Autistic healthcare needs are largely ignored by the healthcare system.  Below is one mother’s account of her experiences.

Just getting blood-drawn makes your blood boil

Our Autistic child needs blood drawn, but they won’t sit still for it. Maybe they are scared, extremely sensitive to pain, do not understand why this needs to happen or have any other reasons. The phlebotomist tries but tells you they won’t be able to do the blood draw today because your child has become too uncooperative. You leave without getting the blood work that your doctor needs. You try to take your child the next day, but you never even enter the building because your child has a full-blown meltdown in the parking lot.

Sensory overload from sensors

Somewhere else in your city, an Autistic child needs an EEG to see if they are having seizures. A mother struggles desperately with her child to try and keep him still so that the sensors and wires can be attached with a strong-smelling glue to her child’s head. The child screams, cries, and continually pulls the wires off his head despite his mom’s best efforts to soothe him and keep him still. The technician gives the mother two choices: A) They can bring in a “papoose” restraint that will hopefully keep the child still and try to do the test, or B) They can stop, but the mom will have to reschedule the EEG for a later date and hope that things will work out better.

A well visit that does not go very well

The next town over, a mom takes her Autistic child for a well-check with the pediatrician. The office is big and busy. They are checked in and wait in the waiting room for 20 minutes. The mother can see her child exhibiting signs of stress and tries to de-escalate her child. They are finally called back to a room, only to wait another 30 minutes to see the doctor. Despite the mom’s best efforts, her child is getting extremely agitated. The doctor finally comes in and attempts to examine the child, but the child is not having it. The mother leaves the office with her child in meltdown-mode without answering her questions because the child could not comply with the doctor for the exam.

Do any of these sound familiar to you?

Let me tell you, you are not alone. Many studies have been done showing that Autistic children get inadequate healthcare and have great difficulty accessing needed medical services. While there are many reasons for this, there are precious few resources to help fix this problem. Here are two research articles that take a look at care for Autistic children and compare it to care for children with other disabilities.

There is a lot to unpack in these studies.  Some of the problems they uncovered included: children with ASD may have more trouble finding a primary care doctor.  They also have trouble being able to afford healthcare and have to wait too long to receive needed care.  They have higher levels of dissatisfaction with the quality of care received.  Finally, they also have a higher incidence of unmet healthcare needs.

More healthcare needs but less healthcare

This is despite the fact that Autistic children are more likely to have co-occurring health conditions in conjunction with their Autism. These disorders include epilepsy, Fragile X and other genetic syndromes, sensory processing disorders, and depression. You might think that more healthcare needs would equal greater use of the healthcare system.  However, this is not the case for Autistic children. That pattern tends to continue into adulthood.

Telehealth is a silver lining

How do we fix this problem? There are no easy answers. One of the silver linings of the pandemic was the greater use of telehealth visits and being able to virtually check in for an appointment, only coming into the office once the doctor was ready to see the patient. These things would certainly help many families, but there is concern that these things will disappear once the pandemic is officially over.

Healthcare providers need awareness and training

It would also help if medical staff could see on a chart that a patient has Autism.  They can carefully go over all information relating to what can or cannot be done prior to a procedure to make it as comfortable as possible for the Autistic patient. Use child-life specialists immediately instead of waiting until a child is already distressed while waiting for a procedure. And don’t stop with childhood – continue using that kind of comfort specialist even in adult hospitals and procedure centers.

Autistic people deserve proper healthcare just as much as anyone else. This is not an “unfixable” situation. However, it will require changing how healthcare services are delivered to make this happen.