Tag: autism

The Autism Journey: Accepting vs. Resisting A Diagnosis

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BY: NICOLE ZAHIRY, M.A., BCBA
BEHAVIOR ANALYST SPECIALIST, AUTISM SPECTRUM THERAPIES

 According to Autism Speaks, in 2021, 1 in 44 children in the United States were diagnosed with autism spectrum disorder (ASD), with boys being four times more likely to receive a diagnosis than girls. A diagnosis, of any kind, means something different from family to family and is often colored by their culture, belief system, generational influences, and socio-economic factors.

For some, a diagnosis provides validation—there is a name for the group of symptoms parents, friends or family members may have observe (or comment on)—things like: a language delay, “quirks” in social skills, atypical behaviors, or excessive tantrums. The diagnosis can be affirming; for moms, in particular, there may be a sense that their “gut” was right. It may be a sigh of relief that their intuition has been validated in the form of a recognizable diagnosis — something more than just an instinct felt deeply in some intangible way. For others, a diagnosis can be a devastating surprise — one that catches unsuspecting parents off-guard and leaves them feeling overwhelmed and underprepared.

Whether a parent has suspected something all along or is taken aback by a diagnosis, all families grapple with making sense of what it all means. The hard part, for many families, is being patient, hopeful, and resolute when the questions far outnumber the answers.

After a Diagnosis

Arguably, one of the hardest parts of the journey for parents of children with ASD, is the beginning. The unknowns are pervasive. The information “out there” is wild. Google is daunting (and often alarmist), and questions lead to more questions even before the diagnosis has been fully digested. Parents may begin asking themselves and others: What is ASD? What does it mean? Will my child learn to communicate? Will his/her behavior ever improve? What now? What do I do? What treatments are available? Why is this happening?

One truth about ASD is that autism is different for each autistic individual. As autistic professor and advocate Dr. Stephen Shore says, “If you’ve seen one person with autism, you’ve seen one person with autism.” And, it’s true. Autism looks, sounds, feels, and behaves differently for each autistic child.

A neighbor, friend, or family member’s autistic child, his/her skills and strengths, areas of need, where and how much he/she is impacted by the diagnosis, will all vary. Every child is unique. Every autistic child is too. Comparing one autistic child against the skills of another can be, at best, misguided and, at worst, detrimental. The best (albeit, the only) way to answer some of those nagging questions is to submit to the journey of autism and start down its road one step at a time, minute to minute, hour by hour, day by day.

The Journey of Autism: Resistance and Grief

There’s no doubt that undertaking something new can feel overwhelming. After all, autism is a journey most parents are ill-prepared to begin and may resist undertaking altogether. Beginning a journey with few answers, little information, and no preparation makes even the boldest and bravest among us uncertain. But, as the old adage goes, “A journey well begun, is half done.” For parents, beginning the autism journey on the right foot often means acknowledging resistance, grief, and other feelings about the diagnosis before heading down the road.

Resistance, in the beginning, often shows-up in unhelpful ways and can breed doubt or distrust and delay access to important early interventions. It often comes from a place of grief, guilt, or anger:  Could the doctor be wrong? Did I cause this? Maybe my child will “outgrow” it? Maybe my child is just “slow”? It can be difficult to side-step resistance and forge ahead when many questions remain unanswered. But, the autism journey is not linear—emotions, feelings, and reactions will not be either.

Later on, resistance can become an important component of advocacy. Resistance may prompt parents to speak-up/stand-up, and communicate to care providers if/when assessment, placement, or goals do not align with their (or their child’s) objectives for treatment. Resistance gives parents a new voice; it can lead to useful insights, self-reflection, and those wonderful “lightbulb” moments that have the power to remove roadblocks and push treatment forward.

Processing grief is sometimes an uncomfortable but important additional step for parents new to the journey. All the unknowns can be heavy; grieving the weight of those worries is important. It is OK to be sad. It is OK to feel loss. It is OK to shoulder that grief with a partner, a trusted friend, a therapist, or a family member. It is also OK if parents don’t feel these things, either.

But for those that do, it is critical to recognize that grief or sadness will eventually make way for other emotions and lend themselves to a steadfast resiliency that treatment, therapy, and advocacy often require.

It’s important to acknowledge that grief can (and often does) exist alongside hope, love, and other complicated feelings—sometimes competing for attention. Accepting a diagnosis is not the absence of grief, but rather, an acceptance of it. It is an acknowledgement that things will look different because of autism but also an understanding that different is not less. Different is important and valuable. Differences are necessary. Differences are an inherent component to being alive, to living, to being human.

The Road to Acceptance and Action

Accepting autism means taking those reluctant first steps.

Those steps can be taken with uncertainty, with fear, with resistance or grief, with hope, with love, with the whole gamut of emotions along for the ride. Acceptance involves understanding autism as more than a label but a gateway to support and community; an opportunity to educate siblings, family, and community members about autism, inclusion, and neurodiversity.

It can be a call to action — personally, within the walls of a home, and beyond. Several important organizations at the forefront of autism and autism research were started by parents. Parents looking for support, digging for answers, researching effective treatment for their children. Parents who didn’t expect autism. Parents who may have grieved the diagnosis. Parents who fought hard for their child, for change, for growth, for acceptance and advancement.

A diagnosis also allows parents to access effective therapies via private insurance and academic supports from their local school district. Therapy that opens doors, strengthens skills, and decreases the impact maladaptive behaviors like aggression or tantrums may have on an autistic child’s quality of life.

Acceptance fuels action. Action brings answers.

Autistic children will have different needs than neurotypical children. There will be different obstacles to overcome and different battles to be fought. But, in many ways, the journey will be the same. Life will ebb and flow and push and pull parents in a thousand different ways—some of which will not be easy to understand. Questions will always come before there are answers. And, there will always be questions that don’t have answers. There will be ups and downs. There will be periods of high highs and low lows.

But, there will be joy. There will be laughter. There will be love.

Nicole Zahiry, M.A., BCBA, is a behavior analyst specialist in Orange County, California. She has been active in the field of ABA for nearly 20 years. She is also a mother to three children, one of whom was dual diagnosed with ASD and Attention Deficit Hyperactivity Disorder (ADHD) at 5 years old. Nicole is a fierce advocate for neurodivergent inclusion and considers herself an ally of the disabled community.

Myth: People with Autism Don’t Feel Love

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by Katherine Johnson. M.S., BCBA
Senior Director of Partnerships, LEARN Behavioral

 “One of the most Googled questions neurotypicals ask about dating on the autism spectrum is, ‘Can autistic people fall in love?’” says Tasha Oswald, Ph.D., a licensed psychologist, on her blog series Dating on the Autism Spectrum. “To be honest, this question always catches me off guard,” she says. “Of course, they can.”

For those of us who know and love people on the spectrum, the question may be: how is this myth still around? For one thing, widespread abelism in our culture means that media often depicts love as happening only between people who match some arbitrary standard of ability, beauty, intelligence, or “cool” that the majority of us don’t meet. This perception is compounded by the communication differences that are a defining feature of autism: autistic people either have difficulty communicating or communicate differently than neurotypicals, including expressions of love and attraction. Additionally, sensory differences can make physical expressions of love a little more complicated, requiring explicit communication that, again, may be a challenge. And of course, it shouldn’t be missed that in general, love can be an overwhelming and confusing part of the human condition, including, but not limited to, autistic humans.

Expressions of love

The fact that autistic people experience the full range of human emotions, including love, is indisputable.

A recent article in the journal Autism examined the lived experience of autistic mothers with children ages 5-15. Answering open-ended questions in a semi-structured interview, mothers spoke of their connections with their children using the words “love,” “bond,” and “complete adoration.” Reading their accounts highlights that in spite of the barriers many of them face, their emotional experiences are quite familiar. For instance, one expressed that she felt worried that her love for her second child wouldn’t be as strong as it was for her first – a nearly universal experience of parents of multiple children (Of course, in the end she was “pleasantly surprised” that this wasn’t the case.).

Austin John Smith is an autistic blogger who has shared his experience moving in with a girlfriend and getting used to living together before getting married. As he writes lovingly about their day-to-day lives, he describes the things they have in common, their differences, how they share their emotions, and how they support each other. Smith says, “I love her more than anything in this whole world, and I am 1000% willing to go through anything with her…”

But these are stories of autistic folks who can speak and express their feelings. What about those who are unable to communicate verbally?  Laura Cunningham has first-hand experience. The Pueblo, Colorado, woman adopted her son, Spencer, when he was 11. He’s 19 now. He’s on the spectrum and is non-verbal. But “he feels love,” his mom says. Not only does he hug her and hold her hand, but he also has his own way of expressing emotion, one example of which chokes her up. It was the beginning of the school year, and she was talking to him about school. Spencer was excited and did something he had never done before: he picked up his phone and found certain sections of songs that he wanted to play for her over and over. The meaningful lyrics were his way of expressing what he was feeling.

Barriers

Although difficulty in love has been the subject of countless songs, stories, and myths since the beginning of time, autistic folks may have additional strains on their emotional connections. Sensory differences mean that the types of physical expressions of love that our society views as “typical” may not serve the same function for autistic people. For instance, the sensation of kissing may not spark the same warm feelings in an autistic partner that a neurotypical person would expect. Reading social cues, being flexible to accommodate a partner’s needs, and expressing their own emotional needs can all be challenging for autistics. For non-verbal autistic people, expressions of affection can be tragically misunderstood; one mother of a non-verbal autistic teenager named Sam related that “if a 17-year-old boy in his high school puts his arm around somebody, that’s considered fine. My son puts his arm around somebody, he gets an incident report.”

Support: Translating to the other side.

Autism expert Peter Gerhardt repeated a question posed to him by a friend on the spectrum: “if you neurotypicals have all the skills, why don’t you adapt for a while, damn it?”

So, what is society doing to support autistic people in their human quest for love? There are certainly more resources today than there were a decade ago, with support groups devoted to neurodiverse couples, books and resources for autistic people, online communities where neurodivergent people can support each other in their relationship challenges, and even a television show devoted to the topic, Love on the Spectrum.

Even so, more mechanisms for support are needed. Gerhardt says, “When I talk to professionals about the issue of sexuality and relationships on the autism spectrum, they often say, well, parents don’t want to deal with this, parents are afraid to deal with this. And then when I talk to parents about the issue, they say, well, professionals don’t want to deal with it. So, what ends up happening, is nobody deals with it, and it becomes, sort of this, you know, elephant in the living room that nobody is really dealing with.”

Debunking the myth

Society often sends the message that there is a “right way” to express love. People who love someone with autism and are loved by them know that affection can be expressed in a wide variety of ways. Still, that societal standard of what is “right” can lead autistic people to try to be someone they are not.  Anyone who has tried to be a “better version” of themselves for a partner knows how much energy it takes and that the relationships often fail. Masking is stressful and harmful. We can all help to destigmatize love among people with neurological differences and work to find more ways to support our autistic brothers and sisters in this integral part of the human experience.

Thankfully, there are a lot of beautiful success stories out there. Austin John Smith writes of his wife, “Despite all the good times we have had, there have been times where being on the spectrum has made things difficult for Annie and me. What can I say? I’m not perfect. I never will be. I just am who I am. But what I do each and every day with her is what I consider trying to do my best.” We should all be so lucky to have a partner with his perspective.

10 Tips for Navigating the IEPs

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The Outcome of your IEP process relies on you…

One of the most important discussions parents can have with their clinical team is about the goals they have for their child as they grow into adulthood. Most parents grapple with finding the time to think about their child’s long-term future when they are facing the daily needs of mealtimes, sleep schedules, or having a successful play-date. However, as tough as this discussion is, it is critically important to start this conversation early because the foundational skills that will enable your child to function well as an adult are taught and acquired during childhood.

A significant part of a child’s development will be determined by their school environment, academic placement, and the academic curriculum that guides their learning. A child’s initial Individual Education Plan (IEP) is critical. This important document will lay the groundwork for the types and level of services that a child will receive throughout their academic years. It is essential that parents put sufficient time and effort into preparing for their first and subsequent IEP meetings.

An Individual Education Plan (IEP) is a legal document that is developed for every child eligible for special education. This plan contains a statement of a child’s present level of functioning in terms of performance, educational needs, goals, levels of service, and measurable outcomes. The first IEP meeting is typically held before a child transitions into preschool or as soon as a child is identified as having a special need and determined eligible for special education services. An IEP meeting can be held at multiple times during the year: after a formal assessment; if a child demonstrates a lack of progress; or if a parent or teacher requests a meeting to develop, review, or revise a child’s current IEP.

There are some important steps that parents should consider when beginning the IEP process. We have outlined some of the most important ones for you here. The following guidelines can help you prepare for your first IEP:

  1. Understand the IEP Process and Know Your Rights. It is of paramount importance to read up on the IEP process, become familiar with IDEA (Individuals with Disabilities Education Act), and understand your rights as a parent. In addition to studying the law, many parents seek advice from an advocate and network with well-informed parents who have first-hand experience with the IEP process in their school district.
  2. Make All of Your Requests in Writing. All requests should be made in writing to create a documentation trail that provides a history of the child’s academic needs and requests to the school district (e.g., requests for an IEP meeting, an assessment of any kind, or a classroom placement recommendation). It also allows you to state your requests in your own words. In addition, ask the IEP committee to record these written requests as part of the minutes in an IEP meeting. The IEP committee can accept or deny these requests. If the committee denies the requests, then they must follow the procedural safeguards in IDEA and provide written notice of why they are denying your request. If the request is not documented in writing, the school district is not required to provide the service. (Be Familiar with Prior Notice of the Procedural Safeguards (34 CFR 300.503))
  3. Obtain Independent Assessments Ahead of Your IEP Meeting. The school team should not be recommending nor denying services without an assessment to evaluate the need for that service and neither should parents. You will want to request, in writing, that your child be assessed before the IEP meeting is held. Ideally, if all the necessary assessments are conducted prior to the IEP meeting, then the recommendations for treatments can be discussed during the IEP meeting. Be sure to request copies of the assessments, progress reports, and proposed goals in advance of the meeting, in order to have ample time to review and be fully informed during the meeting.
  4. Organize All of Your Records. Parents should have all of their records on hand and easily accessible during IEP meetings. Create a system of storing and updating all information that makes sense to you and that makes it easy for you to find the information you need.
  5. Observe the Classroom. Ask to observe any classroom where your child is being recommended for placement, so you can better understand if it would be a good fit. If for some reason the school will not let you observe, have a professional who is familiar with your child observe the setting.The law states that the team must start with the Least Restrictive Environment (LRE) which is the general education classroom as the first option and work towards a more restrictive environment only as necessary as needs come up that cannot be met with supports and modifications in the LRE. Therefore, placement should never be decided upon before the child’s goals and objectives are concluded. (see item #7 for Goals and Objectives)
  6. Formulate a list of Questions before your IEP. In advance of the meeting, prepare a comprehensive list of questions (a very long list is completely appropriate). During the meeting, assign someone on your team to take notes and write down answers to all of your questions. This allows you to focus on the conversation. A tremendous amount of information is exchanged at IEP meetings, and it can be overwhelming to absorb it all.
  7. Make Sure Goals and Objectives are Progress Oriented. Goals and objectives are one of the most important elements of an IEP. If the goals and objective are not written in a manner that is observable and measurable, one cannot determine if a child is making progress. Without this, the school can claim that a child has made progress without producing actual data to evidence the skills gained. In addition, the goals and objectives will specify what a child needs to learn in that academic year. This is the critical time to think more long-term. Will these goals serve where you want your child to be two years from now? Five years from now? Are they laying the foundation for the necessary skills that your child will need as an adult to live the most independent life he or she can? Get input from members of the team that work with your child before the meeting; ask for their opinion of your child’s progress and needs.
  8. Be the Host, Not the Guest. Since IEP meetings are held at the school district, parents typically feel like a guest at their child’s IEP. However, since the IEP meeting is about your child, parents can create a more personal atmosphere. For example: by providing snacks, pastries and light refreshments, you can put yourself in the position of host of the IEP meeting. Another idea is to bring a photograph of your child and place it in the center of the table to remind the team who and what the meeting is about- providing services to support this specific child in attaining his or her highest potential.
  9. Never Go Alone. The support of a family member, uncle, husband, friend, advocate, cannot be overstated. The IEP process can be  stressful, tiring, and sometimes overwhelming. Parents often share that having someone else in the room to support them, take notes and offer reassurance makes a huge difference. In some instances, parents obtain professional support from advocates or special education attorneys who specialize in the IEP process.
  10. Disagree Without Being Disagreeable. Once the team has made their recommendations and concluded the IEP, parents will be asked to sign the IEP document. The IEP document allows for them to sign that they were present at the IEP but that they do not agree at that time with the recommendations. This is a good option to exercise at the end of the meeting. It gives you the opportunity to take the IEP home to review later and have the option to request changes. This can be done in a very respectful way, allowing you time to make the best decisions that are best for your family.As a parent, you are a vital part of your child’s IEP team. You are your child’s best advocate and the person who knows what’s best and most appropriate for him. With the correct information and support you can create a comprehensive and suitable roadmap for your child’s future.

 

– Michelle Stone, M.S., BCBA. Based on an interview with David Wyles- a Parent’s Guide to the IEP.

TSC: A Rare Genetic Disease with a 50% Autism Diagnosis

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Kari Luther Rosbeck, President & CEO, TSC Alliance, and Steven L. Roberds, PhD, Chief Scientific Officer, TSC Alliance join us for a discussion about Tuberous Sclerosis Complex (TSCA) a rare genetic disorder. This is an incredibly educational conversation on how this disease is identified and treated.  About 50% of those diagnosed with TSC, will also have a diagnosis of autism. Even if your child is not at risk for TSC, the thoughtful approach to treatment and resources can be valuable for all parents. As Kari shared, “When people are ready, they need to know; what are the  right questions to ask, what about genetic testing, what about medication, and how does that whole system work?”

 

Learn more about TSC Alliance by visiting tscalliance.org

Interested in ABA therapy for your child? Contact us https://lrnbvr.com/contact

All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com)

The September 26th Project: Safety Preparedness for Families with Autism

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The September 26th was created to honor the lives of a family that was tragically lost in a home fire. By providing safety awareness and preparedness resources for families the mission of this initiative is to review their safety plans every year on September 26th and use their checklists to be prepared. Kelly also commented on the importance of caregivers to support safety preparedness and awareness. As she said, “If a child can’t get out of the house in the event of a fire, were the other goals addressed important?”  

For More Information: 

Visit their website: https://www.september26.org/ 

Download the Fire safety check-list 

Download the Natural disaster checklist 

Download the Wondering prevention checklist  

Download American Red Cross Emergency apps here  

All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com). 

Tips and Resources for Families during COVID-19 with Katherine Johnson, BCBA

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The sudden disruption in routine due to COVID-19 is challenging for all individuals to manage as we adjust to a new, and hopefully short-lived, normal of staying at home and ceasing most of our regular activities. For families of individuals with autism and other disabilities, the disruption can be especially challenging.

Richie has a conversation with Katherine Johnson, BCBA and founder of Advances Learning Center to share helpful tips and resources for you and family during this time.

Katherine has a Master of Arts degree in Behavior Disorders and Applied Behavior Analysis from Columbia University Teachers College and is a Board Certified Behavior Analyst (Charter Certificant). Katherine has taught in both private and public schools at pre-school and elementary levels and has provided educational consultation services to public schools and home programs. She has taught undergraduate behavior analysis courses at Northeastern University and graduate level courses at Simmons College, has provided parent training through the May Institute, and is on the Advisory Board for the undergraduate psychology program in Applied Behavior Analysis at Regis College. Katherine also currently serves as Vice President of MassCAP.

Resources Discussed:

Go Noodle: https://www.gonoodle.com/ 

Privilege Points: http://www.privilegepoints.com/

For more helpful tips and resources, sign up for our Parent Newsletter at LearnBehavioral.com/parentresources.

All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com).

Managing Your Child’s Screen Time During COVID-19 with Katherine Johnson, BCBA

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The sudden disruption in routine due to COVID-19 is challenging for all individuals to manage as we adjust to a new, and hopefully short-lived, normal of staying at home and ceasing most of our regular activities. For families of individuals with autism and other disabilities, the disruption can be especially challenging.

Resources Discussed:

Cosmic Kids Yoga: https://www.youtube.com/CosmicKidsYoga

Raz Kids: https://www.raz-kids.com/

Epic: https://www.getepic.com/

Prodigy: https://www.prodigygame.com/

DreamBox: https://www.dreambox.com/

Out School: https://outschool.com/

Story Time from Space: https://storytimefromspace.com/library/

Bark: https://www.bark.us/

For more helpful tips and resources, sign up for our Parent Newsletter at learnbehavioral.com/parentresources.

All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com).

Autism and Co-occurring Disorders with Susan W. White & Carla Mazefsky

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Dr. Carla Mazefsky is an Associate Professor of Psychiatry at the University of Pittsburgh School of Medicine, where she is Co-Director of the Center for Autism Research (CeFAR) and the Director of the Regulation of Emotion in ASD Adults, Children, & Teens (REAACT) Research Program. She is a past recipient of the INSAR Ritvo-Slifka Award for Innovation in Autism Research. Her current studies take a lifespan approach, with an emphasis on adolescence and the transition to adulthood.  Her research focuses primarily on emotion regulation and associated mental health and behavioral concerns in autism spectrum disorder (ASD), including the mechanisms underlying emotion dysregulation in ASD and the development of new assessment and treatment approaches. She is co-editor of the Oxford Handbook of Autism and Co-Occurring Psychiatric Conditions, author of the Emotion Dysregulation Inventory, and co-author of the Emotion Awareness and Skills Enhancement (EASE) Program.   

Susan W. White is Professor and Doddridge Saxon Chair in Clinical Psychology at the University of Alabama. Her clinical and research interests include development and evaluation of psychosocial treatments that target transdiagnostic processes underlying psychopathology. She is associate editor for the Journal of Clinical Child and Adolescent Psychology and the Journal of Autism and Developmental Disorders, and she the Editor in Chief of the ABCT Series on Implementation of Clinical Approaches. Her research has been funded by the National Institutes of Health and the Department of Defense. She received her PhD from Florida State University.

All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com).

Early Detection and Treatment for Autism with Dr. Geraldine Dawson

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Geraldine Dawson is the William Cleland Distinguished Professor of Psychiatry and Behavioral Sciences at Duke University, where she also is Professor of Pediatrics and Psychology & Neuroscience. Dawson is the Director of the Duke Institute for Brain Sciences whose mission is to promote interdisciplinary brain science and translate discoveries into solutions for health and society.  Dawson also is Director of the Duke Center for Autism and Brain Development, an NIH Autism Center of Excellence, which is an interdisciplinary research program and clinic, aimed to improve the lives of those with autism through research, education, clinical services, and policy. She has published several books on autism, including An Early Start for Your Child with Autism, A Parent’s Guide to High-Functioning Autism, and  What Science Tells Us about Autism Spectrum Disorder.  Dawson’s pioneering studies were among the first to describe the emergence of autism symptoms during infancy, leading to new screening tools. Dawson co-created the Early Start Denver Model, an early autism intervention shown to improve behavioral outcomes, which has been translated into 17 languages and is used worldwide. Her work showed for the first time that early intervention can normalize aspects of brain activity in children with autism, changing the field’s view of brain plasticity in autism, a finding recognized by TIME Magazine as one of the top 10 medical breakthroughs of 2012. A strong advocate for persons with autism, Dawson has testified a number of times before the US Congress in support of major autism legislation and was appointed by the U.S. Secretary for Health and Human Services for two terms to the DHHS IACC.

All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com).

Spotlight on Diversity in ABA: An Interview with Joshua Polanco

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A board certified behavior analyst (BCBA), managing technician, at LEARN’s Autism Spectrum Therapies (AST) in California’s Inland Empire region, Joshua Polanco provides supervision and behavioral intervention plans for clients in need of ABA services. He earned a master’s degree in psychology and ventured into ABA because he wanted to use that degree in a more direct and meaningful way. He’s also legally blind.

Here, he shares stories from his journey and experience working with children and young adults with autism—and his take on the importance of diversity, equity, and inclusion (DEI) in the field of applied behavior analysis (ABA).

 

Q: WHY DID YOU GET INTO ABA?

A: I was working as a behavioral technician and providing one-to-one services with multiple clients. I was about to quit after the first two weeks of working in the ABA setting because I did not have any experience with children with disabilities and felt like I was not helping my clients. Ironically, the clients and their families are what made me stay. To me, nothing can beat the sensation of knowing you have made a difference in someone’s life, and I have had so many fun experiences that helped me realize the importance of ABA, and how prevalent it is in our everyday lives. All of these experiences are what drove me to continue pursuing ABA to the position where I am now.

 

Q: WHAT DOES DIVERSITY, EQUITY, AND INCLUSION (DEI) MEAN TO YOU?

A: Everything. I feel these concepts as a whole are very overlooked at times. It’s not only important to have diversity, equity, and inclusion in the workplace but to also recognize the benefits provided when DEI is incorporated into a work environment. In my case, I may be legally blind, but that does not make me useless in a work environment that relies heavily on vision. I am able to continue to make an impact on peoples’ lives through my work and can actually provide a different perspective and understanding when helping clients or co-workers because of my loss of vision.

Q: IN YOUR OPINION, WHAT IS THE MOST CHALLENGING ASPECT OF WORKING IN A DIVERSE ENVIRONMENT?

A: Trying to comprehend various interactions that take place. Balancing the state of empathy and understanding, while simultaneously needing to support and accomplish work objectives that need to be achieved.

Q: WHAT IS YOUR APPROACH TO UNDERSTANDING THE PERSPECTIVES OF COLLEAGUES OR CLIENTS FROM DIFFERENT BACKGROUNDS?

A: The short, easy answer is that I take a step back and just listen. Self-awareness and self-control over your own biases and habits go a long way. It’s important to me to recognize the limitations you have in the moment. For example, you may not always be able to truly understand the perspective of others. This is OK—we are only human. I feel like there are ways to still attempt to understand to some degree. Failure to truly understand someone should not give us permission to disregard their perspective.

I’ve relied, to some degree, on multiple psychology books, articles, and notes from when I obtained my master’s degree in psychology, with an emphasis in clinical counseling and marriage and family therapy. When communicating with colleagues and clients, I always try to review and remember the concepts I learned on the dynamics of communication, including those on cognitive distortions and positive feedback loops. Understanding these can play a huge role on how I understand and communicate during a conversation.

Q: WHY IS DEI IMPORTANT IN ABA?

A: Without DEI, we would be refusing to grow ABA as a whole. ABA is a science that expands to more than any one individual population. Part of everything we do is to help, expand, and make a difference in the world. What better way to accomplish this than to recognize the different things people have to contribute.

Q: TELL ME ABOUT A TIME WHEN YOU ADVOCATED FOR DIVERSITY AND INCLUSION IN THE WORKPLACE OR IN YOUR PERSONAL LIFE.

A: One poignant instance in which I had to advocate for myself is the moment I was officially diagnosed blind, and I had to reach out to the HR department to figure out some resolutions and next steps forward. Luckily, I was part of a supportive team and was able to continue doing the core work I was educated to do and hired for, with some slight accommodations and adjustments.

Q: WHAT’S SOMETHING MOST COLLEAGUES DON’T KNOW ABOUT YOU?

A: I do not know how many people know that I am legally blind. My condition is called Retinitis Pigmentosa (RP). There is no treatment. With this condition, my vision will gradually worsen. There is no telling how much vision I will lose tomorrow…or over the next 30 years. I don’t only have to think about how this affects the work I do with clients but how I adjust my everyday life to prepare for this. Through my work with rehabilitation specialists, I am learning to use technology, to read braille, and even to cook without looking.

Q: ANYTHING ELSE YOU’D LIKE TO ADD?

A: I was diagnosed legally blind less than a year ago. In that time, I’ve taken and passed the BCBA exam, which was the first test I’ve ever had to study for and take without my vision, while finding ways to balance my work, as I learn a new lifestyle. I hope the message from all of this is one of inspiration—that no matter how bad things may seem, it’s important not to let the events around you, define you. Take control of the things you can, adapt, and persevere through the adversity. Because this is what we ask of our clients each day.

For more from our Spotlight on Diversity in ABA series, read “An Interview with Angela Parker.”