When it comes to accessing psychological medication, Neurodivergent folks have some profound barriers to overcome to what otherwise seems could be a relatively simple task. This article does not promote psychological medicines over any other treatment. There are various effective ways to treat ADHD struggles and the issues of anxiety, depression, mood, or sleep difficulties that are all too familiar complications known to the Neurodivergent community. This article aims to do three things.
- Highlight the profound barriers Neurotypicals may not know to exist.
- Applaud the many neurodivergent people who navigate this complicated set of barriers with determination, even when it feels too much.
- Share some tips or hacks to overcome these unique barriers to increase access to quality individualized mental health care.
There are so many steps to take in the process of talking to a doctor about medicating their symptoms. Consider the steps required just to get the appointment, who do you call, when do you call them, and what do you say?
If the Neurodivergent person makes it to the next phase, having the opportunity to talk to a medical doctor, the doctor may or may not be aware of your neuro-status; they may not know how to interpret the messages being shared. This communication difference could make it difficult to interpret the intensity and scope of the feelings and experiences that are being discussed. Knowing what symptoms and experiences are relevant to share may seem obvious to you as a reader, but this cognitive process is vastly based on one’s ability to take the perspectives of others and their life experiences. In other words, what is “normal” is a required perspective when trying to communicate what might be abnormal. When having a conversation, being able to advocate and communicate with the Doctor in live time is exceptionally challenging. Doctors may make statements and assume that if you disagree or if what they say is not the case, the patient will clarify as needed. It is easy for a Neurodivergent person to hear inaccurate statements but not be able to pause the conversation to clarify, leaving them misunderstood and the doctor completely unaware of their inaccuracy.
When given a prescription, doctors may or may not take the time to clarify what to expect, potential side effects, and other critical or helpful information. (Such as the next step.) Neurodivergent patients might leave this appointment, prescription in hand but still uncertain about what to expect or how to proceed.
Navigating the pharmacy and insurance red tape is another complex and intermittent barrier. Some medications require prior authorization, and some controlled prescriptions have specific requirements for when and how to fill these prescriptions.
Taking medications accurately, consistently, and timely requires time management and planning. Acquiring refills and follow-up appointments is much the same.
If you are reading this and seeing the themes of Working Memory, Emotional Control, Flexibility, Task initiation, Planning and prioritizing, and Organization, you are likely seeing the Executive Functioning maze between the Neurodivergent and successful experiences with psychological medications to treat associated symptoms. Difficulties with areas of executive functioning are a hallmark of the neurodiverse.
Social or Communication Skills:
In addition to the profound executive functioning requirements needed to access and maintain this process, persons with impaired social or communication challenges have layers of added difficulty to the already complicated process. ‘
Simply finding the right specialist to call and the task of making an appointment can be hurdles that most of us will never understand. This goes beyond feeling anxious to talk on the phone, but navigating the entire process of communicating appropriate amounts of personal information to the correct person, accurately responding to questions about symptoms, personal history, medical benefits, and financial discussions. There are complex communication requirements that span the scope of a variety of difficult topics.
While most people are generally poor reporters of accurate self-information, Autistic and ADHD persons can have a significantly more difficult time with these tasks. Functional communication in this setting means being able to first identify what is relevant and then verbally communicate physical symptoms, complex feelings, and relevant experiences while trying to determine in live time if these personal experiences might differ in any way from the personal experiences of the general public, and this is a very complex, social and cognitive process.
Studies have found that healthcare providers lack awareness of the range of communication issues faced by Neurodivergent clients. Additionally, we know that when people find health care stressful because of difficulties with communication, they may lower their expectations, lower their attendance, and feel disaffected. This certainly does not build motivation toward the kinds of effort needed to successfully navigate these tasks.
Fear, Embarrassment, and Anxiety:
In addition to the executive functioning and communication challenges, there may be additional barriers of fear, embarrassment, and anxiety. Beginning with the initial call, the thought of merely speaking to someone on the phone can strike paralyzing avoidance and anxiety for some people with Neurodivergence. There is likely anxiety coming from a lack of understanding of procedures from waiting room wait times, screening, assessment, follow-up care, and financial planning. The unknown is a very stressful thing to many with Neurodivergence and obtaining proper psychological care is full of unknown and novel experiences.
Simple Solutions: Neurodiversity Hacks
First, make a specific plan based on specific needs.
If you or someone you love can identify with some of these barriers, specifically target those barriers with the supports and strategies you adopt. It is easy to get caught up in all or nothing thinking, “I tried medication, and it did not work” (Neurodivergent folks are prone to this thought pattern.) If making the call is stressful, ask a friend to sit with you while you make the phone call or use your provider’s portal platform (if they have one) to schedule or send questions in writing which is often more comfortable than verbal communication. If remembering to schedule follow-up appointments is difficult, make a point to schedule while you are still in the office. All strategies are not needed by all people, but all Neurodivergent people need strategies. Some have found systems that work for them, and others are still working it out. Do not give up.
Use logs, trackers, alarms, and reminders
There are digital and paper options available, do what makes sense to you. This is especially important for the first 2-4 weeks of a new medication. Not only is consistency important, but taking a mindful moment to notice changes, positive or negative, to note them down for future discussions with your doctor. Some medications will provide instant results, while others can be a very gradual build. It can be difficult to notice this shift without this pause or this data collection. Sometimes medications can provide helpful benefits, but at the cost of obnoxious and unnecessary side effects. This personalized data will equip you with the knowledge you need to make informed decisions moving forward.
We all have a multitude of options for setting reminders, smart watches, smart home devices, and apps on our phones, tablets, and computers, and all of these are options if they work for you. If you’ve tried these options and still struggle, there are more options to try; it often requires multiple co-occurring strategies but consider low-tech reminders as well. Simple practices of putting your medication on top of your nighttime reading book, by the coffee pot, or face wash as part of your morning routine can be very helpful prompts. You can put bands or bracelets on one wrist and swap them to the other wrist or remove them following the daily med time rituals. Sometimes it is helpful to carry backup meds with you just in case reminders a, b, and c fail to keep you on track. Finding what works is about identifying layers of support. When life is hectic and chaotic, we all need more support. Plan for these seasons!
Go to appointments with pre-planned questions and discussions.
I am not sure why doctors do not share more information with their patients automatically, but many do not. Asking specific questions to the doctor about the medications is very helpful.
Questions can include:
What is this medication prescribed for?
This may sound silly, but knowing the “why” behind doctor recommendations is helpful, and many psychological medications are prescribed off-label. This can be important for many reasons, but this information is beneficial if you need other medical care and communicate with other doctors about medications you are currently taking.
When will I notice a difference, and what should I notice if it is working?
It can be helpful to enlist a good friend or loved one to get their observations as well as your own; what changes are they noticing?
What are the typical side effects?
If a medication helps your symptoms but creates others or alters your personality, it is likely not the best fit. You will be surprised at the wide variety of options and combinations that a skilled doctor or specialist can provide in finding a medication plan that works for you. It can be a long and exhausting process, don’t give up.
Let’s face it, if you are neurodivergent, this is very likely to happen, so let’s make a plan! Some medications should be skipped until the next day, others can be safely taken when you remember, and some circumstances might call for the need to alter the dose to stay on your plan. Making a plan for this ahead of time will absolutely help you later.
Feel free to copy these questions directly into your notes app on your phone, add your own questions, and make space for planning for your next appointment with your medical provider, whenever it may be.
Folks, if you are reading this and it made you see the daily struggles of someone you love, I am thankful. If you are reading this and it highlights why this seemingly simple task feels absolutely overwhelming at times, I hope you feel encouraged and empowered. It is NOT just you; it is absurdly complex and requires you to navigate some of the most effortful things for your brain type all at once. You are doing hard things, and there is hope for it to get easier.
To my neurodivergent friends, your brains are absolutely amazing, beautiful, creative, and precisely as they should be. The need for medicating symptoms is not the same as medicating you.
If you are interested in the simple medication logbook that I made for my clients, you can find it here.