Abstract
In this issue, I have described the pattern of behaviors termed pathological demand avoidance (PDA), extreme demand avoidance or persistent drive for autonomy. PDA has been better known in the United Kingdom, but social media has spread awareness of the condition to the United States. The PDA Society in England was established in 1997. In the United States, PDA North America was founded in 2020, and PDA Parents was founded in 2021. Even though PDA is not an official diagnosis, particularly in the United States, there are growing efforts by parents to increase awareness of the condition and to seek diagnosis. Speech-language pathologists (SLPs) and educators are highly likely to have encountered some children who they feel fit the description of children with PDA. Although there is not a standard, official protocol for assessing PDA, there are some tools that can be useful in determining if a child may be exhibiting behaviors of PDA, and there are materials with management suggestions available through the PDA Society, which has the best collection of resources on PDA.
The PDA Society’s website is the most comprehensive of websites on PDA. On the PDA Society’s website page: https://www.pdasociety.org.uk/about-pda/what-is-demand-avoidance/, you can watch a video that will give you a better understanding of PDA. The video can also be viewed on YouTube (https://www.youtube.com/watch?v=CCsfKxyuH1I). The voices of many of the children and adults narrating the video have PDA. On the website page (https://www.pdasociety.org.uk/i-am-a-professional/resources/information-for-education-professionals/) you can listen to a podcast by a 15-year-old boy with PDA discussing his experience of school and the daily challenges around demands, masking, sensory difficulties, school avoidance, friendships, and transitions. He also offers some possible solutions and tips for teachers, and shares some coping strategies that have helped him along the way. There are links to several podcasts in which presenters discuss teaching strategies and ways to support students with PDA. There is also a link to the Twinkl website where for free you can download five resources into the theory and practices intended to offer educators helpful classroom support approaches (the Twinkl site typically charges for its materials). You can also find these resources by going directly to this Twinkl address: https://www.twinkl.com/resource/pda-panda-approach-overview-t-s-1677847655. These five resources are called PANDA approaches:
P—Pick Battles
A—Anxiety Management
N—Negotiation and Collaboration
D—Disguise and Manage Demands (the resource on this page)
A—Adaptation
The word PANDA is also intended to be a symbolic term for PDA. Like wild pandas, PDA people are often sensitive to their environments and can need support to thrive. By using the PANDA approaches, parents and educators can help PDA children thrive at home or in school.
SLPs are not expected to evaluate children for PDA, but it is quite likely that they have had experiences with children who exhibit PDA. Being aware of how PDA is manifested and evaluated can be useful to their understanding of such children, and it is valuable information that can be shared with school evaluation teams.
There is no assessment protocol specific for diagnosing PDA. The Extreme Demand Avoidance Questionnaire (EDA-Q) rating scale was developed by O’Nions et al. (2014) to measure parent-reported behaviors of extreme demand avoidance/PDA in ASD populations of children and adolescents ages 5–17 years. The original EDA-Q had 26 items. A revision of the scale in 2021 (O’Nions et al., 2021) has eight items:
Obsessively resists and avoids ordinary demands and requests.
Is driven by the need to be in charge.
Tells other children how they should behave but does not feel these rules apply to him/herself.
Has difficulty complying with demands unless they are carefully presented.
Seems unaware of the differences between him/herself and authority figures (e.g., parents, teachers, police).
Mood changes very rapidly (e.g., switches from affectionate to angry in an instant).
Uses an outrageous or shocking behavior to get out of doing something.
Has bouts of extreme emotional responses to small events (e.g., crying/giggling, becoming furious).
All items are scored on a 0–3 scale: not true = 0; somewhat true = 1, mostly true = 2, very true = 3. This questionnaire is intended to measure these traits consistently for research purposes; however, it is not considered a diagnostic test. The items retained in the 2021 version were found to cover the features consistently described in accounts of PDA. In some cases with high EDA-Q scores, the marked demand avoidance can be better explained by other underlying reasons and not a PDA profile. Similarly, a lower score does not preclude PDA from being a factor, especially if the behavior is more subtle, for example when a child shuts down rather than exhibiting aggressive behaviors. The EDA-Q, however, can be useful to gather qualitative information about a child’s behavior even if not formally scored. It can also be used to consider differences in perspectives between family members or between school staff and parents. The questionnaire can be accessed at: https://embrace-autism.com/eda-8/ or https://www.pdasociety.org.uk/resources/extreme-demand-avoidance-8-item-measure-eda-8/. Egan et al. (2019) developed a 26-item self-evaluation version for adults (EDA-QA) which is available at https://embrace-autism.com/eda-qa.
PDA is associated with intolerance of uncertainty and anxiety. Results of a study conducted by Stuart et al. (2020) indicated that PDA can be conceptualized in part as an attempt to increase certainty and predictability to alleviate anxiety. They used a 12-item version of the original Intolerance of Uncertainty Scale: Parent Report (IUS) (Comer et al., 2009). A variety of 12-item Intolerance of Uncertainly Scales are available for both parent report and self-report. Many of the items on the scales include parent report items and matching child self-report items such as (Osmanağaoğlu et al., 2021):
Unforeseen events upset my child greatly./Surprise events upset me greatly.
My child believes that one should always look ahead so as to avoid surprises./One should always think ahead to avoid surprises.
It frustrates my child to not to have all the information he or she needs in a situation./It frustrates me not to have all of the information I need.
Uncertainty keeps my child from living a full life./Not knowing what could happen keeps me from enjoying life.
My child believes that a small-unforeseen event can spoil everything, even with the best planning./Plans can be ruined by things you did not think would happen.
When it is time to act, uncertainty paralyzes my child./When it is time to do things, not knowing what could happen keeps me from acting.
When my child is uncertain he or she can’t go forward./When I am not sure of something, I can’t work very well.
My child always wants to know what the future has in store or him or her./I always want to know what will happen to me in the future.
My child can’t stand being taken by surprise./I don’t like being taken by surprise.
The smallest doubt can stop my child from acting./The smallest doubt can stop me from doing things.
My child feels as though he or she should be able to organize everything in advance./I should be able to prepare for everything in advance.
My child tries to get away from all uncertain situations./I must get away from all situations where I don’t know what will happen.
Items are measured on a 5-point Likert-type scale (1 = Not at all characteristic of my child/me, 3 = Somewhat characteristic of my child/me, 5 = Entirely characteristic of my child/me). PDA is associated with anxiety, yet the Stuart et al. (2020) study is one of the few to measure anxiety in parent-identified children with PDA. They used the Revised Children’s Anxiety and Depression Scale (Chorpita et al., 2000) a parent-report measure of child anxiety that can be viewed/downloaded at: https://novopsych.com.au/wp-content/uploads/2023/02/rcads-parent_template.pdf. A child self-report version is at: https://novopsych.com.au/wp-contentuploads/2023/ 02/rcads-child_template.pdf. Similar assessments to measure child anxiety are the Child Anxiety Impact Scale (Walkup et al., 2008) and the Multidimensional Anxiety Scale for Children (March & Parker, 2004), both of which are also parent and child report forms. These two scales can be viewed/downloaded at: https://www.scribd.com/document/632819143/Anxiety-Scale-Packet. All three scales are rated on 4-point scales. SLPs do not assess anxiety, but they should be alert to behaviors that may signal a child is anxious; confer with a social worker, counselor, or psychologist about their observations; and have some idea of how a child’s anxiety might influence their participation in therapy.
Comments
SLPs are not charged with evaluating children with possible PDA/EDA, but they are highly likely to find these children on their caseloads. By being aware of the behavioral characteristics of PDA and possible reasons why a child may refuse most requests, however, they are in a better position to adjust their interventions to individual needs and create strategies to reduce pressure and support emotional well-being. They can also advocate for comprehensive assessments for these children.