Programming note: I know that April is Autism AWARENESS Month and that this is May, which is not April, but this thing happened late in April and this is the first I can write about it and it is my blog so I’ll blog about what I want to when I want to even though I do follow my own editorial rules… mostly.
As many of y’all already know, La Petite Fille is autistic and is on the pathological demand avoidance profile. Recently, she had an English assignment that required her to make a podcast on the ways two or more texts discussed the Holocaust. Well, the Holocaust caused Le Petite Fille a serious existential crisis, so her teacher graciously allowed her to chose her own topic. She chose PDA and school.
While the final product lacked some of the finer production values in a podcast that we’ve all become accustomed to, she made some interesting conclusions using aspects of her two texts that made me proud and provided some interesting insight into PDA and school.
The two texts were Harry Thompson’s website and blog and The Good Schools Guide’s page on PDA. Thompson is writing from the perspective of a person with PDA and activist and the guide is more professional offering guidance for schools, teachers, and parents on coping with children with PDA.
For anyone who has dealt with someone with PDA, you know that her characterization of schools trying to cope with PDA’ers is like herding cats and that schools are trying to force spheres into square holes, the only way to do so is to damage the sphere.
She took two concepts originated by Thompson: false inclusion and establishment autie, where autie means someone with autism. At least, I think Thompson originated the concepts. Maybe he didn’t, but it reads like it.
False inclusion is the tendency by neurotypicals to try and be nice and inclusive to auties, but all they end up doing is making the autie feel uncomfortable while not really helping. It might be trying to help the autie or PDA’er complete an assignment by asking a series of questions that helps build towards the school assignment. It seems like it might help, but it usually just makes them more anxious and less likely to complete the assignment. The inclusion is false. It doesn’t include; it just seems like it does.
An establishment autie is a person on the spectrum whose issues and obsessions happen to fit into the those of the wider society. In short, they have an easier time fitting into society at large and with neurotypicals because they aren’t being as weird (to the neurotypicals) as most auties and PDA’ers are seen as being.
He has made several observations that seem pertinent to how PDA’ers react to schooling: life artist and scheduling and planning. PDA’ers are life artists because they work by inspiration like artists do. They do things when they are ready to do them and do the things that they are inspired to do, which means that some things just won’t get done. He notes that scheduling and planning is destructive for the PDA’er because they are life artists. You organize it and take all the fun out of it. By scheduling and planning you inhibit the PDA’er, it activates their anxiety and stops them from doing the things they, otherwise, might have. What is schooling if not being scheduled and planned?
The school guide describes PDA in general, and goes on to outline various symptoms and tendencies of PDA’ers, especially how it affects schools and teachers. It then goes on to give a series of recommendations. I’ll summarize them here and then relate how La Petite Fille applied Thompson to the guidelines.
They list these symptoms and asks that you think of them as they relate to obsessively resisting demands:
- giving excuses
- distracting or changing the topic of conversation
- negotiating or needing to have the last word
- bombarding with repetitive questions or noises
- withdrawing into fantasy world
- complaining of physical impairment – ‘my legs won’t work’
- panic-driven physical outbursts or meltdowns.
La Petite Fille points out that symptoms imply disease which suggests that something is wrong that needs to be corrected. And it sets up a struggle around getting the PDA’er to comply with the demands of school and teachers. It elevates those demands as being paramount in the relationship.
They use the word suffer with these two items:
- Appearing sociable on the surface but without depth of understanding: Children will often appear charming and more socially able than a child with typical autism, but will struggle to understand the subtleties of social interaction on a deeper level. The sociability is often used as a strategy to refuse a request or demand, but as they lack a deeper social understanding they may overpower, overreact or be unable to take responsibility for their actions.
- Excessive mood swings: Parents often describe children with PDA as unpredictable or ‘Jekyll and Hyde’ as they can be charming at one moment and angry or distraught at another. Triggers for rapid mood swings are often in response to a perceived demand or feelings of not being in control.
By using the word suffer to describe these qualities, it implies that the suffering needs to be alleviated somehow. “The sociability is often used as a strategy to refuse a request or demand“ places the PDA’er in the position of being wrong and needing to be fixed. And, “overpower, overreact, or be unable to take responsibility for their actions….” essentially makes the PDA’er wrong and bad. Society values nothing more than taking responsibility for your actions and they are saying that PDA’ers don’t do so. They do. PDA’er experience significant shame at not fulfilling the demands placed upon them, so much so it is paralyzing and they try to avoid that shame by avoiding the talking about it.
Worse is the characterization of PDA’ers in the second point. PDA’ers are called Jekyll and Hyde! Essentially, they are being called monsters. Out of control Hydes dressed up in gentile Jekyll clothing. The trigger for releasing the evil inner Hyde is a “perceived” demand. Perceived as if it might not even be real.
La Petite Fille identified both points here as characterizing PDA’ers as the problem and getting schools and teachers to view them not only as problems but to expect the worst from them. It delegitimizes the very real pain and anguish being in a structured environment of scheduling and planning puts them in.
I won’t copy and paste all of the recommendations since that would be excessively wordy. I will copy and paste specific ones for the purpose of clarity of discussion.
The guide uses three subsections to make recommendations to schools, teachers, and parents. Under the auspices of showing how schools make things worse, they list things like
- Children with PDA can appear verbally competent. However, as a result of slower processing they frequently fail to understand everything that is being said to them.
- Some children are unable to comply at school and spend a great deal of energy trying to gain control or avoid demands.
- This can be misinterpreted as the child not wanting to engage rather than a symptom of their spiralling anxiety. They can have panic-driven physical outbursts which can lead to fixed term or permanent exclusions.
- The pressure of ‘putting on an act’ takes its toll and they can suffer extreme meltdowns. School refusal can be a result of the anxiety they suffer.
This section is about as sympathetic as it gets for PDA’ers. They are absolutely right, here, when they say that the struggle to maintain composure and a modicum of compliance during the school day can wear down the child and cause meltdowns either at school or at home. They correctly focus on the role of anxiety and not on the defiant demand avoidance. Demand avoidance is a way of managing the anxiety that demands incite.
In the section about what schools, teachers, and parents can do to help is where they begin to run into trouble, again, but a more subtle type of trouble according to La Petite Fille.
- Try to remain calm and non-confrontational. The meltdown can be likened to a panic attack, so reassurance and a calm approach rather than recriminations or punishment is likely to be more effective.
- Avoid direct demands like ‘you need to’, ‘you’ve got to’.
- Provide choices, such as ‘would you like to put your shoes on here or there?’
- Directly praise the child to another person within their earshot if they struggle to accept praise directly.
- Acknowledge and empathise with the child’s feelings and reflect this back to them, like ‘I think you are struggling; just do your best’.
- Use humour or distraction.
- Limit the number of boundaries and allow the child to feel in control wherever possible.
Again, there is a mix of good and bad here. Being calm and non-confrontational is good. Relating meltdowns to panic attacks is good. Avoiding direct demands is good. Acknowledging the PDA’ers feelings is good. The other seem good, but really, according to La Petite Fille, they are just ways of tricking the PDA’er into complying and putting off the inevitable meltdown to when the child leaves school. Providing choices is just a trick to gain compliance since one of the choices is not to do it at all or includes something the child would rather do. Praising the child to others when she is within earshot, while an effective strategy, just feels manipulative just like using humor or distraction. And, allowing the child to feel in control acknowledges that the child is being tricked and never actually is in control.
Their “strategies” section is where things get ugly.
- Allow the child a sense of control and be prepared to negotiate (start high and allow the child to feel that he has won).
- Give the child responsibility for little jobs to help improve self-esteem.
- Build the curriculum around special interests.
- Be prepared to wipe the slate clean over and over again.
Again, they emphasize allowing the child to feel in control, when the child really is not. Giving the PDA’er “little jobs” to improve self-esteem seems as condescending as it does manipulative. But, La Petite Fille reserves a special level of scorn for the build the curriculum around the PDA’er’s special interest and wiping the slate clean.
Both of these sound incredibly good to most of us, but most of us don’t really realize how impossible both are. While some teachers can occasionally alter an assignment to include the PDA’ers unique obsessions, it cannot be done consistently. There will always be times and subjects where it is impossible. So, what’s the purpose of including this strategy without acknowledging its limitations? Similarly, wiping the slate clean sounds great, but it is impossible. The emotional reaction to serious meltdowns means that a powerful lightbulb memory has been created that will be difficult to extinguish.
Both of those strategies are created to help teachers and schools feel off the hook. To alleviate them of a sense of responsibility for when the PDA’er fails at doing something that is fundamentally at odds with the PDA’er’s core being. Scheduling and planning are destructive to the PDA’er, but there is no strategy that eliminates the scheduling or planning. There is no room for the life artist to thrive in the strategies and recommendations, just survive.
All of these recommendations are just so much false inclusion created to ease the consciousness of the schools, teachers, and administrators allowing them to be able to claim that they’ve done all they could to help the PDA’er. They were probably written by an establishment autie who falls into the trap that everyone does when they deal with PDA’ers. If they would just do x, y, or z, everything would be so much better. They really are trying to put a sphere into a square hole. They just don’t seem to mind that the sphere is fundamentally damaged as long as it fits eventually and their consciousness are “clean.”
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