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.
Practical Steps to Design a Bright, Autistic, Good-Fit Life - Amy Coggeshall Laurent, PhD, OTR/L & Jacquelyn H. Fede, PhD
Amy Laurent, PhD, OTR/L specializes in supporting autistic individuals. Her work often focuses on creating learning environments designed to facilitate children’s active engagement at home, in schools, and throughout their communities. She is a co-author of the SCERTS model and frequently lectures around the globe. She is passionate about neurodiversity and helping others to honor and understand the implications of "different ways of being" in relation to navigating the physical and social world. Amy strives to practice what she preaches and uses her love of play, dance, and movement to meet her own regulatory needs.
Jacquelyn Fede, PhD is an Assistant Research Professor at the University of Rhode Island. She is a super fun, Autistic Self-Advocate, developmental psychologist, and program evaluator. Her research interests include immigration policy, autism, and community engagement. She uses her experience to help educate others about autism through lecturing, blogging, and consulting on evaluation projects. A full scholarship Division 1 athlete in college, Dr. Fede continues to meet her sensory needs by seeking extreme physical activity. She also enjoys the use of creativity and art for expression.
The 2 friends got to know each other during Graduate School, when Dr. Fede was assisting Dr. Laurent in doing research on children’s development of regulation skills. After Dr. Fede started her first full time job, it was such a poor match for her profile that she hit the lowest point of her life. Although the job itself was easy in terms of technical skills, the office environment and social interactions took a mental toll on her. After getting home from work, she would have meltdowns such as smashing furniture or retreating to dark quiet rooms for hours. She did not understand what was going on because she did not have any kind of diagnosis at that time, and wondered if she had depression or anxiety. She realised that she was not suicidal, but could not figure out how to function in this world and do things that seemed to come naturally to most people, such as attending meetings. Confused, she withdrew from everybody, including her close friend Dr. Laurent. Several months later, as a request for help, she texted Dr. Laurent a picture of her bedroom door that she had kicked a hole through.
Recognising that Dr. Fede needed help, Dr. Laurent assisted her in going on a journey of discovering her sensory, social, and executive function challenges, including talking to her mother about what her childhood was like. This led Dr. Laurent to suspect that Dr. Fede was an autistic who was good at masking, which was later confirmed in a formal autism diagnosis. With her new diagnosis, she developed an understanding that she was not broken but simply wired differently, with specific needs for her mental health.
Throughout Dr. Fede’s childhood, although there were some bumps, she was lucky to have goodness-of-fit between her personal profile and environment, as well as natural supports in place. For example, she had her mother as a close trusted partner, strict routines with her grandmother, as well as soccer activities which not only addressed her sensory needs but also gave her excuses to avoid social events. However, it also meant that she had no understanding of how necessary those supports were for her mental health, or what those supports were so she could put them in place for herself.
Together with Dr. Laurent, they explored what modifications she could make to the person, activity, and environment. They also used their experience to create functional tools and resources to facilitate other neurodiverse people. In particular, as Dr. Laurent is neurotypical, Dr. Fede contributes her lived experiences and personal stories in the partnership Autism Level UP! The ‘levelling up’ that they speak of does not just involve equipping neurodivergent individuals themselves with strategies, but also increasing awareness among the neurotypical community around them.
Dr. Laurent and Dr. Fede highlighted that the predominant paradigm has an underlying assumption that therapists know best, and that neurodiverent children need to be trained to behave in a neurotypical way. Instead of having preconceived notions of what therapeutic goals should be and trying to change the autistic individual to make them more neurotypical, therapists should seek to truly understand an autistic individual in terms of what makes them tick and what is important to them, and then provide support in a way that honours who they fundamentally are. For example, given that Dr. Fede had low social motivation, wanted movement, and easily experienced sensory overload, it would have been a living hell if she had a childhood IEP goal requiring her to sit in the cafeteria and talk to peers. It would also have sent the message that the autistic individual is broken as his natural behaviour is wrong. The more therapists and parents create goals layering on things that that are not true or authentic to the autistic individual, the more they have to mask, which is cognitively draining and taxing on their mental health.
Dr. Laurent and Dr. Fede published an article titled ‘To Tell Or Not To Tell: Why It Shouldn't Be A Question’. They argue that it is important to disclose an autism diagnosis to a child, so that they understand who they are and what they need, and can advocate for themselves, instead of going through life thinking that they are a broken neurotypical. For example, Dr. Fede has a profile of being extremely sensitive to smells and sounds, which can be a strength in that she can appreciate smells and sounds that other people pay no attention to. However, it became a risk factor in a stinky and noisy cafeteria during her schooling days. Luckily, with the encouragement of her mother, a professor of exercise science, she would walk laps along the school hallways during recess, such that the movement became a protective factor. Unfortunately, her need for movement was never made explicit, which caused her to become dysregulated when she stopped having movement at her office environment in adulthood.
Dr. Laurent and Dr. Fede also published a 5-part Energy Regulation Suite.
The Energy Regulation Suite is driven by a focus on understanding an individual’s social and sensory profile – which in itself is neither good nor bad – and then considering how the profile align with the demands of the activity and environment. The Person In Context equation describes how anything that we navigate in a day is the person + activity + environment. Although the person needs to level up their skills and abilities, the individual is only a third of the equation. The activity and environment also need to change in order to accommodate the individual and achieve a goodness-of-fit. For example, while giving this interview, Dr. Fede adopted a personal strategy of standing on her feet rather than sitting down. However, she also modified the activity and environment by requesting to have the interview at an earlier timing than Debbie originally proposed, so that Dr. Fede would have time for a break before her next meeting. Far from ‘babying’ the autistic individual, we are actually preparing them for the real world in which they have to advocate for themselves and meet their needs, which is more sustainable than having a reward chart or token board. We want to presume competence, but we also want to presume competence is dependent on support.
We strive to have a useful reality, which is a process in which an autistic individual learns how to learn; building an understanding of their profile that can be shared with others, and putting in place a plan that capitalises on their strengths while also supporting areas of challenge. They can then apply this in the home or school environment, and even beyond such as when they start working or joining the community. For instance, Dr. Fede is now able to explain to her coworkers that because she is autistic, socialisation affects her energy and makes her unproductive. Her coworkers now modify their meeting agendas such that chatting occurs at the end of meetings, and she is allowed to leave to work on her tasks instead of staying for the socialisation part. Otherwise, if an autistic individual and the people around them do not understand their profile and support needs, they may try to hold it in throughout the day, and then have a meltdown when they get home at the end of the day.
Ideally, autistic individuals should contribute to the process of building their profile, because filling in the questionnaire helps them to reflect on themselves. For young children, parents and school teachers can work as a team based on careful observation and discussion of how they behave at home and in the classroom. Mistakes are inevitable as neurotypicals do not share the same experiences as neurodivergent individuals. Nonetheless, parents and school teachers should adopt a perspective of truly wanting to know what the autistic individual’s profile and experience is like. Parents and school teachers should also try completing the questionnaire themselves before applying it to others, so that they have a better awareness of what working through the exercise is like, especially if they plan to apply the questionnaire to a nonspeaking individual. It is best to start building an autistic individual’s profile early, so that they can build trust with the people around them, as well as familiarise themselves with the language and skills necessary for self-advocacy.
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!