Who Gets Left Behind When We Practice “Evidence-Based” Mental Health Care?

An abstract pattern in hues of green with a silhouette of a person resting their hand pensively on their chin.

As a counselor just beginning my career, I remember entering the session on evidence-based care for school-age students with an open mind. Of course, I wanted every intervention I used in my counseling office to be based on evidence – that seemed obvious to me. I assumed that if I only used evidence-based interventions, that meant I wasn’t allowing my bias or my personal values to influence the therapeutic relationship. I would treat students of all genders, races, and backgrounds equally. But the list of evidence-based interventions was alarmingly short, and most involved manualized treatments that had to be followed page-by-page, with scripts to be read aloud, with worksheets to be completed in a specific order. I ended up leaving the session with more questions than answers about what equitable and evidence-based mental health care looked like.

Equal access to evidence-based mental health treatment sounds on the surface like a great public policy goal. Researchers and practitioners alike love the phrase “evidence-based,” and it’s used in multiple contexts to mean the highest standard of care. If healthcare providers are providing “evidence-based” care, it makes us feel that they are treating every patient equitably – regardless of race, gender, sexual orientation, native language, immigration status, or disability status. Evidence-based has somehow started to mean “without bias.” This begins to fall apart, however, when we examine what “evidence” these practices are based on.

What our society values as evidence is rooted in white, westernized, patriarchal values of science, as opposed to valuing evidence based in personal experience, relationships, intuition, and culture. This definition of evidence means that we can only study what we can quantify, track, and standardize. Additionally, most psychological research is done on undergraduate college students, which means the research base is overwhelmingly white and middle class. We then take these studies of limited populations with limited perspectives on what “evidence” means and say, “Yes, this method is evidence-based,” and it becomes the standard of care providers are held to by insurance panels, public clinics, and hospitals where grants are only given to “evidence-based” treatments.

So, what does this mean? If you are white and financially-resourced enough to afford private out-of-pocket care, you will most likely find a therapist who is going to see you as a whole person, try multiple avenues of intervention to see what feels best to you, and give you more time to grow and learn. But if you have to use insurance, particularly government insurance, plus you have the extra need to find a therapist who is affirming of your multiple identities, you are more likely to be given six weeks of standardized “treatment” in the form of psychoeducation about coping skills, worksheets, and thought exercises.

From my personal experiences with therapy, I know firsthand how difficult it was to find a therapist that valued and affirmed my identities. Finding a therapist who was actually LGBTQ+ affirming always felt like a crapshoot. One therapist who my wife and I went to when first talking about having children questioned whether raising a child as gender non-binary parents was the “right” thing to do, and told us we needed to be prepared for people to ask “who is the father?” But the therapist I loved the most, who had helped me through the death of my mother, didn’t use any of the “evidence-based” treatments I had learned about. She asked my pronouns and used them without hesitation. She helped me explore the complexities of having a mother-daughter bond broken even as I was questioning the gendered language of “daughter.” I talked, she listened and affirmed, we made art, she asked questions, and she held space for my emotions. None of that was quantifiable on a worksheet or read from a script.

Recently, I compared notes with a few other colleagues. None of the therapists we have personally seen have used any of the “evidence-based” methods we spent so much time learning about in graduate school and post-graduate training – but we all agreed that the relationships we had formed with our therapist, the time they took to thoughtfully reflect and guide us through problems, and their affirmation of our identities had been what allowed us to make growth on our own.

On the other side of the chair, a good friend of mine shared her experiences being in both public and private inpatient care. Her experience in group therapy in both settings further highlights the divide. At the public hospital, she joined a six-week group in which the facilitator was focused on completing the curriculum, rather than on getting to know the group members. They read from a workbook and patients completed activities one after the other with little time to process or talk through their reflections before the next photocopied worksheet was pulled out, and there was “homework” to be completed before the next session. But in the private hospital, the groups were open-ended, allowing space for every member to share their story and support each other, ask questions, and offer advice. The facilitator did more listening than talking, more guiding than directing. Guess which experience my friend credits to her recovery?

It’s true that key issue is money, because paying for private care gets you a different level of care. Money and funding contribute more broadly, too. What kind of care are government grants and government-funded research paying for? What do nonprofit funders highlight as the care they think should be given to certain patient populations? But it really comes down to how the values and privilege of people in power cause them to channel that money towards policy and advocacy. The people making these decisions are far-removed from the actual care: researchers who haven’t done clinical work in years, well-meaning non-profit CEOs who don’t know the ins-and-outs of what they are funding, hospital executives whose bottom line is profit and profit alone. They are also overwhelmingly white, straight, wealthy, and male – largely disconnected from so many who are affected by their decisions.

As for me, I have enough evidence that “evidence-based treatments” alone won’t bring equity to our mental healthcare system. We need diverse, multicultural perspectives at every level – directors of and participants in research studies, leadership in political and nonprofit policy-making and individual practitioners. And I will continue to push back, ask questions, and think critically – both about the mental health care I am giving and receiving.

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

Can’t Stop, Won’t Stop: Mothering with ADHD

Photo of Robin holding Evren, a smiling baby.

Becoming a mother has been one of the most earth-shattering endeavors of my life. Motherhood fills me and drains me, unleashes and stifles. All of a sudden, my daily structures, routines, and systems have been thrown into the tornado of baby-dom and I am left trying to live in the rubble. As a person with ADHD, this storm of early motherhood has been extremely challenging and, in many ways, full of shame.

The first is the slurry of information I attempt to keep track of and manage. It begins with the daily basics: naps, diapers, and feeds. Beyond the typical baby management, my son has had a myriad of medical issues from birth, and was sent home after his month-long NICU stay in the <0.1% of weight and height and with two medications to be given twice a day, an hour before and after any feeds, blood sugar checks required 3x a day, and two kinds of special formula to be mixed together to create an exact number of calories. In addition to the regular pediatrician appointments, he had follow-ups with endocrinology and hematology, and labs to be done every two weeks. I was pumping every 2.5 hours, tracking how much I pumped each time, tracking how many minutes he was eating, how many milliliters he ate, how long he nursed for. After several months of painful, difficult breastfeeding, his pediatrician referred us to a pediatric dentist, and we had a lip tie and tongue tie revision, which saved our breastfeeding relationship but added mouth exercises needing to be done every four hours, weekly chiropractor appointments, and follow-ups with the dentist.

Managing this variety of tasks with this level of seriousness and intensity is not necessarily new to me. Before I became a stay-at-home mom, I worked as a professional school counselor in a public middle school. On an almost daily basis our team handled student emergencies. I had solid systems to make sure I remembered every step in our crisis management process – flow-charts and checklists I created myself, to-do lists and calendars that were housed and repeated in my email account, school counseling software, and paper notes. I used to spend nearly an hour every morning when I first arrived at work going through my planner and getting organized for the day. Mondays I spent nearly twice that time getting myself set up for the week. I manage this well, I used to think. No one probably would even guess that I have ADHD.

Now, my days look something like this:

Baby wakes up. Shit. It’s only 7. He’s supposed to sleep until 8. I was going to get so much done. I’m exhausted. How many times did he wake up last night? Wasn’t there a wake-up at 3 am that I didn’t mark? Whoops, I forgot to note when he woke up just now. Maybe that was ten minutes ago? Okay, diaper time. Wet diaper. Mark it. He seems hungry – feed him. Come on, baby, drink just a little more. Is that 20 mls or 30 mls left? How much did he eat yesterday? Let me calculate it – man, he didn’t eat enough yesterday. Maybe I should weigh him? Maybe I need to bring this up at his next doctor’s appointment? When is that again? Did I call the office to make sure they knew he needed a CBC done next time? Did I pay the last bill for the last CBC? Dangit – I was supposed to check his sugar and give him his medicine and then wait an hour and now I’ve missed this first medicine. Okay, I’ll make up for it later. Need to set an alarm to remind myself to give him his medicine in an hour. I guess now I’ll do his mouth exercises – it’s okay baby, don’t cry, don’t cry, here, you can nurse and that will make you feel better. Damn. Now I need to restart the alarm for another hour before I can give him his medicine.

All the systems I had in order for keeping track of things – none of them seem to work when applied to parenthood, not to mention they don’t work for their intended purposes anymore. So not only do I feel like I’m failing at motherhood, but I’m also failing at things I had once mastered. And, with a baby, time moves fast – I don’t have a moment to pause, reflect, revise my organization strategies – I just have to keep pressing on with my nose to the grindstone, hoping that the balls I’m dropping are made of rubber, and not glass.

Even when I do feel semi-organized, I can’t manage to get anything done. The baby’s schedule – or lack thereof – supersedes my schedule. The baby’s needs constantly, and necessarily, pull my attention and focus. Having ADHD for me means difficulty with transitions – whether that’s coming back from a commercial break, changing topics in a conversation, or moving to the next task in my day. With every interruption I feel irritation creeping in, and the energy I have to expend to focus and re-focus over and over again is exhausting, which means that what little I get done feels incomplete and insufficient. If I cross one thing off my miles-long to-do list, it’s been a productive day. But being a mom isn’t productive because raising a child has nothing to do with producing anything – I’m feeding, I’m changing diapers, I’m playing, I’m calming tears. I have no list to cross off and it isn’t task oriented, so my days feel like blurs with no structure.

Not to mention that playing with an eight-month-old is boring. He wants to do the same thing over and over again – scratch the couch cushion, then scratch the carpet. Put his pacifier in his mouth and throw it away. Blow spit bubbles. Crawl to one side of the living room then crawl back. I find myself constantly turning to social media, phone calls, texting, because I am bored. One marker of ADHD is that it’s very interest driven – if it’s not exciting, novel, thrilling, then my brain has a hard time sticking with it. Oh, the first time he makes that cute little noise, sure. But the thousandth? I do my best to be present, to be in the moment, to mirror and reflect whatever my son is experiencing. I set screen time limits on my phone, I restrict social media apps, I make rules about being outside and returning phone calls and chats. But I constantly find myself mindlessly scrolling while my son chews on his foot until I realize he is babbling at me and waiting for a response. What is wrong with me? Shouldn’t he be enough?

I am early in my motherhood journey. And I know that motherhood is challenging and difficult for neurotypical parents, too. I think that makes it even harder sometimes, because I tell myself that it’s hard for everyone, that I’m being dramatic or whiny, that I’m using my ADHD as an excuse to keep me from being a better parent. But then again – maybe my ADHD doesn’t make me a better or a worse parent, just a different one.

I am the parent who will happily follow your train of thought from cartoons to Halloween to Christmas to snowflakes to cornflakes and love it. I am the parent who will have boundless energy for outdoor adventures. I am the parent who will daydream with you, who will use my imagination to help you envision your life and goals. I am the parent who will sing silly songs, dance silly dances, and run around the house playing games. I am the parent who will feel all of your big emotions with you, validate your worries and fears, empathize with your anxieties. I am the parent who will let you slide when you forget to take out the trash or stop cleaning your room because you get distracted playing with all the toys you found under your bed.

At the end of the day, I have to remind myself that my son won’t remember if the house was clean, or how many things I was able to cross off of my to-do list every day. Truly, he won’t remember anything about these months that we grew into being family. But the feelings of love, joy, safety, and connection are what he will carry with him, and that is something at which I know I can excel. That is something of which I can be proud.

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.