Wrapping Things Up

Hello everyone,

Thank you so much for following this blog! During these few weeks, I have learned so much about ABA therapy and the world of ASD diagnosis and treatment! It has been a great experience, and I am glad I got to share it with you all. Thank you for taking the time to read and comment on this blog.

For those interested, I have attached a pdf file of my final presentation. Once again thank you!

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The World is Overwhelming Sometimes: ABA Sessions

So far in this journey of understanding ABA therapy, I have covered everything from emotions and basic prompting to larger applications like generalization.

Many people on the autism spectrum have difficulty processing sensory information. These sensory differences can affect learning and day to day behavior.

Sometimes an autistic person may behave in a way that you wouldn't immediately link to sensory sensitivities. A person who struggles to deal with everyday sensory information can experience sensory overload, or information overload. Sensory overload occurs when the brain and the nervous system  become bombarded with too much sensory input from one or more sensory systems and cannot process and sort out the incoming sensory messages. This can ultimately cause stress, anxiety, and possibly physical pain and can result in withdrawal, a meltdown and change in behavior and like not adhering to directions.

The main areas of processing difficulties are seen when a child is hypersensitive or hypo-sensitive to the seven senses which are sight, sound, touch, taste, smell as well as balance (vestibular) and body awareness. For example, a child with hypersensitive vision could have distorted vision when objects and bright lights appear to jump about. They may find it easier to focus on one spot of detail because the surroundings can be overwhelming especially if it is distorted, too bright and fragmented. They may avoid certain rooms, lighting, objects as it may increase their sensitivity.

To help someone on the spectrum with sensory overload, watch and be prepared. Take note of the environment at all times and keep it away from the triggers when possible. Watch for signs and sensory signals of possible overload and respond right then and there. Don't push through, and be there for them.

I hope you have all enjoyed these ABA sessions as much as I have!

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A Look into Autism Misdiagnosis

Over these last few weeks, I have been analyzing the results to my survey and trying to find the best way to present the most important responses and ideas to the public. For those who may not be familiar with my ASD diagnosis questionnaire, I have linked a previous post where I thoroughly describe its focus. Please check that out before continuing on with this post.

While I received some interesting responses about certain aspects of the diagnosis process, there were some additional questions in the questionnaire that did not make it to the final presentation but gave striking results as well. One of these was “Has your child been misdiagnosed with another disorder?”. The options for the responses listed various disorders like ADHD (Attention Deficit Hyperactivity Disorder), OCD (Obsessive-Compulsive Disorder), anxiety disorder and other disorders common to ASD. One of the responses was also "not sure what these disorders are". Although I made this an optional question (parents who took the survey were not required to answer this question unless they voluntarily opted to), I still got ten interesting responses.

The graph above displays the counts of misdiagnosis (parents could pick more than one) and what disorder the child was misdiagnosed with. With the disorders listed, the count for ADHD and OCD is overall the highest because they were both interchangeably picked by multiple parents. This can be accounted to the fact that the criteria for an ADHD and OCD diagnosis incorporates details similar to an ASD diagnosis. For example, according to the DSM-IV, both ASD and ADHD have a requirement for “sufficient inattentive and/or hyperactive impulsive symptoms”, which can potentially make it harder to formulate a correct diagnosis. This is why being diagnosed by the correct specialist like a child psychiatrist is so important as they are better informed about the difference between these disorders.

Astonishingly, also about half of the parents who responded to this question were not aware of these disorders. This brings forward the importance of awareness. If more families and parents were familiar with different disorders and the common misdiagnosis of ASD, then they could better understand their child’s diagnosis.

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Emotions: ABA Sessions

Sometimes it is hard for us to express our emotions to others. May it be because a certain situation, event or even time of the day, it's not always easy to tell someone how you feel. Unfortunately, for those on the spectrum it’s even harder. 

There is a persistent misconception that people with Autism lack empathy and cannot understand emotion. Autism doesn’t make an individual unable to feel the emotions, it just makes them communicate and perceive emotions and expressions in different ways. In fact, various people on the spectrum (about a half) suffer from symptoms of anxiety and depression that affect their quality of life. Although, not a lot is known about the causes of these difficulties or how best treat them. 

Studies also suggest that autistic children have greater difficulty with emotions “that are much more socially oriented" which can be anything from jealousy to pride. They also struggle with reading emotions in other people. This is accounted to problems with facial processing.  There is an area in the brain that becomes especially reared with facial processing and recognition. Over time, this area becomes stronger. In individuals with ASD, that is not the case. The amygdala (plays a play a key role in the processing of emotions) is also not well regulated which affects the processing of emotions.  Dr. Susan Bookheimer, a professor of cognitive neuroscience at UCLA, states that “rather than lacking emotion, it’s likely that autistic people struggle to “think through and work through” the emotions they experience.”

To encourage emotional developments, ABA therapists recommend these following ideas. 

1. Using emotion cards: Many therapists utilize cards that have  pictures of faces, either real or cartoon, to teach students basic emotions.

   

   This is an example of a sample emotions card.

    
2. Being responsive and bringing up different emotions in different situations: For example, if you are going to the movies bring up a conversation like “ I’m so excited to go to the movies!” This reinforces the emotion and helps the child better associate different emotions with their appropriate situations. 
3. Be involved. Read different stories, watch movies, and go to fun events with the child. Help them get exposed to the natural stimuli where they can label emotions in natural contexts. Something like, “Look he is crying, he’s sad”when watching a movie can reinforce this skill.

Emotion plays a big role in daily life. Though it cannot be directly taught, it can definitely be encouraged. 

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Wide Awake: Autism and Sleep

Falling asleep and staying asleep are particularly common among those on the spectrum. According to Autism Speaks, 80% of children with ASD have sleep-related problems. Insufficient sleep can worsen behavioral challenges, cause aggression and interfere with learning.

Recent studies have opened up some potential reasons for poor sleep in those with ASD, but more research is still underway. One possible cause includes abnormalities in brain systems that regulate sleep. Hormone levels are also being evaluated to know if they have any effect on sleep. Other medical issues ( epilepsy or gastroesophageal reflux are more common to those on the spectrum) can often contribute to difficulty falling asleep. Sleep disorders common in the general public (sleep apnea, sleepwalking, restless legs syndrome) can impact sleep as well

Fortunately, establishing good sleep hygiene can improve a child’s sleep. Autism Speaks recommends having an appropriate sleep environment that fits the child’s needs, a good bedtime routine and schedule, and exercise.

If the cause can be more specifically pointed, then better treatment approaches can be made.

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Applying What You Learn: ABA Sessions

What is the point of learning a new behavior or skill if it cannot be applied in different situations? Is a skill truly acquired if the student is unable to apply it outside the classroom or house?

Generalization is the “spreading” or “expansion” of teaching beyond what was directly or intentionally taught. It is the process of taking a skill learned in one setting like home and applying it in other settings like school or a store.  If anyone (on the spectrum or not) can do that, then they are exhibiting generalization.

Generalization is an integral part of ABA therapy and all learning. If you can teach a child to say "thank you" in the therapy room, but they never respond to other peers or adults out of the session then what is the point of that? How does the skill of saying "thank you" benefit that child? Ultimately, the goal of teaching any skill or behavior is that the child can apply it across many different environments and multiple people.

People on the spectrum tend to have a harder time generalizing. While they may be able to demonstrate a given skill, generalization is not automatically guaranteed if they are not being prompted or something about the presentation is a little different than it was when it was originally taught. Recently, one of the kids I have gotten a chance to observe is learning how to appropriately cross the street. Within a few weeks, he is able to demonstrate how to cross the street with play cars in the session. He will stop the play figure if a car is incoming and look left and right. However when taken outside to do the same thing with real cars, it is harder for him to apply the same skill. An open environment brings more distractions and stimuli than the inside.

There are many ways to generalize, including across time and people, across settings, and across stimuli.

1. Time- A child learns his numbers up to 20 last month. Today, he can still remember them.
2. People- A child can respond the same way to different people.
3. Settings- A child learns his numbers up to 20 in a ABA session. He can use those 20 numbers regardless of the environment (at home, on the playground, in class etc.)
4. Behaviors- A child learns his numbers up to 20 last month. Now he is learning numbers up to 50 and eventually 100. He’s also showing learning how to add and subtract. 

Generalization should be a part of any early intervention from the start. It’s not something extra; if it doesn’t happen, then behavior change is all but meaningless.

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April is Autism Awareness Month!

With a growing prevalence in ASD diagnosis, The Autism Society was founded in 1965 and is a nationwide campaign that helps raise awareness. The first National Autism Awareness Month occurred in April of 1970. Since then, April is known as the time where people all around the world show their support for inclusion for those on the spectrum.

What can you do to support the cause?

Wear blue on Autism Awareness Day. During the month of April, there is Autism Awareness Day, when Autism Speaks encourages everyone to be a part of their campaign, Light It Up Blue. Many places around the nation “light up blue” to support people with autism. On April 2 this year, wear your favorite blue shirt to help raise awareness for Autism.

Share the Autism Puzzle. The most recognizable symbol of autism awareness is the Puzzle Ribbon. Sharing the ribbon (on your backpack, car,  different social media platforms) is an easy way to stand with people on the autism spectrum, and spread knowledge to others.

Whether or not you choose to participate and show support this month, the important thing is support. Autism Awareness Month is a great time to show this, but the disorder does not only exist during April, so it’s essential to advocate for those on the spectrum all year-round. Happy Autism Awareness Month!

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Routines and Managing Change: ABA Sessions

Change affects us all. Anything from a delayed flight to a broken phone can bring frustration, panic and anxiety to the best of us. When times are chaotic and things go opposite of the norm, it becomes harder to cope and keep calm.  

Change is especially hard for a person with Autism.

Yesterday, the therapist was running late for the usual 4 o'clock session. The parents had already arrived and the child was waiting patiently until the clock hit 4. In a few minutes, the child started crying and asking where the therapist was over and over again. It was like their whole world had stopped. It was not until the therapist arrived had the child stopped crying.

Routines and rituals are important in the lives of people with Autism. The everyday hustle and bustle that most people view as normal can be overwhelming for those on the spectrum. A daily routine helps create stability and order and gives a clear expectation of what is going to happen everyday. These routines can be any big or small habits like eating at the same type of food for lunch to watching a movie at the same time everyday.

Sometimes even minor changes between these activities or routines can be distressing. Different people on the spectrum respond differently to change. Some exhibit withdrawal, repetitive behaviors, tantrums, or even aggression, while others shut themselves down completely. It is important to remember that these behaviors are typically the result of extreme anxiety and/or inability to communicate their emotions and desires.

When a situation goes out of hand or there is an unexpected change in routine, therapists recommend re-directing the person to a different activity as soon as possible and telling them that the situation cannot be changed. When the therapist was a bit late, the supervisor redirected the child to a different activity like reading a book and told them that “Ella will be here in a few minutes”. Every time the child would ask again, the supervisor would simply ask a question about the book or ask the child to read a page out loud.

Visual schedules and timers can also help prepare for change by clearly  laying out what is happening and when it is happening. These visual supports can help a child understand the order of daily events, the steps involved in daily living skills and any changes in routine that may occur throughout the day.

We cannot control change, but we can do everything to help those on the spectrum be more flexible and tolerant of change.

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"Oh, You Have a Girl. It's Not Autism."

Over the course of this project, I have talked a lot about the increase in Autism diagnosis and the importance of early intervention. However, an article from the Scientific American suggests that these diagnostic methods often overlook girls.

In the article, Kevin Pelphrey, an autism researcher at Yale University, states that he didn’t even notice the disorder in his own daughter, who received a diagnosis at the age of 5. Her brother, on the other hand, was diagnosed at just 16 months. Their mom describes how different the diagnostic process was for both her kids. With her son, it was simple process. Although for her daughter, she went from doctor to doctor and was told to simply “watch and wait”. “We got a lot of different random little diagnoses,” she recalls in the article. “They kept saying, ‘Oh, you have a girl. It's not Autism.’”

The article argues that the criteria for diagnosing Autism (see my post How is Autism Diagnosed? for more information) is created from studies done solely on boys. Girls were overlooked in past studies. Pelphrey and other researchers believe, that women are not diagnosed early because their symptoms look different. Others may not receive a diagnosis or be given a misdiagnosis like attention-deficit/hyperactivity disorder (ADHD) or obsessive-compulsive disorder (OCD).

To look more into how Autism affects women and find ways to meet the needs of women on the spectrum, Pelphrey and team are in the process of studying young girls and women with Autism. This study follows participants over the course of childhood through early adulthood. Girls in the study are also compared with boys that have ASD, as well as typically developing children of both sexes, using brain scans, genetic testing and other measures. These comparisons can help researchers see how Autism differs between both sexes and how social and biological factors impact gender-typical behaviors.

Pelphrey is discovering that girls with Autism are different from other typically developing girls in how their brain perceives social information. However, it is not the same as boys with autism. Each girl's brain instead looks like that of a typical boy of the same age. He accounts this to reduced activity in regions normally associated with socializing (which is more common to typically developing boys). These brain-activity measures would not be considered “autistic” in a boy.

Pelphrey and team are hoping to find more information about this concept through the course of their study. Yet already, the results are quite striking. It brings into question many ideas of gender roles and male bias never associated with Autism before.

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"Practicing Errors Impedes Learning": ABA Sessions

Within an ABA program, a clinician usually employs different types of prompts to help a child achieve a desired behavior or skill. Prompting is extensively used in behavior shaping and skill acquisition. It provides learners with assistance to increase the probability of a desired behavior.

Prompts can be equally useful for helping people both with and without Autism. Have you ever pointed your finger to direct a person in the right direction? If so, you’ve prompted someone. Have you ever used an alarm clock to wake up? Then you have prompted yourself!

Lynn McClannahan and Patricia Krantz of Princeton Child Development Institute  describe prompts as: “Instructions, gestures, demonstrations, touches, or other things that we arrange or do to increase the likelihood that children will make correct responses.” When done correctly, prompting increases the rate of responding while lowering frustration, and helping the individual learn more efficiently. If your friend didn't know how to bake, you wouldn't give them a demand like "make me a cake" and then just stand back and watch them struggle. Practicing errors impedes learning. You would step in and help them succeed. This same idea is used in ABA therapy with prompts. 

Prompting is utilized in many ways during an ABA session , some of which are described below:

1. Gestural prompt- Pointing, nodding or any other type of action the child can watch the clinician do. 
Example: Pointing at an animal to make the child say cow.

2. Full physical prompt/Hand Over Hand (HOH)- Leading the child by the hand, or physically moving a child to guide them through the entire activity. 

3. Partial physical prompt- The clinician provides only some assistance to guide the child through part of the requested activity.

4. Full verbal prompt-  The clinician verbally models what the desired response of the child is. 

Example:“What is that toy?" 
                   "Say, block”

5. Partial verbal prompt- The clinician  provides the child with part of the response to the question asked or just says the first word or sound. 

Example: “What is that toy? Say, bl...”

6. Visual prompt- A video, photograph or drawing on a medium like paper, a whiteboard, or  an electronic device. 

Example: Clinician asks the child to “Clap your hands.”
Clinician prompts the child by playing a video of a person clapping his hands.

7. Auditory prompt- like an alarm or timer.

Example: Clinician asks the child to, “Clean up your toys in 5 minutes.”
Clinician prompts the child by setting a timer to go off in 5 minutes.

Ultimately prompts can become crutches; they’re a kind of artificial support. So, while prompts are a useful tool in teaching and the first step in helping a child fully learn a skill on his own, it’s important that the child is not always been prompted to perform a task.

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Different, Not Less

“Pain can be alleviated by morphine but the pain of social ostracism cannot be taken away”- Derek Jarman

Social ostracism is a type of rejection. It’s the feeling of being an outcast, of being judged or ignored by the group, or given the silent treatment. It can mean anything from subtle forms of conformity or control to complete psychological isolation. Eventually, ostracism threatens self-esteem and sense of belonging.

Unfortunately, in today’s societies a stigma is attached to autism that influences these forms of social rejections. In different ways and to different degrees, many people view autism as a source of disappointment, frustration and shame. Stigma also keeps families from seeking a diagnosis and treatment for their children, from participating fully in their communities, and from enjoying the same quality of life as everyone else. Simply put, stigma influences public ostracism.

When speaking with a clinician about this topic, she mentioned that ABA therapy works on the smallest of the smallest skills for this reason. Kids with autism (or any behavioral disorder) are ostracized if even the simplest behaviors are slightly different from the rest of their peers. For some on the spectrum, it might be that the do not desire any type of friendship or relationship (except with a close family member or friend) and could care less about "fitting-in" with "the group.” There are many others on the spectrum that are extremely sociable and love be a part of different activities, but due to their behavioral difficulties are unable to “fit in" and are eventually ostracized.

We ended the discussion with a very important quote: “different, not less”. That is a simple counterpoint to stigma we should all understand when encountering people who are different from us and don't necessarily fit our social standards.

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"To Be" or "Not To Be" That is Echolalia: ABA Sessions

While observing an ABA session this week, one of the things I found common in many children was the way they responded during conversations. They would constantly repeat certain words and phrases and only those phrases.

After the session, I learned that the term for this is Echolalia. This form of speech involves the repetition of words and sounds a person has heard or been asked recently.

Most children in early childhood mimic words and phrases that they hear their parents say or the people around them. Mimicry is an important stage in development that ensures a child is leaning core language skills.

However, what if this mimicry goes beyond early childhood? What does this mean for the child?

Echolalia is commonly seen as a “symptom” of autism. Parents usually point out that their child is "repeating what they say" during a diagnosis. There are two forms of echolalia called  immediate echolalia and delayed echolalia. Understanding the presence of echolalia helps understand how child is trying to process language.

Immediate echolalia refers to words or phrases echoed immediately after they are heard. For example, during the therapy session the clinician said, “time to go play,” and the child replied, “time to play”.  By repeating phrases the child does demonstrate that he or she can produce speech and efficiently reproduce it, but might struggle to comprehend what is being said.

For many on the spectrum, this form of echolalia is a way of communicating. The clinician explained that "sometimes immediate echolalia is necessary and for many  is a way to remain in a conversation and give an answer without feeling nervous or anxious”. It's like a desire to be included in a conversation without being sure of what to say exactly. While many parents feel frustrated and concerned for their child, immediate echolalia is still a good indicator that the child is trying to communicate.

If a child continues to repeat phrases for a longer period of time, then it is referred to as delayed echolalia. The phrase is repeated a day, month or even a  year after it was originally heard and can may pop up at any time or place. For example, the child I was observing loves to talk about nursery rhymes. Thus, he’d repeat “clap your hands” randomly as if he was watching a video at the moment.

The clinician explained that this other form of echolalia was a way to sometimes express mood. If a child is feeling happy and excited he’ll say something like “clap your hands” which is something he associates with a happy situation. This helps kids on the spectrum join in conversations without fully understanding the context. They will pick up on the mood of the conversation and repeat sentences that they associate with that mood.

To improve speech and prevent constant echolalia, therapists recommend PEC Cards (like cards with different pictures). Picture cards can provide visual cues that can help formulate different conversations. For delayed echolalia, redirecting conversations help bring the child back on topic.

See you next week with another topic from an ABA session!

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How Is Autism Diagnosed?

Getting a professional evaluation for autism can mean access to the right support and treatment. Since my project is predominantly focused on the communication of a diagnosis to families, understanding how the process works can be very helpful. Currently, there is no formal medical test that can thoroughly diagnose autism. Instead, specially trained physicians and psychologists administer autism-specific evaluations.

After birth, every child is recommended to be regularly screened for developmental milestones during doctor visits. If a screening or parent raises concerns about the child's development, the doctor refers the child to a specialist who conducts an evaluation.

The Screening Process

The first step of the diagnosis process is a screening. A screening of Autism mainly driven from the parent's response to different questionnaires, and their observation of their child's behaviors.

If a child is of preschool age, then a pediatrician carries out a ‘screening interview’ called a The Modified Checklist of Autism in Toddlers (M-CHAT). This does not provide a complete medical diagnosis, but the answers on this questionnaire are a good indicator of whether the child should be further evaluated by a specialist.

Similar screening tools such as the the Screening Tool for Autism in Two-Year-Olds (STAT), and the Social Communication Questionnaire (SCQ) (for children 4 years of age and older) are initially used as well to determine if a complete diagnostic evaluation is required.

Comprehensive Diagnostic Evaluation

The second stage of diagnosis is a comprehensive evaluation. This helps determine if the the child has ASD or another developmental disorder. It also provides parents a framework for what the child's strengths and needs are, which is important to understand before begining any treatment plan. This evaluation is usually done by a team of professionals that includes a psychologist or psychiatrist, a speech therapist, or other professionals who diagnose children with autism.

A comprehensive evaluation includes a full neurological and genetic assessment, along with cognitive and language testing (speech and language assessment). Specific autism diagnosis assessments are also used such as the Autism Diagnosis Interview-Revised (ADI-R)  and the Autism Diagnostic Observation Schedule (ADOS-G).

The ADI-R is an interview with parents that contains over 100 questions. It focuses on behavior in three main areas: social interaction, communication and language,  and restricted and repetitive interests and behaviors. The ADOS-G is an observational measure that allow the examiner to observe the occurrence or non-occurrence of behaviors that have been identified as important to the diagnosis of autism.

Another instrument used by professionals is the Childhood Autism Rating Scale (CARS) which is given to kids over the age of two and assess the child’s body movements, adaptation to change, and verbal communication. The examiner observes the child and also obtains relevant information from the parents. The child’s behavior is rated on a scale based on deviation from the typical behavior of children of the same age.

This chart from the CDC provides a breakdown of the process.

A diagnosis brings relief to those who have struggled with different behavior difficulties but didn't understand what was causing the challenges. For younger children, it can help determine the earliest intervention possible. A diagnosis can open access to management plans (like therapy) that can improve different skills and ultimately the quality of life.

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Distractions and Eye Contact: ABA Sessions

“I really don’t understand why it's considered normal to stare at someone’s eyeballs” - John Elder Robinson

Many children with Autism struggle with eye contact. Making eye contact is an important skill because it lets someone know we’re engaged and interested in the conversation and that we acknowledge their presence. This makes it one of the first concerns of many parents and one of the biggest goals they want to see their child accomplishing through a treatment program like ABA. Much of ABA instruction also involves specific demands, and if a child is not properly attending then it can be difficult to provide the most effective treatment.

What someone believes to be indicators of “paying attention” (which for many is constant eye contact) can actually be challenging behaviors for a child with Autism. Some situations and behaviors can make paying attention difficult. For example, yesterday I sat in an ABA therapy session that was focused on how frequently the child made eye contact during different activities. Because the activity was one of the child’s favorites (Legos), he had difficulty paying attention to the therapist. The therapist  had to give him demands like “can I have a Lego piece?” multiple times to get the appropriate response. To get him to eventually move on from the activity, the therapist set a timer that provided the right structure.

Social difficulties also correlate with lesser eye contact. For some children, looking directly into someone’s eyes can make them feel anxious. Even standing in close proximity to someone can be a very uncomfortable which makes it harder to pay attention.

The Autism Guide advises that for families with kids who struggle with Autism one of the first steps is to request eye contact daily in some form. “Each day, say your child’s name followed by “look at me.” Do this every five minutes for one hour and note whether or not the child makes eye contact. When you say the child’s name and the phrase “look at me,” only say it one time in a firm voice, but do not shout, or have a pleading tone in your voice.” Another way is to make sure the activity is child specific. By giving them options like “should we play with the cars or the train?” the child is involved in the structure of the session and more inclined to pay attention.

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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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