legosTo date, our most popular blog is Why Do Kids with Autism Do That? Not surprising I suppose, as we are always trying to figure out why our kids do what they do. We gathered more puzzling questions for our panel of providers and invite those of you who offered your own insight and perspective last time to join in. This time we asked Brandi Chew, PhD, Jo Ristow, MS, CCC-SLP, and Soo Kim, MD to share their thoughts and this is what they had to say . . .

Why do some kids with autism . . .

Learn unevenly – seem to take one step forward and then one back

Jo: The answer to this question could fill a book! In my practice, I see a lot of this unevenness when kids have difficulty translating (or generalizing) learned skills to different people, environments and items/activities. For instance, I’ve seen kids learn that they can touch a photo on the iPad to activate voice output and request a Skittle, but then not be able apply that learning to touching different photos to request other items, even similar items like other candy. This looks like they have learned the skill in one setting but have “taken a step backwards” in other settings. The learner may also seem to think that this technique will only work in a single place or with a specific person. Teaching systematically in different situations, with different people, and with different preferred items is important to help kids realize “Aha! This works ANYWHERE with ANYBODY for ANYTHING!”

Have trouble regulating emotion

Jo: From a language perspective, many kids with autism struggle with upper level language skills, so the idea “if I feel this way then I need to do x” represents a challenging language processing task – especially if you are already in a heightened state! I think this is why social stories, when taught prior to distraught emotional states, can help so much with behavior regulation for some kids. It gives them an internal monologue to understand the when, where, why and how of self-regulation. We all use this strategy. For instance, one of my own internal monologues is “When I feel tired and grumpy, I will drink some coffee so that I am pleasant to my co-workers.” Kids with autism may need some concrete teaching to develop and use these tools.

Dr. Chew: Emotion regulation is a lot more complex and arduous than we often acknowledge. It involves a lot of different biological, psychological and social systems, including the areas of our brain that are responsible for processing feelings and social information. Research shows that individuals with ASD have differences in the way their brains process certain types of information, such as recognizing emotional cues and the importance of those cues. Day to day functioning may also be more intense for a child with ASD because they may feel easily overwhelmed in social situations, have sensory differences that increase anxiety and frustration, and fixate on details that are seemingly benign to others but result in significant distress for the individual, such as an unexpected change in the classroom, like a substitute teacher or a new student.

Insist on sameness

Dr. Chew: Individuals with ASD tend to be more concrete in their thinking and reasoning skills. Parents may notice their children seem to understand the world in terms of “rules”. For example, if a parent makes a rule that shoes are not to be worn in the house and then a plumber comes to repair the refrigerator and wears her/his shoes in the home, a child with ASD may become very upset and reprimand the plumber despite her parents’ reassurance that an exception has been made. The insistence on sameness (IS) often falls under this umbrella. These rules may provide a sense of stability, predictability, and consistency. Some researchers and clinicians believe that IS may be somehow associated with anxiety, however, a study by Gotham and colleagues (2013) showed a significant but minimal relationship between the two.

Seem to have typical development and then change/regress

Dr. Kim: Some children with autism spectrum disorder (ASD) reportedly have a history of regression in language, social, or other skills. The rate of regression appears to vary greatly across studies depending on the definition or methodology; for example, ~13% in studies using narrow definition of versus ~46% in studies utilizing broad definition of regression. By nature, most studies relied on parental reports, which are not free of recollection bias. Combined together, a recent meta-analysis reported prevalence rate of regression 32.1%, occurring at mean of 1.78 years.

Many studies have tried to identify risk factors for regression by comparing children with ASD who have regressed and those that haven’t had any regression. In all these studies so far, no differences have been found between children with regression and those without regression in terms of potential causative factors for the regression. For example, children with regression do not have higher rates of pre- or peri-natal complications than children without regression suggesting that these complications are not contributing to the cause of the regression.

One small study reported that about 3-7% of children with R-ASD reportedly showed a correlation between seizure onset and regression. However, it is still not clear if seizure was the cause for regression in these children. There are separate clinical entities, such as acquired epileptiform aphasia (AEA) or continuous spike and wave during slow wave sleep (CSWS) that may have similar clinical/behavioral presentation as R-ASD. Some studies also suggested a “double-hit” mechanism: environmental stressors may interact with genetic susceptibility to result in regression. One possibility is that regression may reflect the late results of congenital dysfunction that is present but silent in early development. Another possibility is that regression occurs as a result of changes in brain development caused by another pathological process (i.e., epileptiform abnormality). These possibilities need further investigation.

In summary, history of regression has been reported in about one third of children with ASD. A few possible mechanisms for regression have been proposed but no one mechanism appears to play a major role in regression. Studies are also inconsistent regarding the functional outcome of R-ASD versus NR-ASD. Some suggest poorer outcome in children with R-ASD; whereas others do not support this observation. Regardless, in case of suspected regression, parents should bring their concern to the primary care physician to rule out possible psychosocial stressors or medical conditions, such as acquired epileptiform aphasia (AEA) or other genetic abnormalities associated with regression.

Barger B.D. et al. J. Autism Dev. Disord. 43(4):817-28 (2013)
Stefanatos G.A. et al. Neuropsychol. Rev. 18: 305–319 (2008)

Have trouble with receptive language

Jo: I have two comments for this question. First, many kids with autism struggle with joint attention – the idea that two people can have a shared focus of attention and conversation. For instance, when I point to a plane and say “plane!” that triggers most learners to look at the same thing I’m looking at. That helps them attach the sounds “plane” meaningfully to the object of shared attention and begin to recognize and understand the word “plane” (that is, build receptive language). Kids with autism who don’t exhibit joint attention may be looking at something completely different than the plane and therefore lose the opportunity to make a language connection.

Another reason that kids with autism may have difficulty with receptive language is that people with autism tend to (but not always) be visual learners. Spoken language is not visual (especially if you’re not making eye contact) and also only lasts for a second. If you don’t hear it, you miss it. On the other hand, visual supports (like social stories, video models and visual schedules) along with alternative/augmentative communication cater to visual strengths. They use a visual medium (e.g. photographs or symbols) that are more permanent, allowing for more leeway the child needs to process it or how many times they need to reference it.

Dr. Chew: The core challenges in all children with ASD are in social and communication skills, which may include the ability to understand what is said or written by others.

Not seem to need much sleep

Jo: I know last time that this wasn’t answered, and I wish I knew this, but I do know that when kids get enough sleep, I notice a difference in behavior and attention so put me on the list of people who want someone to figure this out!

Dr. Chew: Sleep disturbance is common in children with ASD (40-86%). They don’t necessarily need less sleep but they tend to have more difficulty falling asleep and staying asleep. This could be related to the core behavioral deficits in individuals with ASD. For example, they may be less aware of and attentive to environmental cues that influence the sleep-wake cycle. Some researchers are also looking at melatonin levels in children with autism. However, we don’t yet have a definitive answer and the disturbance is likely due to a combination of factors. The important thing to remember is that children with autism need to get adequate sleep just like their typically developing peers – but this may take more support and professional help. If your child is having difficulty with sleep you should speak with her/his primary care physician about your concerns.

Once again, we’d like to thank our panel for their answers to the curious things that some kids with autism do. Please share your insights with us!