Introduction:
This enlightening interview with Dr. Mel Hauser delves into the misunderstood world of neurodivergent brains and the connections to fibromyalgia like conditions. Driven by her personal experiences and dedication to supporting the neurodivergent community, Dr. Hauser sheds light on the challenges faced by individuals whose needs have not been met by the traditional healthcare system. This conversation is eye-opening and impactful, validating some and sparking contemplation for others.
Neurodivergent Brains and Autistic Burnout:
Dr. Hauser is a family doctor caring for neurodivergent patients across their lifespans. She founded a nonprofit organization called All Brains Belong, which is a community health organization in Vermont that provides neurodiversity of affirming medical care but also a wide range of community and education programs, all aimed at trying to make life better for neurodivergent people.
For those unfamiliar with the term neurodivergent, she shares that it is the "one in five people whose brains work in ways that significantly depart from the ways that society has deemed typical.
Dr Hauser shares, "I don't think there is a typical brain, although society really does give people that message."
Some neurodivergent people have specific diagnoses such as ADHD, autism, dyslexia, dyspraxia, among others. However, most do not have specific diagnoses, that is they have not received a diagnosis yet, especially in adults. Her practice has focused on supporting neurodivergent children and adults, often multi-generational families. Although unintentional, my practice also has many multigenerational neurodivergent families.
She discovered that these individuals were not having their needs met, both in healthcare and outside of healthcare. Kids getting bullied in school, struggling to have their access needs met, adults struggling to access employment, struggling with social isolation, and really people of all ages not getting their needs met by the healthcare system.
And I think so much of this also relates to the defaults of society. To become a patient, you must fill out the 20-page packet to make an appointment and pick up the phone. In school, you must sit in the chair with your hands folded, just like all these defaults.
But there's not a default brain, and so there's just a lot of barriers to access and a lot of othering.
"And then, when I became the parent of a multiply neurodivergent child who's six now, the urgency really set in that I needed to do my part to really shift the broader community conversation on neurodiversity."
She found that the traditional health system created barriers to optimal care. She decided to break free of the restrictions by zooming out and re-imagining what health is; it's not just medical care in the office but also is community health, making friends, and accessing your education. Health is accessing your employment and being able to express and live without masking your areas of special interest and interacting with the world. For some people, it is feeling safe for the first time.
She shared her limited understanding of neurodivergence as a family practice doctor a few years out of residency and the significant blindspots and deficits. Her daughter Luna made it clear that she did not know what she was doing and was lacking. She shared an insight that I also have come to realize regarding the many autistic patients of all ages.
"To my knowledge, at that time, I was not aware that I had taken care of an autistic infant before. I, of course, have many times but didn't know it. And I really learned about the practical day-to-day life that involves adapting the routines and environments for Luna to thrive."
"Along the way, I learned I have much in common with Luna. But it was not until early in the pandemic, with physical and mental exhaustion, taking care of patients in the hospital, just really being overtaxed by the strain of all that was happening. At that time, a job that was a poor fit for my needs and caused me a lot of sleep deprivation caring for patients on call, et cetera, homeschooling, and then three-year-old anyway, chaos, if you will. And that resulted in something called autistic burnout. And many late-diagnosed or late-identified autistic adults get their diagnosis in the context of autistic burnout."
Autistic burnout is the state of physical and mental exhaustion from years of being severely overtaxed by strain. At the age of 37, she learned for the first time she had ADHD, six months before the burnout got worse, and then she got her autism diagnosis.
"The great irony is that, unfortunately, many adults or children and adolescents or autistics of all ages don't get their diagnosis until then because the DSM criteria for autism are autistic stress behaviors. And the more disabled by the environment you are, the more stressed out you are and the more likely you are to appear more stereotypical DSM criteria."
She also discovered she was dyslexic, dyspraxic and dysautonomic. She states the obvious.
"That(the autism diagnosis) would've been really good information to have had 37 years ago."
The Unmet Needs of Neurodivergent Individuals:
One of the key themes discussed in the interview is the unmet needs of neurodivergent individuals within the healthcare system. Dr. Hauser highlights the prevalence of multi-organ system neuroimmune conditions, including fibromyalgia that are more common among autistic and ADHD individuals.
She shares that 70% of her practice comprises patients with these overlapping conditions, affectionately dubbed "all the things."
She had to hire a second medical provider due to her practice filling up. She was worried she was biased in recognzing the high rate of cooccuring invisible illnesses, all the things. Her new medical provider made the same conclusions.
And she said "no, no, all the people have all the things."
"And so we screen all our new patients. A lot of people come here because they know they're neurodivergent and they're looking for neurodiversity affirming healthcare. But that's not actually even most people. People come because their physical health needs are not met by the traditional healthcare system.
And amongst those people, they are far more likely to have all the things. And if you have all the things, you're far more likely to be neurodivergent. So it's like the pathways to adults discovering their true selves and how their brain works."
She shared that in her clinic 95% of the neurodivergent people have the cluster of fibromyalgia like invisible illness, they don't just have one. They have more than one because they're all related. But why is this connection not made in primary care? Dr. Hauser shares,
"I think the system interferes with the individuals being able to see the pattern. I think the system especially in settings where there's the pressure to, see a million patients, see people every 10 to 15 minutes work in this terrible electronic medical record, which by the way is like just a neurodivergent person's nightmare a lot of the time.
It's very hard to have the bandwidth and even the full access to your cortex in that setting. If you are just trying to survive and you're treading water at all times you, you don't necessarily have access to the skills that you have, which is to pattern match.
And so this is a pattern matching exercise. And I think one of the things that is challenging is that medical education is often based top down, right? You have an autistic patient, these are the 40 co-occurring conditions that are commonly associated with autism. Okay, but that's not how the patients come in. The patients come in bottom up. And so the task is to provide a narrative for organizing this because the patients need a narrative also. So I can't tell you how often it is that someone comes in with 40 diagnoses and they feel so broken because clearly I must be broken if there's 40 things wrong with me and I say, oh no, you don't have 40 things wrong with you. You have one thing. It's called all the things. Oh, and by the way, let's talk about your brain."
Many neurodivergent children become identified due to dysregulation and delayed development in school and preschool settings. Most adults were never identified as children and now present with fibromyalgia like conditions, all the things.
Elevating the Expertise of Lived Experience:
Dr. Hauser emphasizes the importance of elevating the expertise of individuals with lived experience. Through her nonprofit organization, All Brains Belong, she aims to provide neurodiversity-affirming medical care and offer a wide range of community and education programs. By listening to and learning from the neurodivergent community, Dr. Hauser and her team have gained valuable insights into best practices and harmful approaches. The inclusion of lived experiences enables a more holistic understanding of the challenges faced by neurodivergent individuals.
The Connection Between Neurodivergent Brains and Fibromyalgia:
Dr. Hauser discusses how fibromyalgia and related conditions are more common among individuals with autism and ADHD. The overlap between the two reveals a complex interplay between physical and neurological aspects. By understanding this connection, healthcare professionals can better support individuals living with fibromyalgia and related issues. Fibromyalgia is a chronic disorder characterized by widespread pain, fatigue, and cognitive difficulties, such as brain fog. While the exact relationship between autism and fibromyalgia is still being studied, there is evidence showing substantial overlap. Many individuals with fibromyalgia may also exhibit traits associated with autism, such as sensory sensitivities and social communication challenges. Acknowledging and exploring this connection can lead to a deeper understanding of these conditions and more effective support for individuals experiencing both autism and fibromyalgia.
"All the Things" Recognizing the Complexity
Dr Mel Hauser expresses her struggle with feeling broken due to having multiple diagnoses. She eloquently reframes her perspective by explaining that it is not about having multiple things wrong but rather having "all the things." This realization highlights the intersecting nature of conditions such as fibromyalgia, migraines, irritable bowel syndrome, dysautonomia, among and others.
"We refer to this around All Brains Belong as "all the things" because most people here have "all the things." And amongst the neurodivergent adults, 95% have all the things. And when, I knew that each of these conditions, including fibromyalgia, is more common in autistic people and ADHD people. I guess the pattern was diluted in general primary care, the people who come here are people whose needs were not met by the traditional healthcare system. So you have neurodivergent people whose needs were not met by the traditional healthcare system that is going to be a self-selected group of people who are more likely to have "all the things."
It emphasizes the need for healthcare professionals to view these conditions as interconnected and approach treatment from a holistic standpoint.
Broadening Our Understanding – Connecting the Dots of The Overlapping Patterns
Mel and I discuss the significance of identifying the overlapping patterns in neurodivergent individuals with fibromyalgia and related conditions. It is very important to ask the right questions during medical assessments to ensure that individuals receive comprehensive care. She has experienced encountering patients who have been misdiagnosed or received inadequate healthcare, leading to feelings of frustration and neglect. She emphasizes the need to validate and understand neurodivergent minds, offering a multifaceted approach to healthcare that addresses various comorbid conditions.
Unmasking the Stigma – Embracing Inclusive Support
Mel and I shine a light on the stigma surrounding neurodivergent individuals and emphasize the detrimental effects it has on their health and well-being. Dr. Hauser discusses the concept of ableism and how societal beliefs about "normalcy" perpetuate feelings of inadequacy and failure. Ableism is a set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities and often rests on the assumption that disabled people need to be ‘fixed’ in one form or the other. The healthcare system often fails to recognize the unique access needs and challenges faced by neurodivergent individuals. They stress the importance of inclusive support systems prioritizing autonomy and self-determination and providing comprehensive care that addresses all aspects of an individual's health.
Identifying the Unknown – Understanding Autism Spectrum Diagnosis
Mel and I engage in a thought-provoking discussion about autism spectrum diagnosis in adults. We acknowledge the lack of accurate statistics concerning the percentage of adults diagnosed with autism due to underdiagnosis and societal misconceptions. She also highlights the challenges faced by autistic adults in disclosing their diagnosis to healthcare providers due to fear of judgment and the impact this has on their overall health. There is an urgent need for increased awareness, education, and accurate diagnosis of neurodivergent individuals.
Understanding Autism:
Autism is often described as a lifelong difference in how individuals communicate and interact with the world. Contrary to popular stereotypes, autistic individuals do experience empathy, sometimes even to a hyper-empathic degree. However, there may be challenges in communication styles and understanding between autistic and non-autistic individuals, which is known as the double empathy problem. Recognizing and respecting these differences is crucial to fostering meaningful connections and inclusive environments.
Dispelling Stereotypes:
One common stereotype about autism is the belief that autistic individuals lack empathy. However, this couldn't be further from the truth. Autistic physician and advocate Dr. Mel Hauser emphasizes the importance of acknowledging that empathy exists within the autistic community. Autistic individuals often exhibit intense emotional awareness and may have a different communication style, leading to potential misunderstandings with neurotypical individuals. By embracing neurodiversity and understanding the unique strengths and challenges of "All Brains Belong," we can challenge these stereotypes and create a more inclusive society.
Supporting Neurodivergent Individuals:
Neurodivergent individuals, whether autistic or experiencing fibromyalgia-related issues, often face significant challenges in navigating healthcare systems and society as a whole. Many individuals with neurodivergent brains have unique access needs that must be understood and respected. By adopting a strength-based approach, we can celebrate the incredible strengths and perspectives that individuals with neurodivergent brains bring while providing support and accommodations to address the challenges they may face.
Understanding Access Needs: A Key to Empowering Neurodivergent Individuals
Living with neurodivergent conditions such as autism or fibromyalgia can present unique challenges. As healthcare professionals, it is crucial to recognize and address the access needs of individuals with these conditions. What are access needs, and why are they important for autistic individuals, many living with fibromyalgia and related conditions, also known as "all the things?"
Dr Hauser shared insights from working with her parents, with many voicing the following sentiments.
"It also relates to better understanding your access needs, like your physical, emotional, and interpersonal.
The ways I connect access needs to fibromyalgia and related conditions is that, if I, for example, am a person who needs sleep, I don't know that's my access need until it's taken away, and now I am really having a hard time, or I don't know that I have an access need for blocking histamine because,
How would I know that? And then, all of a sudden, I stopped my famotidine because it had fallen out of favor to be on chronic H2 blockers. Now, all of a sudden, I'm having a hard time functioning, not with GI stuff, but with other stuff that, in fact, famotidine was helping a lot with. There are all kinds of examples like that.
Or, I have an access need for movement. It gives me dopamine. And then, something happens. I get an injury, and now I can't keep up with the exercise routine, or now I have my CFS, and now exercise actually makes me worse right now at this stage of my illness.
And now I don't get enough dopamine. And so now I need dopamine, but I also need pacing. You don't learn about, like one of my patients once said, I don't know what my needs are. I just know they're not being met. And I think that's an important place to start."
This statement emphasizes the importance of recognizing and fulfilling the specific requirements of individuals with neurodivergent conditions, which can significantly improve the quality of life for individuals living with fibromyalgia.
Understanding Same Foods:
One interesting concept Dr. Hauser shared is the idea of "same foods." Same foods are foods that consistently taste the same. For many individuals on the spectrum, these same foods can offer a sense of safety and predictability. For example, a cucumber is a same food because it usually tastes like a cucumber, while blueberries have different sweetness, bitterness, and juiciness levels. Recognizing and introducing nutritious same foods can help individuals with neurodivergent conditions maintain a balanced diet. Unfortunately, many will be susceptible to eating the same foods, but they are highly processed carbohydrates manufactured by food companies with high levels of salt, fat, and sugar geared to sell their products. This makes many autistics susceptible to predatory practices by food companies intent on selling more food and less on their health which can lead to higher rates of heart disease. Other maladaptive coping strategies include substance use including nicotine, opioids, marijuana, and alcohol. These contribute to shorter lifespans.
The Role of Autonomy and Pathological Demand Avoidance (PDA):
Dr. Hauser touches on the concept of autonomy and its relationship with neurodivergent conditions. Autonomy is identified as an access need, particularly for individuals with pathological demand avoidance (PDA), a trait often associated with autism and ADHD. PDA is characterized by an overwhelming or obsessional need to resist or avoid demands, which can often lead to sensory overwhelm, causing meltdowns and violent outbursts. While many neurotypical people often try to avoid demands, those with PDA engage in avoidant behaviors at a greater level. The key underlying factor is the extreme levels of anxiety associated with a loss of control, which can feel like a panic attack. Because of high levels of anxiety, they will often respond with a “No” even to tasks or activities that they normally enjoy and can spend a great deal of energy trying to gain control of situations and people. Recognizing autonomy as a fundamental need helps caregivers understand the challenges faced by individuals with PDA and encourages a partnership-based approach rather than confrontational tactics.
Broadening the Narrative and Shifting Perspectives:
Dr. Mel highlights the need to shift the medical community's perspective on neurodivergent conditions. By acknowledging and embracing individuals' narratives surrounding their own health, healthcare professionals can provide more effective support and care. It is helpful to understand it like a different software operating system in how one interacts and perceives the environment that goes back to infancy but may have been missed through masking and camouflaging. There are other conditions many autistic people have that overlap with fibromyalgia and can cause serious distress. These include Mast Cell Activation Disease, hypermobility spectrum and hypermobile EDS, migraines, irritable bowel, TMJ, chronic back and neck pain, irritable bladder, and chronic pelvic pain, POTS, as well as many others.
By broadening the narrative and shifting perspectives, healthcare professionals can provide better support and care to individuals living with neurodivergent conditions. Every individual's experience is unique, and embracing their narratives is essential to promoting inclusivity and empowerment.