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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.”

Help Your Child Build Friendships With Kids With Autism

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The following is an interview published by Chicago Parent with LEARN Behavioral Chief Clinical Officer Dr. Hanna Rue, Ph.D., BCBA-D.

By: Claire Charlton

Your child likely has the opportunity to build friendships with kids on the autism spectrum. How can you help cultivate these unique relationships?

This back-to-school season, your child is settling into a new routine alongside children of many abilities, and as they are making new friends, now is a great time to encourage them to reach out and build a friendship with a child with autism. Because autism is a spectrum disorder, your child’s classroom, cafeteria, chess club, or ballet class will likely include a child with autism, says Hanna Rue, Ph.D., BCBA-D, Chief Clinical Officer with LEARN Behavioral.

Current statistics show that 1 in 44 children has been identified with autism spectrum disorder (ASD) — for boys, the prevalence is four times higher and numbers vary from state to state, according to data from the CDC. “I’m never surprised when a parent comes to me and says their child has met a peer with typical autism characteristics in the classroom,” says Dr. Rue.

Kids with autism have strengths and challenges just like their neurotypical peers and can bring a lot of value to a friendship. “What I have found is that neurotypical kids are amazed that some kids with autism have the same special interests as they do,” Dr. Rue says. “Maybe they are passionate about zoo animals and can provide all sorts of information that neurotypical kids are impressed by.”

Each child is different and not every child mixes well with groups of peers. A child with autism is often able to look past differences or idiosyncrasies that can put off neurotypical peers, which makes them a good source of friendship for kids who struggle to fit in, Dr. Rue says.

While it may appear that kids with autism prefer to play alone, they really do enjoy companionship and sharing their interests with others. Here, Dr. Rue shares some wisdom about how to help your child build friendships with kids with autism.

How to make it happen

A child with autism may experience sensory sensitivities that neurotypical peers can empathize with. Loud noises, loud music, bright lights, even transitioning between activities can present challenges for some children.

“Sometimes a child with autism has challenges with communication and that can cause distress on either side,” Dr. Rue says. “I always tell folks if they are working with kids to develop friendships to allow for plenty of warm-up time.”

When planning a playdate, take it slow. Show your child’s new friend a quiet room in your home where they can take a break if needed, and recognize that if they take this break, it likely signals that they are overwhelmed, not disinterested. Communicate to your own child that everyone is frightened or overstimulated by something at some point and help them recognize their own fears or needs.

“I have seen some amazing pure human kindness across developmental stages,” says Dr. Rue. “When a child with autism has a meltdown, their friend can just sit and be in close proximity. They recognize independently that their friend is having a hard time. Or they assist with transitions through prompts like ‘follow me, sit at my table for lunch, hold my hand so you don’t get lost.’ Kids are pretty intuitive and can recognize that just being there and showing the way is a huge help.”

Parent encouragement can help blossoming friendships grow. Here’s what parents can do to support their children as they make and sustain friendships with kids with autism.

Talk about diversity early and often

When a parent is aware of their own child’s developmental level, they are better prepared to help them make friendships with anyone — and be inclusive on the playground and in the classroom, Dr. Rue says. This is best achieved by talking about differences on a regular basis.

“It’s important to introduce your child to diversity, especially if you live in an area where there isn’t a lot of diversity,” she says. “Read books, watch videos, and have open conversations about differences. In addition to talking about skin color, you can talk about different ways that kids communicate with each other, including the idiosyncrasies of flapping, body rocking, and squealing because this is a way of expressing joy or frustration.”

Model inclusive friendships

“We always have lots of opportunities to interact with other humans in our communities, from the playgrounds to the grocery stores,” Dr. Rue says. “This is the time to model appropriate interactions and show empathy, and then discuss it with your child.”

For younger kids, Dr. Rue is a big fan of Sesame Street’s inclusion of a character named Julia. “Julia has autism and I love for parents of neurotypical kids to watch Sesame Street with younger children and talk about Julia and how she is different. It’s a great opportunity for a shared moment of watching and talking about differences and acceptance.”

Offer a sympathetic ear to the child’s parents

Parenting a child with autism is stressful. “Research suggests that they experience more stress on a daily basis than parents of a child with a terminal illness. That’s a lot. Any small gesture, like saying hi or offering coffee or even just sitting and listening. Being an ear is very helpful,” Dr. Rue says.

Finally, have patience. Playdates can be easy but allow time for your child and their new friend to experience similar interests over a few visits. Help the other parent know that you understand and won’t give up after one meltdown or challenge.

“It’s so important to recognize that individuals with autism are all around us, doing great things,” says Dr. Rue. “We need to embrace that and learn about how to be supportive.”

For more school-related content, check out our blogs, “Five Steps to Help Your Child with Autism Make Friends” and “Back to School: Homework Tips.”

Bridging the Gap Between Autism Culture and American Culture

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Motivational Speaker and Poet Russell Lehmann joins us for a third time to explore autism through the lens of culture. Having spent most of his life in isolation, Russell has found his voice and independence in recent years. His passion for erasing stigma and stereotypes about autism is shared through his moving, spoken-word poetry. In this discussion, Russell shares the challenges of communicating his needs and preferences and making meaningful connections. Russell offers insights into how those outside the experience of autism can help bridge the gap between cultures.  He shares, “I think it’s ironic that autism is labeled a communication disorder. I understand why but I find myself thinking – Is it me, or is it you guys?” He adds this advice, “Be upfront. Be sincere. Be open-minded, and if you have questions about what to say or do, ask.”

Back to School: Homework Tips

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Heading back to school can bring a number of challenges for our kids, especially those with autism. Navigating new environments, teachers, therapists, and peers can each be a bit scary but full of opportunity.

One very common request we get is about supporting autistic kids with their homework. How do you get your child to do his or her homework? There are many strategies to help keep your child on task; all of them tried and true. Here are some to consider:

Make It Easier by Sticking to a Schedule

Set a schedule and stick to it. Like any other priority, if homework always occurs at the same time, and the routine becomes ingrained, your child will eventually accept the routine. This is true for teeth brushing, baths, and all of the chores children prefer to avoid. Initially, it is hard to hold the line on the schedule, but it sure pays off later.

Reinforce the Message That Homework Is Important

Set the stage and set the tone. Show your child that homework time is important and respected. Give them a special place to sit. Ask siblings to be quiet or leave the area during homework time. Check in frequently to see how they are doing and intersperse praise throughout homework tasks. Show them that you care and are invested in their homework efforts, and help them feel successful and competent.

Motivate with Kindness

Be firm but encouraging. Everyone tends to push back when they are nagged. Try to avoid nagging when you are frustrated by your child’s efforts. By observing your own behavior, you can better support theirs. You can set expectations for what the homework routine looks like, but make sure to be encouraging and motivating, too. Remind your child what you believe their strengths are and why you are proud of what they are learning.

Positive Reinforcement is Powerful

Use rewards. It is OK to reward your child for completing their homework. They are doing something difficult every day. Consider giving a reward for being successful at participating in homework time (not getting everything correct). Eventually, as homework time becomes easier, you can shift rewards to more academic goals. It does not have to be an ice cream sundae. Find out what they might like to do with you after they are done. This can be an opportunity to consider setting aside quality time that you will enjoy.

Every Opportunity for Choice Increases Compliance

Giving choices has been proven to increase motivation. What choices can they have during homework time? It is important for you to keep the time and the expectations the same. But, can they choose where to sit? Can they choose what materials to write with or write on? Can they choose what task to begin with? Also, consider letting them choose their reward as well. Give them at least three options. Empowering them in this way can be very powerful. The more control they have over the task the more motivated they will be.

Interested in more back-to-school tips? Check out our blogs, “Five Steps to Help Your Child with Autism Make Friends,” “This School Year, Build a Trusting Relationship with Your Child’s Teacher,” and “Tips for Reducing Back to School Anxiety.”

Tips for Reducing Back to School Anxiety

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Getting ready for the new school year can be a hectic and exciting time. Transitioning from the extra playtime and novelty of summer back to the routine of the school year can be challenging. For children with autism (and their parents), all this change can feel overwhelming.
Here are some suggestions for how to help ease your child’s back-to-school anxieties:

Get a Sneak Peak
Scope out the school and classroom in advance. If your child is going into a new classroom, ask to visit it at least once before the first day of school. If transition has been a struggle in the past, consider taking as much time as your child needs to explore the classroom. Make it as much fun as possible, playing in each of the new areas.

Check Out Seat Assignments
For older children, ask the teacher if a seat assignment has been made. Do some enjoyable activities in that seat. If familiar classmates will be in the room, show where they will be sitting, too.

Rehearse New Activities
Find out from the teacher what new activities are planned. Then, prepare your child by performing, practicing, and talking about them. This rehearsal will reduce anxiety when the new activities come up in the first week of school.

Anticipate Sensory Overload
The noise and chaos of a typical classroom can sometimes be a bit much to handle. Establish a plan for what to do in this situation – perhaps there is a quiet room where your child can “take a break” for a short time.

Volunteer in the Classroom
Many teachers welcome assistance from parents. If your child’s teacher welcomes volunteers (and your schedule permits), your presence may be a source of comfort to your child during those challenging first weeks.

Going to school can pose many challenges for children with autism, as well as offer countless opportunities for building crucial social, language, and academic skills. Be positive and encouraging, and your child will be off to a great year!

Looking for more school-related tips for your child with autism? Check out our blogs, “Five Steps to Help Your Child with Autism Make Friends” and “This School Year, Build a Trusting Relationship with Your Child’s Teacher.”

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.“

The Words We Use When Discussing Autism

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Motivational Speaker and Poet Russell Lehmann joins us for a second time to share his perspectives on the words we use when discussing autism. Having spent most of his life in isolation, Russell has found his voice and independence in recent years. His passion for erasing stigma and stereotypes about autism is shared through his moving, spoken-word poetry. In this discussion Russell shares, “If you don’t know, ask. When talking to someone and you don’t know how to refer to them, ask them. Preface that you are learning. Be honest and respectful.”

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