Tag: autism

The Importance of Sticking to Consistent ABA Therapy

FEATURED POSTS

The Importance of Sticking to Consistent ABA Therapy
August 7, 2025
Why Wandering Is a Serious Risk for Kids With Autism, Especially in Summer 
June 26, 2025
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By Ashley Williams, Ph.D., LABA, BCBA-D

Schedule Transitions Make Sticking to ABA Therapy Even More Important

Anyone in charge of the family calendar knows how important it is to stick to a schedule. It helps keep life on track.

For children on the autism spectrum, a steady schedule is even more important. A daily routine can create a sense of structure and predictability. It can reinforce a sense of stability and allow them to focus better on learning and interacting with others.

When family schedules change — like the transition from summer to back-to-school — it can be anxiety-provoking. The sudden shift from a relaxed summer schedule to a structured school routine can be overwhelming. However, maintaining a consistent daily routine during this transition can help alleviate some of this stress and anxiety.

Back to School and Back to ABA Therapy Services

For children with autism, continuing with applied behavior analysis (ABA) therapy when going back to school gives them a big advantage.

It helps to improve social, communication, and learning skills through reinforcement strategies. It also provides them with a set of tools to navigate the complexities of the school environment, helping them to learn how to interact with their peers, follow instructions, and interact in a classroom setting—all of which should be fun.

ABA therapy can be tailored to meet each child’s unique needs and goals, making it an effective way to support their overall development and learning. By incorporating play-based activities and strategies, children not only enjoy themselves but also experience the joy of learning through play.

5 Reasons Why Consistent ABA Services Are Essential

  1. Skill Maintenance: Consistency in ABA services helps children maintain the skills they have already learned. Without ongoing practice and reinforcement, they may experience skill regression, which can impede their progress. Consistent ABA services reinforce learned skills across different settings.
  2. Generalization of Skills: ABA services can provide opportunities to practice and generalize their skills in different environments. By working on skills outside the traditional school setting — such as in community settings or during recreational activities — your child can learn to adapt to skills across various real-life situations.
  3. Individualized Support: Consistent ABA services allow for ongoing individualized support tailored to the specific needs of your child. ABA programs are highly individualized, focusing on the unique goals and interests of each child. Continuity of services allows you and your team to monitor your child’s progress, adjust goals as necessary, and introduce new skills based on your child’s development and needs.
  4. Behavior Management: Summer break may have introduced changes in routine and increased leisure time, which can sometimes lead to challenging behaviors. As your child goes back to school, consistent ABA services provide behavioral strategies and interventions to address and manage these behaviors effectively. ABA professionals can work closely with you and your child to develop behavior support plans and provide guidance on how to address challenging behaviors as they arise.
  5. Transition Preparation: For those transitioning to a new school or educational setting in the upcoming academic year, consistent ABA services can facilitate a smoother transition. ABA professionals can focus on specific skills that will support your child’s adjustment to the new environment. That focus can include social skills, communication, and self-help skills. By addressing these areas during times of transition, your child can feel more prepared and confident when starting their new educational journey.

For children with autism, transitioning back to school requires a careful balance between preventing skill regression and having fun. At LEARN, our goal is both. A collaborative relationship between your family and your behavior analyst can help you create a steady schedule that works during this time of transition and sets your child up for ongoing success in school and life.

Ashley Williams is a senior clinical director at LEARN Behavioral.

For more resources about ABA consistency, watch our video “How ABA Therapy Helped Our Children Succeed: Insights from Two BCBA Moms.”

Why Wandering Is a Serious Risk for Kids With Autism, Especially in Summer 

 For many families raising a child with autism, one of the biggest fears is a child slipping away. That might mean walking out the front door, leaving the playground or disappearing into a crowd. This behavior, often called “wandering” or “elopement,” can happen in a matter of seconds. It’s more than stressful. In some cases, it can be life-threatening. 

Summer brings even more opportunities for this to happen. Routines shift, outings increase, and kids are often near water, one of the biggest safety hazards for children with autism. Understanding why wandering happens and how to prevent it can help families stay prepared and safe. 

What Is Wandering? 

Wandering happens when a child leaves a safe place without permission or supervision. This can include leaving home, school, a playground, or a caregiver in public. 

In children with autism spectrum disorder (ASD), it’s especially common. A 2012 study in Pediatrics found that nearly half of children with autism had tried to wander or run away at least once after age 4. Of those, 26% were missing long enough to cause concern. 

The reasons vary. Some children may seek out a place they enjoy, such as water. Others may run to escape overwhelming sounds, sights, or situations. But no matter the cause, the risk is high. 

Why Summer Brings Added Risk 

Wandering can happen any time of year, but summer adds new layers of risk. Families are more likely to be out of their routines, exploring new places, or visiting pools, lakes, and beaches. New environments can be exciting, disorienting, or overstimulating for kids with autism. 

Water presents the greatest danger. According to the National Autism Association, accidental drowning accounted for 71% of all deaths resulting from wandering in children with autism under age 15. 

And it can happen fast. The Centers for Disease Control and Prevention (CDC) reports that it takes as little as 20 seconds for a child to drown. 

Safety Strategies That Can Help 

Many families aren’t told about wandering risks when their child is first diagnosed. But there are proactive steps that can help reduce danger. 

Swim lessons are one of the most effective strategies. Some insurance plans may cover swim lessons for children with autism as part of behavioral treatment. Read more in Why Swimming and Water Play Benefit Kids with ASD. 

Families can also partner with a board certified behavior analyst (BCBA) to teach safety skills. BCBAs can support children in tolerating wearable tracking devices, reducing bolting behaviors, and recognizing safe adults or “community helpers.” 

Other tools include: 

  • Personal ID wristbands or GPS trackers 
  • Secure fencing or home alarms 
  • Creating emergency plans with neighbors 
  • Registering with local police or Smart911.com, which lets families share medical or behavioral information that pops up for 911 dispatchers 

Planning Ahead Brings Peace of Mind 

Not every child with autism wanders. But for those who do, preparation can save lives. 

Summer outings should be fun, not stressful. These 4 Steps to Swim Safety for Your Child with Autism offer practical tips families can use right away. 

For more information on wandering and autism safety planning, visit the National Autism Association’s Big Red Safety Toolkit. 

5 Tips for Navigating Autism Treatment for Your Multilingual Child

Author: Clinical Development Manager Maia Jackson, M.S., BCBA |

Language development is a critical component of the day-to-day lives of young children. It is used within a variety of contexts, including playing with peers, building relationships, functionally communicating needs, etc. As such, there is a heavy emphasis on language and communication built into most applied behavior analysis (ABA) programs. Because such a heavy emphasis is placed on language, it is important that practitioners are mindful of the specific language or languages that are incorporated in the therapeutic setting. The Association for Science in Autism Treatment recommends supporting  bilingualism for children with autism by encouraging family-centered, culturally sensitive language choices.

By promoting the use of the family’s native language, children have an increased likelihood of communication opportunities with their immediate and extended families, friends, and community. In addition to having more opportunities to communicate, the quality of the interactions will be more meaningful as caregivers are more likely to effectively express their own emotions, hold their child’s attention, and more thoroughly discuss topics of interest when using their native language (Zhou, et al., 2019). There are also benefits to multilingualism outside of the familial unit. Research has shown that children who are raised in multilingual homes tend to demonstrate higher perspective talking skills than children who do not (Zhou, et al., 2019). Despite all of the benefi ts to speaking one’s native language, families often face a number of barriers, especially when seeking out autism-related services.

While we live in a culturally diverse country, English remains the dominant language in most regions of the U.S. When children turn on the TV, chances are the shows they watch are in English. When they go to school, they will receive a primarily English education and their peers will speak primarily English. Autistic individuals who receive behavior analytic treatment in the U.S. are likely receiving those services in English. Despite all of these barriers, there are ways for parents and caregivers to advocate for their bilingual children and family.

1. Look for providers who speak your native language. 

One of the first measures to take when selecting a service provider is to request clinicians who speak your native language. Bilingual service providers can be hard to find and it may take time, but let your provider know your preference so they can attempt to hire and/or pair you with appropriate staff members.

2. Request translation services.

In cases where there are no staff members available to provide services in your native language, consider asking for translation services. Even if you are proficient in English, it may be easier or feel more comfortable for you to communicate in your native language. Per the Behavior Analyst Certification Board’s (BACB) Ethics Code for Behavior Analysts, the clinician you are working with should make every effort to effectively communicate with you and provide you with the opportunity to ask questions and participate in the development and implementation of your child’s program.

3. Consider the assessment language.

If your child speaks a language other than English, it is important to discuss the benefits of your child being assessed in that language. Providers use assessment results as a tool to guide the clinical program and decision making. Having the results of the assessment in your child’s primary or dominant languages will give a more accurate picture of your child’s strengths and areas of need. The starting point of the program will be more representative of your child’s language abilities.


4. Ensure the program is visually representative of your child and your family.

Visual tools and stimuli are often used as prompts, supports, and/or reinforcement systems within many ABA programs. These visual supports may serve to outline a schedule for the day, visuals might accompany a short narrative or story describing a social scenario your child might encounter, or you might see visual images used as reminders or prompts of what steps come next in routine with multiple steps, such as hand washing.  These visual items should be representative of your child and your family. Discuss incorporating your native language and culture into these items in order to promote their use and acceptance by your child. If your child accepts the stimuli and is motivated to use them, effectiveness of their intended purpose will likely increase. 

5. Discuss your language and other cultural values with your team.

Per the Ethical Code for Behavior Analysts, your cultural norms, traditions, and expectations should be extended through all aspects of the ABA program. Social interactions, communication, play activities, and activities of daily living are areas that are addressed in many ABA programs and are going to be affected by language, culture, and traditions. Discussing the ways your language and culture impact your day-to-day routines and expectations will help the clinical team develop and implement a program that is best suited to your child and your family.  

Serving as the navigator and advocator of your child’s services is a huge role. Advocating for language will often be just as important as advocating for hours, goals, or other supports.  Use your team to provide support and to feel empowered to be the advocate your child and your family need.

Back To School Tips for Parents of Kids with Autism

Jessica Sylfest is the parent of a child with Autism and ADHD and the Sr. Director of  Talent Acquisition for LEARN Behavioral. Jessica’s compassion, warmth, and learned wisdom are great offerings to all parents as we transition our kids back to school. There are a lot of specific strategies shared when navigating an IEP and how to establish good communication with your child’s team. As Jessica said, “I think there is such value in sharing experiences and sharing things that are going well and things that are a  struggle. You really never stop preparing. It’s just perpetual communication, planning with the school and with the other resources in our lives.”

To watch more podcast episodes visit www.allautismtalk.com

A Fresh Approach: Empowering Children with Autism

Written by Alison Spanoghe, Behavior Analyst, Autism Spectrum Therapies (AST)

When I first started working in a school system with children on the autism spectrum in the early 2000s, my leaders told me to stick to my instructions — no matter what. They told me this would be best for the children in the long run. As a newbie, I followed orders.

Often, though, that approach led to anger, tears, and resistance from the children who needed my help the most. Despite science backing up the “follow-my-orders” approach, it didn’t always feel “right.”

Today, my approach has evolved to something called “assent-based practice.” It’s a model that puts an end to instruction through coercion. It prioritizes the child’s agreement to participate in therapy rather than mandating that they follow orders.

The Old Way: Extinction

If you’re familiar with applied behavior analysis (ABA), you may have come across the term “extinction.” In simple terms, extinction means not reinforcing a previously reinforced behavior. The aim is to reduce the chances of that behavior happening again.

Let’s say your TV remote stops working. After a while, you’ll stop pressing the power button and maybe look for batteries or ask for help instead. The same principle applies to ABA services. If a certain behavior — like screaming — is not encouraged, the child will eventually stop doing it. You could then teach them a better way to communicate their needs instead of screaming.

While that might be good in theory, behavior isn’t always that straightforward. Also, the extinction approach can sometimes lead to other issues, like longer tantrums, aggression, or even distrust toward caregivers. That’s where assent-based practice comes in.

The New Way: Assent-Based Practice

Assent-based practice focuses on making sure the child agrees to take part in therapy — even if that agreement is nonverbal. When a child is actively engaged, that’s one indication that they are communicating that they agree with participating in treatment.

This type of approach involves:

  • Constant check-ins
  • Respecting when the child no longer wants to participate in treatment
  • Adapting the approach based on the child’s response
  • Teaching the child to communicate

The goal of this technique is to equip children with autism with skills that are useful in any situation. It also helps them advocate for themselves and make it clear when they want to say “no.” It’s more of a compassionate way of providing care.

Why Assent-Based Practice?

There are many benefits to using assent-based practice. It can:

  • Build Trust: It helps establish a safe and trusting relationship between the child and the therapist.
  • Promote Expression: The child learns that they are seen and heard. It encourages them to express their feelings.
  • Respect Autonomy: The child’s “no” is respected, promoting their dignity and independence.
  • Enhance Learning: This approach avoids standoffs. It allows more reinforcement of language use and engagement in the session.

Assent-based practice has become a popular topic in ABA services. It emphasizes getting the child’s agreement before continuing therapy. It teaches children to express their feelings. It also respects their dignity and independence.

Therapists can use this approach with any child at any time, leading to faster learning and better rapport with the child. While our understanding of assent-based practice continues to evolve, it is a worthwhile approach to consider because it puts the child first.

Alison Spanoghe is a behavior analyst with Autism Spectrum Therapies (AST).

3 Tips for Making Valentine’s Day Special for Your Autistic Child


As store shelves turn to masses of pink and red, some people get excited and others groan. Valentine’s Day, with all of its joy and complexities, is around the corner. Although love and social connection are important to everyone, Valentine’s Day can be tricky to navigate for many people, including some of our autistic loved ones. Different ages bring different challenges: from the drama of classroom valentine exchanges to the heart-stopping anxiety of having a date. Wherever your child may fall on this continuum of V-Day Life Lessons, a few considerations can help them feel cherished on this day. 

Prepare

Consider the potential challenges that your child might encounter that could be helped by some advance skill-building. Think carefully about what your child will encounter that day and what easily-acquired skills might help them enjoy the day more. A younger child whose class is exchanging valentines might benefit from practice; find out how the teacher will approach this (will the kids deposit them into a box or hand them out individually?) and rehearse in advance. A teen attending a dance might benefit from a social story about what to expect, previewing conversation starters, and maybe watching some realistic shows depicting teen dances to help set expectations. If anxiety is a factor (as it can be with anyone of any age!), make sure there is an easy way for them to contact you for an early pick-up. For safety, teens and young adults who are dating should have information about consent and sexual harassment at a level they can understand. Learning about good hygiene practices, manners, and general dating “dos and don’ts” can help to set them up for success.    

Accommodate

There will also be challenges on Valentine’s Day that can’t be solved by skill-building. Consider your child’s experience and be creative about the types of accommodations that might help them enjoy the day the most. If your child is on a special diet, find out if there will be school treats so you can arrange for something yummy for your little one. Some children will not enjoy the “typical” Valentine’s Day activities. Remember, it’s once a year, don’t stress over making them go to a class party they won’t enjoy. There may be accommodations that can help make regular activities okay (headphones), or you can simply ditch the regular valentines’ stuff and think of some fun alternatives instead. Perhaps instead of going to the dance, they can rather invite a friend over to bake brownies or watch a movie with their sibling.    

Love

Valentine’s Day is an opportunity to show others how much you care. As a parent or caregiver, showing affection for our children is one of the most fulfilling experiences. Think about your child’s preferences and give them a token of your love, whether that be treats, attention, a new Lego set, or a special rock. Giving them choices in preparing for the day (e.g., picking out valentines, choosing a special dessert, etc.), thinking about how to include their preferred interests in your plans, and making plans to accommodate sensory needs can communicate your love and respect.    

Some profoundly affected autistic folks will not be affected by the fact the world has turned pink and red; they may not understand or care. But this doesn’t prevent them from receiving your love and affection in the ways they do the rest of the year, so take the opportunity to connect with them on their level. Many autistic folks tend to anthropomorphize; if there are things (e.g., trains, books, electronic devices, etc.) that are the object of your child’s affection, think about how to celebrate these objects that give your child joy. 

For those autistic children who understand the social nuances of Valentine’s Day, it can create pressure around feelings of popularity and acceptance. If your child is experiencing these common hardships, do your best to shift the emphasis away from romantic love and toward other satisfying relationships in your child’s life. For some, that may be a friend, or for others, it may be family. Reassurance that they are accepted at home and loved unconditionally is paramount. 

Have Happy Valentine’s Day!

Last but not least: show yourself some love as well. Parenting isn’t easy and requires many qualities, including patience, empathy, and, most importantly, love. The love we give our children isn’t always returned in the moment, making it hard sometimes to reflect on all the wonderful things you do for your child. Remember, you’re raising a human, which is stressful yet important and incredible work. As you nurture your relationship with your child, you build their capacity to love and show love to others. This Valentine’s Day, take some credit for all you do for your child in the name of love and find a way to treat yourself, whether that means setting aside time to read or exercise, getting an extra hour of sleep, or calling a friend. You deserve just as much love on this special day.    

For research-backed strategies on managing stress, check out “How Parents and Caregivers of Kids with Autism Cope with Stress.” To dive deeper into the topic of love and autism, learn more at “Myth: People with Autism Don’t Feel Love.”

Myth: Autistic People Lack Empathy

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

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

The Double Empathy Problem

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

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

What does this tell us? 

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

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

Reframing

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

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

Missing Out

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

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

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

Expanding Neurotypical Empathy

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

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

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

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

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

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

7 Tips for Snow Day Fun

By Karen Callahan

While no one can argue with the fun of traditional activities, such as building snowmen or snow angels, keeping your kiddo occupied throughout an entire snow day while confined to your house might require a few more tricks up your sleeve.

Consider the unique opportunities the snow can provide for you and your kiddo to explore different language concepts, social skills, academic tasks, and leisure activities. Think about bringing what winter has to offer indoors, where it is warm, for a unique way to learn and play together.

To get started, grab a few safe bowls (think plastic Tupperware), some pots, a muffin tin, and a few spoons of different sizes. Fill one bowl with cold water and another with hot water. Throw a big beach towel on the floor and grab some of that white, powdery stuff! Here are seven tips for snow day fun.

  1. Let your child explore, figure out what they like about the activity, and add to what they find fun. If they’re watching you and waiting for what you will do next, you’ve got it right!

  2. In the beginning, don’t demand your child’s attention. Show them some fun ways to play with the snow and “kitchen stuff” and talk about what is happening. “Wow, you smashed the snow!” “Did you see it melt in the hot water?” “You got more snow!” “Stir, stir, stir, good job stirring!”

  3. Language Concepts: Once you’ve got the activity going, use the snow to start talking about fun, related language concepts like hot/cold, wet/dry, and melting/frozen.

  4. Social Skills: Take turns using the spoons, stirring, and playing. Encourage and model social skills by commenting about the activity and what you or your child enjoy. “Watch it melt!” “Wow, that is cold!” “I like playing in the snow!”

  5. Academic Tasks: Discuss weather, precipitation, seasons, and states of matter (solid, liquid, gas). Use your muffin tin and practice counting as you fill each cup.

  6. Leisure Skills: Feel free to step away from the activity and let your child dig in on their own. Sustaining a play activity and incorporating newly learned play skills modeled by an adult play a crucial role in learning.

  7. Be sure to set boundaries about where the snow must stay. We suggest prompting all snow activity back to the area of the beach towel.

Most importantly, have fun and enjoy this new experience!

The Autism Journey: Accepting vs. Resisting A Diagnosis

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.