During this week (6/7/2020-6/13/2020), we will be blogging about the New York Times Magazine “Understanding Autism” discussing some interesting articles

How to Meet Autistic People Halfway By Vikram K. Jaswal and Nameera Akhtar Pg 62

This article brought up a common challenge for people with autism, the general idea that people with autism have no interest in social interaction. They do a great job explaining that while people with autism may display behavior that typically signals disinterest- it is important to remember that it is a neurodevelopmental disorder. They provide examples that many people with autism are very interested in social interactions but may express it differently or use different behaviors to express that interest which simply are misinterpreted by typically developing peers. 

They use 2 common behaviors as examples, eye contact and echolalia. For eye contact, they note that many people with autism report that eye contact is difficult and actually focus better when not making eye contact. In my own practice, I have seen both sides of this debate play out. I have worked in places where eye contact was a required skill to be taught and was almost always a fight to teach. I have also worked in places where eye contact was not a targeted skill and clients did not often give eye contact, or if they did it was often minimal. I have read many articles by adult autistics that detail how painful eye contact training was for them and I think about my clients and their families. It has been a difficult process to determine if a client should be taught to make eye contact. A decision that I make on a case by case basis because I feel making a blanket approach in either direction does a disservices to my clients that deserve individualized interventions. In general though, I always ask myself if I believe a client needs to learn to make eye contact the important question of why- is it to make their family more comfortable? Is it to “show me” they are paying attention? Is it to make them less ostracized from their peers? And then I have to ask myself if that why is really worth it and if I don’t have a strong why that is truly worth it (like I do with any skill I teach)- it is not a skill worth teaching.

The second example was echolalia, when words or phrases are repeated verbatim out of the context, as a means to see that autistics may be interested in social interaction. I have seen both sides of this debate as well. I have worked with children who had extensive echolalia that served only as a means of interest/entertainment to the child. I have also worked with children that used echolalia as a form of functional communication, echoing phrases with the same intonation, pitch and prosody from a TV show but in new contexts to accurately communicate the child’s preference or situation. A common challenge becomes, as a clinician, do you discourage the echolalia or allow it to happen. Similar to the eye contact question it becomes a question of why I would want to change the behavior. I also try to remember that even typically developing people engage in echolalia sometimes. How many times have you quoted a favorite show or saying to a friend completely out of context? 

Having worked with many on the autism spectrum, I have yet to find a client that has no interest in social interaction. Each client has expressed that interest in different ways and the question should not be- does the child want to interact? But rather, how do we teach the child to interact in meaningful ways for both the child and the communication partner. We may have to broaden our idea of what a social interaction can be to really help children with autism maintain who they are while still learning the skills to access the things they want and need including social interactions. 

Making New Connections- Therapies with Communication can work. Here Are Four Pg 64

This is a short gallery of 4 unusual therapies for autistics. They list dance, horse or hippotherapy, surfing and farm animal therapies and give a short snippet of what each entails. Seemingly, most teach the given skill such as dancing surfing or horseback riding. They cite that it can help teach non-verbal communication as well as other benefits such as teaching balance or producing a calming effect. I personally do not have any experience with any of these therapies. I have however read many well conducted, peer reviewed research studies about varied autism therapies including hippotherapy.

It is interesting to me that the magazine chose to highlight these 4 therapies. On their face, they seem like great ideas. They allow for interaction with peers and exercise- what could be bad? The reality is that participating in these therapies may not be “bad” in the traditional sense of the word. These therapies may be enjoyable and even help build some skills the child is working on. My concern with these therapies, is the lack of evidence to support that they make meaningful change in important skills. Further, I fear that families may peruse these therapies to the detriment of proven effective therapies. 

There is abundant research to show that time spent in ineffective and sometimes even dangerous other therapies, takes time away from effective interventions and makes those effective interventions less effective!  I am sure this list was created with the best of intentions but I can’t help but wonder why Applied Behavior Analysis (ABA) therapy is not listed. One of the core goals of this therapy is teaching both nonverbal and verbal communication and has decades of research to support its efficacy. It is very surprising that this therapy is almost not listed anywhere in the entire magazine. 

Similarly, there is no mention of speech therapy, or occupational therapy, two therapies that also have research to support their effectiveness at teaching important skills in the autism population. 

As a Board Certified Behavior Analyst (BCBA), I have worked with children with autism in every setting imaginable from grocery stores, to horse stables, to camps and dance classes. I have seen benefits of children attending varied classes such as dance and gymnastics but I think there is a big difference between attending dance class that allows for peer opportunities and inclusive learning and calling that dance class a therapy in and of itself. My hope is that families do their research before investing precious dollars on expensive therapies with little research to support their effectiveness, and rather spend that money on therapies that have a proven track record. If the desire to have the child involved in those activities, choose the less expensive class and have an ABA therapist (supervised by a BCBA) there to help make those opportunities into chances for naturalistic learning and therapy. 

Muffling the Crowd’s Roar- By Jere Longman Pg 61

This short article describe the sensory room in the Eagles stadium and describes how a 6 year old boy used it to make an Eagles game outing successful. We so often talk about setting up the environment for success and that is exactly what this (and those in other sports arenas) are doing. It allows a quiet space, with items that are likely to be preferred, where children with autism or other sensory needs can take a break when needed.

One of the most common communication skills I teach children is how to ask for a break. We teach them to ask for breaks from work that may be hard, situations/events that are non-preferred and even when they may just need a minute to catch their breath. As typically developing adults, it is something we do frequently and it is easy to forget that kids (especially those with autism and sensory sensitivity) need it too! Breaks can be just taking a deep breath or even walking away and doing something fun. The nice thing about these spaces is that it allows the child to have whatever kind of break they need in a safe and quiet space. 

I don’t go to a lot of sports games…but I hope to get to Lincoln Financial Field to check out this room in person! 

Reaching My Son Through Disney – Book Excerpt By Ron Suskind Pg 84 

This excerpt follows Ron’s son, Owen as he grows up with a new diagnosis of regressive autism at the age of 3. He describes the confusion and difficulty understanding what is happening to his child. We learn that Owen has a love of Disney movies and it is a family tradition to watch them. At first, he begins to engage in echolalia, when a child echoes part or all of a heard phrase, and his parent’s begin to believe he has hidden language skills just not yet realized. As he grows and continues watching Disney movies with help of “Disney therapy”, he begins to develop a new communication from using his favorite characters and learning about social life through this lens. The older he gets, the more complex issues he can face and interpret through Disney. Ultimately developing meaningful friendships and relationships. 

It is a heart warming story that showcases just how much families will do to help discover any hidden potential in their child. It also reminders the reader that even what many would consider small gains seem extraordinary and worth celebration. Having worked with many different families, I encourage them to celebrate the gains no matter how small. They are still successes and often much harder won than those by neurotypical peers! 

I have worked with clients that, like Owen, have a strong interest in a specific topic and enjoy re-watching the same 20 second clip of a movie or show. Even some that enjoy watching the videos in other languages, played backwards, or sped up to speeds where you can no longer hear the words. Owen’s family seeks answers on what to do about this behavior, and the experts tell them to allow it in moderation if it seems to make him happy. There are many people that work with children with autism that would disagree with that approach and require that all time be productive as possible and prevent this repetitive behavior. I personally, side with Owen’s team on this. Everyone should be allowed to have leisure activities that they enjoy. Even if we don’t really understand it. Frankly, everyone has non-productive leisure activities we enjoy and engage in frequently. 

Like Owen, I also have clients that have made extraordinary gains in language when approached in a preferred topic. However, I have never seen the kind of gains Ron describes of his son where he moves from barely speaking in 2-3 word phrases to using a perfect sentence with intonation, and emotional insight without intervention and practice. I believe it is possible, but this part of the article immediately set off alarm bells for me. Many parents want so badly to believe their child “is still in there” that they often loose sight of small victories and progress. They stop setting realistic goals for their child and rather than working with them to reach those and loftier goals, begin down a path to release the hidden child. For many children, this means taking time away from therapy where the child is making meaningful but slow progress. 

I know that I will never truly know what my clients thoughts are or what skills they may have that were never demonstrated. I know that I don’t have the lived experience of a person with autism. What I do know is that I can assess a client’s observable skills and ask them questions. I have often found skills a child has, that no one was aware of, simply by asking or giving a child the chance to try something new. I think we should always try to ensure we give clients the chance to show us their skills and help them build on their strengths and support them in overcoming barriers. I want parents to be realistic though and know that most children will not have a miraculous new skill that was simply hidden. Rather, with the right support, children (both with autism and those without) will build skills with increasing complexity over time. 

“What a Muppet Means to My Family” By Jennifer Malia Pg. 78