Tag: Autism spectrum disorder

What is Nonverbal Autism? Dispelling the Myths Around Non-Speaking Autism

Author: Ronit Molko, Ph.D., BCBA-D | Updated On

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Just because someone is non-speaking does not mean they are non-thinking. That single idea sits at the heart of one of the most persistent and harmful myths about autism: the assumption that a person who does not talk must be intellectually disabled.

The reality is far more nuanced. Speech and intelligence are not the same thing, and many non-speaking autistic people understand language, form rich inner thoughts, and communicate in ways that do not rely on the voice. This blog explains what nonverbal autism spectrum disorder (ASD) is, how non-speaking individuals communicate, and why their abilities are often underestimated.

Key Takeaways

  • Non-speaking does not mean non-thinking: difficulty with speech is not the same as a lack of intelligence or understanding.
  • Around 25 to 30 percent of children with autism are minimally verbal or non-speaking beyond about age 5.
  • Speech can be affected by motor-based conditions like apraxia, language-processing differences, or echolalia, none of which determine intelligence.
  • Standardized IQ tests, especially verbal ones, often underestimate non-speaking autistic people; nonverbal reasoning tests frequently reveal far greater ability.
  • Augmentative and alternative communication (AAC), from gestures and picture systems to speech-generating devices, gives non-speaking individuals reliable ways to communicate.
  • Presuming competence and starting individualized, evidence-based communication support early gives every child the best chance to be understood.

Are Non-Speaking Autistic People Intellectually Disabled?

This is the core of the myth, and the evidence calls for nuance. Intellectual disability does co-occur with autism for some people. According to the CDC’s most recent ADDM Network data (2022 surveillance year), among autistic 8-year-olds with cognitive testing data:

  • About 39.6 percent had scores in the intellectual disability range
  • Roughly 24 percent scored in the borderline range
  • About 36 percent scored in the average range or higher

In other words, most autistic children are not in the intellectual disability range, and being autistic, or non-speaking, is not the same as being intellectually disabled.

There is a deeper issue, too. The standard tests used to measure intelligence often rely on spoken language, which can dramatically underestimate non-speaking people. In one study of minimally verbal autistic children who had been judged to have very limited cognitive potential, none could complete a conventional verbal IQ test, yet most were able to complete a nonverbal reasoning test, and many scored within or above the typical range.

When the tool fits the person, the ability that was invisible on a verbal test becomes clear. Assuming low intelligence because someone cannot demonstrate it through speech is a form of ableism that can lead to the wrong supports and lowered expectations. A better starting point is to presume competence: assume the person is capable and give them the tools to show it.

What Is Nonverbal Autism?

Nonverbal autism, also called non-speaking autism, describes autistic individuals who use little or no spoken language to communicate. Even the word nonverbal is something of a misnomer. While these individuals may not speak words aloud, many still understand language, and some use written words, symbols, or devices to express themselves.

For that reason, many people in the autism community prefer the term non-speaking, which describes the absence of speech without implying an absence of language or thought.

It also helps to think of communication as a spectrum. Some autistic people speak fluently, some use a handful of words, some are minimally verbal, and some do not use speech at all. Where a person falls on this spectrum can change over time and across situations, especially with the right support.

The terms can be confusing, so it helps to define them. Nonverbal and non-speaking are often used to mean the same thing: communicating with little or no speech.

Minimally verbal usually describes someone who uses a small number of spoken words or fixed phrases. None of these terms describes a person’s intelligence, personality, or potential. They describe how someone communicates today, not who they are or what they are capable of learning.

What Percentage of Autistic People Are Nonspeaking?

Estimates vary depending on how researchers define the group, but research on minimally verbal autism indicates that roughly 25 to 30 percent of autistic children do not develop functional speech and remain minimally verbal beyond about age 5. That is a meaningful share of the autism population, and it is one reason communication support is such a central focus of intervention.

It is also worth remembering that being non-speaking at one age does not fix a person’s path for life, since communication can grow and change with time and support.

Do Non-Speaking Autistic People Understand What Others Say?

One of the most damaging parts of the myth is the leap from cannot speak to cannot understand. In reality, comprehension varies from person to person. Many non-speaking autistic individuals understand far more than they can express out loud, which is exactly why the label nonverbal can mislead the people around them. Some do have co-occurring differences in receptive language, the ability to process what is heard, but that is not a safe assumption to make about any individual.

This gap between understanding and speaking is a strong argument for presuming competence. When families, educators, and clinicians assume a person comprehends and speaks to them accordingly, they protect that person’s dignity and open the door to learning. Assuming the opposite can quietly lower expectations and limit opportunities, often for someone who understands every word.

Why Are Some Autistic People Non-Speaking?

There are several reasons an autistic person may have difficulty speaking, and none of them is the same as a lack of intelligence. Autism can affect the typical development of spoken communication. Some individuals have a co-occurring motor-speech condition, such as childhood apraxia of speech, which makes it difficult to plan and coordinate the precise movements needed to produce words, even when the person knows exactly what they want to say.

Others experience echolalia, the repetition of words or phrases, which can serve as a step toward communication rather than a barrier to it. Sensory differences, language-processing differences, and anxiety can also play a role.

The common thread is that these challenges are associated with producing or organizing speech, not measures of what a person knows, feels, or understands. Treating difficulty speaking as proof of intellectual disability confuses two very different things.

How Do Non-Speaking People Communicate?

Non-speaking autistic individuals communicate using a range of methods known as augmentative and alternative communication (AAC). According to the American Speech-Language-Hearing Association (ASHA), AAC covers every form of communication beyond spoken words. These methods are often grouped by how much technology they involve:

  • No-tech and low-tech options: gestures, facial expressions, sign language, writing, drawing, and pointing to photos, symbols, or printed words.
  • High-tech options: tablets, communication apps, and speech-generating devices that turn selections into spoken output.

In applied behavior analysis (ABA) and speech therapy, a major goal is to build functional communication: giving a child a dependable way to express wants, needs, and ideas. Early skills often start with manding, or requesting, because being able to ask for something is powerful and motivating. Approaches like functional communication training teach individuals to replace frustration or challenging behavior with clear communication. Speech-language pathologists and behavior analysts often collaborate so that spoken language, AAC, and everyday routines all reinforce one another.

Will a Non-Speaking Autistic Child Ever Talk?

This is one of the most common questions families ask, and the honest answer is that it depends on the individual. Some nonspeaking children develop spoken language, sometimes years later than peers, while others continue to communicate primarily through AAC.

Research suggests that early, individualized communication support improves outcomes and that nonverbal reasoning ability is one of several factors associated with later language gains. Rather than focusing only on whether a child will speak, it helps to focus on giving them a reliable way to communicate now, in whatever form works for them. Communication, not speech alone, is the goal.

Early intervention matters here. The years when the brain is most adaptable are a valuable window, and starting support sooner gives a child more time to build skills. Importantly, introducing AAC does not close the door on speech. Many children who begin with pictures or a device go on to add spoken words, because having any dependable way to communicate tends to reduce frustration and invite more interaction, not less. Progress rarely follows a straight line, and steady, individualized support tends to serve children better than a single milestone or deadline.

How LEARN Behavioral Supports Non-Speaking Communicators

At LEARN Behavioral, support for non-speaking and minimally verbal children starts with presuming competence and getting to know each child as an individual. Rather than applying a one-size-fits-all plan, board certified behavior analysts (BCBAs) assess how a child already communicates, identify motivating goals, and build a personalized program that grows functional communication step by step.

This can mean teaching a child to request with pictures or a speech-generating device, shaping early sounds and words, integrating AAC alongside spoken-language goals, and coaching families so progress is carried over to the child’s home and community. Behavior technicians (BTs) deliver this support day to day, and clinicians often collaborate with speech-language pathologists, so every channel of communication works together.

Our goal at LEARN Behavioral is simple: help each child be understood and heard in the way that fits them best.

Frequently Asked Questions

What is the difference between nonverbal autism and a language delay?

A language delay means a child is developing speech and language more slowly than typical but along a similar path. Nonverbal or non-speaking autism describes autistic individuals who use little or no spoken language to communicate, often relying on other methods instead. The two can overlap, and a speech-language pathologist can help clarify what a particular child is experiencing.

Does using AAC keep a child from learning to talk?

No. Speech-language experts and a large body of research consistently find that augmentative and alternative communication (AAC) does not hold back speech development. For many children, it does the opposite, lowering frustration and giving them a reliable way to communicate while spoken language continues to develop.

How can families support a non-speaking child’s communication at home?

Families can model communication throughout daily routines, honor every attempt to communicate (a gesture, a picture, a sound), build in chances for the child to make choices and requests, and stay consistent with whatever AAC system the child uses. Collaborating closely with the child’s clinical team keeps strategies aligned across home, school, and therapy.

Can non-speaking autistic people read and write?

Some can, and literacy varies widely from person to person. A number of non-speaking autistic individuals read and write or learn to over time, which is one reason the label nonverbal can be misleading. Access to literacy instruction and the right tools matters a great deal.

When should communication support begin?

Earlier is generally better. There are no prerequisites for introducing communication supports, including AAC, and starting early can support language development rather than replace it. A clinical evaluation can identify the right mix of strategies for a child’s age and needs.

What is Contemporary ABA?

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Clinically Reviewed By: Geneviève Marshall, PhD, BCBA-D, LBA

People often say that history is written by the victors. When the colonists won the American Revolution, they described the war as a noble struggle to escape tyranny. Had the British won, history books might have called it a heroic effort to save the empire from ungrateful rebels. 

In the same way, most people in America are able-bodied, so they decide what is “normal.” For example, we might see an autistic brain or someone with poor eyesight (but stronger other senses) as less valuable. But really, these are just different ways of thinking and living. 

For more than 60 million Americans with disabilities, this can be a challenge. They have to fit their lives into a world designed for able-bodied people, even though it would be easy to make the world work for everyone.  

Ableism and Ableist Misconceptions

Contemporary treatments include the individual in planning when possible. Contemporary practices change in response to the voices of those who have received therapy in the past. 

Ableism is when able-bodied people assume everyone is like them and fail to see the challenges people with disabilities face.  

Ableism includes unfair ideas, such as thinking people with disabilities always need help, even if they don’t ask for it. Not all disabilities are visible, which can lead to wrong assumptions about mental illnesses being different from physical ones. These false beliefs make it harder for people with disabilities to be treated equally and included in society.  

 
 

ABA Intervention

Applied behavior analysis (ABA) is widely regarded as the most effective treatment for autism, supported by decades of research. It isn’t a single therapy method. Instead, it’s a flexible approach that uses different techniques to help children build the skills they need to thrive at school and in daily life. 

Recently, ABA has increasingly become the target of much controversy as self-advocates are speaking up about their experiences. They reject the idea that teaching people with autism the skills deemed necessary without their input or choice. Some advocates say independence is meaningless without happiness and that people with autism should choose their own goals, which might not include fitting in with others.  

ABA, which is essentially the science of good teaching, has a long history and was originally developed in the 1960s by a group of researchers at the University of Washington. ABA was used to treat individuals with developmental disabilities and initially was a rigid, highly structured and teacher-directed program, which led to some of the negative experiences and associations with ABA. Historically, for example, ABA was used to reduce or eliminate “stimming” – repetitive physical movements and sounds that may soothe and reduce anxiety. We now better understand that stimming helps people with autism manage their sensory processing and their environments. 

Just like in other areas of medicine and science, the field of ABA has advanced in a significant and meaningful way to become a play-based, naturalistic, family-focused and individualized, contemporary treatment that is tailored to the unique needs and goals of everyone. A good ABA program collects and reports data to show effectiveness. Providers must demonstrate success, validated by parents, through goals set with the family. If your provider doesn’t follow this approach, they may not be using best practices.  

ABA now adapts to individual needs by learning from adults. While negative experiences must be addressed, dismissing ABA entirely overlooks its success for many. Good programs focus on the client, seek consent, and value input. Research and ask key questions when choosing a provider.  

 
 

What to Look for in an ABA Program 

  • Will I participate in determining the goals of treatment for myself/my child? 
  • How are your staff trained? 
  • How is my child’s program developed? Do all clients receive the same program or are they individualized? 
  • Will there be parent goals as part of my child’s program? 
  • How often is my child’s program modified or revised? 
  • How is data collected and reported? 
  • How often will I see data on my child’s progress? 

Your child’s program should be client-centered and future looking, which means that your family and relevant caregivers are providing input into your child’s strengths and challenges, and that you and your child are helping to guide the goals of his/her program based on your preferences and needs. 

The science of ABA has a long history with decades of research to support its development and evolution. While ABA is most widely known in its application to autism, ABA was developed, and has been applied, to address many circumstances regarding behavior that matter to society. ABA is applied in many different areas, including mental health, animal training, organizational behavior management, marketing, forensics, sports, and physical health, to name a few. Just as other areas of science and medicine advance and application of treatments change, so has the field of ABA. Many lives have been impacted by ABA for the better. It is incumbent upon the professional community to listen, learn, and evolve its practice so that their services are as relevant and effective as possible. After all, the purpose of ABA is to help children with autism achieve the goals that matter most to them and their families — goals that foster growth, independence, and joy in their everyday lives.  

New Autism Learning Center Opens Doors in Baltimore, MD

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No Waitlist and Flexible Treatment Hours for Area Families

Trellis Services, a provider of LEARN Behavioral, has recently opened the doors of its new Learning Center at 1 N. Haven Street, Suite 1, Baltimore, MD 21224.

Trellis Services is Maryland’s premiere contemporary applied behavior analysis (ABA) provider of center-based autism services for children ages 2-8 years. The Canton Learning Center provides center-based and in-home ABA therapy.

“We are thrilled to open our doors and bring compassionate, contemporary ABA therapy for children with autism spectrum disorder (ASD) to families in the Greater Baltimore area,” said Nicole Armstrong, MA, BCBA, LBA, Center Director. “We look forward to helping find success for every child in our care.” 

Key Features of the Canton Learning Center:

  • Large facility that includes an outdoor play area, an indoor playground, and gross motor spacefor physical and social development.
  • ABA therapy, which includes a learning-rich environment, unique play-based learning spaces, and one-on-one support.
  • No waitlist and flexible treatment hours, including evenings to accommodate busy family schedules.
  • Serving children 2-8 years old with personalized therapy plans.
  • Conveniently located and easily accessible via public transportation for families in the region. On-site parking at the Canton Learning Center is available.

About Trellis

Trellis, part of LEARN Behavioral, a national leader in compassionate autism treatment, has been a leading provider of evidence-based autism services for more than 20 years. Trellis is dedicated to personalized, high-quality ABA therapy. In addition to the Baltimore location, Trellis has Learning Centers in Forest Hill, Nottingham, and Timonium, MD.

The Canton Learning Center is now enrolling new clients in surrounding Baltimore City and Baltimore County with no waitlist and flexible treatment hours.

For more information or to enroll a child, call (443) 330-7900 or visit https://trellisservices.com/locations/baltimore

About LEARN Behavioral

LEARN Behavioral is a national leader in autism treatment, offering comprehensive diagnostic services and contemporary applied behavior analysis (ABA) therapy for children with autism spectrum disorder (ASD). With a nationwide network of ABA providers and more than 100 Learning Centers across the country, LEARN delivers the highest standard of evidence-based care—customized to meet the unique needs and interests of each child and family. For more information, visit learnbehavioral.com.

8 Tips for Planning for a Successful Holiday for Your Child with Autism

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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.

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.”

Building Social Skills During Summer

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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.

Click here for other summer-themed blogs to support your family this season.

7 Tips for Creating Summer Fun For Autistic Kids

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Summer is a few short weeks away! The joy of completing the school year also brings the challenges associated with unscheduled days, unpredictable new environments, and the unexpected elements of the season.

Here are seven helpful tips for planning your family’s summer that we hope will help create more fun and reduce stress:

1. Maintain Some Structure

Try to maintain your child’s typical eating and sleeping schedule as much as possible. It’s not easy to stick to a schedule during summer, especially as this is a time when you want to let go a bit and relax. If you can maintain the basic structure of your child’s routine with eating, sleeping, and some routine in the day, you are less likely to have an overwhelmed or anxious child.

2. Be Clear on Your Goals

You may want to create opportunities for your child to build social skills. Summer is a great time to enroll your child in social skills programs where they can participate in small-group activities and learn how to navigate relationships while receiving one-to-one support.

3. Prepare in Advance

Whenever possible, it can be helpful to familiarize your child ahead of time with the destination by using photographs, videos, etc. If your child has never flown or stayed in a hotel before, practicing these on a small scale can be helpful. Some airlines offer practice travel for families with autism. You may also want to visit a hotel room before an overnight stay.

4. Travel Safety

It‘s important to acquaint your family with your vacation details, such as where you‘ll be staying during your trip. If you are staying with family or renting an apartment or home, be sure to check that each door has a lock and that the perimeter of the house is secure. It’s also a good idea to familiarize yourself with other parts of the property, such as areas that have access to water and other roads. Knowing these will help keep your child’s safety top of mind should they explore the area.

5. It Takes a Village

While vacationing or sunbathing with friends or family, welcome them to become part of your team. By sharing your concerns and requests for support, your community can be mindful and diligent with any possible safety or wandering risks. Helping others understand how they can best support you and your family, can make your experience more relaxed and enjoyable.

6. Get Support from Your Team

Remember to use what works for your child while planning your family’s activities.  If you‘re working with an ABA provider, ask for assistance with goals that support a specific outing or trip.

7. Don’t Forget to Have Fun!

Summer is the perfect time to maximize learning opportunities, access resources that may have been limited due to school schedules, and work on intensive programs that require a larger time commitment.

While that is all true, it’s still important to find time to have fun, enjoy the activities summer has to offer, and watch your child thrive!

Here are some additional resources to help make the summer season a success for the whole family:

Voices for All: Sam Krus – An Interview Discussing Gender Diversity

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First off, let’s talk about gender identity.  How do you identify?

I identify as floating between more of a masculine view and a gender-neutral view. If I was going to put a label on that, the closest I’ve heard is demi.

Now of course, gender identity is different than gender expression. Can you tell me a little bit about your gender expression?

I’d say my gender expression comes more with whatever accessories I have with me or how I decorate my house. Clothing-wise, I dress for practicality and male clothing is more designed for practicality rather than decorative purpose so I generally dress more “male.” But I have some feminine-tinged decorations around the house. My big aesthetic is horror, folklore, and mystery (not violence).  [Sam turns the camera to show me a well-organized closet and shelving system filled to the brim with a bright assortment of costumes.]  I have a lot of things based around ghosts and creatures. I’m interested in strange anatomy, not the act of doing harm. How bodies move, the forms of a body, the wings, the features. 

I also carry a lot of toys in my car for work, like child-appropriate things that I feel like anybody could play with; I like to have these items with me. It makes me feel like I’m passionate about my job and also, I can zone out and [play with] them. That’s how I establish my aesthetic more than what I wear. 

One thing [about my gender expression] that’s my actual body is my long hair. It’s partially a feminine thing but also a gender-neutral thing. On me, it doesn’t look feminine, so it’s blending both. My gender expression is how I surround myself with objects, and I pick objects that are not specifically gender coded…but if they are gender coded, they’re more coded toward feminine. Like the fashion dolls, but those have a component of horror and mythology, which I don’t view as being a gender-coded subject.  

How does being gender-expansive affect your life?

It affects my life mostly in my interests and how open I am. I feel like I have to pick and choose what parts of myself I’m going to share; whether that’s going to be welcomed or not. It only affects me fairly mildly, I know for other gender diverse people it affects them more. For me [the question is], “this is something I like, is this something I keep to myself or something I share with somebody else?” 

I have interests that are not considered masculine. For instance, in the other room, I have a shelf full of dolls. That’s something that I used to feel was inappropriate. 

These barriers are fading with these new generations, but there are autistic adults that have things that are not viewed as age-appropriate interests. There are these set boundaries of what is appropriate for you to be interested in that you transgress. Your interests and the boundaries that you transgress go hand-in-hand with being gender diverse and being autistic. 

How did you first recognize that you were demi, or gender-diverse?

A big thing that made me realize that I was gender-diverse was that I watch a lot of cartoons, a lot of shows with younger people. I like shows where there’s an all-girl cast; I identify with them a lot more than shows where there’s an all-male cast. [How an all-girl cast relates to each other is] how I want to talk to people. Because that’s more of an intimate, caring viewpoint. I wonder if that’s going to come off as weird or especially because I’m a man, is that going to come off as sexual and therefore threatening. I wonder how to approach people, because I want to approach people in a very caring way; but do I need to stamp that down? Sometimes, I’m meaner than I feel like I should be in terms of jovial insults to balance it out. I think, “I’m being too considerate, too genuine, I have to call you an idiot now. Oh, wait, was that too harsh to call you an idiot?” 

Can you tell me more about your fashion dolls? 

As a kid I liked dolls. Getting a toy from McDonalds, if the choice was the car or the Barbie, I wanted the Barbie. I liked that they had arms and legs that I could manipulate, I was more of an action figure person. Besides McDonald’s, I was never interested in them on my own, but as an adult in 2014, I came across Monster High dolls. The idea is that they’re based on monsters from folklore as teenagers and they each have something with their body they have to deal with. The Frankenstein girl, her body occasionally falls apart. The doll from the black lagoon has a skin condition where she constantly has to moisturize or she dries out. They all have an inconvenience that they have to deal with, they’re just accepted for who they are. For me that’s a very autistic narrative, very living-with-a disability narrative. 

Tell me about being a gender-diverse BCBA:

And then when it comes to gender diversity, that comes into effect more with interests…. If my kid likes vacuums, I will bring my vacuum…. If my kid likes fairy tales, mythology, or magic, I will go to the library and get 11 books on fairies, and we’ll just go through them together and pick out our favorite creatures. There have been a couple of times where parents have wanted their kids to stop being interested in what they’re interested in and be interested in something more “gender appropriate.” I had to think about how I would approach this to defend my client without revealing too much about myself. I’m a man working with children and there’s a stigma about men working with children, with queer people working with children, with homosexuals working with children. I feel if I’m revealing too much about myself or not enough, there could be a misinterpretation, they might view me as a danger to their child when I’m just trying to defend them. Fortunately, I haven’t had to deal with it too much.

Tell me about being an autistic BCBA:

Primarily, being autistic is what comes into play when I’m working with the kids, and more often, with the parents when I don’t necessarily come into conflict, but I come in to decisions that need to be made, and how I approach things. When that comes in as a general rule, I never let any parents know that I’m autistic because I don’t want to set myself up as an example of what their kid is going to be or create the illusion that I’m an expert in autism. 

So…you are autistic and work to support people who are autistic…but you don’t consider yourself an expert in autism?

The thing is that when I was younger, I tried to be an expert in autism, and I realized how much pressure I was putting on myself, undue pressure, because autism is such a wide thing. I tried to make myself a representative and I realized that it was kind of out of guilt for being autistic, where I was like, “I’m sorry I’m this way, let me be as easy to understand, let me be a lesson.”  Only in my adult life did I kind of realize that, so I’m trying to un-do that pattern of behavior.

Because it took a toll on your mental health?   

Right. And because it’s stressful. And because it’s not true. No doctor, people assume that an expert knows absolutely everything. And nobody knows everything about autism. We barely understand it.  There’s like 400 genes that affect it, and we don’t know how they affect it, they just do. And we know some techniques that we can use to help people learn what they normally would not be able to learn, we know some of the symptoms, but the definition is always changing. Autism is that something you can’t really be an expert in, you can just be knowledgeable. 

Sam Krus is a BCBA in Waukegan, IL who practices in Kenosha and Madison, WI. Sam enjoys fashion dolls, podcasts, making costumes, role-playing games, board games, and reading when they have the time and energy. 

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

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

 

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

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

HOW DOES BEING AUTISTIC INSPIRE YOUR WORK IN ABA? 

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

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

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

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

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

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

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

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

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

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

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

The Autism Journey: Accepting vs. Resisting A Diagnosis

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BY: NICOLE ZAHIRY, M.A., BCBA
BEHAVIOR ANALYST SPECIALIST, AUTISM SPECTRUM THERAPIES

 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.