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Autism Level Up: How Adults Can Best Support Neurodivergent Children

On Mar 12, 2023, the dynamic duo of Amy & Jac of Autism Level Up (ALU) spoke to REEL about how adults can be neurodiversity affirming forces in the lives of their 2e students. They discussed living in "useful reality", the importance of cross-cultural understanding between neurodivergent and neurotypical, energy regulation and the energy meter tool, finding the problem with an activity, creating affirming individualized goals, learning how you learn best, and so much more! They provided many tools that you can use at home or share with your school. You can also invite ALU to do a workshop for your school.


Here is a summary of some of their key points:


The term “neurodiversity” means that all brains learn differently. The term “neurodivergent” means a clinically significant difference. 1 in 7 students are neurodivergent - that is a lot of kids in schools! We need cross-cultural understanding between neurotypical (NT) and neurodivergent (ND) students. It is an unfair burden to expect that only neurodivergent students learn neurotypical norms. We also need to teach NT students about ND culture. We work in this world together, it is a 2-way street.


In the past neurodivergence was discussed using a medical model which was all about deficits. Now people like to talk about strengths and superpowers, which is great, but an ND life is not all rainbows and unicorns. ALU believes in “useful reality” - we need to celebrate differently wired brains, but not neglect real barriers in a world made for NT brains. (Also be careful not to define ND strengths as traits that “look NT”.)


In light of useful reality, ALU focused on 3 useful tools to support ND students:


Regulation

Supporting regulation is key to supporting active engagement in the environment and relationships ND kids wish to participate in. The ability to regulate oneself correlates to a higher quality of life - which makes sense if you are able to engage in the things you want to do. This is also a huge area of struggle for many ND students.


To discuss regulation in a neurodivergent affirming way, we need to shift away from focusing on external behaviors to focusing on the internal experience. (See the SCERTS model) We should not try to control a student to meet our standard, but rather teach skills and abilities so they can meet their needs on their own.


To share their internal experience, some students are empowered by using emotion words. ALU created an energy regulation based alternative since emotion words don’t work for Jac. She says emotion words are a social structured layer over physical arousal. If you are wired to be social, you can use these words. If you have trouble with regulation, they don’t help. If it’s like a foreign language to you, being forced to discuss your emotions can mask your inner state. She does better identifying energy in her body, whether it’s surging or lagging - it’s a more concrete concept. You can level up regulatory support through community collaboration, by supporting students in a way that resonates for them.


The ALU energy meter shows potential energy states - we can be maxed out, amped up, focused, settled, sleepy, or asleep. We need all of these states at different times, there aren’t right or wrong ones. For example, you may want to have “maxed out” energy while riding a roller coaster. The issue arises when the energy needed for an activity doesn’t match the person’s current energy level. That means the student isn't regulated and needs a tool or strategy to get to the right energy level. Dysregulation means an incorrect energy fit. There is not a right energy state for an activity, there is your right state for this activity, and it may be different for various students. Well regulated does not equal calm. For example, while some people may prefer to be in a “focused” state to give a talk, Amy likes to be in an “amped up” state and move around when she’s giving a talk. By using an energy meter, adults can help students assess their current energy level and the level needed for an activity. Kids can customize their energy meter with images that resonate for them - from animals to sports to whatever is meaningful. By growing self-understanding of how students learn best, and providing tools and strategies for energy regulation, you are providing students with a life-long skill that will allow them access to the activities they would like to engage in.


The Size of the Problem

We often see well-meaning quotes such as, “We don’t have special needs, everyone has different needs” when discussing neurodivergence. To level up this thinking, we must understand that different needs require different supports. ALU has developed a flow chart to help us understand how to best provide these different supports when students seem to be stuck.


We can’t presume to know the problem if a student is having a hard time. We can’t know what a student’s problem experience is, and when we don’t know, we often project what we think it should be. We also can’t know how big a problem feels for somebody else. ALU surveyed hundreds of people about various problems and how big of a problem they are - from a stuffed animal falling off the bed (some found it horrible, some didn’t care at all), to global warming (some found it consumes all of their thoughts and some don’t think about it much). It is not something we can judge for somebody else. We need to help people have the tools and strategies to solve things that are truly problems for them.


What if the problem is the activity itself? This is where we can examine school activities. For students who thrive on information and predictability, ALU created a flow chart to help collaborate to figure out the problem. Start with basic needs before the academic tasks - has the student eaten, rested, used the bathroom, etc. Then examine what kind of activity it is. Is this a “must do” activity? ALU has a narrow definition for these - only health & safety issues such as wearing a seatbelt fall into this category. Or is it “needs to be done, but is negotiable” activity? Almost every activity in a school day falls within this category. Yay - this provides us with flexibility! We can negotiate where/when/how/who/how much around the activity. We need to teach learners (and ourselves!) this flexibility. Is it an “up to me” activity? Then I have the power to say no. Or maybe I don’t know which type of activity it is and I need to learn to ask. Using these tools leads to self knowledge and self advocacy as students learn what they need to successfully navigate school tasks.


Useful Reality Goals

We often set goals or objectives for our learners, including in IEPs. ALU has created a tool to guide ND affirming goal creation. Goals need to be affirming and individualized. The goals should be the person’s goals, not a speech goal or OT goal, etc. While not every student at every age can write themselves a goal for their best interest, the goals should still be person-centered and productive. The goals should not have “does x in 4 out of 5 opportunities.” Make goals that give a big bang for their buck. Then invest in it - it’s going to be work - but will have a real impact in self understanding and self awareness for self advocacy. These goals do more good for someone versus goals like “can sit with feet on floor” or “can have three age appropriate conversations with peers during a 20 minute lunch period”. Think about regulation, significant forms of communication, the supports needed to meet these goals, understanding what one’s needs are, and developing a regulatory skill set. Think about how they know it of themselves and advocate for it, even after they leave school. Goals should not focus on NT standards to make NT folks more comfortable. Goals should not include control & compliance techniques. Also, you can’t expect growth without support. When measuring the success of goals, make sure to note whether the support partner has done their part, and don’t measure progress unless this is true. The ALU online tool shows 8 goals rewritten in an ND affirming way and how to measure them.


Q&A

  • How can a classroom balance differing energy levels? You can use grouping, positioning, etc. Not all learners have the same energy needs - some need to stand and move, some need to doodle, etc. The same energy level looks different for everyone. ALU has a tool called “My energy” that lets you show what your energy looks like at different levels. They also recommend their Bumper Whole Body Learner tool that helps you figure out what you look like when you’re learning, what you need to learn, etc. Then students can compare to see how diverse the classroom needs might be. This tool helps with understanding others needs, tools & strategies, and builds self knowledge. One person’s regulation activity can be another person’s trigger, but if you know why it is happening, it provides a different perspective.

  • What if a student thinks assignments can’t be flexible? Get the team to present a range of ways to complete an assignment, not mom or dad. Have the team say, “I need you to demonstrate your learning in one of these various ways.” Ideally you would get UDL (Universal Design for Learning) options from a teacher as part of the assignment. See if you can get one teacher to start. For Jac, who liked to change her assignments to make them more creative, most teachers eventually came up with alternatives after she changed things herself. She believes in co-conspiring. Once you realize assignments are all invented, you realize you can have a say in that invention.

  • What if a student always opts out of math? Jac didn’t do well in math K-12 as it was too abstract. But when she took college stats in the context of her psychology degree, she did very well. Why? It was motivating and meaningful.

  • How can we work with public schools that still use behaviorism, we can’t refuse FBA and work with the district, they push back on these radical changes? ALU does professional development and consults for schools. They understand you have to show ABA goals for insurance, etc but if you can get a few people to try these methods and see success, it spreads. Get this information to even one person - don’t let perfection hinder progress. Find the common ground and then help them level up. Each little change ripples out to many students. Find a logical next place to move forward. Energy regulation can be a good way in, as it’s an area most people aren’t wed to.

  • As a school administrator, I’m criticized for leaning too far into ND needs and parents say it’s disruptive to the classroom? We need “gym” and “spa” areas in schools, we can’t regulate all needs inside the classroom. We need spaces to be active or calm to bring your energy up or down. These should be outside of the learning environment so it doesn’t bother others - beyond just wobbly chairs. You can get your needs met and come back to the environment. We acknowledge staffing considerations, etc but you can’t expect kids to stay in a situation if they’re over amp’d. Students need to get the intensity of support they need. That said, if a student has to regulate all the time - like being on a treadmill and always needing to do something to get an energy match - think about changing the environment and the activities. The spa and gym are buffers - if the source of dysregulation is the cognitive demands or lack of social understanding, you can throw all the walking breaks and bean bag chairs at it and it doesn’t solve the root of the problem. The burden might be too much on the individual to be regulating, you need to change the environment and activities.

  • Definition of autism? Check out Neurobears for autism definition

  • What if a child has difficulty with decision making, even simple things like ice cream vs popsicle? ALU are huge fans of offering choice, but if someone is paralyzed, just explore something - do ice cream and list what was good or bad, what worked and what didn’t, then do it with the popsicle. Build the child’s cognitive construct of how they will make a choice in the future. You can use the Bumper tool: try things and reflect on them, how do they feel in my body, do I like them or not, and build a menu of things I like. Remind the child, just because you make one choice now, it doesn’t mean you can’t make a different choice in the future.

  • How to support students with a PDA profile? Model without expectation. This doesn’t activate the threat response. The child can sit back and watch and figure out if it works for them. It’s how we present our tools to individuals. For example, for a child with difficulty transitioning, his parents built a schedule for themselves and then the child came over and asked about it. It became “this is just what we do in this house”.

  • Siblings - how to be fair when they have different needs? Use the Bumper tool - build understanding that different people have different needs. Equity means everybody gets what they need, not everybody gets the same thing. For you, this might be easy or seem like a treat, for your sister this something they can’t function without or vice versa. Build cross-cultural understanding.


Being neurodivergent affirming means we understand each other's needs and understand that our needs are different from others. It means building an understanding of diversity. ALU does cross-cultural training in schools. Don’t put the onus for change on our ND/2e kids.

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