Growing Up With Autism And Finding Belonging and Purpose

Andrew Moore serves as Directory Administrator for Autistic Minds, an educational charity and resource center in the UK joins us to share his story of finding meaningful employment, mentors, and friends as an autistic adult. For Andrew, connecting with the organization Autistic Minds opened a whole new world. As he shares, “I just needed guidance and support for the fundamentals.”

Show notes:

https://autisticminds.org.uk/

All autism talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com).

Sensory Overload at School

Sensory overload happens when the brain receives more sensory input than it can process. For children on the autism spectrum, this sensory overload often stems from perceptual or biological experiences, but can also be triggered by changes to their routine or learning environment.

Explore what contributes to sensory issues, how this might manifest in your child, and ways to support children in developing coping strategies or supporting their preferences. Subscribe to stay in the loop about helpful tips for your child with sensory sensitivities!

Living a Full Life with Autism with Martin Slyngstad

Martin Slyngstad a Behavior Specialist, and currently in school to become a Speech Pathologist, joins us to discuss his multitude of interests and accomplishments as a young autistic adult.  Martin is the author of Chatter Box: My Life with Autism A Mother and Sons Perspective, founder Spire Autism, and Special Olympics gold medal winner. Martin’s warmth and sincerity are contagious as he shares his passionate belief that everyone should celebrate their authentic life.

For more information:

www.spireautism.com

www.youtube.com/@martinsautismjourney7397

All Autism Talk is sponsored by Learn Behavioral (www.Learnbehavioral.com).

Advocating for Your Family and Good, Contemporary ABA With Arfa Alam

Arfa Alam is a senior manager at the Partnership for Public Service, a non-profit that envisions a dynamic and innovative federal government that effectively serves our diverse nation. Prior to joining the Partnership, Arfa performed labor human rights and social responsibility work in more than 40 countries in both the public and private sectors. Arfa joins us to share her experience and deep conviction for the appropriate care, and rights for all. She is the proud mother, wife, and sister of disabled and differently-abled individuals, including her two autistic sons, her husband who lives with early onset Parkinson’s disease, and her twin sister, who is deaf and was the first person in life to teach her about differences and empathy. 

As she shares, “As a first-generation American, it is particularly important to me to bring awareness, acceptance, and inclusion to our communities for individuals with disabilities and neurodivergences.” Arfa’s passion for public service stems from her experience as a first-first-generation Muslim-American with special needs family members. We are grateful for the opportunity to have this discussion with Arfa and we look forward to having her with us again soon.

For more information:

https://www.bestbuddies.org/

https://marybarbera.com/

All autism talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com).

Self-Care and Sensory Needs for Neurodivergent Individuals

Dr. Megan Anna Neff, a Neurodivergent Psychologist joins us to discuss discovering her own autism in the aftermath of her child’s diagnosis and how that has inspired her passion to support the neurodivergent community. Dr. Neff describes the experience of her autism revelation in this way, “For the first time in my life, my body made sense, my experience of self made sense, and it was a powerful moment of liberation.” We also delve into helpful strategies about sensory sensitivity and self-care that are helpful for adults and parents of children with autism.

For more information:

neurodivergentinsights.com

@neurodivergent_insights on Instagram

All Autism Talk (https://www.allautismtalk.com/) is sponsored by LEARN Behavioral (https://learnbehavioral.com).

Neurodiversity – Origins and Impact

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

Judy Singer is an autistic Australian social scientist. In the 1990’s, seeing echoes of her mother’s struggles in herself and her own daughter, it occurred to Singer that this common thread pointed to the possibility that their differences were actually neurological traits. They were having a first-hand experience of that part of biodiversity that is the natural range of variations in brain functioning: she coined it neurodiversity

The neurodiversity paradigm considers all brains to be normal; brain differences are simply the neurological counterpart to genetic variations in height, eye color, or hair color. Scientists consider such variation in biological traits to be essential to the health of individual populations and entire ecosystems.  When viewing autism through the lens of neurodiversity, it comes to light that some of the individual differences that have been assumed to need remediation in the past, may actually be important in helping society as a whole make progress through new and different ways of thinking. 

The concept of neurodiversity has been enthusiastically embraced by that portion of the autistic community who are able to speak, as it promises to alleviate some of the bias and discrimination they have experienced. Their common message? Specific words and types of support can have unintended negative effects, causing them to feel inferior, powerless, misunderstood.  

Arising from these negative experiences is a more widespread understanding of how words and actions affect the private events (thoughts and feelings) of people on the spectrum. ABA practitioners are charged by the BACB Ethical Code to “treat others with compassion, dignity, and respect,” and the voices of the neurodivergent convey essential information about ways to do this. 

LEARN’s Response

LEARN’s neurodiversity initiative is a direct result of listening to the insights of autistic folks who are able to express their experiences of living in a society that was built for neurotypical people. 

  • Development of a Person-Centered ABA workgroup – Learn Leadership charged a workgroup of clinical leaders with the task of supporting clinicians in reaching our vision for a neurodiversity-informed, Person-Centered ABA approach. The workgroup includes clinicians, supervisors, and clinical development individuals. 

  • Forming of a Neurodivergent Advisory Committee – The first action of the Person-Centered ABA workgroup was to formalize a process for getting input from the neurodivergent community.  The committee is made up of neurodivergent clinicians and non-clinicians who work at LEARN; they meet regularly to review and give feedback on articles, trainings, and other materials, and are compensated for their role on the committee.      

  • Co-creation of the Values Statement – The Person-Centered Workgroup and the Neurodivergent Advisory Committee co-created a values statement, entitled “LEARN Values Neurodiversity.” The statement was written in order to express our position to our clinicians and also guide subsequent actions by the Person-Centered ABA Workgroup. It was presented at an internal training and is available on our website. 
  • Communication – Shifting the mindset of a large organization doesn’t happen overnight. In order to connect regularly with our clinicians on person-centered topics, a portion of our monthly video message to clinicians includes information about subjects related to neurodiversity, such as ableism, assent, and including client input in treatment planning. It’s important that staff are not only hearing this information but also discussing it, so each month, clinical teams engage in discussions with their colleagues on these topics. 

  • Assent Leadership Workgroup – With the addition of “assent” to the BACB ethical code and the subject’s importance to treating our clients with compassion, dignity, and respect, LEARN is offering “guided exploration” groups in assent that meet regularly for four months. The intention is to create local leaders in Assent-Based Programming throughout our network.   

  • Treatment Plan Evaluations – Our Treatment Plan Evaluation team works hard to review clinicians’ clinical work through the permanent product of their treatment plans. These reviewers have been given resources to help them identify Person-Centered practices to promote in their feedback.

  • New Hire Training – In the 2022 revision of our New Hire Training for behavior technicians, we are explicitly teaching them about neurodiversity and assent, as well as ensuring that language throughout is respectful, and that programming examples fit Learn’s conception of Person-Centered ABA.
     
  • Autistic Voices – Throughout this process, we are having an increasing number of autistic guests on our podcast and making it a regular practice to interview autistic folks for guest blog posts.  These are ways that we can listen to autistic voices ourselves and also use our resources to center those voices in the ongoing cultural conversation.

As ABA practitioners, we have always cared about our clients – helping and supporting others is our entire reason for being. In the initial years of our still-young field, that care was expressed by taking a singular approach: teaching skills to help them function in our society. As autistic self-advocates find more channels by which to make their voices heard, the themes that are emerging tell us that there is more to supporting this community than just teaching skills. For instance, using words that validate our clients’ identities and sense of self is important. We can create a positive emotional experience for the people we support during the learning process – by listening to them and giving them agency. And most importantly: where success measures are concerned, our clients’ quality of life should be central.

LEARN is listening. 

To learn more about neurodiversity, check out our other blogs “Voices for All: Ash Franks” and “Neurodiversity: What It Means, Why It Matters.”

Voices for All: Ash Franks Talks about Supporting Autistic People While Being Autistic and Her Role on LEARN’s New Neurodiversity Advisory Committee

In September 2020, LEARN convened a group of neurodivergent staff to form our Neurodivergent Advisory Committee. The committee reviews and gives feedback on matters relating to neurodiversity and other person-centered ABA topics and was instrumental in the content, messaging, and visual design of LEARN’s Neurodiversity Values Statement. We asked Ash Franks, a member of the Neurodivergent Advisory Committee, to share her thoughts with us.   

 

HI, ASH! FIRST, I’D LIKE TO ASK YOU WHAT IT MEANS TO YOU TO BE AN AUTISTIC PERSON SUPPORTING OTHER AUTISTIC PEOPLE? 

Supporting other autistic people while being autistic means listening to what they have to say, however they communicate it, whether it be through an AAC device, sign language, PECS, or verbal language. It also means giving them breaks if they need it, and allowing them to use tools to cope (e.g. stuffed animals, headphones, weighted blankets, etc.). Looking back on my experiences as an autistic child has been very helpful in trying to help children who are at AST.

HOW DOES BEING AUTISTIC INSPIRE YOUR WORK IN ABA? 

Being autistic allows me to see different perspectives and ideas compared to neurotypical people, as they tend to think differently than I do.

TELL US A LITTLE BIT ABOUT THE NEURODIVERGENT ADVISORY COMMITTEE AND HOW IT WORKS. 

Basically, we are trying to re-vamp ABA materials through a more neurodivergent-friendly lens, so we can make our treatment as effective as possible. Having autistic people and other neurodivergent people look at ABA therapy through their eyes allows them to explain what works and what doesn’t work. This way, we can work to have treatment be as effective, safe, and as fun as possible for everyone involved. Having BCBAs see the autistic perspective is important because we have direct experience with what worked for us growing up versus what didn’t and might be able to help streamline the treatment to be as effective as possible.

CAN YOU GIVE ME AN EXAMPLE OF SOME FEEDBACK YOU HAVE GIVEN IN YOUR ROLE ON THE COMMITTEE? 

I tend to give feedback on the more artistic and creative side of things, as I am very geared towards having an eye for creative things in the world.

FROM YOUR PERSPECTIVE, WHY IS IT SO IMPORTANT TO INCLUDE AUTISTIC PERSPECTIVES IN OUR FIELD? 

Including autistic people in ABA is super important because we need to account for neurodivergent perspectives to make treatment as effective as possible. Since I am autistic, I can give a firsthand account of what has personally worked for me throughout my life, and what hasn’t. I myself was never in ABA therapy growing up, but I did other types of therapies that I also have found helpful from time to time.

WHAT ARE SOME OTHER PLACES IN OUR SOCIETY THAT YOU THINK IT WOULD BE HELPFUL TO LISTEN TO THE AUTISTIC PERSPECTIVE?

I think listening to autistic perspectives in the workplace would be very helpful. I think having a quiet room for staff that has sensory toys specific for staff would be very helpful, also maybe including a comfy place to sit with a weighted blanket would be good too. Another place it would be helpful to listen to autistic people is when it comes to shopping at malls, since malls can be overwhelming for most autistic people. I know some stores have “quiet” shopping hours where they reduce the lighting and turn off the music, and I really wish more places would do this.

ASH, THANK YOU FOR YOUR THOUGHTS AND FOR THE EXCELLENT WORK YOU’RE DOING ON THE NEURODIVERGENT ADVISORY COMMITTEE!

Ash Franks is a Behavior Technician for Learn Behavioral. Ash works in AST’s Hillsboro, Oregon location. Outside of work, she enjoys photography, cooking, video games, and spending time with family and friends. 

Myth: People with Autism Don’t Feel Love

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.

Neurodiversity: What It Means, Why It Matters

BY RONIT MOLKO, PH.D., BCBA-D
STRATEGIC ADVISOR, LEARN BEHAVIORAL

If there is one enduring hallmark of the American experience, it’s the immense diversity found within our expansive borders. Most of the time, we perceive diversity via differences in skin color, language, clothing, places of worship, or even the foods people eat when gathered around the table with their families. There is, however, one major aspect of diversity that is often overlooked—one that comes as no surprise, considering it cannot be detected solely through visual means. I am, of course, referring to neurodiversity.

Coined in the late 1990s by sociologist Judy Singer—who is on the autism spectrum—neurodiversity is a viewpoint that characterizes brain differences among individuals as normal, rather than as a disability. This viewpoint reduces stigmas around learning and thinking differences, while calling attention to the ability of neurodivergent communities to benefit from multiple perspectives and make greater contributions to society. Central to the movement is a rejection of the idea that these unique individuals need to be cured or fixed. Instead, it’s held that people possessing different types of brains need to be embraced and provided support systems that allow them to participate and contribute as members of the community to the best of their ability.

Grounded in Science

Unsurprisingly, the foundations of this not so new movement are grounded firmly in science and empirical study. By leveraging MRI results from hundreds of individuals, researchers have been able to compare the brains of people diagnosed with learning differences to their counterparts. So far, studies have shown that the brains of neurodivergent individuals are, in fact, unique. For example, the part of the brain that maintains language processing works differently for people diagnosed with dyslexia. Additionally, the prefrontal cortex, which manages executive functioning and attention, develops much slower in children diagnosed with ADHD. In other words, these individuals are not necessarily operating with a learning deficit but rather possess brains that are literally wired differently.

A Neurodiverse Population

Whether a group of kids recently diagnosed with autism or adults still grappling with ADHD or dyslexia, the American neurodiverse population is quite substantial. According to a 2021 report from the Center for Disease Control and Prevention, one in every 44 children in the United States is diagnosed with some sort of autism spectrum disorder, and an estimated 5.4 million adults—or roughly 2.2 percent of the entire population—fall somewhere along the spectrum. Many people on the spectrum have contributed (or still do) to their communities every day, such as Albert Einstein, Anthony Hopkins, Henry Cavendish, Greta Thunberg, Jerry Seinfeld, and Elon Musk. They have been among the world’s highest achievers, impacting the arts, sciences, technological innovation, and activism.

In much the same way as the neurotypical population, the neurodivergent population is broad, diverse, and multidimensional. It’s crucial, then, for the public not only to embrace their different brethren but also to actively promote opportunities for them both in society and in the workplace at all abilities and levels.

Fortunately for society writ-large, corporate America is starting to take notice. A recent article published in the Harvard Business Review named neurodiversity as a bona fide “competitive advantage,” noting the unique and, often, incomparable output provided by atypical members of their workforce. Numerous companies, including Hewlett-Packard, Enterprise, Microsoft, SAP, and Ford, have recently begun to reform their HR practices in an effort to expand neurodiversity in their ranks by identifying, hiring, and empowering these unique individuals. The results, so far, have been outstanding, with managers noting legitimate “productivity gains, quality improvements, boosts in innovative capabilities, and broad increases in employee engagement.”

Diversity of all kinds, including neurodiversity, strengthens our daily institutions. Just as we are seeing a focus on diversity, equity, and inclusion (DEI) in employment and other areas of life and commerce, we must also remember that recognizing and celebrating differences, promoting justice and fairness, and ensuring true support and inclusion applies not only to people with observable differences but also to our neurodiverse populations. Not all cognitive differences are visible, and it’s crucial to keep in mind that there’s more than meets the eye when it comes to true diversity.

In another blog post, Dr. Molko explains the history and evolution of applied behavior analysis (ABA) therapy. Read the story.