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.
How to Help Bright Kids Avoid Autistic Burnout - Kieran Rose
Kieran Rose is an author with a background in special education, whose essays have been read by over a million people. He is also an international public speaker, trainer and consultant. Kieran is founder of The Autistic Cooperative, a network for autistic professionals; and is executive board member of Therapist Neurodiversity Collective, an educational organization for neurodiverse positive SLPs, OTs and PTs. As well as consulting on multiple research papers, Kieran is also co-producing his own research on autistic masking and victimization on neurodivergent people. Diagnosed autistic and situationally mute at 23, Kieran has a neurodivergent wife and three neurodivergent children.
After Kieran’s nephew received an autism diagnosis, he found that he could identify with autism checklist, and later received his own diagnosis from Simon Baron Cohen. When his first autistic son was born, he realized he would fail his son if he did not understand himself and how to face his challenges. Hence, he started reading up about autism but found that it did not speak for him. Instead, he learned more about himself by interacting with the autistic community. Tapping on his work background in special education, he started writing about autism and helping others reframe their views.
The medical community and society at large look at autism through a medical lens which frames autism as a deficit. They also tend to attribute all issues to the autism diagnosis. On the other hand, the autistic community looks at autism through the social model of disability, which argues that autistics are disabled by society. The autistic community also believes that autism is a culture, and that miscommunication is because of cultural barriers rather than inherent problems in autistic individuals. For example, neurotypical individuals tend to have dialogues where they jump back and forth between interlocutors. On the other hand, autistic individuals tend to engage in monologuing or infodumping, talking for a long period before stopping and allowing someone else to talk for a long period. This helps autistic individuals to have more time for processing information and getting out what they need to say.
The diagnostic criteria for autism is flawed in multiple ways which make it easier to miss autistic individuals than it is to identify them. A lot of gifted children are probably autistic. Firstly, the diagnostic criteria only has three small categories which not many people can fit into. Secondly, the diagnostic criteria looks for stress behaviors such as anxiety and trauma, so autistic individuals who are not particularly stressed may not be recognized. Thirdly, some autistic individuals may be masking.
Masking is projecting a version of yourself which is not actually you. All human beings mask to some extent. It is natural human behaviour to engage in context switching, acting a little differently when we move from one social environment to another. It is like wearing different hats such as a mum hat or work hat. However, when individuals are from a marginalized group, they have to moderate their behaviour to project an acceptable version of themselves and fit in. In the early 20th century, a black sociologist W. E. B. Du Bois talked about double consciousness; black people in society projected a version of themselves that white people felt were acceptable. Similar principles apply to autistic individuals, who suppress their stimming and change their way of communication in order to seem more neurotypical. Masking might not just be a social strategy but could also be a trauma response. Teachers usually comment that autistic children seem fine in school. This is because autistic children usually suppress themselves all day at school, and only erupt into meltdowns when they reach their safe space at home. Although this might be a survival strategy to protect themselves, it also negatively impacts their mental health. Besides not being their true selves, they may experience autistic burnout.
Most autistic individuals experience autistic burnout throughout their whole lives, due to the amount of pressure they face which builds up day after day. They have to navigate sensory environments, put up with constant invalidation, attempt to meet expectations for things that they cannot do, and mask as neurotypicals. It consumes a lot of energy and is mentally exhausting. Eventually, it may result in physical illnesses, autoimmune issues, and depression.
Unfortunately, although autistic burnout is one of the leading causes of deaths among autistic individuals, many doctors might not have heard about autistic burnout, and many autistic individuals might also be unaware of it. When uninformed doctors go through their mental health checklist, autistic individuals may agree because they lack the vocabulary to describe what is going on with themselves and the terms used for physical symptoms of depression seem like the closest thing. Therefore, many autistic individuals having autistic burnout may be mistakenly diagnosed as having depression and be given antidepressants. This can cause problems such as becoming addicted to antidepressants or blaming themselves when the antidepressants do not seem to be working.
During a period of autistic burnout, an autistic individual tends to exhibit stress behaviors as one’s needs are not fully being met. For example, an autistic adult might not speak as much as one used to, or an autistic child might stop having any language. Doctors often view this as regression, especially for autistic children, nonspeaking autistics, or intellectually disabled autistics. Through a medical lens, it is a problem that an autistic person has navigated the so-called developmental milestones but gone back a step. However, what is actually happening is that the brain is restricting what the person can do in order to reserve the person’s energy and protect the person. It is just like how most people function less well when they are exhausted or going through a traumatic period. Yet, it looks more dramatic in autistic individuals, because their starting energy levels are lower than most people since they have to work a lot harder to exist in a world that is not built for them.
Whereas autistic individuals tend to feel calm in natural environments such as woodlands, manmade environments contain a lot of extra unnatural sensory information that autistic individuals do not cope well with. Due to differences in neurology, the filters in their brains allow more sensory information to pass through. This results in slower sensory processing speed and sensory overwhelm which might lead to meltdowns.
Kieran has several suggestions on how to mitigate masking and autistic burnout.
‘The biggest thing of all you can do to prevent, or at least mitigate burnout, is to start identifying what you do when you mask and stop. Even just little things like eye contact, which so many of us do, or at least pretend to do.’
Although masking can be done subconsciously, it consumes a lot of brainpower to not be yourself. The more one can take control of one’s life, the less energy one has to use and the better it will be. The best way to take control is to understand oneself in terms of what one’s sensory needs and communication needs are. For example, Kieran knows that he is situationally mute. Thus, he carefully chooses who he allows into his social bubbles. If he has to meet new people, he ensures they meet at a place that is safe for him so he can control the environment. He also plans regular breaks for himself, avoiding scheduling anything after a major social event so that he can minimally communicate with the people that he needs to or even not talk if he does not want to.
Children have less control over their lives because the adults around them make decisions on their behalf. However, children are actually better off when they have more positive control and choice around what they can do and when they can do it. Parents and professionals often believe that autistic individuals need routines, and therefore enforce rigid routines for children. Yet, this can be problematic as what autistic individuals really need is control over their own routines.
‘Give yourself permission to duck out of situations you can’t cope with instead of pretending you can.’
Autistic people often end up in situations they do not want to be in because they struggle with maintaining boundaries. This is especially since autistic people’s reasons for saying no tends to look odd to neurotypical people, who may be privileged and not realize that autistic people have different needs. In a school setting, teachers may also try to exert control over children and dismiss their needs in order to prioritize lesson teaching. However, it is counterproductive if the students are overwhelmed, bored, or disengaged. There is a need to balance mental and physical health alongside education. If an autistic student needs to tap out and regulate, the teacher should provide a 5 minutes break. Better yet, the teacher should build in regular breaks throughout the school day for students to decompress.
‘A big sensory break every few days, or weeks, coupled with smaller sensory breaks throughout the day could make the world of difference to your life, or the life of your loved one.’
Autistic people are often overwhelmed by their external environment filled with manmade stimuli. For example, during the online conference recording with Debbie, Kieran was surrounded by visual stimuli including the room light and computer light, as well as auditory stimuli including the electricity buzzing, speakers output, and microphone feedback. Likewise, autistic children in school have to deal with the various stimuli, in particular the noise made by teachers and classmates in the classroom as well as along the corridor. As such, it is beneficial to have a sensory break in a quiet room with dim lights, focusing on something they are interested in to engage their monotropic brain. This allows the autistic person to regulate one’s sensory system, as well as regain control and recharge one’s batteries.
‘Allow yourself not to be sociable if you don’t want to be.’
Being social might look different for different people. Neurotypical people tend to like social events where there are large groups and noise. It is harder for autistic people to cope in such environments due to the overwhelming sensory input. Moreover, as the minority, autistic people are constantly worried about comprehending what others are thinking and doing, as well as feeling pressurized to mask or meet their expectations. Therefore, autistic people may prefer not to be sociable in the traditional sense, as it is challenging for them to exist in such spaces with neurotypical people.
However, parents tend to want to stretch their autistic children to be more sociable and have at least one or two friends. Children are often forced to interact with other classmates and are expected to pick friends out of those peers, even though they might think differently or have different interests. Kieran’s advice for parents is to allow autistic children to spend time with other neurodivergent individuals. Neurodivergent people are often naturally drawn to and comfortable around other neurodivergent people even without realizing it, due to similar ways of communication and common interests. As neurodivergent people are dispersed all over the world, one place they can gather is online, especially online gaming such as Minecraft as well as Dungeons and Dragons. Friends do not have to exist in the same physical space or be of the same age; children should get to pick and choose who they interact with.
Debbie gave the metaphor of each human having a social battery with a finite amount of energy that is either drained or recharged depending on how the socializing looks like. Kieran shared that although being in large groups of neurotypical people usually taxes his energy, being in large groups of autistic people recharges him. Even though autistic people are often seen as having deficits in communication, the truth is that this occurs when they are in the midst of non-autistic people, i.e. they have deficits in specifically non-autistic communication but not autistic communication. A non-autistic person would also face deficits in communication if he were put in the middle of a group of autistic people. Rather than one group being less than or having deficits compared to another group, it is more akin to a cultural clash between two groups that come from different places and struggle to meet each other where they are at. Normalcy is arbitrary.
Kieran has attended conferences in the UK which are run by autistic people for autistic people. Participants follow a traffic light system which allows them to control their environment and access one another’s spaces in ways that everyone is comfortable with. Green indicates that the person is happy to talk to anyone and welcomes anyone to approach him. Amber indicates that the person would like to talk to others but struggles to initiate conversations. Red indicates that the person prefers not to talk to anyone at that point in time, though it might change later on. In such settings, he can be his natural self without feeling judged or pressurized to put on an act. This traffic light system is not just a good accommodation strategy for autistic individuals, but also a reasonable adjustment that would probably benefit everyone in general.
Kieran’s family has a neurodivergent culture in which they have learnt to coregulate, walk around one another, and abide by certain communication rules. For example, they may text one another in advance to check if the other party is comfortable with having a chat or listening to a monologue. If a child texts, ‘Is it okay if I come and talk to you for 40 minutes about XXX?’ Kieran either replies, ‘Yes, I've got the time, come do it,’ or. ‘Not right now as I've got YYY to do, but I'll come find you when I'm ready.’ Explicitly asking for permission and scheduling a time is a way of respecting others’ boundaries and time. Every so often, Kieran and his neurodivergent children also take a weekend off, where they take breaks from talking to one another and have some downtime to do their own things.
Because the neurotypical culture has more power than the neurodivergent culture, autistic people are often invalidated. When there is no balance, social skills training just teaches masking, making autistic people feel like what they naturally need to do is wrong and that they have to act like other people. For example, social skills training for autistic people is often framed around the non-autistic communication style of turn taking, which does not take into account the autistic communication style of monologuing. Social skills training is based on the idea that there is a right way to do things, when the fact is that everybody does things differently, such that what is acceptable for one person might not be acceptable for another person.
Therefore, it is important for parents to help their autistic children understand their own neurology and way of being. Parents can encourage autistic children to spend time with other autistic children in order to learn autistic social skills. At the same time, it is important for parents to show their autistic children that other people exist differently and have different needs. Parents can teach non-autistic social skills by identifying what non-autistic people are doing and why, as well as explaining that autistic children do not necessarily have to be like that but sometimes have to meet in the middle. This allows autistic children to become confident about context switching in different situations. Furthermore, although social skills training is constantly focused on changing autistic children to make others feel comfortable, the non-autistic people around the autistic children should also learn autistic social skills and adapt to them. Learning social skills is akin to learning a foreign language, which can serve as a translation tool to overcome communication and cultural barriers when interacting with people from different regions of the world, without the assumption that one must take this language as one’s own.
One methodology that Kieran recommends for autistic children is Autism Level Up by Dr. Amy Laurent and Dr. JÂcqûelyn Fede. Kieran is also a senior adviser for Therapist Neurodiversity Collective, a networking group that introduces a pro-neurodiversity paradigm to therapists. It is beneficial to have input and leadership from autistic professionals.
Looking back, Kieran would tell his undiagnosed younger self that he was not broken or weird; he simply had not found his people yet. He is glad that his children are diagnosed and have a better existence than he did as a child. As a parent, he makes an effort to validate them in a world that often invalidates them. Despite their struggles with sensory overwhelm, emotional dysregulation, and communication barriers, he would not change anything about them.
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!