After today’s doctor’s appointment, and the requisite trip to the donut shop, I am in tears, thinking, “Maybe I shouldn’t even be a mother! This is too hard!” I want to crawl into bed. And today was for a well visit!
Pediatrician appointments destroy me. I don’t sleep the night before, during the appointment I’m sweaty and my heart is pounding. Once we are through, I am wrung out, my eyeballs hurt, I’m full of body pains, and I think I may throw up.
There are no good “autism pediatricians”. There just are not. And I live in a city with highly rated children’s hospitals and the Autism Discovery Institute. But these are specialists with year-long waiting lists. They are not pediatricians.
I have found that the best physician I can hope for is the hands-off pediatrician. Someone who is going to tick the boxes next to the eye and ear exam and administer vaccines. I’m talking about someone who can identify an ear infection and has at least heard of autism. We’ll start the bar there.
Why do I have such little faith in the average pediatrician? After switching through 7 general practitioners in two states, I have not found even one who “gets it”. “Getting it” is huge. It means you have met more than a handful of families impacted by autism (or any disability, really). You have truly listened, heard the struggle, made a connecction, and you will shift your mindset to include we families who do not align with what you learned in medical school.
I will give you flowers and text you on holidays if you would just “get it”. Hell, I’ll give you a big, juicy kiss!
Specialists sort of get it. They can’t empathize, no matter how many children they work with, unless you find the unicorn provider who also has a special needs child. But your garden variety pedi? No. You’re the QUIRKY family with three autistic kids. You’re the sweaty mom who’s hovering, hoping your kid doesn’t kick you or fall off the table.
We have a fantastic developmental pediatrician and even she barely gets it. Maybe because she is a mother to typical kids she is incapable of putting herself in our shoes. The neuropsychiatrist is full of sympathy and is understanding when my 12 year old refuses to speak at his evaluation and glares at the wall for 50 minutes, but now he’s just making educated guesses based on how I complete his essay questionnaire. These are people work exclusively with neuro-diverse families and they still couldn’t possibly get it. So why would I expect that level of recognition from a typical pedi?
The much dreaded appointment begins.
I have filled out every form highlighting my child’s disabilities and used long paragraphs to describe the best way to talk to him child to illicit some compliance. . . and yet, that doctor is still full steam ahead, auto-pilot mode for a neurotypical child, thinking he knows best.
He fires off the questions.
“Does your child get an hour of exercise daily?”
“Are they eating 5 fruits and vegetables each day?”
“Do you limit fatty and sugary foods to one per week?”
“Is there a screen time limited of less than 2 hours each day?”
Dude! Have you never met even one autistic kid before? Have you ever seen the crippled look in the mother’s eyes as you hand down judgment on her best efforts to help her child? We are here in your office which involved no small amount of bribes: full fat desserts and screen time! The patient is holding a tablet and playing Minecraft while you are asking these questions.
Do not shame us.
Because let’s not forget all of the questions that pertained to me and my vaginal or cesarean delivery and what kinds of medication I was taking during gestation.
There must be a root cause assigned in a case of autism. Nature or Nurture. Genetics or neglect. Geriatric pregnancy or lassitude. The mother is somehow to blame.
“Have you tried ABA therapy? “
They have read about this one kind of therapy and push all of us square pegs through that hole.
Doctors, are you listening? Learn about autism. Learn how to support the families. You cannot treat us like every other visit you have this week. Autism impacts the whole family. So the tired woman before you, she needs more support than asking her if she’s heard of the local autism society.
You may know my story. I have 3 extraordinary kids with autism. They are beautiful boys who can sometimes demonstrate lovely manners and make some charming eye contact. But guess what, they are autistic. Mild, severe, social, introverted, sensory processing disorder, ADHD, depression, anxiety — we’re lighting up that spectrum with many different colors and intensities.
Guess who understands autism better than your average pediatrician? Your average autism parent.
Moms and dads, give yourself credit because you’ve reached the end of the internet researching everything about autism. From living with your autistic person or people, you understand what it means to be autistic and you’re helping your child self-identify and advocate. You’re vulnerable and raw from re-doing all of the assessments and forms that each new doctor’s visit requires. You are so hyper focused on this disorder that it has consumed your life. You are an expert.
I have had 2 separate pediatricians tell me, “No, your child is not autistic.”
At that point, I had two sons diagnosed with autism and ADHD so I insisted on a referral for testing. My 2 year-olds pediatrician thought herself very cheeky as she diagnosed him, instead, as “Delightful!”
I really enjoyed my follow-up with her the next year when I shoved the autism diagnosis back in her face. “Delightfully Autistic” in waiting room 5, Dr. E.
Another thing: We’ve ascertained that my child can hear you.
He’s the one sitting on the paper covered table, 2 feet away. In fact, allllllll of the children, autistic or not, hear you talk about bowel habits and bullying at school. But then when you then want a run down of every struggle, every deficiency, and a list of his required and maybe many failed therapies. How is this already insecure neurodiverse child not supposed to develop a complex?
Don’t do that.
Do not shame my child about his disinterest in riding a bike or playing “hoops”. Don’t tell him that he has to get more exercise. This is a kid who can draw the most astonishingly realistic paleoart and has created a bracket for battles between different Godzilla monsters which he has coded into a video platform. He doesn’t need to be on a soccer team! He is a brilliant and sensitive boy and he just told you, in his perfect sardonic tone,
“Jeez, way to make me feel horrible about myself.”
Listen to your patient. See them. Be curious. Be flexible. And educate yourself. Because these children and families deserve better. Especially now when their anxiety and mental health has been tested by Covid. And please come up with something better than palming me off with a recommendation that I check out the Autism Society website. My van is already rocking their window decal and it hasn’t changed the system yet.
CYNTHIA ZORABEDIAN 