Three PhDs Disagree about How to Help My Autistic Son, and What Am I Paying You For, Anyway? -- A Play in Three Acts
The Cast of Characters:
Ph.D. # 1: A Developmental Pediatrician with whom it took twelve months on a waitlist to get an appointment.
Ph.D. # 2: A Behavior Analyst I only see at IEP meetings, who is charged with successfully shepherding my autistic son through public school.
Ph.D. # 3: A Clinical Psychologist at an exclusive practice who will provide an evaluation, test results, a treatment recommendation, and three separate office visits before I learn he will not accept my insurance.
My Autistic Son: Brilliant, charming, beautiful, cooperative, compassionate, and goodness incarnate; the light of my life for almost eight years.
My Autistic Son: Brilliant, charming, beautiful, cooperative, compassionate, and goodness incarnate; the light of my life for almost eight years.
The Mom, the Protector, the Advocate, the Administrative Staff, the Chauffer, the Event Planner, the Nursemaid, the Housecleaner, the Guarantor of Funds: Me.
The Setting:
Philadelphia, Pennsylvania.
The Era: September 2015 – Present.
The Events:
Act I: I Drove to Delaware for This?
Act II: No, I’ve Somehow Completely Missed that He Has Impulse Control Issues, Thank You So Much for Your Valuable Insight.
Act III: Wait, HOW Much Do I Owe You?
Orchestra: The dulcet tones of quarrels with Blue Cross and occasional wails of frustration.
Directed by: The genetic lottery, with help from Nature and Nurture.
With thanks: My son’s sister, the neurotypical representative of the family; my son’s father, my rock and soulmate; our support circle, who never stop celebrating our victories; and that woman in the grocery store who gave me a hug in 2017 as I was chasing my eloping son through the produce section while sobbing.
We hope you enjoy the show!
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Act I: I Drove to Delaware for This?
Scene 1
My two year-old son compulsively spins wooden discs in an array of primary colors upon the table as I try to process the deluge of information being thrown at me.
“So, I think we can officially make a diagnosis of Autism Spectrum Disorder based upon the Vanderbilt STAT screening, which seems to suggest Level Two…”
I nod, because this news is not exactly a surprise. It is essentially what I’ve been expecting to hear since even before his first birthday.
“And given his language delay, and his lack of eye contact, and his history of late milestones…”
My current lack of surprise, however, stands in direct juxtaposition to the omnipresent anxiety I’ve had regarding this child’s development, also since even before his first birthday.
It was this maternal alarm that led us here, to one of the two hospitals in a surprisingly-large search area that officially diagnoses Autism Spectrum Disorder, to the Department of Behavioral Pediatrics at which I fought for an appointment for an entire year while every single member of our support circle informed me I was overreacting.
A mother always knows.
“Hold on one second,” I interrupt, searching for a pen, trying to remember what questions I have to ask, trying to attend to the toddler currently – repeatedly – opening and slamming the door to the storage closet. “My love, please leave the closet alone.”
He does not, so I stand and physically relocate him to the corner of the doctor’s office with all the books and blocks, then return to sit on the couch. I still have not found a pen.
“Sorry,” I apologize, and she continues without missing a beat.
“So, next steps, you’ll want to make an appointment here in six months, and I also think you should get a hearing screening. You’ll want to look into an autism-support classroom or preschool…”
It is 2017, and the Developmental Pediatrician sitting before me seems particularly unphased to be formally dashing my dreams of having a cardiothoracic surgeon in the family.
Of course, I will eventually learn this is not at all the case; I will eventually learn my son is bright and gifted and hardworking; I will eventually learn “autism” doesn’t actually look like anything at all, and it certainly doesn’t prohibit medical school.
“And here’s a list of ABA providers in your county. That’s Applied Behavior Analysis, and it’s controversial in some circles, but he really could use about 30 hours a week…”
After a shockingly short period of time, my son and I are sent on our way, laden down with printouts and brochures and trifolds. We have a directory of support groups; we have a glossary of terms. What we do not have is action items, concrete steps, a cure, a Balm of Gilead. We do not have anything we did not have before this appointment, and we certainly do not have any solutions to get this child to eat, to sleep, to talk, to interact. We still have not found a single way for me to feel like I am helping my son.
“Well, guy,” I sigh, buckling him into the car seat. “Are you ready to go home?”
He smiles at me and holds up his arms, probably a silent request to be released from the harness but maybe the desire for a hug. I hug him anyway and settle myself behind the wheel; I put on a playlist and type my home address into the GPS.
Wilmington to Philadelphia during rush hour is not a kind journey, and I groan as I look at my estimated time of arrival. I allow my brain a few seconds to feel sorry for myself; then I hand my son a bag of Cheerios and set off for home.
Scene II
We cross the Delaware state line. Then we sit in traffic on I-95 for what feels like the remainder of time itself, but is probably only an hour.
And, somewhere around the Philly International Airport, I make a decision. It is a decision to which I have remained ever since, and it is the decision which shapes every facet of my parenting.
I decide I don’t give a f*ck my son is autistic.
Thanks to the whims of Evolutionary Biology, this is my child, and I decide I would not trade him in for a neurotypical model for all the money in the world. I decide he is perfect. And I decide it is on me to let him know, every single day, that I am proud of him; that he is special; that he has a disability called autism which makes life harder for him than for most other kids; that his disability is not his fault; that his disability is totally unfair; that he still has to soldier on anyway; and that things won’t always be this difficult.
I decide nothing has really changed all that much; I decide we will move forward with unconditional compassion and love.
It is the best and most important decision I have ever made.
Scene III
My child and I will make this journey several more times over the next few years.
It will be rough in the beginning. We will not know what to do. We will not yet know any other families with autistic children; we will flounder.
But, eventually, I will start to learn.
I will learn the earlier a child is diagnosed with autism, the sooner they can begin services, and the more effective those services will be. I will learn progress looks like so many more things than I could have ever imagined. I will learn the difference between the things my son can control, and the things he cannot. I will learn to parent in public without giving a f*ck what other people are thinking.
And I will start to get angry.
Because the thing is – even if you are lucky enough to be informed or prescient enough to suspect your child is presenting autism symptoms – no one tells you how to maneuver through the quagmire of diagnosing and treating neurodiversity. No one tells you to seek Early Intervention in your county the very moment you have concerns about your child; no one tells you need a Developmental Pediatrician instead of a General Practitioner or a Child Psychiatrist or a Psychoanalyst or a Reiki Healer. No one tells you, when you are finally on the correct diagnostic path, that the waitlist to even be seen is 12-18 months. And finally, after all that, there isn’t even a consensus as to what to do next.
You’d think, after all, that the diagnosis would be the answer. You’d think it would solve your problems. You’d think it would come with a prescribed treatment, and data markers, and peer reviewed advice all intended to fix your autistic child.
It does not, however. It does not, because there are no best practices with Autism Spectrum Disorder. There is trial, and error, and failure. There is hope, and disappointment, and perseverance. There is only getting to know the world in which your child lives. The diagnosis does not fix a thing.
It is only the beginning.
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Act II: No, I’ve Somehow Completely Missed That My Son Has Impulse Control Issues, Thank You So Much for Your Valuable Insight.
Scene 1
It is 2021, and my son is in kindergarten.
He has come so far. He is so far behind.
Most of his calories still come from Pediasure; he gags if he touches a strange food. We are still working to grasp the concepts of positive reinforcement and operant conditioning. We are still two whole years from perfecting toileting.
For his first five years, my son was preverbal, with no expressive language skills whatsoever. His receptive language was never an issue – this child has always understood exactly what we are trying to say – but he had only two words in his entire lexicon until halfway through his sixth year. Then something astonishing and unfathomable and extraordinary happened, and now he talks. He just…talks. He talks like it’s nothing, like it’s an afterthought, like it is something he has always known.
Scene II
My son is, in fact, a downright chatterbox, and it is for that reason I am on a virtual Zoom call with – to the best of my knowledge – the sole Behavioral Analyst for the entire school district.
The Special Education teacher is here, as well, and the Occupational Therapist. My son’s kindergarten teacher is here, and the school counselor is here, and staring at all these faces on the screen before me, I cannot help but feel like I have been summoned to the Principal’s office to account for some egregious behavior.
“…so, he can be a bit of a disruption. He can be loud, and he has a hard time staying in his seat…,” the kindergarten teacher is informing me, as we discuss my son’s impulsivity.
Let me take a moment to be clear: My son is doing grade-level work. He participates in music class; he writes his name legibly; he is unequivocally rocking arithmetic. My concerns for him are not academic or cognitive, but they are concerns nonetheless, because this is not the first conversation of this sort in which this motley crew of educators and I have all engaged so far this year.
“Yes, we see things like that, too,” I agree. There is not much else to say – the kid is happy, he occasionally gallops around the room with glee, and he likes to break into We Will Rock You by Queen at the drop of a hat, so it’s not like we disagree that he can be a disruption. But we are also ecstatic with how far he’s come and the potential we see growing in him every day. The result is the fine line my husband and I must walk during meetings like these, often masking our delight that he has started randomly hugging classmates, for example, in order to agree that yes, he does need to work on boundaries.
“And he’s been jumping up to turn the lights off and on,” the teacher continues, and I wince. That one actually does sound pretty disruptive.
“Oh, boy,” I manage. “Um…yeah.”
My husband asks another question about impulse control while I attempt to organize my thoughts. The Behavior Analyst proposed this check-in under the premise of discussing my son’s inability to focus, and I am just waiting for someone to suggest stimulants and an ADHD screening.
There is a triangle of comorbidity, you see, when you are dealing with Autism Spectrum Disorder. A diagnosis of ASD often lies right alongside one for Generalized Anxiety Disorder or Attention Deficit Hyperactivity Disorder – the three are a Venn diagram that manifest uniquely in every patient. The problem is that the symptoms of one look like the symptoms of another, or that the symptoms of one mask the symptoms of another, or that the symptoms of one can really be the symptoms of all three, and it is nearly impossible to ascertain which is causing your child to do what and why.
You’d think Western Medicine would have a better method of solving this conundrum by now, but the gold-standard of treatment is – inexplicably – brute force experimentation. Medicine can help, and therapy can help – except when the wrong medicine actually hurts, and the wrong therapy unravels progress that was already made.
I have always assumed my son would need medication at one point or another. No one outsmarts the genetic lottery, after all, and my own mental health is such a mess of missing neurotransmitters and trauma responses that it would shock me if my children fully dodged the bullet of mental illness. But I am also vehemently opposed to hooking my child on pharmaceutical speed at the age of 6, just so he can do better on a spelling test, just so he is less noisy when compared to other children, just so we can subdue everything about him that makes him him.
“So my recommendation is definitely looking into a prescription for ADHD,” the Behavior Analyst announces, while the team of educators surrounding her image in the Zoom window all nod sagely. “You can talk to your Pediatrician, and…”
I tune out the rest of this advice, because there is no bloody way I am getting psychotropic medications for my neurodiverse son from the generic Pediatrician we see for only thirty minutes every twelve months.
“Yes, we certainly will look into it,” I answer, after waiting for her to wrap up the assurance that our primary care practice will know how to move forward. I politely refrain from asking her how many general practitioners she knows who intimately understand comorbid mental health conditions in special-needs children.
My own tumultuous mental health journey has taught me the danger of misdiagnoses and incorrect courses of treatment. As a result, I tend to default to those painstakingly-trained, multi-degreed, overachieving physicians with fancy practices for my family’s mental health needs – just to save us all time, effort, and heartbreak in the long run.
We cannot afford to do this, to be clear.
We also cannot afford not to do this.
“And be sure to keep us posted if he starts anything new medications,” interjects the Special Education teacher, and I nod. I am nothing if not completely on my shit when it comes to helping my son manage his disabilities.
We wrap up the meeting with some pleasantries about the weather and the upcoming spring carnival, then collectively sign off. I heave a sigh of relief as the screen goes black, feeling my shoulders unclench for the first time in forty-five minutes. We love this school district, and the staff is so accommodating to my child, but sometimes I cannot help but feel they are just looking to repair him.
Scene III
“So…now what?” asks my husband. I take a moment to ask myself that question as well.
“I’m not sure,” I admit. “He’s so young for medication.”
“I don’t want to medicate him,” my husband states, and I can see his point.
“But I don’t want to do him a disservice by denying him something that could make his quality of life better,” I answer. “I don’t want to look back in three years and realize we could have been helping him this whole time.”
We go back and forth, and will continue to go back and forth, and will not have stumbled upon the correct answer by the time night falls that evening and we are putting our son to bed.
“Goodnight, guy,” my husband says, and our little boy smiles like a sunbeam.
“I love MOM AND DAD!” he yells back. We tuck him into bed and turn out the light and descend the stairs to resume the debate once more over things that have the potential to make or destroy our child’s entire future.
Somewhat paradoxically, I am grateful for this entire situation, even as our discussion grows increasingly tense and we go to bed without saying goodnight.
I am coming to learn, you see, that being able to attend to your child’s mental health in the United States of America in 2021 requires an enormous amount of (geographic, socioeconomic, ableist, white) privilege. And even though we may not know what to do right now, we are fortunate to even have this problem in the first place – to have so many trusted medical professionals, to have easy access to world-class hospitals, to have the disposable income (however meager it may be) to get our son the help he needs.
So whenever I begin to get overwhelmed by Autism – whenever I feel whispers of panic from deep in my cerebral cortex that I am failing my child, that he is suffering, that I could be doing so much better – I need only to think about the countless individuals on the Autism spectrum who do not share our privilege. Then I buck up, wipe my tears, and keep trudging forward, because let it never be said we are not – even in the face of yet another strained Zoom call with the Behavior Analyst – overwhelmingly lucky.
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Act III: Wait, HOW Much Do I Owe You?
Scene I
I stare in befuddlement at the well-dressed, well-spoken, well-educated man in front of me.
“I don’t think I understand,” I say.
It is 2023, and my son is in first grade.
Last month, my child’s ABA provider conveyed how worried she was about his anxiety.
“He’s having a hard time controlling it,” she imparted delicately, and I immediately started kicking myself for not noticing his newfound struggle, for not paying enough attention to his emotional state, for believing the Behavior Analyst that his attention span was our biggest problem. Then I picked a fight with my husband for absolutely no good reason at all; then I opened Google.
After a drawn-out, exhausting exchange, my husband and I have ultimately sought this second opinion with the well-dressed, well-spoken, well-educated man in front of me because we simply do not yet feel well enough informed to sentence our son to another diagnosis, to a lifetime of medicine, to another facet of neurodiversity. I, personally, am terrified of doing this wrong; I am terrified of choosing the wrong path and finding ourselves right back where we are now, but so many wasted years and tears and dollars later.
Therefore, I have crowd-sourced and researched and background-checked a dizzying array of Child Psychologists. I have left voicemails on top of voicemails. I have been through intake processes and new patient procedures and countless demographic surveys. Finally finding an impressive practitioner who actually agreed to take my insurance, I dragged my son to a faraway suburban office for a medical history, to a different clinic for a slew of tests, and back to the office for the results.
I have painstakingly detailed for the doctor every step of my son’s journey – ASD diagnosis, hours of ABA, years of speech therapy, inattentiveness at school, rumored anxiety – and all of the clinicians who have come before who are responsible for this hodge-podge of opinions and recommendations.
And now, I am standing wide-eyed and slack-jawed as the psychologist explains the outcomes of the Ages and Stages Questionnaire; the IQ test; the evaluation that looked to me like a cross between a Rorschach Test and a game of ambigrams, the purpose of which is surely designed to tell me something significant and the results of which are instead telling me absolutely nothing I do not already know.
“I don’t think I understand,” I have said just a moment ago, so sure was I that this would be the Ph.D. to finally figure it all out, to successfully light the correct way forward, to dispel my fog of confusion and settle the question of how to best help my child once and for all.
“I don’t think your son has ADHD or anxiety at all,” he repeats. “I wouldn’t recommend medicating him.”
Scene II
“What’s your co-pay, dear?” asks the matronly receptionist brusquely.
“Oh, I’m not sure, it’s new insurance,” I answer apologetically. I am still reeling that the doctor completely disagrees with everything we have been hearing up to this point. His recommendation is for “wraparound services,” wherein a therapist would essentially move in with the family to accompany Omri to school, to activities, to meals, play dates, to the bathroom. It sounds even more daunting than getting him to over 30 hours of ABA therapy a week – and that’s plenty daunting.
“What did you pay last time?” she asks with feigned patience.
I shrug.
“I think you’ve been billing me?”
I am clearly not helping, and the volume of her exhale is designed to inform me of that fact even if I am not yet aware of it.
The truth is, I have no bloody idea what my co-pay is because who actually understands private insurance in the United States of America in 2023??? Some of my son’s appointments are free through the county; some of them are free through my insurance. Some of his therapies have a meager co-pay, and others have a heftier one. There are services my insurance refuses to cover, but will let me submit receipts for partial reimbursement, and there are services my insurance ostensibly thinks have no purpose whatsoever, because it won’t touch those with a ten-foot pole.
To be clear, private insurance does do what it has always been designed to do – turn a profit for stakeholders. Structured as a for-profit industry, medical insurance is less concerned with the health of policy-holders and wholly concerned with its own bottom line, and nowhere is that more apparent than when trying to manage a disability or chronic illness.
For those of means, the solution is to opt for the practitioners who are so good and so expensive they do not need to involve themselves with the quagmire of insurance companies; they accept only out-of-pocket pay, because they are talented enough healers to warrant such an outrageous price. For everyone else, the solution is simply to hope the insurance company agrees with your doctor and consents to pay for your treatment; there is literally no other option.
We, by the way, fall into a nebulous space somewhere between, wherein we are not of a socioeconomic status to warrant the best of the best of Western medicine, but where we can pretend we are by sacrificing vacations and restaurants and pedicures and massages and new cars and housekeeping and date nights and whatever other luxuries on which we are currently missing out. There may even be months when the bills are late, but if there is any extravagant expenditure which is justified, it is the best of the best of Western medicine.
It is because I abhor this entire system of managed care that I am not particularly concerned I do not know the answer to the receptionist’s question about a co-pay. I mean, if I owe one, I’m sure you can eventually track me down and let me know; if you send me a bill, I will pay you when I receive it. Either way, everyone gets paid, and the only remaining issue is that I still am no closer to having an answer about the best way to help my autistic son.
“When was your first appointment with us?” the woman sighs, and I dig through my purse to find the calendar app on my phone while my son opens and closes every office door in the vicinity.
“I think it was mid-February,” I guess aloud as I scroll, grateful for the ones and zeroes that allow me to plan an intricate web of appointments and visits each week without forgetting too many of them.
We confirm my son was indeed first seen in mid-February, and then twice more in March.
“Well, you should have had a co-pay each time you came,” the receptionist huffs, and I resist the urge to apologize again. I may not know what the hell is going on in my son’s head, but at least I am not responsible for this office’s Accounts Receivable.
She continues to type with a clatter while my son continues to play with the doors. I can see she is getting annoyed with us both; I can see our remaining tenure here is short-lived. She cannot find the information she needs on the insurance company’s website. Her records system keeps hiccoughing. Finally, we agree she will call me with my account balance, and I escape gratefully into the sunshine with my son in tow.
Scene III
We drive home, blasting Hamilton at my son’s request. I am having big feelings; I am longing for the clarity I was hopeful this appointment would bring. I am so caught up in my thoughts that the peal of my phone interrupting the music takes me by complete surprise. The caller ID is from the office we have just departed, and I hesitate. As often happens after weighty appointments concerning my son’s disabilities, I am emotionally exhausted. My bandwidth for polite social interaction is down to practically nothing. I am not in the mood to deal with mercurial office staff or requests for more demographic details; I am in no hurry to hear how much money I now owe this Ph.D. With hardly a glimmer of guilt, I let the call go to voicemail and continue belting My Shot with Lin-Manuel Miranda and my decidedly-verbal son.
Then, of course, I forget to check my voicemail.
Therefore, it is not until much later that evening that I finally notice the new message indication on my phone and recall the matronly receptionist trying to reach me. Now there is guilt, and I click on the message, mentally adding a return call to the office to tomorrow’s to-do list.
“This is Ms. Smith from Behavioral Interventions, and I just wanted to let you know I finally figured out the issue with your co-pays. It turns out we actually don’t accept your insurance, so we are not able to bill Blue Cross. So for the introductory meeting and the days of testing and today’s appointment, your balance is currently…”
“Oh, f*ck me,” I voice aloud upon hearing the sum. “Are you serious?”
It is rhetorical, and there is no one about to answer it, but that does not lessen the vehemence with which I utter the question.
Ms. Smith goes on to tell me how I can pay by check or credit card over the phone, and I briefly shut my eyes with panic as I think about the state of my bank account after that happens.
“You guys didn’t even tell me anything new!” I protest through the darkness. “I already knew his IQ was normal!”
Ms. Smith ends the call and I collapse dramatically on my son’s bed, feeling utterly defeated. I lay unmoving for an indeterminate amount of time, mind whirling, staring into thin air. I do not come back to reality until my son and my husband enter the room, hunting for a matching pajama top and singing a ditty from school about the months of the year.
“I love you, guy,” I say tiredly from my position of repose.
My child beams at me.
“I love MOM,” he announces in return, and brings me a book about a llama in red pajamas to read before bed.
And as he starts to giggle over this rhyming account of llama drama, I feel my mood begin to lift.
It is physically impossible to be in the presence of my son – who is ubiquitously sunny, who is obedient and charming and kind, who ekes out every ounce of joy a human can possibly experience and who is truly delighted to be alive – and remain in a funk. When I think about where we were last year, where we were four years ago, it is even harder not to feel the defeat ebb away.
I may have no idea what to do next to help my autistic son. I may be on the verge of making the wrong choice. I may be destined to go broke as I continue to figure this all out. But my son is flourishing; not just flourishing for a child on the autism spectrum, but flourishing for a child. And lately – despite my ongoing disorientation from all the attempts to discover our best course forward – that kind of empirical evidence goes an incredibly long way.
It helps me to stop agonizing as I lay in bed in the middle of the night, certain I am doing everything wrong; it helps me to stop being afraid of the future. These days, when I watch my son – when I read his school papers, when I listen to his jokes, when I acquiesce to his pleas for Nutella, when I request he stop pummeling his sister – I am more and more able to relax; I am more and more able to simply witness who it is he is growing up to be.
So maybe I don’t really need another Ph.D. to tell me how to help my autistic son. Maybe we’ve actually been doing it right this entire time. Maybe we’re better at this than we’ve ever noticed before. And maybe – just maybe – the best still is yet to come.
*Curtain*
Shannon Frost Greenstein (She/They) resides near Philadelphia with her family and cats. She is the author of “Through the Lens of Time” (2026), a fiction collection with Thirty West Publishing, and “These Are a Few of My Least Favorite Things” (2022), a book of poetry from Really Serious Lit. Shannon is a former Ph.D. candidate in Continental Philosophy and a multi-time Pushcart Prize nominee. Her passions include Friedrich Nietzsche, anti-racism, ballet, the Seven Summits, the Hamilton Soundtrack, motherhood, and acquiring more cats. Find her at shannonfrostgreenstein.com or on Twitter and Bluesky at @ShannonFrostGre. Insta: @zarathustra_speaks