Bright & Quirky Child Summit 2021: Tame The Overwhelm was a 5-day free online summit which aimed to help twice exceptional (2e) children - gifted children with ADHD, autism, learning differences like dyslexia, anxiety and/or depression. The conference featured 28 educators and psychologists who shared science-informed actionable strategies that promote social, emotional, and academic thriving even in tough times. The summit was hosted by Debbie Steinberg Kuntz, a licensed marriage and family therapist as well as the Founder of Bright & Quirky. Day 4 focused on neurodiversity and autism.
An Insider's Guide to Understanding PDA (Pathological Demand Avoidance) - Kristy Forbes, Autistic, ADHD, PDA. BA Political Science, Grad Dip Education
Kristy Forbes, GradDipEd is an autism and neurodiversity support specialist who is passionate about radical acceptance of autism and social change. She is an autistic, ADHD and PDA mother of four autistic children, married to an autistic man and consults with families, professionals and organizations both nationally and internationally to support them in understanding and supporting neurodivergent people. Kristy is also passionate about supporting educators to provide enriching learning and living environments from her lived experience and background as an educator (P-12) and a childhood behavioral and family specialist.
Pathological demand avoidance (PDA) is a young concept in research, with the first article published in 2003. The current research implies that PDA is exclusive to autistic people. PDAers are more resistant than most people to suggestions and tasks. For example, if someone asks them to please shut the door, they say no, and might seemingly give excuses, such as pretending that they are a cat to justify they will not shut the door. PDAers may also appear to be disrespectful and impolite. For example, they might impulsively blurt things out, stick their tongue out, or flip the bird. People often have a limited understanding of this label, viewing it as a pathology or predominantly negative behaviour, and seeing a PDAer as a willfully insubordinate child who refuses to do what they are told to do. However, in actual fact, it is their neurobiology that does not allow them to make choices. Their biological reflex makes them unable to do anything that someone has explicitly told them to do. They have a hypersensitive neuroception which makes requests feel threatening and escalates their anxiety, such that their brain’s natural survival response is to be in fight, flight, freeze, or fawn mode.
(Fawning is an adaptive coping strategy that involves people pleasing, and is seen in PDAers as well as people who have experienced significant trauma. It is sometimes confused with masking. However, fawning is actually a way to subtly regain control by forming an alliance with a perceived threat to avoid being targeted, somewhat like charming the snake. For instance, most young children would be afraid of their new authoritarian-like teacher on the first day of school, but a PDAer might try to befriend and get on the teacher’s good side.)
Demands for PDAers can come in 3 forms. The first is direct instructions, such as, “Can you please shut the door? Can you please clean your room?” The second is future expectations. For example, once the PDAer catches onto the expectation of bedtime at 8.30pm, the brain’s neurobiological response is to be unable to sleep if it is night time, even if the child is exhausted and wants to sleep. The third is a person's energy. For example, if someone is going to visit the PDAer but asks a lot of questions, the PDAer will stay in his room and not come out.
Adults should pay attention to the language used to deliver instructions to PDAers. When asking the child to do something, adults should subtract the word ‘you’ and try to put the child in the position of leadership. For instance, instead of telling a 6-year-old PDAer, ‘Can you please put away your socks?’, it would be more effective to say, ‘I wonder when those socks are going to find their home.’ This allows the adult to bypass the conscious part of the child and instead communicate cues of safety to the child’s brain, so the child’s brain responds positively and enables the child to participate. It takes forethought to repackage instructions in this manner, but it get easier with practice.
It is important for adults to discern the difference between children who will not do particular things because they are showing attitude, and children who are unable to do particular things. They might look the same, saying, ‘No, I won’t do xxx.’ However, PDAers do not yet have the self-awareness and language to explain, ‘I don't know why, but I can't do this thing in this moment. I know this seems simple, I know you want me to do this, but my brain won’t let me. Can you ask me a different way, or can we revisit this later?’
It can be helpful to surround autistic children with autistic mentors and peers, so that they are better equipped with the tools to understand autistic culture and have the language to communicate their experience. Kristy recommended several communities with mentorship for children with a focus on positive autistic identity. For Australia, she recommended the I Can Network directed by Chris Varney and Yellow Ladybugs for autistic girls. For the UK, she recommended Autistic Inclusive Meets social group.
It can also be helpful to provide a learning environment that is aligned with children's neurotype. The education system is standardised, making children sit down and accept a given curriculum in terms of what, when, and how they learn. Yet, children do not have standardised brains. PDAers have strengths and are natural born leaders who are wired for autonomy and freedom. They are autodidactic, self-led, and self-directed in their learning. They are also able to hold real and authentic conversations. Hence, PDAers need more stimulation and opportunities to explore their learning style. More generally, autistic children like to analyse, process, and reassemble things in their own unique ways to understand information. They thrive with people who are ready to collaborate, facilitate, and guide them by meeting them where they are at and providing more information. Hence, instead of readily accepting things superficially, they usually ask adults for more information to understand their thought process. Such questions should not be interpreted as attempts to challenge authority. It is important for adults to share their reasoning behind rules and requests, respectfully explaining why they are asking the children to do certain things.
Although autism is a disability, Kristy does not view it through the medical model of disability, a dismissive attitude in which the responsibility is placed on the disabled person. It is akin to telling a wheelchair user to figure out how to get the wheels to make their way up the stairs. Instead, she views it through the social model of disability, which argues that a person's disability is influenced by how well understood, accommodated, and supported they are. Currently, autistic children are limited by a society that does not understand neurodivergence or recognise their strengths. Parents of autistic children also face a large amount of pressure to conform to a society that may be well-intentioned but is not well-informed. Society should be educated to understand neurodivergent people and their behaviour, as well as create a space of radical acceptance.
All blogposts on Bright & Quirky Child Summit 2021:
Day 1 Talk 4 A Quick, Shareable Overview of Twice Exceptional (2e) Kids - Dan Peters, PhD
Day 2 Talk 8 Understanding High IQ Kids With ADHD and Co-Occurring Diagnoses - Thomas E. Brown, PhD
Day 3 Talk 13 How to Know When It's Time to Change Schools or Homeschool - Colleen Kessler, MEd
Day 4 Talk 17 How to Help Bright Kids Avoid Autistic Burnout - Kieran Rose
Day 4 Talk 19 How Different Kinds of Minds Can Become Inventors and Engineers - Temple Grandin, PhD
Watch this space for more blogposts from the Bright & Quirky Child Summit 2021!