The majority of the experience that I've had, both before and after graduating from OT school, has been working with individuals with autism. I've seen the entire spectrum, from being on a team diagnosing young children, all the way through working with adults with autism. I practice in a variety of environments with children with autism, such as some home-based services, schools, and community-type services. I have a wide range of different types of experience working with individuals with autism, as well as their families and caregivers.
Today I'm going to provide an overview of autism, as well as looking at the process of setting up an intervention and implementing a plan for an individual with autism. It's important that we first understand the diagnosis of autism. People who haven't had much experience working with individuals with autism sometimes make generalizations based on one child they've met before, or an individual they used to know a long time ago, or a movie they've seen. It's beneficial to get everyone on the same page regarding the diagnostic criteria for autism.
The Hidden Disability
Autism spectrum disorders are often referred to as the hidden disability. Autism is not a disorder that can be identified by physical characteristics. It is a brain-based disorder. Individuals with autism look just like everyone else, which can be both a pro and a con. It is a pro, in that they can blend in with other children. However, it can be a con in that out in the community (e.g., at a grocery store), the child will have a meltdown, and people will judge the parents and offer unsolicited advice. This also occurs in schools. When we see individual students with autism in the school, especially students that have higher academic scores in the regular classroom, our expectations can be quite high. In some respects, this is a good thing; however, we need to remember that they do have a brain-based disorder and they're going to learn a little bit differently. Also, we sometimes forget that these individuals can have a lot of challenging behaviors.
Recently, I was performing a consultation in a school. One child, in particular, was exhibiting a lot of challenging behaviors and having a lot of trouble in class. The teachers and staff were of the opinion that he did not have autism. I asked, "How many students have you worked with who have had autism?" One response I received was, "Well, I've worked with a couple over the past several years, and I've just never seen anything like it." I had to remind them that every child with autism, just like every child without autism, is different from the next. We're going to talk today about some of the common core characteristics of autism, but remember that it is a spectrum, and we're going to see a lot of differences across that spectrum.
According to the Centers for Disease Control (CDC), autism is more common than pediatric cancer, diabetes, and AIDS combined. During the 1990s, there was a 172% increase in autism diagnoses. In fact, one percent of people in the entire United States population is identified as being on the autism spectrum. Per the CDC, the autism prevalence rate in the U.S. has progressed over the last seven years as follows:
- 2007: 1 in 150 children
- 2009: 1 in 110 children
- 2012: 1 in 88 children
- 2014: 1 in 68 children
This is why it's so important that we all get trained. It is a community issue and we have to create a village for families and for schools. In the past, there was not nearly the prevalence and awareness like there is today. Individuals with autism and their families need our support and understanding more than ever before.
Causes of Autism
We know that autism is a neuro-developmental, brain-based disorder. We know that there is no single cause. Currently, there is a lot of money being spent on autism research. Both genetic and non-genetic factors play a role. One of the popular theories right now is what's called a "two-hit" theory. In other words, certain individuals are genetically predisposed to having autism, and then an occurrence in the environment or in utero triggers the autism. There may also be a genetic component, and although researchers are narrowing it down, the specific gene has not been isolated yet.
The study of autism is challenging because it is a spectrum. Some individuals with autism are non-verbal and require a lot of support. Other individuals never stop talking and require support to a lesser extent. Researchers are making headway, but we still don't know for sure what the genetic piece is. At our Health Sciences Center here in Oklahoma, they are trying to identify very early signs, because the earlier that autism can be diagnosed, the better the prognosis. They're looking at brain scans and CAT scans of newborns at OU Children's Hospital, and then following up with those babies six months to a year later, to see if they can track some of those early signs.
Some studies have suggested that children born to older parents are at a slightly higher risk of autism. Additionally, a small percentage of children born prematurely or with low birth weight are at higher risk. There are also some harmful drugs that, if taken during pregnancy, have been linked with a higher risk of autism. The CDC's website has a lot of useful information about the statistics, the causes, and other things associated with autism.
Genetics in Autism
Researchers who have studied autism patterns in twin siblings have found a higher risk of having autism in identical twins. If one identical twin has autism, the other one also has autism 60-90 percent of the time, suggesting a strong genetic link. The risk in fraternal twins is much lower (between five to 10 percent). With the broader phenotypes, if one child in a family has autism, five to 25 percent of their siblings might also have a autism or a related disorder (social dysfunction or communication issues). Furthermore, in children with autism, it has been found that 15 percent of parents share some of the same traits as their children. In my experience working with children with autism, I have observed that many of the parents do exhibit the same characteristics as their children. We must remember that as we work with parents, not to become frustrated, and to show as much patience with the adults as we do with the children. Autism doesn't stop at childhood -- it carries into adulthood. As such, we also need to provide the parents support and understanding.
Growth of Autism
Why are more and more people being diagnosed with autism? There are several theories, the main one being the increased awareness of autism. For example, April is Autism Awareness Month, which didn't exist 20 years ago. People know more about what autism is, they are aware of the signs. Additionally, advancements in technology have allowed us to have access to more information than we had in the past. There are also more screening tools and services, so now more physicians are screening for autism. Furthermore, anyone can go online and access M-CHAT, which is a free screening for autism. Also, we have changed and clarified how autism is defined and diagnosed. In the past, a lot of individuals with autism wouldn't have received the appropriate diagnosis. They might have been labeled as having "mental retardation." We have gotten better at defining what autism is and what it is not.
More children with milder symptoms are being diagnosed. Although the DSM-5 has changed to where we no longer have the category Asperger's, we do still look at that social piece, which is a huge part of the diagnosis of autism. Even though a lot of children I work with have IQs way above mine, they're lacking social awareness. Those children are still getting a diagnosis of autism, where in the past, they probably wouldn't have received any type of diagnosis or label. Finally, we are analyzing and considering the effect of environmental influences on autism. That may include things in the environment that are happening in utero or sometime shortly after birth, which might be impacting this growth of autism.
Is autism an epidemic? As we stated earlier, there are more cases of autism diagnosed, because overall awareness has increased among parents and professionals. Autism is better recognized and identified (high/low functioning). There have been changes to the diagnostic criteria, such that ASD can be identified and labeled across the continuum. Although some people can be very concerned about their children being labeled, we're trying to get families to understand why it is important to diagnose autism. It is important so that they are able to access the services and support that they need. Children who were incorrectly identified in the past with other disorders are now receiving that autism label that fits them more appropriately.
Brain Basis of Autism
Back in the '70s, when there was a lack of understanding about autism, a theory existed called the "refrigerator mom" syndrome. It was the notion that children got autism because their moms were cold to them, and they didn't love them and care for them. Thankfully, that theory has been ruled out. We now know that autism is not a behavior disorder. It is not a mental illness. It is not the result of bad parenting. It is not a child willfully choosing to be unruly. Autism is a brain-based, neuro-developmental disorder.
Research has shown that the brains of individuals with autism are structured differently and function differently than those without autism. Studies have shown differences in brain size (with autism, brains are enlarged), as well as differences in chemistry and social circuitry. In addition, we all have brain centers that process social information and visual static information. In people with autism, this circuitry is different; these connections do not occur the same way as those without autism. In another study, researchers found that when people with autism look at human faces, they use the same area of their brain as when they look at objects. When people without autism look at faces, they use a different area of their brain (the social area of their brain); as such, they pick up on the social cues inherent in facial expressions.
Another brain-related element affected by autism is called theory of mind. Theory of mind is our ability to think about something from another person's perspective. This is a core deficit in the social skills of individuals with autism. For example, even though I can't see or hear the webinar attendees right now, I know now that you're probably not sitting there only thinking about autism. You're likely thinking about what to do when your children get home from school, or what you are going to make for dinner tonight, or what activities you have going on later. I know you're thinking about that because I'm using my theory of mind to think about things from your perspective. For individuals with autism, it is extremely difficult, if not impossible, for them to think about things from another person's perspective. Their brain works in such a way that they believe everyone should think the same things they do, and that everyone should know the same information that they have. In their mind, everyone else should see things the same way they do.
In school systems, I often have to work with school teams to remind them to come from a place of non-judgment when working with children who have autism. It can be difficult for parents of children with autism because they are in survival mode all the time. I know many parents have had to quit their jobs and completely rearrange their entire life. Another sad consequence is that parents of autistic children have a high divorce rate. We need to remind school staff that the parents are doing the best they can with what they have and to try and use our theory of mind to understand where they are coming from.
On a daily basis, I work with children who have significant behavior issues; some have autism, some don't. I constantly have to remind school staff that they're not choosing to act out like this. If they had another way to get their needs met, they would have done it. No child with autism wants to get in trouble. The reality is that they don't comprehend the impact of their behavior. Furthermore, their inability to understand nonverbal language, combined with their inability to change their facial expression based on how they are feeling, may result in misinterpretation of their behavior, and ultimately judgment. We need to be ever mindful of the fact that autism is a hidden disability.