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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.

Addressing Aggressive Behaviors in Children

Aggressive behavior is something that parents of children with autism or emotional disabilities are often confronted with on a regular basis. It can be a challenging, frustrating and emotionally draining experience. Through the support of a professional behavior analyst and consistent practices, parents, teachers, and caregivers can address aggressive behaviors in children and adolescents so that they can live productive and independent lives.

Many times when caregivers are faced with aggressive behavior, their impulse is to want to stop the behavior, and they may view the child as misbehaving. However, it’s important to understand that aggressive behavior is sending us a message. Every behavior serves a function— such as making a request, avoiding something, escaping a task or seeking attention. The same is true of aggression. For individuals with limited communication skills, aggressive behaviors can become inadvertently shaped by caretakers and others in their environment.

For example, a child throws a tantrum to gain access to candy. The parent gives the child candy to stop the tantrum. If this interaction repeats itself, the behaviors become reinforced and the child learns that tantruming is rewarded with access to the desired food. Next time, the parent may decide they are not going to give the child candy and so the child tantrums even louder and harder. If the parent gives the child candy, the parent has inadvertently reinforced the behavior. As parents, we all do this in very subtle ways regardless of whether our child has special needs or not, often without realizing that we are shaping our children’s behavior and strengthening the behaviors that are unwanted.

When children are small, it can be less of an issue for parents to manage aggression, or they may think that their child will grow out of it. It is easier to restrain young kids to combat and control outbursts, but if these are the only methods we use, we are not setting our teenagers up for success. It is important to understand why our kids are acting out and what they are trying to communicate. Once we know the “what” and the “why”, we can teach more appropriate means of communication to replace the need for aggression (such as making a verbal request and teaching the child to tolerate “no” when the answer is “no”). If the aggressive behaviors are not replaced by more appropriate functional behaviors, then we run the risk of shaping adolescent aggression which can include physical violence that is more serious and tougher to overcome.

If your child is demonstrating aggression, the best place to start is an assessment of his behavior to understand why the behaviors are occurring. A good assessment will tell you what the function of the behavior is, meaning— why he is acting out and what he is trying to communicate. Then a plan can be put in place to teach new methods for communicating effectively as well as reducing and eliminating the aggression using behavioral strategies.

Here are a few strategies you can use before aggressive episodes start:

  1. Give up some control over the environment or routines by offering choices; it does not matter if he brushes his teeth before changing clothes, but if having control over that routine helps keep your child’s aggression down, give up that control and let him choose. Providing choice also teaches independent thinking and problem solving which are critical skills for adult life.
  2. Prime your child by giving them a verbal “heads up” of what is coming: describe to your child when and what the expectations are for that setting.
  3. Use visual support like a picture board or a photo to help provide clear expectations for each activity or different parts of the day.
  4. Prompt and model the behavior you want to see instead of the aggressive behavior.
  5. Praise that behavior when you do see it so that it will continue to be a part of their repertoire. Remember if you like something you need to let your child know. In other words, catch them being good and if you like a behavior, reinforce it!

In the moment of the aggressive behavior, safety is most important! Do your best to keep yourself and your child safe. If you can redirect your child onto something else or an activity, that might be necessary.

Some parents of adolescents who display aggressive behaviors worry that it is too late for their child to have a fulfilling and independent life. On the contrary, it is never too late to start planning on a future for your child and working towards attainable goals. Think about what you want your child to be doing in a year from now and start working towards that today. If you want your child to ask for the desired item or preferred activity instead of tantruming to get it, start taking small steps now. If you are hoping they will have more friends in a year, start exposing your child to those opportunities and teaching the socially appropriate skills that will afford those opportunities. If you want them to have fewer aggressive behaviors, do not wait a year to start working to improve that behavior. It is never too late or too early to start working towards next year. The results will support your child in having their needs met and experiencing greater success at each stage of development. The ultimate goal is setting your child up for success and helping him achieve as much independence as possible.

-Richie Ploesch, M.A., BCBA, and Ronit Molko, Ph.D., BCBA-D

Successful Toilet Training for Kids with Autism

Potty training, toilet training, toileting… whichever term you use, tackling these skills can be a big deal for kids and their parents. Children with autism spectrum disorder (ASD) are often delayed at the age of successful toilet training, even when compared to children with other developmental disabilities. The average age in which a child is successfully toileting was 3.3 years of age for children with autism in comparison to 2.5 years of age for children with other developmental disabilities (Williams, Oliver, Allard, & Sears, 2003).

Extended use of diapers may diminish personal hygiene, self-confidence and increase physical discomfort, stigmatism, risk of problems later with bladder control and restrict participation in social activities (e.g., camp, after school program, etc.). Extended diaper use for children with autism is also problematic because these children may become so accustomed to using a diaper that they often demonstrate resistance to toilet-training procedures and will prefer to wait for a diaper in order to void (Tarbox, Williams, & Friman, 2004). Teaching independent toilet skill can improve the quality of life for children with autism and their families. Families will definitely benefit from the decreased costs of purchasing diapers, their children will feel empowered to address their physical needs independently all while decreasing the risk of complications associated with extended diaper use.

Before beginning toilet-training procedures, caregivers should check with their child’s doctors to rule out any medical conditions that may prevent their child from being successful with a toilet training program. Upon getting medical clearance, the next step will be to determine whether their child is showing signs that they are ready for toilet training. The following questions will assist with this step:

  1. Does the child act differently or seem to notice when diapers or clothing are wet or soiled?
  2. Does the child show any interest in behavior related to the bathroom, toilet, hand washing, dressing, undressing or related tasks?
  3. Does the child show an interest in seeing other people involved in activities or with objects related to toilet training?
  4. Does the child stay dry for at least 2 hours during the day or does his/her diaper stay dry after naps?

Each child and family is unique; therefore, the toilet training procedure needs to be designed to specifically fit the child and his/her family’s needs. Generally, caregivers and their clinician should identify and agree upon the child’s preferred mode of communication to best indicate when they need to use the restroom. This can be a specific word or phrase (e.g., “Potty”, “I need to use the toilet”, etc.) or it can be as simple as a hand signal or the presentation of an image of a toilet. To increase the potential for success, caregivers should have a preferred item or activity available (e.g. special snacks, video, etc.) and present it as a reward the moment that their child successfully voids in the toilet.  This item should be reserved only for toilet training. The child should also receive lots of praise and high fives when he/she stay dry for a specific duration of time.

Going from using a diaper to using a toilet can be a big change and is extremely difficult for lots of children. If your child has a hard time with transitions, a picture schedule may be a helpful tool to remind him/her of what task are needed to complete the toileting routine. Some things to remember: make sure to have plenty of extra underwear and clothes, a comfortable potty chair, a timer, your child’s favorite drinks, and a positive attitude!

Toilet training may be a lengthy process and require a lot of patience. This is a big commitment but the payoff will be huge!  Make sure to consult with your behavior analyst along the way to ensure the procedure is clear and is tailored to your child and family needs.

Dai Doan, M.S., BCBA

 

 

References

William, G., Oliver, J. M., Allard, A., & Sears, L.  (2003).  Autism and associated medical and familial factors:  A case control study.  Journal of Developmental and Physical Disabilities, 15, 335-349.

Tarbox, R. S. E., Williams, W. L., & Friman, P. C. (2004). Extended diaper wearing: Effects on continence in and out of the diaper. Journal of Applied Behavior Analysis, 37, 97-100.

How to Select Appropriate Gifts for Kids with Special Needs

Buying the perfect gift for kids and other loved ones can be challenging, and this can also be true when buying gifts for kids with autism. To help make your gift-giving easier, here are a few helpful tips to keep in mind when purchasing gifts for individuals with autism:

 

Focus on the person’s interests and preferences

Research shows that incorporating preferences into the learning and play environment of individuals with autism, can reduce behaviors and can increase certain skills (1). So we can capitalize on what someone already likes! For example, if a child likes dogs, find games, activities, or toys that are dog-related. If a child likes swimming, activities involving water play may be a hit (e.g., water tables, sprinkler toys, water beads, grow capsules). Alternatively, if a child is sensitive to loud noises, a toy fire truck with a siren may not be appropriate. Ask friends and family of the person for whom you are buying the gift what that person generally likes and/or dislikes.

 

Focus on age-appropriateness

Although keeping a person’s preferences in mind when shopping for gifts is a great start, always consider the age-appropriateness of the gift in mind. For instance, a teen with autism may love playing with shape sorters, but considering that he is a teen and the toy is meant for toddlers, there are more appropriate toys with which he could play. Try finding gifts that have similarities to the original toy, but have age recommendations that correspond to the age of the individual for whom you are buying the gift. For example, rather than buying a new shape sorter for the teen, a more appropriate gift might be Jenga or a piggy bank. In Jenga, stacking wooden blocks in a pattern and pushing wooden blocks out of a block tower is a similar activity to pushing shapes through a shape sorter. Additionally, dropping coins into a piggy bank slot is a similar activity to pushing shapes through a shape sorter. Both of the aforementioned activities could serve as a more appropriate replacement for the shape sorter.

 

Focus on developmental-appropriateness

Many toys come with age recommendations, and while these recommendations are helpful, they might not always lead you to the perfect gift. A rule of thumb when purchasing a gift is to consider both the age and the development of the person for whom you are buying a gift. For example, the game “Apples to Apples” would not be developmentally appropriate for a non-verbal teen, even if it is an age-appropriate game. When looking for the right gift, focus on what the person can do. For instance, if the non-verbal teen mentioned above is great at drawing, then a sketch pad or an adult coloring book could be a more appropriate gift. If you are unsure what the person can do, ask friends and family of the person for whom you are buying the gift what skills that person has mastered.

Note: Be sensitive to how family and friends of a person with autism may feel when being asked questions about the skills of their loved one. If asking questions, always frame your questions from the perspective of accomplishment (e.g., what skills have they mastered) and not deficit (e.g., in what areas are they delayed) to be supportive and respectful of the individual’s growth and development.

 

Be mindful of behavior excesses/triggers

Some individuals with autism engage in behaviors that put them or their loved ones at risk of harm. For example, if a child engages in pica (e.g., eating of nonfood items), gifts containing small objects may pose as a choking hazard. For example, if a child engages in aggression towards others, gifts with violent content may not be appropriate, as additional exposure to violence may contribute to future instances of aggression. Alternatively, individuals with sensory-seeking behaviors may benefit from gifts that redirect their behaviors in more appropriate ways. For example, if a child rocks back and forth, a swing may be a great way to meet their sensory need. Additionally, certain objects can trigger behaviors in some individuals with autism (e.g., loud noises, highly preferred items, phobias, etc.). Ask friends and family of the person for whom you are buying the gift if there are any behavior excesses/triggers to consider before purchasing a gift.

 

Focus on toys that encourage interaction with others

Social deficits are a defining characteristic of autism, which means that when gift-giving, try to purchase gifts that encourage social interaction. While almost any activity can be turned into a social interaction, certain activities may be more conducive to social interactions than others. For example, instead of buying a computer game, consider the game Bop It, which is an electronic game that can be played in a group.

 

Focus on expanding their repertoire

Individuals with autism sometimes have restricted or limited interests (e.g., a person only wants to talk about trucks or only wants to play with dinosaurs). In order to help expand their repertoire, try finding activities that are new, but similar to current interests. For example, if a child’s favorite activity is playing with PlayDoh, kinetic sand or slime may be an appropriate gift to help expand their repertoire because it is similar to their current interest, but slightly different. Ultimately, gifts that will provide them with new experiences may act as potential new reinforcers (e.g., stimuli that increase behaviors), and may significantly enrich their learning environment.

 

Recommendations

Stores: Lakeshore Learning Center, Autism-Products.com, NationalAutismResources.com, Target, Kohl’s, Amazon, WalMart, iTunes (for apps)

Brands: Melissa and Doug, Fat Brain Toys

Apps: Proloquo2Go, Avaz Pro, Life360 (Find my family, friends, phone), Choiceworks

 

– Brittany Barger, M.Ed., BCBA

 

 

Resources

Increasing Task Engagement Using Preference or Choice-Making
Some Behavioral and Methodological Factors Affecting Their Efficacy as Classroom Interventions

Creating Successful Play Dates

For a child, afternoon and weekend hours can be an ideal time for a little adventure or bonding with a friend. Play dates have become a regular practice for most parents who want to make the most of their child’s free time.  These coordinated get-togethers can also be a great way to help your child practice social skills, play skills, and communication skills with peers in a safe and structured setting. Preparing for a play date and having it go as planned can be a challenge for many families with a child who has special needs. Here are some tips for creating a successful play date.

  • Be thoughtful about the invitation. Choose a child who is close to your child’s age and displays age appropriate communication, social, and play skills. The peer should be able to play cooperatively and be flexible. It can be helpful if the child enjoys giving lots of help and suggestions to friends. Your child’s school, neighbors, or members of your religious congregation may be able to connect you with peers.
  • Plan the activities ahead of time. Choose activities which both children will enjoy. Some great options are activities that are structured, organized and require some level of cooperation. Planning this way can help make the time fun and special for all.
  • Pre-teach the activities to your child. Prepare your child for the play date by practicing the planned activities in advance. Try role playing and pretend to be the other child.
  • Consider what you want your child to learn during play dates. Play in and of itself is valuable but it is also an opportunity to learn new skills. Having clear goals will increase the likelihood that specific skills can be practiced during play dates. Have two or three specific goals (e.g. taking turns, asking questions, responding to questions, changing play activities appropriately), and consider taking notes on how your child did on each goal.
  • Keep it short. You may want to stick to 30 minutes for first few play dates. The 30 minutes can be further broken down into several 10-15 minute activities. Make sure transitions between activities are short and smooth.
  • Facilitate the play and provide reinforcement. Encourage cooperative play and guide the children to interact with each other. Provide frequent treats and praise as reinforcement for positive interactions.
  • Suggested activities. Consider activities where the children need to work together, problem solve, and share the same materials. Treasure hunts are great activities – hide toys and treats around the house and give the children a map to the treasures. Art projects are also fun with friends – make a collage, paint a poster or mural. Yard games to try are Freeze Tag, Hide and Seek, Red light Green Light.

For more helpful tips, check out our other blogs here.

Holiday Gift Guide for Children with Autism

By Kelly Namanja

Selecting suitable toys for a child’s holiday or birthday gifts can be challenging, especially when the recipient is a child with autism. This handy list includes a number of popular, age-appropriate toys for children up to five years of age. Parents should keep in mind, however, that every child is unique and will respond differently to certain toys and teaching materials. You can check with your child’s therapist or teacher to determine what’s most appropriate for your child’s needs and interests.

Under 3 years old:
-Shape sorters
-Puzzles (wooden with a peg on each piece)
-Board books (including touch and feel books)
-Stacking/nesting blocks and cups
-Cause-and-effect toys with buttons, lights, sounds, and music
-Dolls and large action figures

Ages 3-5:
-Games (e.g., Candy Land, Chutes and Ladders, Don’t Break the Ice, Hungry Hungry Hippos, Memory, Hi-Ho Cherry-O, Zingo)
-Puzzles (up to 25 piece jigsaw)
-Action figures/dolls and related accessories
-Dress up items and beads
-Pretend play toys (e.g., kitchen, construction, doctor kit, etc.)
-Art supplies (e.g., markers, crayons, stickers, construction paper, glue)
-Play dough and/or Moon sand
-Small building blocks (e.g., LEGOS)
-Cars, trucks, trains, etc.
-Lacing cards
-Sports sets (e.g., plastic bowling ball and pins, plastic baseball, bat, and tee)

All children 5 and under:
-Large building blocks (e.g., Mega Blocks or Duplo)
-Electronic learning toys (e.g. Leap Frog, V-Tech)
-Fisher Price Little People sets
-Plastic animal figurines
-Magna-Doodle
-Musical instruments (e.g. drums, cymbals, maracas, keyboard)

Read Reducing Holiday Stress for Families of Children with Autism

For more tips, check out the Toys R Us Toy Guide for Differently Abled Kids