"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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