Melanie is a bright, 9-year-old autistic child. Her mother tells you Melanie has “pathological demand avoidance.” Melanie’s teachers report daily incidents of upset where Melanie is reprimanded for “oppositional behavior.” Melanie won’t talk about her refusal to comply with instructions, frustrating her mother. The pediatrician has prescribed methylphenidate, guanfacine, and sertraline with no benefit. 

Demand avoidance is not included in the diagnostic criteria for autism in the DSM-5; however, this is frequently the chief complaint from caregivers of autistic patients. Caregivers often describe them as prone to “meltdowns” or having a “short fuse.”

Dysregulation associated with demand avoidance can result in self-injury, aggression toward others, property damage, disciplinary action, and even legal trouble. Caregivers often feel frustrated, anxious, and helpless dealing with behaviors that seem reactive and controlling. 

When dysregulation interferes with functioning, clinicians often feel pressed to medicate. However, medications rarely address the underlying reasons for the upset and can have significant side effects. So, what’s the best way to address dysregulation in autism? And what exactly is pathological demand avoidance, or PDA? 

Defining dysregulation in autism

Dysregulation is a broad term for a cluster of emotional and behavioral symptoms resulting from difficulty regulating oneself in multiple domains: 

• Sensory-motor: Autistic people frequently have hyper-, hypo-, and mixed sensitivity to sensory stimuli (eg, noise, touch) and motor control issues, both of which can result in frustration and upset.
• Communication: Autistic people often have difficulty reading nonverbal signals from other people, comprehending verbal communication, and expressing themselves both verbally and nonverbally. Any of these difficulties can result in misunderstandings and subsequent dysregulation.
• Emotional: Autistic children and teens are often depressed or anxious. Depression leads to a lower threshold for dysregulation in all kids and teens, and more so with autistic youth (Mazefsky CA et al, J Am Acad Child Adolesc Psychiatry 2013;52(7):679–688). Irritability is part of the overall picture of dysregulation, but not the full picture. For example, caregivers frequently report that their autistic children exhibit dysregulation when asked to complete minor tasks like brushing their teeth. This can present as repeatedly procrastinating (agreeing to brush their teeth in 10 minutes, then 10 more minutes, etc), and if the caregiver insists the task be completed immediately, this can trigger screaming, crying, and what is perceived as an overall disproportionate response. 

(Source: Mazefsky CA et al, J Autism Dev ­Disord 2018;48(11):3736–3746)

Pathological demand avoidance

In the 1980s, child psychiatrist Elizabeth Newson formulated the concept of PDA while working with autistic children. She defined it as a disorder that can ­co-occur with autism and that presents with labile mood and “socially manipulative” avoidance of “ordinary demands” (Newson E, Arch Dis Child 2003;88(7):595–600). Newsom might have described the aforementioned struggle over dental hygiene practices as the child using “social manipulation” to avoid the “ordinary demand” of brushing their teeth. The more modern definition from the PDA Society of the UK describes PDA as a phenomenon in which the patient:

• Exhibits intense or even obsessive resistance to requests or demands
• Engages in avoidant behaviors like distraction or making excuses
• Becomes dysregulated when pressured to comply 

(Source: O’Nions E et al, Adv Neurodev Disord 2021;5(3):269–281)

Deviations from routine

The need for consistency and sameness are hallmarks of autistic symptomatology and may reflect efforts to manage the stress of living in a world which is often overwhelming. Disruptions to a regulating routine and structure can be distressing. Demands can feel intolerable if they involve deviation from routines or if they interrupt pleasurable ongoing activities with even routine chores. Social communication deficits then make it hard to express distress and problem solve, which leads to the appearance of dysregulation with no clear trigger.

Melanie’s teacher reports that Melanie began refusing schoolwork during timed math worksheets. The teacher tried giving Melanie extra free time to reward her for complying with the math task. When this had no effect, she tried taking away recess as a punishment. The problem worsened, after which the pediatrician tried medications. 

Compliance vs collaboration

Adult responses to these meltdowns can range from the sharper commands of a frustrated adult to an opposite response in which the defeated adult carefully avoids actions that might trigger more outbursts. Either response can exacerbate the problem. Reward-based or punishment-based systems tend to make the child depend more on external direction rather than developing internal self-control, and avoidance of triggers can lead the child to become even more sensitive and exacting in their requirements to stay calm (Kohn A. Punished by Rewards: The Trouble with Gold Stars, Incentive Plans, A’s, Praise, and Other Bribes. 25th anniversary ed. Boston, MA: Mariner Books; 2018). Kohn adds that treatment teams frequently develop reward-based or punishment-based compliance plans; however, this approach does not help children develop their own problem-solving skills and impedes the larger goal of helping them to grow up into assertive adults who can advocate for themselves. 

Assessing dysregulation

While outbursts may appear to “come out of nowhere,” it is usually possible to sort out the reasons for upset. Sift through the possibilities with caregivers, teachers, and the autistic person themselves if they can respond. Ask about their thoughts and experiences across all relevant domains. For example questions, see the “Assessing Dysregulation: Tips for Identifying Stressors” table.

Ask caregivers about social determinants that create distress for autistic people, including:

• Physical environment (eg, “Is the classroom too warm or too cold for the child?”)
• Cultural issues (eg, “How does the family feel about the child’s diagnosis?”)
• Financial issues (eg, “Are you able to meet the family’s needs?”)
• Logistical barriers (eg, “Is the school team available to talk with?”) 

Melanie presents as a pleasant girl in “Addams Family” themed attire who recites dialog from the TV show. She tells you she wants more friends and then becomes withdrawn when you gently ask about school. Melanie’s parents report that she responds best when they wait for a natural pause in whatever she is doing and give her several extra seconds to respond. 

Meaningful goals

Once you understand the reasons for dysregulation and address what you can (eg, accommodations for delayed language processing), you need to help the team balance their expectations with increased support for the autistic child or teen. This will involve: 

• Educating parents and teachers about the child’s individual strengths and challenges
• Facilitating communication between the child, parents, and teachers
• Designing complementary goals in an Individual Educational Plan or accommodations in a 504 plan that support peer friendships in an academic learning context, or support assertiveness and self-advocacy

Include the child or teen to empower them and help parents and teachers understand their perspective. This allows for more precise and effective interventions. For children or teens who have limited capacity to express their concerns, the team can use developmental, relationship-based approaches to strengthen social communication (Sandbank M et al, Psychol Bull 2020;146(1):1–29). 

The teacher pivots to hands-on math activities among table groups with semi-structured roles that give Melanie time to respond and clearer expectations. Melanie participates happily and tells her parents about her growing friendships with other kids who enjoy horror themes. 

The role of medication

Medication treatment should be considered after nonpharmacologic approaches have been tried for specific co-occurring conditions such as depression, anxiety, and ADHD. In severe cases, antipsychotic medication may be used for limited periods (see CCPROct/Nov/Dec 2023 and our algorithm for autism irritability in Feder J et al. Child Medication Fact Book for Psychiatric Practice. 2nd ed. Newburyport, MA: Carlat Publishing; 2023).

Carlat Verdict

Traditional approaches using reward, punishment, and medication may aggravate demand avoidance. Assess for underlying problems, then empower the patient to join in designing stratagems for collaborative learning and daily function.