According to Autism Speaks, in 2021, 1 in 44 children in the United States were diagnosed with autism spectrum disorder (ASD), with boys being four times more likely to receive a diagnosis than girls. A diagnosis, of any kind, means something different from family to family and is often colored by their culture, belief system, generational influences, and socio-economic factors.
For some, a diagnosis provides validation—there is a name for the group of symptoms parents, friends or family members may have observe (or comment on)—things like: a language delay, “quirks” in social skills, atypical behaviors, or excessive tantrums. The diagnosis can be affirming; for moms, in particular, there may be a sense that their “gut” was right. It may be a sigh of relief that their intuition has been validated in the form of a recognizable diagnosis — something more than just an instinct felt deeply in some intangible way. For others, a diagnosis can be a devastating surprise — one that catches unsuspecting parents off-guard and leaves them feeling overwhelmed and underprepared.
Whether a parent has suspected something all along or is taken aback by a diagnosis, all families grapple with making sense of what it all means. The hard part, for many families, is being patient, hopeful, and resolute when the questions far outnumber the answers.
After a Diagnosis
Arguably, one of the hardest parts of the journey for parents of children with ASD, is the beginning. The unknowns are pervasive. The information “out there” is wild. Google is daunting (and often alarmist), and questions lead to more questions even before the diagnosis has been fully digested. Parents may begin asking themselves and others: What is ASD? What does it mean? Will my child learn to communicate? Will his/her behavior ever improve? What now? What do I do? What treatments are available? Why is this happening?
One truth about ASD is that autism is different for each autistic individual. As autistic professor and advocate Dr. Stephen Shore says, “If you’ve seen one person with autism, you’ve seen one person with autism.” And, it’s true. Autism looks, sounds, feels, and behaves differently for each autistic child.
A neighbor, friend, or family member’s autistic child, his/her skills and strengths, areas of need, where and how much he/she is impacted by the diagnosis, will all vary. Every child is unique. Every autistic child is too. Comparing one autistic child against the skills of another can be, at best, misguided and, at worst, detrimental. The best (albeit, the only) way to answer some of those nagging questions is to submit to the journey of autism and start down its road one step at a time, minute to minute, hour by hour, day by day.
The Journey of Autism: Resistance and Grief
There’s no doubt that undertaking something new can feel overwhelming. After all, autism is a journey most parents are ill-prepared to begin and may resist undertaking altogether. Beginning a journey with few answers, little information, and no preparation makes even the boldest and bravest among us uncertain. But, as the old adage goes, “A journey well begun, is half done.” For parents, beginning the autism journey on the right foot often means acknowledging resistance, grief, and other feelings about the diagnosis before heading down the road.
Resistance, in the beginning, often shows-up in unhelpful ways and can breed doubt or distrust and delay access to important early interventions. It often comes from a place of grief, guilt, or anger: Could the doctor be wrong? Did I cause this? Maybe my child will “outgrow” it? Maybe my child is just “slow”? It can be difficult to side-step resistance and forge ahead when many questions remain unanswered. But, the autism journey is not linear—emotions, feelings, and reactions will not be either.
Later on, resistance can become an important component of advocacy. Resistance may prompt parents to speak-up/stand-up, and communicate to care providers if/when assessment, placement, or goals do not align with their (or their child’s) objectives for treatment. Resistance gives parents a new voice; it can lead to useful insights, self-reflection, and those wonderful “lightbulb” moments that have the power to remove roadblocks and push treatment forward.
Processing grief is sometimes an uncomfortable but important additional step for parents new to the journey. All the unknowns can be heavy; grieving the weight of those worries is important. It is OK to be sad. It is OK to feel loss. It is OK to shoulder that grief with a partner, a trusted friend, a therapist, or a family member. It is also OK if parents don’t feel these things, either.
But for those that do, it is critical to recognize that grief or sadness will eventually make way for other emotions and lend themselves to a steadfast resiliency that treatment, therapy, and advocacy often require.
It’s important to acknowledge that grief can (and often does) exist alongside hope, love, and other complicated feelings—sometimes competing for attention. Accepting a diagnosis is not the absence of grief, but rather, an acceptance of it. It is an acknowledgement that things will look different because of autism but also an understanding that different is not less. Different is important and valuable. Differences are necessary. Differences are an inherent component to being alive, to living, to being human.
The Road to Acceptance and Action
Accepting autism means taking those reluctant first steps.
Those steps can be taken with uncertainty, with fear, with resistance or grief, with hope, with love, with the whole gamut of emotions along for the ride. Acceptance involves understanding autism as more than a label but a gateway to support and community; an opportunity to educate siblings, family, and community members about autism, inclusion, and neurodiversity.
It can be a call to action — personally, within the walls of a home, and beyond. Several important organizations at the forefront of autism and autism research were started by parents. Parents looking for support, digging for answers, researching effective treatment for their children. Parents who didn’t expect autism. Parents who may have grieved the diagnosis. Parents who fought hard for their child, for change, for growth, for acceptance and advancement.
A diagnosis also allows parents to access effective therapies via private insurance and academic supports from their local school district. Therapy that opens doors, strengthens skills, and decreases the impact maladaptive behaviors like aggression or tantrums may have on an autistic child’s quality of life.
Acceptance fuels action. Action brings answers.
Autistic children will have different needs than neurotypical children. There will be different obstacles to overcome and different battles to be fought. But, in many ways, the journey will be the same. Life will ebb and flow and push and pull parents in a thousand different ways—some of which will not be easy to understand. Questions will always come before there are answers. And, there will always be questions that don’t have answers. There will be ups and downs. There will be periods of high highs and low lows.
But, there will be joy. There will be laughter. There will be love.
Nicole Zahiry, M.A., BCBA, is a behavior analyst specialist in Orange County, California. She has been active in the field of ABA for nearly 20 years. She is also a mother to three children, one of whom was dual diagnosed with ASD and Attention Deficit Hyperactivity Disorder (ADHD) at 5 years old. Nicole is a fierce advocate for neurodivergent inclusion and considers herself an ally of the disabled community.
What is Nonverbal Autism? Dispelling the Myths Around Non Speaking Autism
Just because someone is nonspeaking, does not mean they’re non-thinking. Around 25 to 30 percent of children with autism spectrum disorder are minimally verbal or do not speak at all. These individuals are referred to as nonverbal or nonspeaking, but even the term nonverbal is a bit of a misnomer. While nonspeaking individuals with autism may not speak words to communicate, many still understand words and even use written words to communicate.
Nonspeaking individuals with autism utilize a variety of augmentative and alternative communication (AAC) methods. These range from no-tech and low-tech options such as gestures, writing, drawing, spelling words, and pointing to photos or written words, to high-tech options like iPads or speech-generating devices.
There are several reasons that an individual with autism may have difficulty talking or holding conversation that are not related to intellectual disability. The disorder may have prevented the normal development of verbal communication skills. They may also have conditions such as apraxia of speech, which affects specific brain pathways, making it difficult for a person to actually formulate and speak the words they’re intending to say. Some may also have echolalia, which causes a person to repeat words over and over again.
While these conditions prevent many individuals from speaking, it does not mean they cannot learn, understand, or even communicate. There is a pervasive misunderstanding about this among the general population due to a lack of education. It is often wrongly assumed that anyone who has difficulty speaking is intellectually disabled.
This misconception can be particularly harmful when held by medical professionals. In the 1980s, as many as 69 percent of people with an autism diagnosis had a dual diagnosis of mental retardation, which would now be labeled intellectual disability. By 2014, that number had declined to just 30 percent, as researchers improved the diagnostic criteria for autism and a fuller picture of the disorder emerged.
Researchers are still working to try and improve diagnostics and better distinguish nonspeaking autism from intellectual disabilities. As Audrey Thurm, a child clinical psychologist at the National Institute of Mental Health in Bethesda, Maryland says: “We have to figure out who has only autism, who has only intellectual disability and, importantly, who has both intellectual disability and autism. That’s millions of people who could be better served by having an accurate distinction that would put them in the right group and get them the right services.”
It’s important to challenge the perception that those who do not speak cannot think. Not only do we risk failing to give them the proper supports and services, but we also undermine their individuality, ingenuity, creativity, and humanity by failing to see them as they truly are. Just because they are not talking does not mean they do not have much to tell us.
8 Tips for Planning for a Successful Holiday for Your Autistic Child
The holidays are an exciting time as we share traditions, spend time with family, and navigate the different gatherings and celebrations. Holiday spirit can also bring holiday stress. We want to help you and your family have the most successful (and least stressful) season by offering our best practices and tips.
BEFORE THE HOLIDAYS
Start with Expectations
Having a positive and realistic mindset about what you want to create can make a big difference. What could go right this season? Keep an optimistic view of the possibilities for special moments you want to share. A winning holiday doesn’t have to mean extravagant plans. Consider what would be ideal, be prepared to accept when flexibility is needed, and look for the wins along the way.
Consider Comfort and Safety Needs
When visiting events or other homes, bring items you know will bring comfort for your child—things like earplugs (or headphones), fidgets, and soft clothes. When traveling, ask for needed accommodations from your airline and hotel. Make sure you are aware of possible water nearby and review crisis plans with loved ones.
Practice Before Events
Now is a great time to discuss upcoming changes to schedules and routines. Involve your child in the process whenever possible. Playing memory games with photos of those you will see this holiday season allows your child to identify matching names and faces. Establish a phrase or code word with your child to practice using when they need to take a break from events to calm down and relax.
DURING THE HOLIDAYS
Maintain Routines
During the holidays, change is inevitable but find ways to create or maintain routines for your child. What are things you can build into every day? Perhaps it’s something you do together each morning, afternoon, and evening (regardless of location). Utilizing visual supports like calendars and independent activity schedules can be helpful too.
Build in Fun!
Whether days are filled with errands or time at home, consider letting your child choose a couple of activities each morning for the day ahead. Here are some suggestions that might work for your family:
Bake something together
Do holiday arts and crafts
Take a drive to see holiday lights in your neighborhood, zoo, or garden
Help with decorations or gift wrapping
Sing along with holiday music
Consider Sensory Needs
Holiday meals can be tricky for some. Plan ahead for alternative foods that you know your child will eat. As we mentioned earlier, being mindful of dressing in (or packing extra) comfortable clothing can be helpful. Preferred items, such as toys or other objects that help promote calm for your child, are a good idea too. Consider making a sensory box that includes things to stimulate your child’s touch/sight/sound/taste/smell. Finally, establish a quiet “break space” that your child can utilize when needed.
WRAPPING UP THE HOLIDAYS
Plan for Rest and Recovery
After each scheduled big event or outing, try to allow time for a quiet evening that follows. Start a list or document on your computer of things that went well that you want to repeat and ideas about what would make it easier next time.
Transition Back to School
Packing holiday decorations and unpacking clothes can be helpful signals to your child that things are moving back to the normal routine. Other visual cues like a countdown calendar for back to school can help prepare them. Show them when school starts and have them mark off the days. Leave extra time the first morning back to school so you can have a nice breakfast and move with ease into the day. If possible, organize a nice, calm activity after school and focus on what went well at the end of the day.
5 Tips for Selecting the Best Holiday Gifts for Kids with Autism
Buying the perfect gift for kids and other loved ones can be challenging, and this can also be true when buying gifts for kids with autism. To help make your gift-giving easier, here are a few helpful tips to keep in mind when purchasing gifts for autistic children.
Focus on what brings the person joy.
Research shows that incorporating interests and preferences into the learning and play environment of kids with autism can increase positive behaviors and aid in skill acquisition (1). With that said, we can capitalize on what someone already likes. For example, if a child likes dogs, shop for games, activities, or toys that are dog-related. If a child enjoys swimming, activities that involve water play may be a hit (e.g., water tables, sprinkler toys, water beads, grow capsules). Alternatively, if a child is sensitive to loud noises, a toy fire truck with a siren may not be appropriate. Ask friends and family of the person for whom you are buying the gift what that person generally likes and/or dislikes.
Focus on the person’s strengths and abilities.
Many toys come with age recommendations, and while these recommendations are helpful, they might not always lead you to the perfect gift. A good rule of thumb when purchasing a gift is to consider the age and the development of the person for whom you are buying a gift. For example, the game “Apples to Apples” would not be developmentally appropriate for a non-verbal teen, even if it is an age-appropriate game. When looking for the right gift, focus on the person’s strengths. For instance, if the non-verbal teen mentioned above is great at drawing, then a sketch pad or an adult coloring book could be a more appropriate gift. If you are unsure about the child or teen’s strengths, ask a friend or family member of the person for whom you are buying the gift about their specialty areas and abilities.
Note: Be sensitive to how family and friends of a child and teen with autism may feel when being asked questions about the skills of their loved one. When asking questions, always frame them from the perspective of accomplishment (e.g., what skills have they mastered) and not deficit (e.g., in what areas are they delayed) to be supportive and respectful of their growth and development.
Be mindful of behavior triggers and safety risks.
Some children with autism engage in behaviors that put them or their loved ones at risk of harm. For example, if a child engages in pica (e.g., eating nonfood items), gifts containing small objects may pose as a choking hazard. Another example is if a child engages in aggression towards others, gifts with violent content may not be appropriate, as additional exposure to violence may interfere with their goals. Alternatively, a sensory-seeking child may benefit from gifts that allow them to stim. For example, if a child rocks back and forth, a swing may be a great way to meet their sensory needs. Additionally, certain objects can elicit sensory sensitivities which can trigger behaviors in some children and teens with autism (e.g., loud noises, highly preferred items, phobias, etc.). Ask friends and family of the person you are buying the gift for if there are any behaviors that possess a safety risk that need to be considered before purchasing a gift.
Focus on toys that encourage interaction with others.
Social deficits are a defining characteristic of autism. When gift-giving, try to purchase gifts that encourage social interaction. While almost any toy or game can be turned into a group play, certain activities may be more conducive to social interactions than others. For example, instead of buying a computer game, consider purchasing “Bop It,” which is an electronic interactive game that can be played among a group of friends or family.
Focus on finding new things they will love.
Children and teens with autism sometimes have restricted or limited interests (e.g., only talking about trucks or only playing with dinosaurs). To help build upon their current interests to introduce them to a wider range of activities, try finding new activities similar to their current interests. For example, if a child’s favorite activity is playing with “Play-Doh,” kinetic sand or slime may be an appropriate gift to help expand their interest due to its similarity in form of play. Ultimately, gifts that will provide new experiences may act as potential new reinforcers (e.g., stimuli that increase behaviors) and could significantly enrich the child or teen’s learning environment.
Allyship Tips for Neurotypical Friends of the Autistic Community
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.”
Back to School: Homework Tips
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.
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!
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.
School is out! Let summer break be a great opportunity to continue your child’s learning and growth.
While summer can bring parents a welcome relief from making lunches and school drop-off and pick-up, it also offers time for kids to build valuable skills. Social skills programs are offered in several cities by different service providers and can offer a structured, play-based environment for children to build essential social, communication, cognitive, and sensory skills. Kids have fun and make friends as they learn while maintaining a helpful routine for themselves and their parents.
Many skill-boosting summer programs take place in group settings that are similar to the school environment, while still providing one-to-one support. These specialized programs promote collaboration and inclusion of peers and some welcome siblings, too.
Make Friends
Social skills programs provide activities that encourage and reward the building of social relationships rather than individual play. Children are grouped with other kids of the same age group and skill level, enabling them to share in age-appropriate games, activities, and communication. Groups are led by highly-trained staff, known as behavior technicians (BTs), who are overseen by behavior analysts. BTs encourage kids to get out of their comfort zone and try new things.
Stay Mentally and Physically Active
School breaks can impact children academically. The “summer slide” as it is called, refers to a loss of learning that students experience during the summer months. Social skills programs can help children stay mentally and physically active. While promoting positive behaviors and peer interaction, physical activity is suggested to improve self-esteem and general levels of happiness.
Improve Motor Skills
Engaging in physical play and teamwork exercises can also support overall motor skills, which support many everyday activities. This can help children feel more confident and capable.
Behavior Management
By consistently promoting positive behaviors and language, a child can learn what they can do rather than what they cannot do. Social skills programs offer valuable learning opportunities for kids to communicate their needs and engage in behaviors that help them in daily activities and in different environments.
An Honest Look at the Full Experience of Autism with Russell Lehmann
Motivational Speaker and Poet Russell Lehmann joins us to share his perspectives on autism and the human condition. 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. As Russell shares, “I like to say you hold up a mirror to anybody, and that’s what autism looks like. I don’t expect anyone to be able to tell that I have autism just by looking at me. But hopefully, someday they won’t be as shocked to find out.”
All Autism Talk (https://www.allautismtalk.com/) is sponsored by LEARN Behavioral (https://learnbehavioral.com).
