, it is not a replacement for the speech and occupational therapy he needs.
Because there are few available qualified specialists and doctors in rural areas, families like mine often have less confidence in their child’s doctor’s abilities to recognize and diagnose children on the autism spectrum. Before my son turned one, his pediatrician talked to me about watching for early signs of autism, like lack of eye contact or responding to loud noises. But after he turned one, I never had another discussion about signs of autism to watch out for. Most children are diagnosed after the age of two because that’s when autism symptoms typically present themselves. I wish my son’s pediatrician had discussed autism signs after one year with me. This situation makes me feel like there is a lack of autism awareness in my area from both school personnel and doctors.
If local school personnel and doctors lack autism awareness, children with autism are often not identified or are misdiagnosed, which may further delay their development and the intervention and treatment services they receive. This delay can also lead families to distrust or lack confidence in health care clinics, services, and doctors. Traveling great distances for my son’s autism appointments is an inconvenience, but my family’s most immediate concern is lack of reliance on doctors because we have come to distrust and question their competence.
Over the years, I’ve had multiple instances that have made me lose confidence in the doctors in my rural area. Now that my son has been diagnosed with autism, that concern has only grown because of the lack of specialists in my area. Right now, we’re faced with a long waiting list for my son to receive speech therapy. There are only two speech therapists within a 50-mile radius and a high volume of children with autism needing speech therapy. It may be a long time before my son receives that treatment.
Living in a rural area poses an extra challenge for autism families like mine. Due to long waiting lists and lack of resources for autism, I find myself becoming my son’s sole speech, physical, and occupational therapist. While he has made massive improvements in his speech development, I can’t help but wonder if proper treatment from a professional will accelerate his development further. Now, it is simply a waiting game to receive adequate therapy and care.