A dear friend and fellow PDA mother, Kim, recently wrote the following letter as a way to share important information with the school, in addition to the required documents that are part of the IEP process. She shared this document with me, which I found so incredibly helpful to use as a template for our own process of updating Rose’s IEP, that we decided to post it here as well. The following document is a conglomeration of our children’s respective needs. Please use and customize however you see fit.
Overview, Strategies and Support Needs for the 2021-2022 School Year
Our primary goal for Oliver this school year is that he will feel regulated, happy, and safe in an environment outside of our home. Given the daily challenges he faces, if he is able to attend school and feel generally content during his time there, we will consider this a big success. Oliver has a desire to make friends and is eager to learn academic skills, and these are certainly important goals as well.
Oliver is autistic and he presents a sub-type of autism called Pathological Demand Avoidance (PDA), which is a subcategory of autism where the presentation differs substantially: kids with PDA (tend to) make (more) eye contact, appear social, and have strong expressive language capacities as well as the ability to read other’s emotions well. These capacities are present in Oliver, but can fluctuate greatly depending on his overall state of regulation. PDA also differs significantly in the types of support needed and the types of strategies that are effective. At its core, the A in PDA (avoidance) is due to extreme anxiety caused by everyday demands. Daily tasks and routines like riding in a car, brushing teeth, getting dressed, sharing attention, waiting, etc. can lead a PDA child to attempt a variety of strategies to avoid those demands. Avoidant strategies from the child might include distraction, negotiation, distressed behaviors such as yelling or aggression, and can lead to full-blown fight or flight responses. The anxiety is cumulative, and when coupled with sensory processing differences, the distress can appear seemingly out of nowhere. An additional note about the perceived demands: these can also be from internal sources as well. The feeling of hunger (needing to eat), or the urge to use the bathroom can at times be overwhelming experiences for Oliver.
The types of strategies that are typically employed in autistic children produce anxiety in PDA children and can actually make things worse. Things such as set/recurring routines and behavioral approaches (rewards and consequences, charts, etc.) are all interpreted as demands. Conversely, PDA-specific strategies focus on minimizing demands: allowing the child to have as much control as they can whenever possible, presenting choices and allowing the child to provide input, turning tasks into games or races, using indirect/declarative language, giving extra time and support for transitions, introducing novelty and surprise, using humor, and paying attention to when dysregulation has visibly started to occur and giving space, distance, and quiet. As distress increases, the level of support required to de-escalate increases, and once a high level of distress has been reached, regulation becomes much more challenging and there is a tendency to return back to a higher level of stress. Oliver exhibits all of these behaviors and expressions.
Oliver also has sensory processing differences. Loud noises, commotion, transitions, sitting still, having to regulate his own emotions and state of arousal without dedicated adult attention will be challenging. While Oliver does have strong capacity to communicate verbally, his ability to access those communication skills will vary greatly depending on his state of regulation. Bathroom use is also an area of challenge, and we will need to speak to involved faculty/staff directly about this ahead of time.
In terms of academic considerations, Oliver is very bright and eager to learn. He picks up on things quickly, although direct instruction can be hard for him to receive. He cannot yet read, but knows his letters and numbers and has some very basic sight word recognition as well. He is left hand dominant and is possibly dyslexic (our occupational therapist is watching and supporting this). Auditory processing challenges might warrant him to ask that a question be repeated several times, and pragmatic speech challenges might appear where he’s unwilling to respond to spoken bids for interaction in the expected ways. Loud bells ringing at change of class could provoke a startle/fight/fight/freeze response.
With so many demands and so much sensory input, school presents an incredible challenge for children with PDA autism, and without the proper support, many of these children end up homeschooling. The reason we have chosen to pursue the opportunity for Oliver to attend first grade at _______ is because he wants to be able to go to school, he is eager to learn, to make friends, to do the things he sees his younger brother and peers in the neighborhood doing as well. We know with certainty that for him to be able to build on success, we go slowly, we help to alleviate pressure in every way possible, namely: reduced schedule (with intention to increase as tolerance allows), choices in little ways can make a big difference (“You may choose a pencil or pen to write your name on your paper” helps him feel in control and avoid the demand of one limited direct instruction), the option to leave the classroom when he feels overwhelm increasing -- the option to use a screen in the resource room, or take a sensory break in the sensory room or outdoors will all be very helpful in managing cumulative anxiety.
We hope that Oliver’s experience at school can be as positive as possible. It will help if he feels invited but not pressured to participate or engage with any activities; the basis of his struggles is anxiety, and it’s often that he cannot be forced into an activity without reaching a high level of distress. Conversely, if he feels freedom around it, he’s much more likely to be able to engage. While his desire to do something can at times motivate him enough to do it, it is important to note that his own desire is also perceived as a demand and therefore a threat, which he then feels compelled to avoid.
We also ask for information ahead of time with the option to decline attendance around any large all-school events including fire or active shooter drills, and other such events like assemblies or high-traffic areas which could be too overwhelming and lead to high levels of distress. To whatever extent possible, if there is a substitute teacher in charge of Oliver’s instruction for the day, we ask to be notified ahead of time (even if it’s the morning of) because this alert to an upcoming change will be helpful for Oliver to know ahead of time.
We see ourselves as partners with you and Oliver in his education, and will do everything we can to work with you to accommodate and support him and your work with him throughout the school year. There are many seemingly paradoxical and fluctuating needs that are a part of Oliver’s disability, and open communication and an opportunity to build respect and trust between all of us will make such a positive impact in his school experience. We also have a play therapist, an occupational therapist, and a PDA specialist who are available to work with faculty and staff at the school as needed should interest and opportunity arise. We have two books we would like to share: The Teacher’s Introduction to Pathological Demand Avoidance - Essential Strategies for the Classroom, and Declarative Language Handbook, and we will drop those off with (the school principal) to pass on accordingly. I am also including quick strategies/supports in bullet points below.
Oliver is curious, clever, energetic, logical, inquisitive, imaginative, caring, and quite funny. We know he will add something special to his classroom and overall learning environment. We look forward to working together and appreciate you taking the time to read through and consider the information shared in this letter.
Sincerely,
Strategies/Supports:
Start with reduced schedule and increase according to tolerance.
Have places to retreat to when classroom environment is too much.
Resource room: screen time is calming for Oliver
Sensory room: big, gross-motor movements (swinging, jumping, etc.)
Going outside
Meet or at least see photos of teachers, aide, resource room teacher ahead of time
Choice on where desk is in classroom
Organize schedule so when Oliver is at school there are the minimum number of transitions possible. (Primarily with 1st grade teacher, less time with specials/unfamiliar people/setting)
If aide not available all the time, at least have aide available for transitions. Have a buddy (classmate? older student?) to help. Allow warning and extra time for transitions.
Small amount of consistent caregivers including an “anchor person” who can provide 1:1 support
Treat melt-downs as panic responses (indeed, this is what they are), rather than naughty tantrums.
Trauma-informed responses to challenging behavior: signaling safety, building trust will be the keys to Oliver’s ability to cope with his challenges.
Option to not participate, but just sit on the sidelines and watch (a lot of learning can happen like this.
Have easy phrases or signals Oliver can use with the teacher to signal when he’s needing a break or more support.
Allowing him as much control as possible - presenting choices
Turning tasks into games/races. Use novelty, surprise, humor.
Having opportunities to take little snack breaks. Chewy foods are calming for him. (Could he chew gum while wearing a mask? What is the school policy on this?)
Using indirect/declarative language, i.e. “I wonder how to spell the word “ball”” instead of “Oliver, how do you spell the word “ball””
When dysregulation has visibly started to occur, give space, distance, quiet
Behavioral/reward based strategies are often felt to Oliver as a demand and increase anxiety - if behavioral challenges occur, call parents. NO isolation without supportive adult. NO ABA strategies, these are counter-productive and harmful.
Remove demands by making it clear he doesn’t have to do anything.
Please understand Oliver’s behaviors in a PDA framework and support a positive neurodiverse identity.
PDA involves:
pervasive avoidance of daily demands
Driven need for control and freedom (antidote to feeling out of control/overly anxious)
Highly sensitive nervous system
Frequently triggered into survival mode: fight/flight/freeze/fawn
Exhausted by social, sensory and everyday demands