Understanding Neurodiversity and Autism Spectrum Disorders.
Recently, I had the great pleasure of sitting down with one of my personal heroes, Dr. Sandra Paulsen, to discuss trauma and PTSD in neurodiversity and Autism Spectrum Disorders (ASD).
During our conversation, we delved into the complexities of autism, which Dr. Paulsen explores in her new book, The Beauty and Burden of Autism
Given that Autism Spectrum Disorders are often the subject of misinformation and disinformation, discussing this topic with the respect it deserves can be challenging.
On one hand, labeling someone as neurodiverse versus neurotypical already presents challenges. Additional labels such as high-functioning or low-functioning are also often problematic. As one of my beloved patients who is on the spectrum said to me; pretty soon its going to be more “typical” to be “neuroatypical”.
In my view, these labels are tools for understanding, so we can move toward a world that embraces all flavors, colors, and dimensions—where we see and understand each other with awareness.
Many people tend to associate neurodiversity with higher-functioning, verbal autism, yet there is a whole other dimension of autism involving non-verbal, lower-functioning individuals that also needs to be recognized.
Additionally, ableism can sometimes emerge from those who are not neurodiverse in their attempts to "normalize" spectrum-related disorders. This often results in denying or minimizing the experiences of neurodiverse individuals, usually due to a lack of understanding or discomfort with the subject.
As Dr. Paulsen mentions; "If you’ve met one person with Asperger’s, you’ve met one person with Asperger’s"/ This underscores the uniqueness of each individual’s experience. While well-meaning, generalized advice or "miracle cures" often fail to recognize the distinct needs of each person with autism.
One of my favorite sayings is, "Don't judge what you don't understand." With that in mind, lets try to understand Autism Spectrum Disorders.
Since attending my first Defeat Autism Now! conference in 2006, I have been deeply engaged in learning about Autism Spectrum Disorders. Over the years, I’ve done my best to support my neurodivergent patients and stay current with the latest research.
While I am not a specialist in neurodiversity, I feel a strong connection to this community and recognize that there is always more to learn and understand.
To fully understand autism, we must explore several key concepts that shape our current perspective.
What is Neurodiversity:
Neurodiversity, a term introduced by Judy Singer, recognizes the natural variation in human brain function as valuable differences, not deficits. Autism, ADHD, and dyslexia are seen as variations of the human experience rather than disorders needing a cure. This shift in understanding has moved us away from the early "autism reversal" approach, which many parents pursued at great expense, toward a more supportive focus on autism navigation and empowerment.
Causes and Theories and Perspectives on Autism
Many attempts are made to understand what is driving ASD and here are some of the main concepts being explored:
Autism as a Neurodevelopmental Disorder: Autism is classified as a neurodevelopmental disorder, characterized by a spectrum of social communication styles, sensory processing differences, and focused interests.
Gut Microbiome and Autism: There is a widespread misconception that autism is linked to a unique gut microbiome. However, recent studies, including meta-analyses, show no strong direct association between autism and a distinct microbiome. Instead, differences in gut microbiomes are more likely related to dietary patterns influenced by autistic traits, such as selective eating.
Neurocognitive Genetics and Autism: Genetic factors play a significant role in autism, with research identifying several genes involved in synapse function, calcium signaling, immune function, and mitochondrial function. For example, the downregulation of GABA-A receptors and certain serotonin transmission genes (like GABRG3 and HTR2A) has been linked to autism.
Mitochondrial Function: Mitochondrial dysfunction, linked to genes such as SHANK3, ERK2, and TOMM40, is associated with autism. Since mitochondria are vital for cellular energy production, their dysfunction can lead to neurological symptoms. Understanding these genetic variations can offer valuable insights. Tools like the IntellxxDNA Neurodevelopment Panel allow for the testing and analysis of these polymorphisms, guiding targeted nutritional and lifestyle interventions.
Immune System and Autism: Research supports the presence of immune system abnormalities in individuals with autism, including altered cytokine profiles and chronic inflammation. This remains an area of active investigation, as the complexity of these immune responses requires further study. Chronic infections, such as Epstein-Barr virus, Candida, and parasitic disorders, may contribute to neuroinflammation and increased mast cell activity in the brain, impacting behavior. Additionally, the IL-6 SNP variant (rs1800796) has been shown to increase autism risk, potentially through immune upregulation and neuroinflammation. Studies suggest that immune profile alterations are associated with the severity of autism-related behaviors.
Environmental Factors: Environmental exposures, including prenatal toxins and heavy metals, are under investigation for their potential links to autism. While some studies suggest associations, definitive evidence remains elusive, necessitating further research to clarify these relationships.
Life on the Spectrum:
Living with Autism Spectrum Disorder is both exhausting and challenging and understanding the ASD experiences sheds light on the social supports and therapeutics that are needed for support.
Individuals on the spectrum must continuously manage self-regulation, social expectations, sensory overload, and feelings of disconnectedness. The constant need to navigate and counter sensory input can lead to behaviors like guarding or disconnection, which may be perceived as aloofness. Sensory overload often results in stimming behaviors—such as hair twirling, rocking, or finger tapping—that are misunderstood and socially rejected. One overlooked impact on the chronicity of these symptoms is chronic fatigue (see Spoon Theory).
This daily struggle can expose people with autism to trauma, psychological abuse, rejection, loneliness, and confusion. More on this later.
Gender Differences On The Spectrum
In my discussion with Dr. Paulsen, we highlighted that there are gender differences that are now being understood.
ASD is diagnosed more frequently in males, but research suggests that autism presents differently in females, contributing to lower diagnosis rates among them.
One key difference is the higher tendency for females with ASD to camouflage their autistic traits—masking behaviors to appear more neurotypical, such as forcing eye contact or mimicking social cues. This camouflaging, often driven by societal pressures, can lead to underdiagnosis, delaying necessary support and treatment.
Studies show that females with ASD score higher on camouflaging measures compared to males, which may obscure the true extent of their challenges. Inconsistent findings on gender differences in specific autistic symptoms, such as repetitive behaviors and social communication, highlight the complexity of this issue and the need for further research.
Clinicians must be aware of these gender differences to ensure accurate diagnosis and timely intervention for females with ASD, who might otherwise be overlooked due to their ability to camouflage symptoms.
Special Gifts and Challenges of ASD
Individuals with ASD may display extraordinary abilities, often referred to as savant skills, that stand out compared to their overall abilities or those of peers. These talents, more common in individuals with ASD than in other populations, include lightning calculation, prime number identification, calendar calculation, perfect-perspective drawing, absolute pitch, instant music reproduction, and extraordinary memory for facts.
The higher prevalence of savant skills in ASD is not fully understood, but research suggests it may be linked to detail-focused cognitive processing, or "weak coherence." This cognitive style, characterized by a focus on individual details rather than the whole, may predispose individuals with ASD to excel in specific areas. A twin study supports this, showing that children with pronounced ASD traits, particularly in restricted and repetitive behaviors, were more likely to exhibit exceptional talents.
ASD individuals often have heightened sensitivity, both sensory and emotional. They may experience intense reactions to sensory stimuli such as bright lights or loud noises, and they may find social interactions challenging due to emotional sensitivity. This heightened awareness can also lead to exceptional systemizing abilities, where individuals can think through processes and foresee their implications. However, this can become overwhelming.
Many people with ASD think visually, allowing them to "see" the outcomes of design features or processes. However, some experience "aphantasia," the inability to visualize. While some individuals with ASD excel with metaphors, others may struggle. According to Paulsen, ASD may involve extensive dendritic branching, leading to challenges in processing information as it takes longer for associated thoughts, emotions, and body sensations to be fully integrated, making interruptions particularly uncomfortable.
This detailed cognitive processing often results in a greater number of associations, a tendency toward monologues, and a strong emphasis on facts and objectivity—traits that enhance problem-solving skills. In contrast, neurotypical individuals may process thoughts more quickly, are more comfortable with interruptions, and often prefer fiction and social-emotional contexts.
A significant challenge for individuals with ASD is amygdala overwhelm, which affects emotional regulation and can trigger fight-or-flight responses. Without adequate support for downregulation, this can lead to dissociation and difficulties in reaching developmental milestones. Additionally, processing unresolved trauma can be particularly challenging for those on the spectrum.
Psychological Co-morbidities in Autism
Not surprising people with ASD suffer from other co-morbidities or co-existing conditions including:
1. Anxiety Disorders: Individuals with Autism Spectrum Disorder (ASD) frequently experience high rates of anxiety disorders, a common comorbidity in this population (White et al., 2009, Whitney et al., 2018).
2. Psychiatric Comorbidities: ASD is often associated with various psychiatric conditions, including mood disorders, ADHD, and psychotic disorders (Russell et al., 2015).
3. Post-Traumatic Stress Disorder (PTSD): The co-occurrence of PTSD with ASD has been documented, with individuals on the spectrum particularly vulnerable to overwhelming experiences, even those perceived as minor ("small T") traumas by neurotypicals (Golan et al., 2021; Paulsen, 2023).
4. Sleep Disorders: Sleep disturbances are prevalent among individuals with ASD, significantly affecting their overall well-being (White et al., 2009).
Framework and View that can drive treatment and support
Dr Paulsen, uses a framework in her approach to Autism called the Panskeppian Affective Brain . This was developed Jaak Panksepp, a prominent figure in affective neuroscience, who collaborated with Dr. Paulsen to explore how emotions are rooted in specific neural circuits in the brain—what he termed "primary process" emotional systems.
These systems, deeply embedded in ancient subcortical brain regions, are shared across many species and are fundamental to survival and social behavior. See picture below which was purchased for use from Dr. Paulsen.
Panksepp identified seven core emotional systems:
SEEKING System: Drives exploration and resource acquisition, linked to curiosity and motivation. It operates via the mesolimbic dopamine pathway, involving the hypothalamus and ventral tegmental area (VTA).
RAGE System: Triggers aggressive responses to frustration, mediated by the amygdala, hypothalamus, and periaqueductal gray (PAG). It underpins feelings of anger and aggression.
FEAR System: Governs responses to threats, involving the amygdala, hypothalamus, and PAG. It is associated with anxiety, fear, and panic.
LUST System: Controls sexual behavior, driven by reproductive needs, and involves the hypothalamus, amygdala, and ventral striatum.
CARE System: Facilitates nurturing and caregiving, particularly toward offspring, through the release of oxytocin and involvement of the hypothalamus and anterior cingulate cortex.
PANIC/GRIEF System: Manages separation distress and social bonding, engaging the anterior cingulate cortex, amygdala, and PAG.
PLAY System: Promotes social joy and learning through play, involving the dorsomedial thalamus and other subcortical structures.
In Panksepp’s model, neurotransmitters like acetylcholine, serotonin, and norepinephrine are critical in modulating these emotional systems:
Acetylcholine: Influences attention and learning, particularly within the SEEKING system, helping to focus on emotionally significant stimuli. It operates primarily in the basal forebrain and brainstem.
Serotonin: Regulates mood, anxiety, and social behavior, with significant effects on the FEAR and PANIC/GRIEF systems. It originates in the raphe nuclei and affects regions such as the amygdala and prefrontal cortex.
Norepinephrine: Drives arousal and the "fight or flight" response, playing a key role in the RAGE and FEAR systems. It is produced in the locus coeruleus and modulates areas like the amygdala and hypothalamus.
Jaak Panksepp's concept of "integration coherence" emphasizes the seamless coordination between emotional and cognitive processes. This integration is crucial for adaptive behavior, ensuring that emotional responses are modulated by cognitive evaluations, leading to effective interactions with the environment. The goal of neurostabilization and nervous system processing would be to be able to access adaptive behaviors as shown such as naming feelings, mindfulness, objectiveness, and containment.
Now, knowing that the ASD experience is one of overwhelm and colliding of emotions, chemicals, and sensations; you can see how difficult it would be to access adaptive behaviors.
Panksepp also investigated the relationship between autism and disturbances in the brain's opioid system, proposing the Opioid Peptides Hypothesis* He suggested that gluten and casein could break down into peptides with opioid-like effects on the brain. If these peptides are not properly metabolized, they may accumulate and bind to opioid receptors, potentially contributing to autism symptoms like social withdrawal and repetitive behaviors. This hypothesis has prompted some practitioners to explore gluten-free and casein-free diets as possible interventions for autism.
Moreover, low-dose naltrexone (LDN) has been studied for its ability to block abnormal levels of endogenous opioids. LDN has shown promise in reducing self-harm, behavioral issues, and irritability in individuals with autism, though it does not affect the core symptoms of the disorder. Dr. Paulsen, discusses in our interview the use of LDN for neurodiversity as it may
Panksepp’s work in combination with Dr. Paulsen illuminates the complexity of emotional processing in Autism Spectrum Disorder (ASD), highlighting the significant roles of neurotransmitters, dietary factors, and pharmacological interventions. As well as the discussion on Eye Movement Desensitization and Reprocessing (EMDR) therapy. Dr. Paulsen is one of the worlds most renown authorities on EMDR. We will discuss EMDR and some other interventions on the future post.
To all my colleagues, ASD-parents, and most importantly people living with ASD: I hope this weeks interview and these articles serve as a tool to help with awareness and are taken with the respect I have for each of you.
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