Dr. Donna Henderson, a seasoned clinical neuropsychologist and co-author of a pivotal autism guide, shares her insights on the evolving assessment of autism. She discusses the shift from rigid testing to understanding individual experiences and the crucial role of therapist empowerment in diagnosis. The conversation dives deep into masking, highlighting its complexities and the quest for balance in supporting neurodiverse individuals. Henderson also unpacks the nuances of Pathological Demand Avoidance (PDA), advocating for a clearer understanding to improve support and reduce stigma.
The evolving assessment process for autism emphasizes understanding subjective experiences over traditional test scores to better capture individual needs.
Pathological Demand Avoidance (PDA) highlights the critical importance of recognizing intense autonomy needs, distinguishing it from other forms of demand avoidance in diagnosis.
Deep dives
Understanding Pathological Demand Avoidance (PDA)
Pathological Demand Avoidance (PDA) is characterized by an intense need for autonomy, which distinguishes it from other forms of demand avoidance. Individuals with PDA may resist demands not merely due to the nature of the request but because they perceive it as a loss of control. This resistance can manifest itself even in enjoyable tasks if they feel pressured to comply. The importance of recognizing PDA lies in accurately diagnosing individuals who might otherwise be mislabelled, such as with Oppositional Defiant Disorder, which can have severe consequences on their treatment and support.
Shifting Focus in Autism Assessment
The assessment process for autism is evolving from a reliance on standardized tests to a more nuanced understanding of an individual's experiences and narratives. Historically, many assessments focused on observable behaviors and scores, which left behind individuals who camouflage their autism due to high support needs. Clinicians are increasingly adopting interview-based approaches that prioritize understanding person's subjective experiences. This shift aims to create a more inclusive and accurate assessment process, especially for those who might not fit traditional diagnostic criteria.
The Impact of Camouflaging in Autistic Individuals
Camouflaging is a common coping mechanism for autistic individuals, allowing them to navigate social situations in a way that aligns with societal expectations. This behavior, however, can cause significant emotional distress and may lead to misunderstandings with non-autistic peers, as seen in stories of individuals trying to maintain social norms at home and school. The pressure to conform often means that the autistic person has to modify their true self in social settings, which can be exhausting and lead to a sense of loss of identity. Understanding and addressing the nuances of camouflaging can help create safer environments for neurodivergent individuals where they feel accepted without the need to mask their authenticity.
The Role of Clinicians in Supporting Neurodivergent Individuals
Clinicians play a crucial role in guiding neurodivergent individuals and their families through the complexities of understanding and navigating autism. There is a growing recognition that therapy and assessment must include an acknowledgment of the unique strengths and challenges faced by these individuals. Encouraging clinicians to expand their knowledge through resources created by late-diagnosed autistics can foster empathy and better-informed practices. Through this awareness, clinicians can more effectively support their clients, advocate for equitable treatment, and contribute to a broader shift in societal understanding of neurodiversity.
Dr. Donna Henderson joins Emily Kircher-Morris to talk about the changes in the assessment process for autism, the importance of empowering therapists to diagnose autism, and the need for equity in masking. Their conversation also explores the double empathy problem and the challenges of balancing unmasking with the needs of neurodiverse individuals in educational settings. They also discuss the PDA profile and its place within the autism spectrum. That’s all waiting for you on episode 246. This is a reprise of an earlier chat.
Takeaways
The assessment process for autism is evolving, with a shift towards understanding subjective experience rather than relying solely on test scores.
Therapists are adapting by relying less on formal tests and more on interview skills and understanding inner subjective experiences.
Empowering therapists to diagnose autism is important for identifying and supporting individuals who may have been missed in the past.
Masking and camouflaging are complex behaviors that can have both benefits and drawbacks, and it is important to find a balance that respects individual needs and promotes equity. Pathological Demand Avoidance (PDA) is not simply about avoiding demands, but rather an overriding biological drive for autonomy.
Misdiagnosis and labeling are common for PDAers, leading to potential negative consequences, especially for minority boys.
Understanding the core features of PDA, such as difficulty coping with demands, a wide variety of coping mechanisms, and challenges with social hierarchy, is crucial for accurate diagnosis and support.
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Dr. Donna Henderson has been a clinical neuropsychologist for over 30 years. She is passionate about identifying and supporting autistic individuals, particularly those who camouflage, and she is co-author (with Drs. Sarah Wayland and Jamell White) of two books: Is This Autism? A Guide For Clinicians and Everyone Else and Is This Autism? A Companion Guide For Diagnosing. Dr. Henderson provides neuropsychological evaluations and consultations for children, adolescents, and adults who would like to understand themselves better. She is a sought-after lecturer on the less obvious presentations of autism, autistic girls and women, PDA, and on parenting children with complex profiles. She also provides case consultations and neurodiversity-affirmative training for other healthcare professionals.