Episode 214: AFAB Autism Assessment: PDA, and other Common Questions Answered with Dr. Jessica Myszak - Patricia Young

AFAB Autism Assessment: PDA, and other Common Questions Answered

Dr. Jessica Myszak, who provides autism assessments for late-diagnosed, high masking women answers the following questions: What is PDA (Pathological Demand Avoidance or Persistent/Pervasive Drive for Autonomy)? What does PDA look like? What is important to ask if someone wants to pursue a formal autism diagnosis? What are common comorbidities (as well as misdiagnoses) if one is autistic? Is it possible to manipulate or cheat an autism assessment or fool the assessor? What happens after one is diagnosed as autistic?

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Dr. Jessica Myszak, Licensed Psychologist

HIGHLIGHTS

What is PDA (Pathological Demand Avoidance or Pervasive/Persistent Drive for Autonomy?

PDA stands for Pathological Demand Avoidance, a subtype of autism that involves significant anxiety and demand avoidance.
Many people with PDA prefer to call it Persistent or Pervasive Drive for Autonomy.
PDA is a newly identified subtype of autism that can result in meltdowns or explicit behavior or just avoidance of everyday tasks.
People with PDA often have a desire to have control in order to preserve their autonomy.
PDA can be challenging to diagnose, and many people with PDA struggle to get a diagnosis.
Strategies for managing PDA symptoms include recognizing triggers, reducing demands, and providing choices.
People with PDA often work best in jobs where they have minimal oversight or control over their work.
PDA is not a personal choice or behavior but rather a way that the brain works. It’s a nervous system disorder/disability.
Understanding PDA can help people with the condition and their loved ones cope with the challenges it presents.
PDA is a complex condition that requires individualized treatment and support.

What does PDA looks like?

Everyday tasks can often result in meltdowns or explicit behavior or just avoidance of these types of demands in a variety of ways.
PDA can be misdiagnosed as oppositional defiant disorder because people don’t know what autism looks like.
PDA is often characterized by a need for things to be in a certain order for a sense of stability.
Children with PDA may have meltdowns, and PDA is often misdiagnosed as oppositional defiant disorder.
Adults with PDA may struggle with social interactions, have difficulty with authority figures, and may have trouble with employment.
PDA can present differently in different people, and there is no one-size-fits-all description of what it looks like.
People with PDA may have a unique set of triggers and coping mechanisms that are specific to their individual experience.
Understanding what PDA looks like can help people with the condition and their loved ones cope with the challenges it presents.
Having another human to co-regulate with, can be instrumental for someone who is PDA.

What is important to ask if someone wants to pursue a formal autism diagnosis?

It’s important to find a qualified professional who has experience diagnosing autism in high masking, late diagnosed adults.
Ask how many AFAB (if relevant) the person has assessed. How do they assess for high masking and internalizing behaviors.
Ask about the diagnostic process and what it entails, including any assessments or evaluations that will be used.
Ask about the criteria for an autism diagnosis and what the professional will be looking for during the assessment.
Inquire about the professional’s experience working with adults or children with autism, depending on the age of the person seeking a diagnosis.
Ask about the cost of the assessment and whether insurance will cover it.
Inquire about any additional support or resources that the professional can provide after the diagnosis, such as referrals to therapists or support groups.
Ask about the timeline for the assessment and when the results will be available.
Inquire about any additional information or documentation that may be needed for the assessment, such as medical records or school reports.
Ask about any potential barriers to getting a diagnosis, such as the need for a parent interview or other assessments that may be required.
Inquire about the professional’s approach to diagnosing autism and whether they take a person-centered approach that considers the individual’s unique experiences and needs.

Is it possible to manipulate the results of the autism assessments or fool the assessor?

Dr. Myzak acknowledges that people with autism are often very good at masking their symptoms and may be able to manipulate an assessment to some extent. – However, she notes that many assessments have embedded validity measures that can help detect when someone is being overly negative or positive in their responses.
Dr. Myzak emphasizes the importance of being authentic and honest during the assessment process, as this is the best way to get an accurate diagnosis and receive appropriate support.
She also suggests that people who are concerned about being able to remember early signs of autism can do their own detective work by asking family members or friends for information.
Dr. Myzak believes that it is important to trust her clients and take a person-centered approach to diagnosis, rather than relying solely on standardized assessments.

Common comorbidities if one is autistic:

Anxiety disorders, such as generalized anxiety disorder, social anxiety disorder, and obsessive-compulsive disorder (OCD), are common comorbidities of autism.
Attention-deficit/hyperactivity disorder (ADHD) is also frequently seen in individuals with autism.
Depression and other mood disorders are more prevalent in people with autism than in the general population.
Sensory processing disorder (SPD) is a common comorbidity of autism, as many people with autism have difficulty processing sensory information.
Sleep disorders, such as insomnia and sleep apnea, are more common in individuals with autism than in the general population.
Gastrointestinal (GI) problems, such as constipation, diarrhea, and gastroesophageal reflux disease (GERD), are more common in people with autism.
Epilepsy and other seizure disorders are more prevalent in individuals with autism than in the general population.
Tourette syndrome and other tic disorders are more common in people with autism.
Intellectual disability is a common comorbidity of autism, although not all individuals with autism have intellectual disability.
Other conditions that may co-occur with autism include allergies, asthma, and autoimmune disorders.

What happens after an autism diagnosis?

After an autism diagnosis, individuals and their families may work with healthcare providers to develop a treatment plan that addresses their specific needs and challenges.
Treatment for autism may include a combination of therapies, such as behavioral therapy, speech therapy, occupational therapy, and social skills training.
Medications may also be prescribed to help manage symptoms of autism, such as anxiety, depression, or hyperactivity.
Individuals with autism may also benefit from support groups, educational programs, and other resources that can help them and their families better understand the condition and navigate daily life.
It is important for individuals with autism to receive ongoing support and care, as their needs may change over time and new challenges may arise.
Some individuals with autism may also be eligible for special education services or accommodations in school or the workplace.
Families may also need to navigate insurance coverage and other financial considerations related to autism treatment and support.
Ultimately, the goal of post-diagnosis care is to help individuals with autism lead fulfilling and meaningful lives, with the support and resources they need to thrive.

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Dr. Jessica Myszak is a Chicago-area psychologist who specializes in autism assessment for both children and adults. Doing both in-person and telehealth evaluations in many states across the US, she has developed a niche in less-typical presentations of autism–autism in women, high-masking adults, and pathological demand avoidance (PDA). She also provides educational content on Tiktok about these topics. She is also the founder of the Autistic Support Network, a free private online community for members to share information and connect with other autistic adults.

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