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Tag: neurodivergent

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

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

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.