The Importance of Early Intervention

“I have never met a person with autism who felt that being told of the diagnosis-or becoming aware of it over time- was a negative or damaging experience.”

This week I started reading a book called Uniquely Human by Dr. Barry M. Prizant which brought into attention how important early intervention and diagnosis of autism really is. Autism is much more common in today’s society than many people might think. According to the United States Centers for Disease Control and Prevention (CDC), autism now affects about 1 in every 68 children. This is a startling considering the rate was estimated at 1 in 88 in 2007 and 1 in 1,000 just ten years ago.

With this staggering increase in diagnosis, comes the fear of misdiagnosing. Is this a genuine diagnosis or are we mislabeling the child? Recent studies have shown that in order to prevent labeling young children (ages 1-3) as “autistic” for the rest of their lives, a diagnosis is sometimes delayed. Instead of receiving an early diagnosis, about half of the young children referred for diagnosis are put on a “watch-and-wait” list. The reason for this is to ensure that, when these children get the diagnosis, it is more steady. Adding to this issue is the fact that Autism is a spectrum disorder. Individuals diagnosed with Autism may have symptoms that overlap with other disorders, and that does not provide for a comprehensive diagnosis.

Although, despite the possibility of a misdiagnosis, autism therapists and doctors agree that an early diagnosis can allow for an appropriate educational and treatment program. For the longest time it was believed that Autism couldn't be diagnosed until a child was 3 years of age or older. Today, even that's considered late. With advancing technology and new screening tools, doctors are able to identify Autism as early as 18 months of age or sometimes even younger. The faster a diagnosis is made the faster treatment can be provided.

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ABA: The Scientific Approach to Autism Treatment

Throughout the last few weeks, I have been hinting at a broader form of Autism therapy known as ABA or Applied Behavior Analysis. Recently, I have talked about PRT which is a form of ABA. ABA is the science devoted to the understanding and improvement of human behavior. “Applied" means practice, and "behavior analysis" is the application of the different principles of learning and motivation. It might seem odd to use the word "behavior" when talking about basic life milestones like talking or following directions but with ABA all “behaviors” can be taught and encouraged.

Usually as we grow and develop, we learn and evolve with our environment. Our surroundings, cultures and situations help us learn different social skills and the “rights” and “wrong” of behavior. Someone diagnosed with Autism has difficulty communicating and learning from our daily environment. That does not mean they cannot learn from their environment, but that it takes a very structured routine and arrangement where conditions are optimized for them to acquire the same skills that are considered "natural" and “normal”. ABA is all about how to set up the environment to improve behaviors that are the most meaningful for the individual and those around them.

The word “behavior” sometimes carries a negative connotation in society. What exactly is a behavior? A behavior is anything that is observable and measurable. A behavior is not an type of emotion, a state of mind or feeling and definitely not something that is undesirable. With ABA, therapists teach and monitor behaviors that can represent emotions and that are important to the quality of life.

There are many important components to ABA therapy. To teach ABA methods, a behavior needs to be isolated and controlled. Therapists aim to work on one behavior at a time, because changing many behaviors can confuse what exactly caused the change in the individual. These changes to behavior need to last over time as well. The child must be able to general the skill outside the realm of the clinic or session or working not that behavior is ineffective. For example, if a child is toilet trained at a clinic, but is unwilling to use the restroom at home or school then the behavior is not generalized. The results also need to effective and practical as well.

In later blog posts I will explain the different ABA based interventions as I observe them during sessions, and provide examples of what this form of treatment looks like. For anyone still confused about this type of treatment, I have attached a video that gives a brief introduction to the basic concepts of ABA.

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"How Well is an Autism Diagnosis Communicated to Familes?": Introduction to the Questionnaire

As I mentioned in my first blogpost, a major component of my research is understanding how well a diagnosis of Autism Spectrum Disorder (ASD) is communicated to families and what can be done to improve the process. Over the next few months as I continue to observe how autism treatment is communicated to families, I will also conduct an experiment. My hypothesis is that a lower understanding of an ASD diagnosis leads to a more stigmatized view of the disorder and a more uncertain idea of how to proceed with management and treatment after diagnosis. To test my hypothesis, I am interviewing families of children with an Autism diagnosis (between the ages of 0-18) through a survey or a personal interview and asking them different questions about their experience of receiving a diagnosis.

I have attached a link to my survey which gives an idea of the types of questions I am asking and a framework for upcoming posts where I will discuss the results of my findings. This survey will be handed to interested families at SARRC, and those who are a part of the PRT and ABA therapy program at SARRC well. I will also try to survey families outside of SARRC.

If you happen to know any families that have kids with ASD, please share this survey or send them a link to my blog! I look forward to sharing what I learn through this survey! Stay tuned!

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“Some Things Are More Motivating Than Others”: PRT With Parents

Welcome Back!

This week I observed Pivotal Response Treatment (PRT) being performed for the first time in a session and it was quite the learning experience!

My morning began with an interesting twist to what I was expecting. Instead of going outside to watch therapy sessions with the clinicians, I watched parent-training live with the help of a camera. As the clinicians interacted with the parents and kids, I observed through a screen. Because of this, I was able to learn in an nice environment without having any distractions or being a distraction to the parents or kids myself. The parents use the camera to watch PRT as well, and were informed that a intern was watching them.

During the session, the clinician showed the parents different ways to use PRT treatment with their child. The parents were first asked to follow their child’s lead and allow them to freely select toys from the classroom without any regulation. The child in this example wanted to play with a ball. After a few minutes of free playing, the parent and the clinician tried to identify what the child liked about the ball. The clinician asked questions like “What is it about the ball that motivates her?” and “What does she want to do with the ball?”. After the parents had identified that, which in this case was that the child loved the way the ball bounced up and down, they were asked to slowly gain control of that preferred aspect of the object. So the parents began to bounce the ball up and down as well and would only let go until the child said “my turn" or "ball please". In this way the child was only given access to the motivating object or activity until they gave a verbal response. After a response was given, the parent would quickly give the child back what they desired and the process would start all over again.

With each child the activity or preference of toy was different and the process was modified to fit their likes and dislikes. At the end of the session, the clinician offered ways to utilize PRT at home and in everyday situations.

Although I have only been onsite for a few weeks, I have learned many different things and observed all kinds of interactions and behaviors. If you have any questions about the sessions or the process, feel free to leave a comment!

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“Does an Autism Diagnosis Change How We Perceive a Behavior?”: Pivotal Response Treatment and More!

Yesterday was my first day at SARRC. Trapped in traffic for a good hour, I still somehow managed to arrive ten minutes before the program started. Fortunately, because of this I able to introduce myself to some of the families and interact with the kids. After greeting everyone, Brittani the supervisor of the program, gave me a tour of the center.

Looking around, I was mesmerised by the beauty of SARRC. Quotes in every corner, a lobby filled with pictures of children and toys, everything had a homey and positive vibe to it. After that, I was left to observe the children during their free time in the SARRC playground and the parents left with Brittani to have a discussion. Some kids cried, some questioned where their parents were, and others ran to enjoy their few moments of bliss. The clinicians did a great job of helping both the family and kids handle the transition. Later on, we moved into a classroom where I got to observe the therapy sessions with the kids which was truly amazing.

Then came probably the best experience of my entire day. I was allowed to sit in a discussion about Pivotal Response Treatment (PRT) with the parents of all the children. PRT is the main focus of this program and is a form of ABA therapy (more on ABA next week) that is both play based and child initiated. Rather than targeting individual behaviors, PRT targets “pivotal” areas of a child's development such as motivation and the initiation of social interactions. The concept of the therapy is that every behavior has a consequence and depending on that consequence the likelihood of that behavior will change. So if a child makes an attempt to say “ball” the reward will be the ball, not candy or food. Parents asked several questions all of which Britanni answered and gave several examples and situations unique to their child.

The thing that stood the most with me from this discussion was a comment that a parent made. They stated that it is hard to differentiate a behavior as “appropriate” or “inappropriate” between autism diagnosed children and their normal peers. There is a negative connotation attached to the behaviors of autistic children, and sometimes other kids also act the same way without the concern of their parents. Brittani’s response to the question was equally as interesting. She said that the distinction between a right and a wrong behavior was in fact difficult because all children struggle with behavioral issues because there is so much to learn.

This first day was a complete experience! I got to learn many new things about Autism and PRT but also question certain ideas that I had never thought about before. If you have any questions about my day or PRT, feel free to leave a comment. See you next week!

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“It's All a Matter of Perspective”: An Introduction to Autism

Hello!

My name is Shambhavi Mishra and I am a senior at BASIS Phoenix. At Basis, students conduct a research project which offers them an opportunity to demonstrate the knowledge and research skills learned and study in the subject area they are passionate about. I have always been interested in studying Autism and the practice of psychiatry which is the focus of my project.

Autism spectrum disorder (ASD) is a complex neurological and developmental disability that can cause social, communication and behavioral challenges. According to the estimates from CDC's Autism and Developmental Disabilities Monitoring, about 1 in 68 children have been diagnosed with Autism Spectrum Disorder. Autism is placed on a spectrum that varies between individuals. The term “spectrum” refers to the wide range of symptoms, skills, and levels of functioning that can occur in people with ASD. Some children and adults with ASD are able to perform all daily life tasks while others require some type of support. As a result, ASD is communicated in a way that varies between individuals; often leaving patients and families uncertain about the genetic and environmental foundations that cause the disorder and the skills necessary for managing it. Understanding ASD is important as it can help educate families, patients and physicians about identifying and managing the disorder.

The goal of my project is to to better understand the experiences of parents with children diagnosed with Autism Spectrum Disorder. My internship is with Southwest Autism Research & Resource Center (SARRC) where I will work with teens diagnosed with Autism and help them improve communication and social skills. When given the chance, I will also observe parent training sessions offered by clinicians. I will also be interviewing families of children with an Autism diagnosis (between the ages of 5-18) through a survey or a personal interview and asking them different questions about their experience of receiving a diagnosis.

Through my research, I hope to raise awareness and increase the public understanding about the disorder and learn more about the way ASD is communicated to families.

For more information about my project, I have attached my proposal here. If you'd like to subscribe there's a link at the bottom of the page. I am very excited to begin my project from tomorrow!

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