Part 1: Autism and Health Issues Unpacked: Exploring the Intersection of Autism and Chronic Fatigue Syndrome

Written by Claire Eliza Sehinson, MS with Dr. Megan Anna Neff, PsyD. Originally posted on Neurodivergent Insights


Do you ever find yourself navigating the maze of persistent fatigue, mysterious GI issues, hormonal sensitivities, and sensory sensitivities, wondering if these are linked to autism, chronic fatigue, or something else? You're not alone. You're not alone. Many in the Autistic community, including Autistic physician Mel Houser, refer to these myriad health complexities accompanying an Autism diagnosis as "all the things."

In this article, we, two Autistic professionals—a psychologist and a functional medicine provider—aim to unravel the intricate connections between Autism and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and other health conditions. We bring our clinical expertise and personal experiences to this complex intersection, hoping to clarify and illuminate the parallels and unique challenges faced by individuals dealing with both conditions.

From the prevalence of chronic fatigue and burnout in the Autistic and ADHD communities to the interconnected co-occurrence in CFS/ME, we explore the shared vulnerabilities and the risk of diagnostic overshadowing. Ultimately, we seek to differentiate between autism and CFS/ME, understand their overlaps, and underscore the need for accurate support and interventions.

This content, resembling an encyclopedia entry, delves into a wide range of health-related topics, rich in complexities and nuances. Feel free to dive into specific sections that pique your interest or browse through for a general understanding of various themes. This approach allows you to tailor your reading experience to your needs, whether you're seeking detailed information or an overarching summary.

It’s a lot of information, so feel free to skim ahead to the relevant sections!

  • Autism Overview

    • Autistic Neurotype

    • PMDD

    • EF Challenges

    • Genetic Conditions

    • Autistic Burnout

    • ARFID

    • Alexithymia

    • Sensory Sensitivities

    • Language and Auditory Processing Differences

    • Distinct Autistic Brain Style

    • Present from Birth

  • Chronic Fatigue Syndrome Overview

    • Key Diagnostic Characteristics

    • Additional Characteristics

    • ME/CFS Variability

    • Current Understanding and Treatment

    • Diagnosis

    • Common Co-occurring Health Conditions

    • Chronic Fatigue Triggers

  • Overlapping Characteristics

    • Brain Fog

    • Post-Viral Infections

    • Immune Dysregulation

    • Chronic Infections

    • Sleep Issues

    • Mitrochondrial Dysfunction

    • IBS

    • Gut Inflammation

    • SIBO

    • Leaky Gut

    • Mast Cell Activation and Histamine Intolerance

    • Methylanation 

    • Hypermobility and Ehler's Danlos

    • Dysautonomia and POTS (Postural Orthostatic Tachycardia Syndrome)

    • Insufficient Vitamin D, Essential Fatty Acids (i.e. Omega-3&6) & Minerals

    • HPA Axis Dysfunction

    • Neuroinflammation

    • Low Vagal Tone

    • Food and Chemical Sensitivities

    • Pyroluria

    • EMF Sensitivities

    • Pain and Firbryomyalia 

Autism Overview

Autism: A Distinct Neurotype

Autism is a distinct neurotype, characterized by a distinct and sensitive nervous system. This distinctiveness can sometimes lead to confusion with nervous system disorders like CFS/ME, complex trauma, and other dysautonomias.

Characteristics of Autistic Individuals

Autistic people have a specific way of perceiving and interacting with the world. This includes direct communication, a highly sensitive nervous system, a tendency for monotropic attention, self-soothing through repetition and routine, and a communication style marked by authenticity, directness, and literal language use.

The following are several experiences and conditions that often occur within the constellation of autism: 

  • PMDD

  • Executive Functioning Differences

  • Genetic Conditions

  • Autistic Burnout

  • ARFID and Eating Disorder

  • Significant sensory processing diferences 

  • Alexithymia and interoception challenges

PMDD (Premenstrual Dysphoric Disorder)

PMDD is a severe form of premenstrual syndrome characterized by significant mood swings and physical symptoms. This condition is often due to a genetic cellular sensitivity to changes in estrogen and progesterone levels. Studies indicate varying prevalence rates of PMDD among Autistic AFAB individuals, ranging from 14.5% to 92%. This significant variance underscores the impact PMDD has on mental health in this population, including a heightened prevalence of suicidal thoughts and attempts (Citation: Groenman, 2022)).

Executive Functioning Differences

Executive functioning encompasses a group of cognitive skills crucial for planning, organizing, initiating tasks, managing time, and regulating behavior. Many Autistic people experience differences in these areas, significantly affecting our daily life. These differences are particularly challenging when navigating health contexts, managing medications, and maintaining medical regimens. Understanding these challenges is vital in grasping how autism impacts an individual's experience of other health conditions.

It's important to note that while individuals with CFS/ME may also face executive functioning challenges, these are typically due to the illness itself and not a baseline characteristic. In contrast, Autistic individuals often have inherent difficulties with executive functioning. These challenges may intensify during periods of Autistic burnout or when dealing with co-occurring conditions, but they are a fundamental part of their baseline experience.

Genetic Conditions

In addition to their neurotype, some Autistic individuals may have co-occurring genetic conditions, including Prader-Willi syndrome. This rare genetic disorder affects growth, metabolism, and behavior. Although Prader-Willi syndrome's prevalence is low in the general population, a significant overlap exists with autism. Research indicates that 12-26% of individuals with Prader-Willi syndrome also exhibit autistic traits (Bennett, 2015; Kong et al., 2020).

While most Autistic individuals do not have Prader-Willi syndrome or other specific genetic conditions, the occurrence of these conditions is higher among Autistic people compared to the non-autistic (allistic) population. Current recommendations suggest that genetic testing for conditions like Prader-Willi syndrome can be beneficial following an autism diagnosis in childhood, due to the higher rates of co-occurrence.

Autistic Burnout

Characterized by exhaustion from masking autistic traits and coping with daily demands, autistic burnout can significantly affect mental health and resembles the fatigue seen in chronic fatigue syndrome.

ARFID or History of "Eating Disorder"

ARFID, or Avoidant/Restrictive Food Intake Disorder, is characterized by a limited range of food choices stemming from:

  • Avoidance of specific sensory characteristics in food, such as textures or smells.

  • Aversions to certain foods or the feeding environment, often as a trauma response to prior experiences like choking, force-feeding, or pain.

  • Restrictions due to low appetite, disinterest, or a lack of enjoyment in food.

Many Autistic individuals across all age groups may experience ARFID or have a history of eating challenges. These challenges are often misinterpreted as other eating disorders, like Anorexia Nervosa, or simply dismissed as “picky eating.” These feeding issues can contribute to or be caused by gastrointestinal (GI) problems, interoceptive difficulties, and can exacerbate nutritional deficiencies or other health conditions (Schmidt et al, 2021).

Although current research suggests a prevalence rate of ARFID in Autistic individuals at around 16%, this figure is likely a conservative estimate. Clinical experience indicates that this number is probably much higher. ARFID has only been formally recognized since the publication of DSM-5 in 2013 and is still predominantly considered a pediatric condition. However, a broader understanding acknowledges that ARFID affects individuals of all ages. For many undiagnosed Autistic individuals, feeding behaviors may represent their initial interaction with the medical system. Further exploration of these issues will be discussed in our upcoming blog post on Gut Health, ARFID, and sensory eating.

Alexithymia

Alexithymia, characterized by difficulties in recognizing and expressing emotions, is notably more prevalent in the Autistic community. Estimates suggest that approximately 50% of Autistic individuals experience alexithymia. This condition is not only about emotional recognition and expression but also has broader implications for overall health. Alexithymia is associated with an increased incidence of chronic pain, burnout, somatization, and other chronic health conditions (Aron, 2019; Kojima, 2012).

Significant Sensory Issues/SPDs (Sensory Processing Differences)

Sensory processing differences are indeed a defining characteristic of autism. Many Autistic individuals experience either heightened or diminished sensitivities to various sensory inputs, such as light, sound, touch, or taste. Additionally, differences in interoception, the internal perception of bodily sensations, are common, with some experiencing reduced awareness or an amplification of internal signals. 

These sensory processing differences play a crucial role in shaping the daily experiences of Autistic people, profoundly impacting their interaction with health and illness. Such sensitivities can extend to gastrointestinal discomforts, influencing eating habits and potentially leading to issues like ARFID. Moreover, heightened or altered sensory perceptions can also affect hydration, as the sensory qualities of liquids might be challenging for some. These nuances in sensory processing are not just isolated experiences; they directly contribute to the overall management and navigation of various health conditions, underscoring the need for tailored approaches in healthcare and daily living strategies.

While it's true that sensory processing sensitivities can develop in anyone undergoing chronic illness, for Autistic individuals, these sensitivities are typically present from childhood. They constitute a core part of their baseline experience. Notably, these sensitivities may intensify during periods of Autistic burnout or when facing additional health challenges.

Language and Auditory Processing Differences

Autistic people often exhibit distinct language and auditory processing differences. These differences can result in challenges with typical (allistic) communication styles. Autistic brains generally process information in a bottom-up, detail-oriented manner. This means that Autistic individuals might process their environments and information more deeply, and sometimes more slowly, compared to non-autistic individuals.

This bottom-up processing style and distinct approach to language and communication are key factors that distinguish autism from CFS/ME and other conditions primarily affecting the nervous system. The unique nature of Autistic communication has been observed in the way Autistic people often relate more naturally with each other. This distinctive communication style and mutual understanding amongst Autistic individuals can be considered a cultural difference, reflecting a shared experience and perspective within the Autistic community (Crompton et al., 2020

Distinct Autistic Brain Style

Similarly, the Autistic brain style is distinctly its own, characterized by a distinct way of processing information and perceiving the world. This distinctive approach influences various aspects of life for Autistic individuals, from how they engage in social interactions to their methods of problem-solving, to self-soothing through routine and repetition. This is also a distinguishing feature from other nervous-system based conditions such as Chronic Fatigue Syndrome. 

Present from Birth

Finally, a critical distinguishing factor of autism lies in its etiology. Autism is a neurotype that is inherently present from birth, deeply embedded in an individual's neurological framework. This innate aspect sets it apart from conditions like CFS/ME, which typically develop later in life. Understanding autism as an intrinsic part of an individual's neurology from the outset is essential, as it underscores the fundamental differences between autism and other conditions that emerge over time.

continued in part 2

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Autism, Chronic healthKiley Hanish