by Jessie Cooper | Oct 14, 2021
Over the course of the past year, I’ve been writing to you about standing in your own worth, your truth. I’ve taken you down many paths in the forest of life and shared both challenging and joyful paths that I have walked down. Through writing to you about personal experiences I have healed and still seek to heal further. Life is full of encounters and experiences that can deliver this; for us to hold each moment of being human in our hearts to live a life of freedom.
What I haven’t written to you about in detail is my career and the work that started my journey. This past week I was recertified by Board Certification as a Behavior Analyst for a fourth time marking a decade as a BCBA. This summer I will celebrate a decade as a BCBA entrepreneur as the owner of Instructional ABA Consultants. It was emotions and injustice that brought me to my career and success. This week I’d like to share my professional journey.
Starting a Career Helping with ASD
My work in the field of autism began fifteen years ago when I was obtaining my bachelor’s degree at the Ohio State University (OSU) in human development focusing on early childhood. I was curious about how environments shaped the developmental outcomes of children. During my time at OSU, I worked in their preschool program and was a home-based therapist for two children with autism using applied behavior analysis (ABA).
This was back in the early 2000s and in both cases, the children were accessing services but their ASD symptoms were not being treated. The ABA program I was working under was state-funded and both children I worked with had high levels of physical aggression. Neither child had a treatment plan that actually alleviated the aggression. I was passionate about the kids and knew from my undergraduate work that environments mattered. In the fall of 2009, I began my master’s degree in Applied Behavior Analysis at The Chicago School of Professional Psychology.
My choice to begin a master’s degree stemmed from a desire to understand why aggression, as well as other aberrant behaviors, occurred in children. I also wanted to understand how applied behavior analysis treated autism symptoms in early childhood. During my master’s degree, I worked as an early childhood line therapist and joined the Illinois Crisis Prevention Network (ICPN) as my internship. I had to work during my degrees to pay my bills and at the time was focused on nothing outside of my career. I was thirsty to learn so I could create change for children.
Working at the ICPN
As I began working on the ICPN I was introduced to adults with mental illness and developmental disabilities. I quickly fell in love with the population and saw how lack of access to quality treatment affected their lives. In spending the first five years of my career focused on children I had never really thought about where they would go when they grew up. I had never thought about the adults with disabilities who had never gained access to care as children themselves. Most of the adults I served at the time had been raised in state-run institutions. Through my work with the adults, my eyes were opened to not only what happens immediately with small children with autism who do not have access to care, but also what can happen in adulthood.
During my time at the ICPN, I worked to gain my associate certification first and followed it up with BCBA board certification. I was given the opportunity of a caseload of clients (from children to geriatrics) who needed immediate crisis support; first under supervision, then as my own caseload. During this time I was wildly in love with my job but fiercely angry at the lack of care my clients received.
As a young woman, I cannot tell you the number of parents’ hands I held as we talked about their child’s (young or adult) experience that led to a crisis. The stories they told me both broke my heart and filled me with a fire to change their experience. Time after time the constant theme that led to a crisis was lack of intervention due to either a lack of funding or an unethical & uncaring therapy team. I worked with each client and family to stabilize their loved ones from crisis to community-functioning. Without access to outside care of the crisis team, success was usually not sustainable.
Changing the Game
In 2012 I decided to change that. I had met my own personal mission to understand aberrant behaviors and the impact of the environment on childhood development. Now, I know through science that the environment is the key predictor of outcome. I also knew that applied behavior analysis provided a scientific approach to at-risk symptoms of autism as well as behaviors.
With my own hands, through applied behavior analysis, I was able to change the outcome of lives for the better. I wanted to open a private practice that used these skills to close the gap in services based on funding sources. I also wanted to challenge my field ethically to create a place where all of our clients received quality care. A decade ago this was not the case. Even today ABA has mountains to climb regarding regulating quality care for all families.
It’s been a decade since I sat for my boards and I still have a fire burning in me fueled by what our science can do to help serve clients who otherwise would not have access to therapy. I went from just me to five locations, across three states, with a team of professionals who have the same passion. Each day I wake up knowing that we (not just me) are creating lasting change. Learning to run a company is for a different blog but as a BCBA I know I have a decade to be proud of.
To the next decade of service. Wherever we may go.
Xoxo,
Jessie
by IABA Team | Sep 27, 2021
The likelihood that a person with autism has another condition correlates strongly with the age at which they received their autism diagnosis, according to a new study. The study also noted that girls with autism are more likely than neurotypical girls to have other conditions, to a degree not seen in boys.
Study factors included whether a person with autism’s age at ASD diagnosis or birth sex changed their chance of having any of 11 common comorbid conditions (including epilepsy, anxiety, and ADHD). The study drew on data from around 16,000 people with autism and more than 650,000 neurotypical people up to 16 years old.
Among people included in the study who received late ASD diagnoses (11 to 15 years old) 26% of girls and 13% of boys were also diagnosed with a comorbid condition. The trend for intellectual disability in the study was the opposite with 40% of people with an early autism diagnosis having an intellectual disability, compared to just 10% percent of people with a late autism diagnosis.
Looking at Gender and ASD Comorbidities
For 11 co-occurring conditions considered by study researchers, the age of autism diagnosis was the single biggest predictor of whether a participant had that condition. Gender was another major factor.
Among individuals with autism, girls were 2.2X more likely to have anxiety than boys. By contrast, anxiety is about 1.4X higher in neurotypical girls than neurotypical boys. And while neurotypical boys are 2.6X more likely to have ADHD than neurotypical girls, the ratio dropped within the ASD population. Boys with Autism are just 1.6X more likely than girls with autism to have ADHD.
Looking at the ASD Spectrum Index
86 percent. That is the proportion of people with autism who show “a fair to very good level of objective psychosocial functioning,” according to a study that tracked the jobs. The happiness and close friendships of 917 adults — 425 men and 492 women — were tracked over a six-year period. These study results appeared in the journal Autism in June 2021.
The results of recent studies have started taking closer looks at both the age of ASD diagnoses and the gender of people with ASD. The early data shows promising results in the differences between boys and girls with ASD.
ABA Therapy from IABA Consultants
If you have questions regarding autism treatment, education, or plans using ABA therapy, we are here for you! Our goal is to make sure no family is turned away due to financial constraints. Our therapy team would love to talk to you. Find the location closest to you and give us a call. We’re here for you.
Sources
Spectrumnews.org, Community Letter
Journal of Autism & Developmental Disorders, July 2021
Acta Psychiatrica Scandinavica, July 2021
Health Services Research, July 2021
by IABA Team | Sep 13, 2021
A recent study in the July 2021 issue of the Journal of Autism and Developmental Disorders has prompted outrage among many autism researchers.
Every researcher on the study (a study focused on autism prevalence and related costs in the US over the next 40 years) has connections to organizations that have wrongfully tied autism to vaccines. This is a conflict of interest that none of the researchers on the study properly disclosed.
About the Researchers
Mark Blaxill, the study’s research lead, is editor-at-large of Age of Autism, a website that promotes distrust of vaccinations and the long-debunked link between vaccines and autism. Blaxill has made national news for his anti-vaccine views.
Toby Rogers, a study co-investigator, is a political economist. Rogers has written for the Children’s Health Defense Fund, a website that seeks to discredit vaccine safety. Another co-investigator, Cynthia Nevison, is a research associate at the University of Colorado and a former board member of SafeMinds, an organization that has unsuccessfully sought to link vaccines to autism.
“It’s abundantly clear that this paper doesn’t follow the journal’s policies,” says David Mandell, associate professor of psychiatry and pediatrics at the University of Pennsylvania and editor-in-chief of the journal Autism. “If you reference the Journal of Autism and Developmental Disorders’ conflict-of-interest guidelines, it says that certain ideological commitments and personal beliefs, personal relationships, all those things have to also be disclosed.”
The failure to properly disclose ties to certain organizational interests has led many researchers to disregard the study. The study researchers mentioned they are not paid to write articles or publish studies for politically motivated organizations in defense of the study.
Misrepresentation of Data
Autism prevalence data from the state of California was used to forecast that 3 to 10 percent of children in the United States will have autism by the year 2060. Based on this figure, the study mentioned the future societal cost of autism could be as high as $5.5 trillion per year. A third analysis claimed to model how prevention might reduce autism prevalence in the future.
Outside researchers say the data is flawed “because it was calculated by looking at really old data, comparing it to new data, and then assuming an exponential function.” Many researchers mentioned this issue as numbers that increased exponentially due to two totally different sets of data will always be too large.
One outside researcher noted “The rise in autism prevalence in recent years can be attributed to better observation and increased diagnosis on the community level. The base rate of autism isn’t magically rising because there’s some toxin that causes it, which is the underlying assumption [the paper’s authors] have.”
Prevention calculation in the study also used “magic numbers,” says Madison Hyer, a biostatistician at Ohio State University’s Wexner Medical Center. “Magic Numbers” means it isn’t clear what the word prevention means or even what’s being measured. “Are they saying that this is the cost of supporting or treating individuals with autism across their life in some way? Or is this the cost above the cost of supporting someone without autism? Everybody costs something.”
Outside Researchers on Prevention Prediction
Other comments from outside researchers mentioned “[the study] made some really severe assumptions about productivity … It looks like they were assuming anybody with autism would have zero productivity, but many people with autism work.”
Many outside researchers without organization ties observe that some people with autism may have disabilities and challenges, but that we as a society should think about how to support them. They’re still quite productive members of society.”
Some outside researchers noted that some of the data used to calculate productivity may have also come from questionable sources, says Kristen Bottema-Beutel, associate professor of teaching, curriculum, and society at Boston College in Massachusetts. “The data they use appears to be from a non-peer-reviewed PDF.”
“The Journal of Autism and Developmental Disorders was established in 1971, and its first editor-in-chief was Leo Kanner, one of the first clinicians to describe autism. Some researchers say the new study has diminished their perception of the journal, which has an impact factor of 3.047. (A journal’s impact factor reflects how often its articles are cited.)”
“[This paper] makes me question the peer review process,” says Brittany Hand, assistant professor at Ohio State University in Columbus, who also wrote a letter of protest to Volkmar. “How in the world does something like this get past [peer review]?”
ABA Therapy from IABA Consultants
If you have questions regarding autism treatment, education, or plans using ABA therapy, we are here for you! Our goal is to make sure no family is turned away due to financial constraints. Our therapy team would love to talk to you. Find the location closest to you and give us a call. We’re here for you.
Sources
Spectrumnews.org, Community Letter
The Journal of Autism and Developmental Disorders, July, 2021
by IABA Team | Aug 10, 2021
What is double empathy and how does it relate to ASD? Click here for Part 1.
Double Empathy & Current Thinking About ASD
The double empathy problem stands at odds with several widely adopted ideas about people with autism, namely that their social difficulties are inherent. For example, one of the main diagnostic criteria for autism, as outlined in the Diagnostic and Statistical Manual of Mental Disorders, is “persistent deficits in social communication and social interaction across multiple contexts.” Similarly, the social motivation theory of autism holds that people with autism have a diminished drive for social interaction.
But the Double Empathy theory isn’t necessarily incompatible with the old ideas. Instead, the theory highlights the importance of examining both sides of social interactions instead of focusing solely on the ways people with autism diverge from the perceived norm.
Is ASD Research Changing in Light of the Double Empathy Problem?
Some modern ASD research is changing due to Double Empathy. For instance, scientists are rethinking how they examine social skills, calling for a revamp of autism studies to gauge the strengths, rather than the limits, of ASD communication. Researchers are also finding ways to probe the dynamics of social interactions instead of studying the isolated behavior of people lying in a brain scanner or sitting at a computer.
In addition, researchers who study predictive coding — the way people form internal models of the external world — are exploring how a mismatch in people’s predictions could hinder their interactions. For example, if a person with autism has expectations about how a conversation might unfold diverge from a neurotypical person’s, their interaction may falter.
Not everyone is convinced, or even aware, of the Double Empathy theory. Some questions at the core of the theory remain unanswered. For example, researchers are still figuring out why communication is smoother when people with autism interact with one another than it is when they engage with neurotypical people. And much of the existing evidence for the theory rests on anecdotal reports and small studies.
Are There Any Implications for ASD Treatment from Double Empathy?
In addition to suggesting new research angles, the double empathy problem may help explain why some autism assessments and treatments fall short. For example, standard measures of social abilities don’t seem to predict how people with autism fare in actual social interactions.
Therapies designed to teach people with autism normative social skills are not all that effective in helping them navigate real-life situations, such as forging friendships, studies suggest. Evaluating social situations surrounding people with autism and finding ways to facilitate their unique communication styles may be a more useful approach, he says.
Similarly, the double empathy problem underscores the importance of training programs — say, for doctors or law enforcement professionals — that help neurotypical people interact appropriately with people with autism. Being routinely misperceived can lead those with ASD to loneliness and feelings of isolation. And attempts to conform to social norms by suppressing who you are can be exhausting, many experts say.
ABA Therapy from IABA Consultants
If you have questions regarding autism treatment with ABA therapy, we are here for you! Our goal is to make sure no family is turned away due to financial constraints. Our therapy team would love to talk to you. Find the location closest to you and give us a call. We’re here for you.
Sources
Double Empathy Explained, spectrumnews.org
by IABA Team | Aug 3, 2021
What is double empathy and how does it relate to ASD?
The basis of the Double Empathy Theory is that a mismatch between two people can lead to faulty communication. This disconnect can occur at many levels, from conversation styles to how people see the world. The greater the disconnect, the more difficulty the two people will have interacting.
In the case of autism, a communication gap between people with and without the condition may occur not only because people with autism have trouble understanding neurotypical people but also because neurotypical people have trouble understanding them.
The problem, the theory posits, is mutual. For example, difficulty in reading the other person’s facial expressions may stunt conversations between people with autism and neurotypical people.
Double Empathy Origins
This conception of social issues in autism as a two-way street is decades old. Some ASD activists have argued for years that ASD modes of communication conflict with neurotypical ones.
The term ‘double empathy problem’ was first used in a 2012 paper by Damian Milton, a University of Kent lecturer. The idea offered a way to reframe the long-held notion that individuals on the spectrum have impaired theory of mind — the ability to infer the intentions or feelings of others — to include potential misunderstanding by neurotypical people.
Support for Double Empathy
Instead of focusing on how people with autism perform in social situations, new studies probe how neurotypical people perform when interacting with people with autism. The results hint that neurotypical people’s blind spots contribute to a communication gap.
In one study, neurotypical people had trouble deciphering the mental states people with autism portrayed through animations. Another study showed that neurotypical individuals struggle to accurately interpret the facial indicators of people with autism.
Neurotypical people may also make snap judgments of people with autism that prevent, curtail, or sour interactions between the two. For example, neurotypical people may be prone to having negative first impressions of people with autism without knowing their diagnosis — rating them less approachable and more awkward than neurotypical people.
Are Social Difficulties a Core Trait of ASD?
Yes, plenty of evidence shows that people with autism differ from neurotypical people. Social interaction difficulties across several domains, such as facial expressions, speech patterns, and eye gaze (though the last notion may be shaky) have been observed and studied.
However, many other studies show that people with autism have social and communication issues that are not evident when they interact with other people with autism. For example, in the game of “telephone,” in which a message is relayed in whispers from one person to the next, chains of eight people with autism maintain the fidelity of the message just as well as sets of eight neurotypical people do. It’s only in mixed groups of people with autism and neurotypical people that the message quickly degrades.
There are other signs that people on the spectrum connect well with one another. People with autism report feeling more comfortable with other people with autism than with neurotypical people. Many adolescents with autism prefer to interact with ASD peers over neurotypical ones. And people with autism often build a greater sense of rapport and share more about themselves when conversing with others on the spectrum.
One reason for this pattern may be that people with autism are less concerned with typical social norms, such as conversational reciprocity, and so don’t mind as much when these rules are not followed.
The principle of social compatibility may extend beyond autism diagnoses to autism traits. For example, the more similar two neurotypical people rate themselves on an autism trait assessment, the closer they rate their friendship.
ABA Therapy from IABA Consultants
If you have questions regarding autism treatment with ABA therapy, we are here for you! Our goal is to make sure no family is turned away due to financial constraints. Our therapy team would love to talk to you. Find the location closest to you and give us a call. We’re here for you.
Sources
Double Empathy Explained, spectrumnews.org
