The Causes of Autism

This section of the library shall be dedicated to commentaries on the Hubermanlab podcast. Included below is not a summary of the episode (I’ll leave that for you to check out), but rather my comments on the episode in terms of psychology, health, and human behavior. Whenever possible, I draw connections to autism as well. Most of my comments originally appear on Twitter/X, so be sure to follow on there.

Parenting & Autism…and ABA

Parenting is perhaps the most relevant topic when it comes to autism and is one I’m heavily familiar with. Thus, I will solely rely on my experience as a Board Certified Behavior Analyst working in the autism field as an ABA service provider for this commentary.

When Dr. Kennedy described various aspects of the parent-child relationship, I was saddened to think that many parents of children with autism would actually love to have a deeper bond with their child but are unable to do so because of the child’s language, emotional, and other developmental delays. The type of bonds a parent forms with a typically developing 15 year old teenager are different than those formed with a 15 year old with severe autism. The type of relationship is different, because the parent is also wearing a healthcare provider hat.

There is an unspoken grief that no parent has ever communicated to me, but that I can feel, in the difference in their bond with their child with severe autism versus one of their siblings without autism. A grief of loss; a grief of not being able to have the same level of relationship; a grief of their child potentially not having the same future as their siblings or other children. The bond between parent and child may be equally meaningful in these cases, for there’s no differences in love or affection that I’ve ever witnessed; but the relationship is different -and not in a way the parent would prefer.

One of the very first cases I was assigned to at the supervisory level was a 17-year-old with severe autism. He had no communication, minimal social skills, and many other developmental delays. Even though he couldn’t form words, he made other types of spontaneous vocalizations which, over time, I came to understand were not simply random, but rather held meaning and were a reflection of his emotional state. I was profoundly impacted by this case.

For these and many parents, they wear not only the hat of a parent, but they also wear the hat of a healthcare provider. This second type of hat can be so tiring, so emotionally exhausting, that it trickles into burnout that can impact their parenting. The boundaries between being a healthcare provider for their child and being a parent are oftentimes blurred.

The providing of emotional support to caregivers is one of the situations many ABA providers have to navigate. Many parents are so exhausted, so stressed out, so uncertain of the future of their child, that they just need someone to be there for them. They want comfort; they want help; they want someone to just manage their child for them for a bit so they can go do the dishes and not have to worry about their child eating something inedible. ABA service providers are supposed to provide ABA skills training and education to the parents so that they themselves are able to implement ABA strategies outside of session. But one of the challenges to this is the burnout that many parents experience as a healthcare provider, especially if they already have a long history wearing that particular second hat. Emotional resilience to intense behavior struggles can improve in parents learning ABA methods because they become equipped, both behaviorally and emotionally, on how to manage intense and severe behaviors. This improves in families who are ready and willing to accept all of the advice given to them by their ABA provider.

However, the process of ABA can often be slow, and it does require a lot of work. Unfortunately, some parents want immediate gratification: they expect instant results and when that doesn’t happen there can be a loss of treatment fidelity via the parent not providing consistency of ABA implementation outside of session, which in turn leads to inconsistency for the child and potentially not practicing adaptive skills outside of sessions, which just makes the adaptive skills learning process take longer. This may be extended beyond just behavior management, but also something as simple as requiring their child to communicate verbally whenever they want something rather than giving them whatever they want without having them practice communication skills.

Conversely, sometimes parents become over-reliant on ABA. Some want to have ABA seemingly forever to always have support their for child (hey, I’ll take it as a compliment as a good ABA service provider on some level). But in some cases, these parents catastrophize any little thing that happens as an excuse for constantly needing ABA. I can think of an example where the child is actually placed in a general education setting instead of special education, is able to fully communicate and socialize with peers, but any little thing that happens is blown out of proportion on the parent side. This particular child is moving ever-closer to graduating from ABA and it will be a tough conversation to have for the parent -in this case, the delays are becoming mostly academic in nature and these needs are beyond medical necessity (medical necessity and academics are a distinction we have to manage when dealing with insurance coverage for ABA services). Part of my own professional development working in this field has been to learn to empathize with genuine parent struggles but not empathize with catastrophizing, and not lead parents into thinking that their own emotions, their own reality of autism, means they get to have ABA services indefinitely when their child may no longer meet medical necessity or ABA services may no longer be the best option for their child.

On the other hand, you have select parents who are so willing to exert any extra amount of effort for their child that they absorb every single piece of advice you give them so that they can implement it both during and outside of ABA sessions. These are the most amazing and consistent parents, and the progress that their child makes is definitely a bit quicker than other peers receiving ABA because the child is receiving consistency both inside and outside of ABA sessions. It’s always noticeable.

Over the period of time in which I have become more acquainted with research on the environmental factors associated with autism, believe it or not, it’s actually made my practice of ABA a little bit more difficult. Why? Mostly because of awareness that I am treating a neurological disorder whose origin lies in the interaction between the body and the environment behaviorally.

What environmental toxins have impacted this child’s autism symptoms?
How has this child’s emotional-physiological reaction to stimuli been exacerbated by toxins in the environment, whose reaction I am treating behaviorally?

These questions haunt me a little.

Believe me, there is no question that high-quality ABA can make dramatic changes in a child’s life. I remain proud to this day to have gotten feedback that one of my clients who had been receiving ABA two years prior to entering special education in preschool was the only student in the entire classroom who had verbal language, while none of the other autism students could speak. It is an amazing tool.

Nevertheless, as I continue to educate myself within the depths of the autism literature and history, one of the things I will find myself pushing for is more collaboration between healthcare providers who are treating autism and ABA service providers. How much can progress in ABA be improved through a combination of cutting edge treatments for autism?

The more I read, the more my goals continue to be defined and refined.

Got Boundaries?

Dr. Huberman asked about the notion of children craving boundaries: do children want them on some level? Dr. Kennedy responded that there is some merit to that, but that empathy and boundary setting go hand-in-hand. It was interesting to hear her state that “it’s the child’s job to be emotionally upset,” which is a refreshing reminder of the parent-child relationship. It’s the parent’s job to set boundaries and display empathy, and it’s the child’s job to be a child -which may include becoming emotionally upset when something is taken away from them.

In the autism world, too many times I see children becoming emotionally upset when a parent takes something away -and the tantrums can be quite devastating to both the child and the parent. While sometimes a toddler’s tantrums can be a little endearing (by ‘endearing’ I mean a detached observation of the learning process for the parent and the child that encompasses tons of empathy), an older children’s tantrums whose capability for environmental destruction is greater…well, they can be anything but endearing.

Nevertheless, the relevance of boundary-setting is not diminished, especially in the autism field where perhaps they are even more important, insomuch as many children with autism seem to love to test boundaries.

Reinforcement and Punishment

I really enjoyed Dr. Kennedy’s comments regarding reinforcement and punishment. Much of what she stated gets at the differences between intrinsic versus extrinsic reinforcement. If I were to break down what she said in behavior analytic terms, it appears she prefers the notion of promoting intrinsic motivation because a behavior simply feels good to do, such as the example of putting dishes away because it’s the ‘responsible thing to do’ which in turn leads to inner pleasant feelings. This is opposed to extrinsic external rewards that a child can become dependent upon. No doubt for a typically developing child, the differences between intrinsic and extrinsic rewards are easier to manage.

In the autism world (I find myself using ‘autism world’ quite a bit in this commentary, and by this term I mean to say anyone who is managing an autism diagnosis, be it a caretaker, a sibling, family member, or service provider), intrinsic motivation is perhaps the most difficult thing to teach many children and is the reason why there is so much dependency on external rewards. I absolutely empathize with the parent Dr. Kennedy gave an example of who said that they couldn’t get their child to pick something up off the floor because the child wanted a five dollar reward. Unfortunately, that is a certainly a possible consequence of a reward system that does not fade the use of external rewards to promote intrinsic inner feelings of responsibility, self-esteem, and self-actualization as a growing person.

Dr. Huberman had asked about children craving boundaries; I would add that typically developing children also crave autonomy and independence. Unfortunately, many children with autism do not seem to crave these things, but seem perfectly happy to rely on parents for everything, sometimes due a lack of motivation but sometimes also a consequence of socio-emotional delays (and the contributing physiological brain mechanisms behind them is out of the scope of this commentary) that result in the child simply having little motivation to develop autonomy and independence. Thus, it could be said that its not that the children with autism don’t want autonomy and independence, but they haven’t reached a level of socio-emotional development where they do want those things as an aspect contributing to their self-esteem.

Impingement

Dr. Huberman posed a question about impingement; impingement being the notion of not validating a child’s feelings. Dr. Kennedy stated that parents need to validate the child’s feelings and set boundaries, but not be a dictator.

This reminds me much of the differences between authoritative and authoritarian styles of parenting. Authoritarian style being a type of parental dictatorship without validation of the child’s feelings and only setting firm boundaries and expectations; authoritative being the parenting style where boundaries are still set but there is lots of empathy, support, and communication. I was hoping Dr. Kennedy might have talked about these styles of parenting because I remember learning about them as an undergraduate and I wondered if they were still relevant at all in parenting research. Has the research on this been refined? Or are there novel ideas about parenting styles altogether? I should’ve asked this question when Dr. Huberman asked the public for questions about parenting…darn.

ABA is not a parenting style in itself. Its implementation would probably augment whatever parenting style the caregivers predominantly have unless they make adjustments to their parenting (i.e., ABA plus authoritative parenting, or ABA plus authoritarian parenting, etc.). When correctly applied, ABA should augment authoritative parenting that provides lots of empathy and support.

To Do Or Not To Do: That is the Question ^{(brownie points if you get the ref.)}

Dr. Kennedy shared that one of the most under-utilized strategies when a child engages in a bad behavior, such as yelling at their parent that they hate them, is doing nothing. She shared that parents are more likely to regret having lashed out in response and that a better strategy would be to validate their child’s feelings but step away from the situation. The parent can communicate to their child that they can pick up where they left off when they are both calm.

This is excellent.

To use Dr. Kennedy‘s language, it is both setting boundaries as well as empathizing with the child. In ABA terms, this would be called placing a behavior on Extinction (i.e., withholding reinforcement for a behavior, in this case withholding negative attention which can just make things worse), while also validating the child’s feelings. I appreciated hearing this because the behavior and the child’s emotions and need for comfort are treated separately. This is a very fine distinction in ABA services; you might ignore behaviors, but you don’t ignore child/emotions.

Love and empathy are the tools to be used hand in hand with behavioral strategies.

Deeply-Feeling-Kid Phenotype

Dr. Kennedy shared that there are certain children who feel more than others and require different strategies of validating their emotions. Dr. Huberman ended up calling them “Deeply-Feeling-Kid Phenotype” -I love the term.

This reminded me of the concept of being an Empath, in that some people are more porous to the emotions of others. It doesn’t appear there are clinically defined criteria for being an ‘Empath,’ so there is room for further study. Dr. Kennedy shared that she believes there is around a 20% prevalence rate for this.

I have two completely opposite thoughts regarding factors that may contribute to these rates:

1. Toxins in the environment that are disrupting people’s emotional processing toward over-emotionality and dysregulation in the way we process emotions.

Or

2. We have more psychic/intuitive people in the world. 🙂

Put the Time Outs on Time Out

Dr. Kennedy shared she doesn’t believe in timeouts.

I would concur. I don’t recommend them in practice because they don’t teach an adaptive skill. Perhaps due to some negative stigma associated with ABA, I’ve been educated in era of ABA practice where punishment procedures are considered a last resort after exhausting all reinforcement strategies. Usually, punishment procedures when used correctly may reduce a behavior, but they still don’t do the crucial part of teaching the adaptive behavior.

For example, putting a child in time out for hitting their brother might reduce hitting behaviors; but the time out doesn’t teach them how to compromise and share with their sibling, nor is the sharing behavior getting reinforced by the time out. So, punishment procedures typically lack the crucial component of teaching and reinforcing adaptive skills, and this can easily be said to extend to behaviors for adults with or without autism (e.g., a speeding ticket might reduce the behavior of driving too fast, but it doesn’t teach ‘safe driving’ behaviors -which is why they also make people attend a class in driver’s ed.).

Putting people in prison in itself doesn’t teach adaptive skills they need to make it in the world; that’s why there’s so many issues when prisoner’s are released back into the public without having undergone extensive preparations.

Managing Frustration

Another topic discussed was that many children are not challenged to manage frustration. It was funny to hear about the days of going to Blockbuster movies and dealing with something as simple as not having a desired movie available -for me it was a video game not being available.

The management of frustration and coping with a challenge is something I specifically work on in practice. Tolerating being told ‘no’ without becoming overemotional, or simply waiting for a meal and engaging in alternative behaviors to cope with the delay or denial of the item can be difficult. I fondly remember creating an entire visual system to show a boy what items were available for them in the home and what items weren’t. The visual did its job of preemptively communicating what the child perhaps wasn’t processing via words alone; albeit, they were not thrilled to learn what items weren’t available to play with. Lol.

In the general world: absolutely. It definitely seems like we live in a world where everything is becoming easier and we don’t really have to manage much frustration. It’s all too easy to escape frustration.

The so called “Woke” movement has been gaining much criticism on social media of late. One could perhaps state “Wokeism” is emotionally apologetic in nature to anyone’s experience of frustration, resulting in people who demand others cater to their irrational emotional needs without consideration of long-term benefits of learning to manage frustration or simply not forcing others to believe what you believe (e.g., victimizing oneself for being overweight and pointing the finger at anyone who brings it to our awareness without consideration of the health impact on oneself of being morbidly obese; victimizing oneself for the choice to engage in sex-change behaviors based upon notions of gender identity and pointing the finger at those who do not accept one’s choice without consideration of other people’s own cultural/religious/etc. backgrounds, etc.). It could be said that a portion of this movement grew out of emotional apologeticism -people need to learn to manage their frustrations and change their own behavior rather than force the world to change. There is a balance to be found, of course, in validating another person’s experience, and that’s the tricky part.

Where is My Parent?

It’s interesting that this is brought up as a point regarding normal childhood development, that children check to see where their parent is located to make sure they’re nearby.

This specific item, checking to see if a parent is nearby, happens to be a question on the Vineland-3 assessment that is often used with children with autism.

Many children with autism wander, play endlessly by themselves, and otherwise don’t check to see if their parent is nearby. This aspect of child development is so critical and absolutely an important part of socio-emotional development; that the child checks if their caretaker is nearby in order to provide support should they need anything.

So, it was nice to hear this brought up because its something I frequently assess in the autism field.

Parent’s Relationship with Each Other

I loved hearing Dr. Kennedy speak about the importance of parents remembering that they had a relationship with each other before they had kids.

There’s surely a lot more to discuss on this topic in terms of what parents feel that their role should be as a caregiver. Some parents believe that once they become a parent, that’s it, everything has to be done for the child and their relationship takes a backseat. Other parents seem to be backwards: their relationship takes precedence over their parenting. Obviously, a balance is required.

In the autism world, this is particularly important because for some families it’s difficult to find a babysitter -or even a family member- to look after a child who has a severe adaptive skills benefits and/or maladaptive behavior excesses (what babysitter or family member may be ready to manage intense tantrums?).

So, the ability for parents of children with severe autism to have a meaningful relationship with each other might be challenged. I’ve witnessed parents whose relationship is brought closer together, and I’ve witnessed parents whose relationship has been challenged by differences in caretaking. Services like respite or ABA may provide emotional support for the parents to take time off from overseeing their child and take the time to engage in self-care behaviors.

The point being perhaps that parents need to consider their relationship with each other as separate from their roles as parents. However, when emotions and ideologies become intertwined with parenting, it can be difficult to parse them.

As always, thanks for the lovely episode Dr. Huberman.

This will be my last commentary for a bit due to needing to organize myself and prepare for some major changes I’d like to implement for this library.

Your podcast has been invaluable to me; more than I can put into words.
Would love to have dinner and perhaps get some advice.

Autism Librarian