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Priorities provides ABA therapy to help children with autism.

Katherine Johnson

Myth: Autistic People Lack Empathy

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

Note: This article is about a form of ableism that affects one part of the autistic community: autistic people who are proficient verbal communicators. Those who communicate with AAC devices, typing, sign, or who don’t yet have the communication skills to engage with the wider world face other forms of ableism and discrimination not described in this article. 

The Double Empathy Problem

Remember the game “telephone”? One person whispers a message to another, that person whispers to the next, and on down the line until the last person announces the message so everyone can laugh at how many times the original sentence has been distorted. 

Using a variation of this exercise, a study looked at how a message fared if the string of people in the telephone line were all autistic, all neurotypical, or a mix of both. It turns out that the rate at which the message degraded among the verbal autistic people was no greater than that of the neurotypical people.  It was only when the message was sent through a mix of autistic and neurotypical people that the meaning deteriorated significantly faster. 

What does this tell us? 

If effective social communication was objectively deficient (not just different) in verbal autistic people, we would expect that the all-autistic string of people would produce the worst decline in messages in the study; that wasn’t the finding. Instead, the autistic people received and passed along messages amongst themselves just as well as the neurotypical people. The faulty communication resulted not from the autistic participants but from the mismatch between autistic and neurotypical communication.  

This small study illustrates a theory by Dr. Damian Milton that he calls the “double empathy problem.” Challenging the assumption that neurotypical people have social skills that autistic people simply lack, he posits that the disconnects between autistic and non-autistic people are not the result of a one-sided skill deficit; they are instead a mismatch of neurotypes.

Reframing

This is a dramatic reframing of the common belief about these communication breakdowns, which placed the fault squarely on the social skill profile of the autistic folks. The “empathy” part of the theory’s name refers to the widely-held idea that autistic people lack empathy, when the theory would suggest that autistic empathy is simply expressed differently. Slowly but surely, researchers are beginning to look at that other side of the coin: how the social skill profiles of neurotypical people might also undermine relationships.   

For years, research has demonstrated that autistic people have difficulty interpreting facial expressions; a 2016 study finally looked at the reverse. They asked neurotypical people to interpret facial expressions of autistic folks – and they were unable to do it. The results of a series of studies in 2017 suggest that one reason people of different neurotypes have difficulty connecting is because neurotypical people form negative first impressions of autistic people (based upon appearance, not conversational skills), and subsequently avoid them. This indicates that some of the social isolation that autistic people face is due to ableism and discrimination.  

Missing Out

The difficulties autistic and non-autistic people have connecting negatively impact both sides. Since autistic people are in the minority, disconnection from the neurotypical portion of their community can increase their feelings of loneliness and isolation. For its part, the neurotypical world is missing out on the unique, often innovative, autistic perspective. 

Autistic people who have had huge cultural impacts on our society (environmental activist Greta Thunberg, actor Dan Akroyd, and Pokemon creator Santoshi Tajiri, to name a few) have had success in spite of a society that is largely unsupportive of and, at times, openly hostile to, the social profile of autistic folks. Imagine what brilliance we miss out on when autistic people are looked over, avoided, not hired, etc.  

Even those who are not destined to become one of the famous few mentioned above have a perspective that can deeply impact those around them. Autistic people see the world from different angles, which can be an advantage in everyday problem-solving. They generally have a strong sense of justice, an unwillingness to be cowed by hierarchy, and a drive for honesty, sincerity, and specificity, all beneficial qualities in social relationships and the workplace.

Expanding Neurotypical Empathy

The solution to the separation between people of different neurotypes has largely been to teach autistic people how to understand the rest of the world better. But by considering the double-empathy problem, we can see that this is only part of the issue. The other part is that non-autistic people also have skill deficits: interpreting and interacting with autistic people. 

Just as history is written by the winners, social norms are written by the majority. If we want to work toward a future where people of all neurotypes better understand one another, we must listen to the experiences of the minority. It’s important to recognize that neurotypical “social norms” exist because they’re most common, not because they are inherently superior. These dominant “social norms” directly result from how neurotypical people think, behave, and process the world. 

“Empathy” is about understanding another person’s experience. Ironically, to succeed in our society, autistic people must display empathy nearly constantly: decoding others’ unwritten rules and learning to approach the world in a way that works for others. To bridge the divide, nurture the gifts of the autistic people in our society, and for everyone to benefit from the valuable perspectives of the neurodivergent, those with neurotypical brains must follow this example. By challenging themselves to work toward understanding and adapting to the way autistic people see and experience the world, neurotypical folks can open themselves up to new friends with an intense devotion to honesty. Employers will find innovative autistic employees with rare specializations and a knack for accuracy. And society will benefit from recognizing and celebrating the valuable and previously underappreciated gifts of the autistic mind. 

Damian E.M. Milton (2012) On the ontological status of autism: the ‘double empathy problem’, Disability & Society, 27:6, 883-887, DOI: 10.1080/09687599.2012.710008

Sheppard, E., Pillai, D., Wong, G.TL. et al. How Easy is it to Read the Minds of People with Autism Spectrum Disorder?. J Autism Dev Disord 46, 1247–1254 (2016). https://doi.org/10.1007/s10803-015-2662-8

Sasson, N., Faso, D., Nugent, J. et al. Neurotypical Peers are Less Willing to Interact with Those with Autism based on Thin Slice Judgments. Sci Rep 7, 40700 (2017). https://doi.org/10.1038/srep40700

LEARN’s Kerry Hoops Uses Assent-Based Practice to Make COVID-19 Vaccination Comfortable for Kids with Autism

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By: Katherine Johnson, M.S., BCBA

Senior Director of Partnerships, LEARN Behavioral

Vaccination visits can be terrifying for an autistic child – a new environment, unfamiliar sounds and smells, being touched by a stranger, and all of this culminating in a painful poke. Anxiety and unwillingness to sit for a vaccine shot can lead to parents and medical professionals winding up with a difficult decision: hold the child down against their will or forego the vaccine. At LEARN, we care about our clients’ health and the experience they have when receiving healthcare.

Recently, the Wisconsin Early Autism Project (WEAP, a LEARN organization) partnered with the Autism Society of Greater Wisconsin in a series of vaccine clinics. These events were carefully designed to provide families with autistic children a positive experience while receiving their COVID-19 vaccines.    

The clinics were held in a local children’s museum, and a pair of seasoned clinicians teamed up with each child, who had reviewed a vaccination social story before coming. Parents answered a questionnaire about their child’s experience with shots and specific interests in advance; clinicians used this information to build rapport with the child, make them comfortable, and provide distraction. Choice was built into the entire experience: children got to select toys, the type of bandage they received, and the body part where they would receive the shot. Clinicians also provided non-invasive devices to mitigate injection pain, like the Buzzy pain blocker, and shot blockers. The most intriguing part? Clinicians waited until the child indicated they were ready before giving them the vaccination.

The result was phenomenal: dozens of autistic children receiving their COVID-19 vaccine without a tear. Kerry Hoops, our Clinical Director at WEAP, said that one experience in particular stood out to her: a boy who was terrified that the shot would hurt, asking about it repeatedly. After assuring him they would not let the shot be a surprise, they spent some time doing one of his favorite activities: having races around the museum. They gave him the opportunity to watch his mother get the vaccine, and then took him to a sensory room in the facility where they watched wrestling (WWE) together. Getting him comfortable was a process that took nearly an hour, but the end result was a child who received his vaccine willingly, and left having had a positive experience.  “The coolest thing is seeing the parents’ responses,” said Hoops. “They were so happy because they were not expecting the vaccination experience to go as well as it did.”

The procedures Hoops and our other clinicians at LEARN used are all evidence-based practices commonly used in applied behavior analysis (ABA) called “antecedent interventions.” Frequently, interfering behaviors (like screaming or bolting from a doctor) occur because the child is trying to escape from something uncomfortable or scary. Antecedent interventions are meant to create an environment that the child doesn’t want to escape from. “We’re trying to create a positive experience so when they go in for their next vaccine, they’re not going to be afraid,” says Hoops.  

The most groundbreaking component of these vaccine clinics was it was not the medical professional who decided when it was time for the shot, nor was it the parent. It was the child. In addition to using antecedent interventions, our WEAP clinicians also had the medical professionals hold off on the procedure itself until the child had indicated they were willing to receive the vaccine – something known as “gaining assent.”  

Assent, having a pediatric patient agree to treatment, is a practice that has been required for medical research since 1977, citing the need to respect children as individuals. Since then, some practitioners have extended assent procedures to their regular pediatric practice, asking for the child’s permission before they listen to their heart, for instance. The new BACB ethics code includes a provision for “gaining assent when applicable,” and proponents argue that Assent-Based ABA prevents difficult behavior and teaches children critical self-advocacy skills. The ability to determine what is and is not comfortable and acceptable for oneself is particularly important for children who struggle to use language, or who are at higher risk of being misunderstood because they are autistic. At LEARN, Assent-Based Programming is one part of our overall Person-Centered ABA Initiative. 

Although Assent-Based practice doesn’t guarantee that every child will eventually agree to the procedure (2 children of the 73 children in the clinic did not assent to the vaccine), it was overwhelmingly successful. The impact was evident in the enthusiastic responses from parents afterward. One parent wrote, “Thank you for the BEST vaccination experience ever! Our family was overjoyed to have been part of this clinic.” 

LEARN is proud to announce that WEAP and ASGW are planning on expanding their vaccine clinics to regular children’s vaccines in the coming year. For more information, check out the ASGW’s website.

Kerry Hoops, MA, BCBA, is the clinical director for Wisconsin Early Autism Project’s Green Bay region. Kerry began her career helping children with autism over 20 years ago when she was attending UWGB for her bachelor’s in psychology and human development. She fell in love with the job and chose to work in the field of autism as her career. Kerry furthered her education at the Florida Institute of Technology and Ball State University with a master’s in applied behavior analysis and became a board certified behavior analyst (BCBA). She loves helping children and families in Wisconsin and internationally in Malaysia. Kerry also works at the Greater Green Bay YMCA for the DREAM program, focusing on events for socialization for adults with special needs. She has been on the board of directors for the Autism Society of Greater Wisconsin since 2014 and is the acting president.

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Allyship Tips for Neurotypical Friends of the Autistic Community

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By Katherine Johnson. M.S., BCBA

Senior Director of Partnerships, LEARN Behavioral

Are you working to become a better ally to the autistic and neurodivergent folks in your community? The surest way to be an effective ally is to reach out to autistic/neurodivergent people to ask how they would like your allyship. If you’re preparing for this type of conversation, here are some points to consider.

1. Listen to the voices of autistic and neurodivergent people and their caregivers.

These last few years of lockdowns have given rise to a surge in humans connecting over the internet and taking time out to hear one another’s stories. Through social media, many verbal autistic people are sharing their experiences and more and more people are listening. This is the first place to begin when learning to be an ally.

Also critical in understanding the autistic experience is listening to the stories of caregivers of those who aren’t able to communicate as they offer a unique perspective and are often deeply in need of compassionate and understanding allies.

2. Throw out your stereotypes

There are autistic people who love to chat, and there are autistic people who struggle to communicate their most pressing needs. Some prefer to be left alone, while others want to spend all of their free time being social. There are people on the spectrum who have intellectual disabilities and those on the spectrum who have a genius IQ. Don’t assume that one autistic person is like another; just like all of the other humans on this planet, autistic folks are individuals.

3. Sympathy is not empathy

On the topic of respect, remember this: you can feel for someone without feeling sorry for them. Don’t fall into the trap of thinking that because someone is different from you, they are inferior or their life must be less fulfilling. Pity assumes inferiority, which is insulting and demeaning. True allies assume competence, recognize their common humanity, and seek to build trust and understanding with their neurodivergent friends and neighbors.

4. If you want to know how they feel – ask

The communication differences between autistic and non-autistic folks remind us of a universal human truth: you don’t really know how anybody feels unless they tell you. Sure, we all try to read each other’s facial expressions and tones of voices, but in a world where our brains work differently, this is an imperfect system! A neurotypical friend of mine recently made this mistake. An autistic teen had been pacing, breathing heavily, and talking under his breath. My friend assumed that the teen was in crisis, but when I simply asked how he was doing, it turned out that he wasn’t even mildly upset – just lost in thought.

On the other side of the coin, if you want someone who is neurodiverse to know how you feel, don’t rely on heavy sighs or raised eyebrows to communicate – speak your truth. Keep in mind that some autistic people use pictures to convey their emotions, while others have alexithymia (an inability to describe their own emotions). Communicating feelings should always be within the bounds of each person’s comfort level. While being upfront about our emotions can remove the guesswork from a vulnerable connection, nobody “owes” it to you to explain their experience.

5. Notice distress? Ask if you can help

In the days before everyone had a GPS in their pocket, I was offered directions many times, simply because I looked lost. Once, as a teenager with a broken heart, I burst into tears in public, and a grandmotherly stranger immediately threw her arms around me to comfort me. Strangers are often happy to help others…. that is, when it is obvious what kind of help they need. The communication differences between neurodivergent and neurotypical folks may mean it’s not obvious, so it’s best to ask.

Like most of these tips, this applies to folks at all points on the spectrum – from those who are non-verbal or need substantial support to those who have the life skills to be one of your colleagues or even your boss. Autistic people of all skill levels are living in a world not designed for them, and they can become overwhelmed or distressed by things that may not be apparent to others. If you see someone “melting down,” they may appreciate the offer of help – perhaps you can get others around them to give them some space, or you can assist them in getting out of a distressing situation. I recently interviewed an autistic man who related the story of his meltdown in an airport, where he cried openly for 20 minutes before anyone offered to help. The message he wanted to convey was this: when someone is overwhelmed, just having someone offer help can be comforting.

An autistic person by themselves in public may be able to articulate what they need with spoken language; a non-verbal autistic person may communicate by signing, using pictures, or gesturing. When the person melting down is accompanied by a caregiver, the caregiver may have more familiarity with the autistic person’s unique ways of communicating and may let you know if there’s something you can do to assist. If you have a friend on the spectrum, it’s helpful to be prepared in advance: ask your friend when the best time would be to talk about their triggers and how you can help during a meltdown.

6. Say what you mean….and mean what you say

Our society accepts, sometimes even encourages, “white lies” to spare people’s feelings, but this can backfire with people on the spectrum.

Consider this scenario: a new acquaintance asks if you’d like to get together, and the truth is that you don’t have space in your life for an additional friend. You might agree to exchange information and rely on the person to “get the hint” from your lackluster tone or the fact that you are always “busy.” But reliance on non-verbal messages like this puts people on the spectrum at an unfair disadvantage. Characteristically honest and literal, an autistic person may think they have actually made a friend and be far more hurt by the subsequent ghosting than they would have been had you simply been honest from the beginning. Perhaps, “You seem like a wonderful person, but I have to be honest that I am really busy, and I don’t have time to devote to a new friendship.”

Develop the ability to deliver messages like this truthfully and with compassion. Remember that most people on the spectrum will take you at your word – and dishonesty is supremely unkind.

Along these same lines, a note about humor: sarcasm and teasing are forms of humor that are often simply not funny to autistic people. This doesn’t mean they don’t have a sense of humor. There are many other types of humor, so if sarcasm and teasing are your main forms of joking, think about expanding your comedic range.

7. Be sensitive to the sensory

The neurological profile of autistic people includes a sensory input system that may be quite different than your own. Most people have always taken for granted that everyone else experiences smell, sound, noise, light, and other visual input in much the same way they do. This assumption can be a huge barrier to understanding and connecting with autistic people. Not only can certain sensory stimuli be uncomfortable, it can also affect their ability to focus, communicate, or regulate their emotions. When my son walked into his kindergarten classroom and saw the walls covered from floor to ceiling with pictures and letters and words, he turned to me and said, “This room makes me dizzy!” Remember that not every neurodivergent person can put into words how these disorienting environments affect them.

8. Get comfortable with noises and movements you don’t make

Everyone stims. When you bounce your knee because it feels good, hum tunelessly enjoying the buzz in your ears, or twirl your hair around your finger: you are stimming. Autistic people might stim in ways that might be less familiar to you – they may repeat words over and over or move their eyes in different ways or flap their arms. Stimming can block out unwanted sensory input – much as children stick their fingers in their ears and hum to block things out. Stimming can absorb energy, as it does when you’re waiting for something and you unconsciously squirm or pace. Stimming can also be calming, as it might be for you when using a stress ball or a fidget spinner. When you see someone in public moving or making noises in a way that you don’t recognize, resist any urge you may have to give a sideways glance. Perhaps, it is simply someone on the spectrum, another human who stims (as we humans do) and deserves respect (as we humans do).

Becoming an ally to any group you’re not a member of means being willing to really listen to another perspective, to honor their experience, and integrate that into your own understanding. Clinical Director Ashley Williams reflects on her own journey:

“I think part of being an ally is being vulnerable enough to recognize that you’ve made mistakes previously. I feel like I used to dig my heels in as a clinician because it was some perspective I clung to, and I didn’t give myself permission to rethink and admit I was wrong. I didn’t see value in changing my mind and admitting my own faults. When it comes to autism, I don’t think I became a better ally until I was comfortable saying I was wrong, and I’m open to feedback/rethinking on an ongoing, daily, basis. I always want to convey my openness to changing how I speak/act/behave to make the world a more welcoming place for those whose experiences differ from my own.”

Neurodiversity – Origins and Impact

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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.”

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. 

Top 5 Autism Studies from the Last Year

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BY KATHERINE JOHNSON, M.S., BCBA
SENIOR DIRECTOR OF PARTNERSHIPS

Looking back at 2021, there were significant developments, both in research and thought leadership, in the field of autism and applied behavior analysis (ABA).  Here are some studies and papers you don’t want to have missed!

 

Girls’ Genetics and Autism

2021 gave us another important building block in the ongoing investigation in to how and why autism manifests differently in girls than in boys.  A study by Jack et. al. found that there was a much greater difference in brain activity in autistic and non-autistic girls, than was previously found between autistic and non-autistic boys when viewing biological motion.  In the second half of the investigation, they looked at the girls’ DNA.  What they found (greater differences in brain activity and more gene mutations among the girls) bolsters the “Female Protective Effect” theory, which holds that girls require more genetic predisposition to autism in order to show autistic traits.  Inquiries into how autism manifests differently depending on sex is integral to being able to more accurately identify and support girls on the spectrum.  

Allison Jack, Catherine A W Sullivan, Elizabeth Aylward, Susan Y Bookheimer, Mirella Dapretto, Nadine Gaab, John D Van Horn, Jeffrey Eilbott, Zachary Jacokes, Carinna M Torgerson, Raphael A Bernier, Daniel H Geschwind, James C McPartland, Charles A Nelson, Sara J Webb, Kevin A Pelphrey, Abha R Gupta, the GENDAAR Consortium, A neurogenetic analysis of female autism, Brain, Volume 144, Issue 6, June 2021, Pages 1911–1926, https://doi.org/10.1093/brain/awab064

 

How Can Behavior Analysis Help Prison Reform?

Many behavior analysts have heeded the call to focus on their own cultural competence and anti-racism work; this paper outlines ways they can put those skills to good use.  Crowe and Drew review the history and current state of a social injustice faced by many people with disabilities: segregation via incarceration.  The authors posit that behavior analysts can help to interrupt the “school-to-prison pipeline” and outline their theory.  Although the authors call for a grand restructuring of the prison system (including abolition of the current system), they also offer thoughts on how behavior analysis could improve current institutions.

Crowe, B., & Drew, C. (2021). Orange in the new asylum: Incarceration of individuals with disabilities. Behavior Analysis in Practice, 14(2), 387-395. https://doi.org/10.1007/s40617-020-00533-9

 

Bridge Over Troubled Water…

If you have been following the conversation about ABA and neurodiversity, you’ll want to read this paper.  A group of Autistic and Non-Autistic authors challenge the belief that ABA is inherently harmful for Autistic people and proposes the perspective that behavioral interventions can be “compatible with the neurodiversity paradigm.”  After a history of autism and behavioral interventions, the authors delve into a thorough discussion of how Naturalistic Developmental Behavior Interventions may bridge the gap between opposing viewpoints about the use of behavioral interventions with people on the spectrum.  

Schuck RK, Tagavi DM, Baiden KMP, Dwyer P, Williams ZJ, Osuna A, Ferguson EF, Jimenez Muñoz M, Poyser SK, Johnson JF, Vernon TW. Neurodiversity and Autism Intervention: Reconciling Perspectives Through a Naturalistic Developmental Behavioral Intervention Framework. J Autism Dev Disord. 2021 Oct 13. doi: 10.1007/s10803-021-05316-x. Epub ahead of print. PMID: 34643863.

 

The Function of…. Happiness?

And the Functional Analysis (FA) gets another twist!  Thomas et. al. assessed whether or not paying attention to indices of happiness would assist in finding effective interventions to decrease challenging behavior.  They found that when interventions were derived from what they learned about the children’s happiness, they were as effective as interventions based solely on the function of the challenging behavior, and they were associated with more behavior associated with happiness.  In the search for effective treatments that are maximally acceptable to consumers, this is a useful addition to the FA!   

Thomas BR, Charlop MH, Lim N, Gumaer C. Measuring Happiness Behavior in Functional Analyses of Challenging Behavior for Children with Autism Spectrum Disorder. Behav Modif. 2021 May;45(3):502-530. doi: 10.1177/0145445519878673. Epub 2019 Sep 30. PMID: 31565953. 

 

Assent in Research

With the addition of “assent” to the BACB Code of Ethics, behavior analysts have begun the search for research, resources, and materials on the topic.  After a discussion of the federal statute and how it may or may not apply to autistic subjects, the authors discuss assent in the context of the behavior analytic values of self-determination and choice.  They then examine how frequently assent has been obtained in the behavior analytic research (spoiler alert: not frequently), note the methods that have been used, and propose a procedure for obtaining assent from nonverbal potential research participants.  This may be the only JABA article on assent in 2021, but it’s a fair bet that it will inspire many more in 2022. 

Morris C, Detrick JJ, Peterson SM. Participant assent in behavior analytic research: Considerations for participants with autism and developmental disabilities. J Appl Behav Anal. 2021 Sep;54(4):1300-1316. doi: 10.1002/jaba.859. Epub 2021 Jun 18. PMID: 34144631.

Myth: Kids with Autism Don’t Have Emotions

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BY KATHERINE JOHNSON, M.S., BCBA
SENIOR DIRECTOR OF PARTNERSHIPS

My cousin, a teenager with a broken heart, lay on my couch, crying. Her little brother, a mostly-non-verbal autistic four-year-old, wiped the tears off of her face and then tickled her to get her to laugh. 

A boy I worked with many years ago wanted desperately to get his baby brother to stop crying. He ran to get some scissors and told his mom, “Tag, Tag!” He, himself, was often irritated by tags in clothing, and, seeing his brother inconsolable, believed that maybe the tag in his onesie was the cause of his distress.    

A young autistic girl in a social skills group I ran years ago woke up earlier than her parents one day. She got out every glass, bottle, cup, and bowl in the house and arranged them in intricate patterns around the kitchen floor. When her mother got up, she looked up with pride and said, “Mommy, I made breakfast for you!” 

Autistic people have emotions. They love, they hurt, they empathize, and they care. So, where in the world did the myth about being “unemotional” come from? 

The answer may be in the concept of alexithymia. 

Alexithymia refers to the inability to recognize and express emotions. It’s not considered a clinical diagnosis or disorder but rather a condition or a personality trait, and has been studied since the 1970s. It occurs in about 10 to 13 percent of the general population but is more common among people on the spectrum, occurring in close to 50 percent of autistic folks—a high prevalence that may lead to people confusing the trait with autism itself. 

If you or your child experiences alexithymia, then you know firsthand that those with this trait still have deep feeling—they just have difficulty naming their emotions and explaining their feelings. Some may not be able to distinguish between their emotions and the bodily sensations connected to them, and may have less imagination or ability to fantasize than those without alexithymia. As one non-autistic man with alexithymia explained it: “Obviously, I’ve got a vocabulary. I’ve got words for emotions. But whether they’re the right words for the right emotion is a different point altogether.…”

Although experts have been unable to pinpoint a cause, research suggests a genetic component, and that environmental factors such as trauma, health conditions, and socioeconomic factors may play a part.  A brain injury to the anterior insula can also cause alexithymia. 

As parents and caregivers, we are always eager for more information on what we can do to help our children. Since autistic people are more likely to have alexithymia, it is important that family members, service providers, and the community at large understand the condition and the unfortunate risks that come with it. For instance, research suggests that people with alexithymia experience depression and anxiety significantly more often than those without the condition—problems that should be taken seriously and treated.  

Anxiety and depression may be due to people not understanding their own feelings, and to the effects alexithymia can have on their personal relationships. For example, some people with the condition report that they know when other people are experiencing negative emotions, which can feel distressing. Not understanding what those emotions are or how to react to them can make the situation even worse. For these reasons, it’s important for others to recognize that what may just seem like a simple skill deficit can affect an individual’s quality of life and well-being far more than they are able to communicate. And of course, if the person also has autism, communication may be even more difficult.       

When one team of researchers conducted a meta-analysis of studies on alexithymia and autism, they concluded that although the two things can co-occur, alexithymia is NOT a core feature of autism— although there isn’t yet a consensus. Regardless, since alexithymia appears to increase the risks for mental health challenges like anxiety and depression, and for unhealthy behaviors like greater alcohol consumption and lower levels of physical activity, healthcare providers consider it a trait that is important to identify. This way, alexithymic individuals—autistic and non-autistic alike—can be proactively supported in all of these areas.

The last few years have seen more and more autistic people raising their voices, sharing their experiences, and inviting others to hear their stories. As we listen, it’s important that we all work to dispel myths around autism, so that we can see people for who they truly are. Alexithymic autistic people have emotions, like everyone else. They just need support from loved ones in expressing and processing their feelings, and they need professionals to understand their unique needs so they can provide the best assistance. Likewise, non-alexithymic autistics deserve to be seen as themselves—and not bogged down in harmful myths about their lack of an emotional inner life. Once again, science arrives at a truth that harmonizes with what philosophers have long told us: regardless of what we look like—or behave like—on the outside, we are all humans, craving to connect emotionally with other humans.   

For more on mental health and autism, listen to our recent podcast, “Nobody’s Normal: How Culture Created the Stigma of Mental Illness.” Here, Roy Richard Grinker, a professor of anthropology and international affairs at George Washington University, explores stigmas around various diagnoses, including autism.

 

 

Gaigg SB, Cornell AS, Bird G. The psychophysiological mechanisms of alexithymia in autism spectrum disorder. Autism. 2018 Feb;22(2):227-231. doi: 10.1177/1362361316667062. Epub 2016 Nov 2. PMID: 27811193.

Martino, G., Caputo, A., Vicario, C. M., Catalano, A., Schwarz, P., Quattropani, M. C. (2020).  The Relationship Between Alexithymia and Type 2 Diabetes: A Systematic Review.  Frontiers in Psychology, 11, 20-26.  DOI: 10.3389/fpsyg.2020.02026.   

Kinnaird, E., Steward, C., & Tchanturia, K. (2019).  Investigating alexithymia in autism: A systematic review and meta-analysis.  European Psychiatry, 55, 80-89.  doi: 10.1016/j.eurpsy.2018.09.004. 

How to Help Your Child Through a Meltdown

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by Bradley Ross, M.A., BCBA, LBA
Assistant Clinical Director, LEARN/AST, Louisiana

There is no “one-plan-fits-all” approach for handling meltdowns. When children with autism hit sensory overload, their reactions can be intense, and knowing how to respond thoughtfully in the heat of the moment can be challenging.  

Unfortunately, there is no magic wand to make meltdowns go away. But there are tactics and strategies to help tame a meltdown when your child feels overwhelmed. The key is to stay calm and work your way through it.

Assessing the Situation, Identifying the Triggers

One thing that can help is to understand the reason for the meltdown, while recognizing that reasons can vary greatly from child to child. For instance, your child may not want to do certain tasks. They may be nervous about school. They may get embarrassed about underperforming, when compared to peers. Or they may struggle with separation from mom or dad.

Some kids have meltdowns because of environmental factors like room temperature, new students, or how the desks are set up in the classroom. Even small changes in the environment can lead to lead to intense feelings—rearranging furniture, for instance. Take note of the time and place of the meltdown and factors that might be overwhelming. Once you identify the trigger, you can see if there is a way to avoid it.

If your child can have conversations, try to discuss and get to the root of the problem. This can also help you identify patterns of behaviors to address. If your child is unable to have a conversation or communicate verbally, pay attention to other communication cues to try to better understand the problem.

Knowing the cause of the behavior isn’t mandatory, but it is helpful in knowing how to address it. In some cases, you can eliminate the trigger. Other times, you just have to wait it out and  give your child space to rest and recover.

Home-Based Strategies

One way to make your expectations clear is to create a token/reward system at home. For example, you can create a chart on which you and your child come up with and list desired behaviors. Use pictures instead of words if it helps your child understand your expectations. Talk out loud about your goals and the rewards your child can expect for meeting those goals. Remember: the rewards don’t always have to be tangible items like a pack of gummies or a cup of hot chocolate. Rewards can also be experiential, such as playing a special game before bed, reading a favorite book, or baking a tasty treat together.

As you work with your child to create your list or chart of behavior goals, consider these possibilities:

  • Turn-taking: Here, you can explain that you and your child are going to sit down and play with toys. After a minute, ask your child for a turn with their toy. If your child gives you a turn, they can earn a token/reward.  

  • Sportsmanship: Play a game with your child. Ask them if they want you to let them win the first game. During the second game, let them know you’re going to try to win. Tell them that if you win, and they tell you “good game,” while keeping a happy face, they will earn a token/reward.

  • Doing work: Let your child know that in two minutes, you’re going to ask them to pick up their crayons. If they pick them up quickly, they can earn a token/reward.

Start with easy goals. Over time, you can provide less warning and make these more natural,  everyday interactions.

Understanding What Happens at School

Targeting meltdowns at school can be more difficult since you aren’t there. If your school has a reporting system to give you a sense of your child’s behavior each day, that can help you measure progress.

For example, some schools use a color scale: green equals good behavior; yellow is slightly disruptive; and red is a meltdown. If your school does not have a behavior reporting system and you think your child could use one, talk to your child’s teacher.

You could include behavior reports from the school in your token/reward system at home—or even set up a separate system based on these reports. For example, a green mark at school could equal an hour of TV time or three tokens, while a yellow mark could equal 30 minutes of TV or two tokens, and a red mark could equal 15 minutes of TV or one token.

You’re probably wondering, “Why reward a red score?” The reason is to reward your child for the positive behavior—bringing home the report—and to avoid taking away everything. For instance, if they think they will lose every privilege, this can increase the chance of a meltdown at school. Remember that you’re creating a reward system, not a punishment system. Focus on reinforcing positive behaviors, without being too harsh when there is a meltdown.

Also realize that reports you receive from school—or from your child or from your own observations, for that matter—are not a complete representation of the situation. Typically, a number of factors contribute to the situation, and behaviors that happen at school (or anywhere else, such as at the doctor or on the playground) can change according to the environment. Be careful not to make assumptions about solutions that may not work in every environment.

Stick to Your Rules, Celebrate Small Victories

Once you set the rules, stick to them. Avoid bartering. This system holds your child accountable and can begin with goals that are easy to reach. Accept that kids will make mistakes and that all kids engage in meltdowns from time to time. Remember to stay calm and keep your cool—these are key to addressing your child’s behavior successfully.


Start with small goals and set realistic expectations—the first one being: your child’s meltdowns will not stop at once. This is a process that will happen slowly over time. Track your progress, and celebrate the little victories when your child reaches behavior goals.

Looking for more strategies on raising kids with autism? Learn how a “calm down kit” can help your child through the hectic holiday season.