Teaching Flexibility

By: Tameika Meadows, BCBA from I Love ABA

“Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history:

1. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).”

www.CDC.gov

It is part of the diagnostic criteria for Autism to struggle with Rigidity.

What is Rigidity? It is an inflexibility, an inability to tolerate change or unexpected events, to varying levels of difficulty.

This is something many of my clients struggle with, and it can be quite life impacting in negative ways. Issues around rigidity can affect the school day, relationships/social ties, life at home, transitions, community integration, and vocation/employment success (for older clients).

Some examples can include:

  • Difficulty tolerating a change in teacher
  • Difficulty staying calm if something breaks, loses power, or the battery dies
  • Difficulty staying calm if mom or dad drive past Wal-Mart but we don’t go inside 
  • Insistence on the same routine every day, Monday-Sunday
  • Refusal to change eating habits, clothing choices, etc., from one day to the next
  • Difficulty sleeping if traveling, away from home, or the bedtime routine is different

As rigidity is a core characteristic of Autism, treating or intervening on it must be approached carefully. The goal should not be to turn an inflexible person into a flexible person. The goal should be to help the learner adapt to an ever-changing world that will NOT stay constant, and increase the learners coping skills to accept what they cannot control. 

To a degree, most of us are creatures of habit. We buy a certain brand of makeup, we brush our teeth a certain way, we park in the same place when we go to work, we always sit in the 2nd row for our college lectures, etc. It isn’t inherently a problem to like sameness and predictability in your life.

But.

This does become a problem when the reaction to the routine being disrupted, is explosion, aggression, self-harming, etc. For example, I have specific restaurants where I order the same thing every time I go. If I went one day and that item wasn’t available, I’d be disappointed, annoyed… I might even leave and go eat somewhere else. But I would not become a danger to myself or others, and I would not perseverate on that annoyance for hours or days.

So how do we help our clients, students, and loved ones calmly accept life’s inevitable changes?

ABA provides many, many strategies to teach flexibility and tolerance to change. Let’s discuss a few:

  1. What are we teaching instead? This should be priority #1, it is truly that important. We cannot just rip away established patterns and rituals, we have to first identify the replacement behavior(s). This could include teaching the ability to request (“I wanted the red cup”), to wait (“We will go to Wal-Mart, but I’m stopping at Wendy’s FIRST”), to self-manage anger and disappointment (“I can see you are angry. Let’s do our deep breaths, okay?”), and/or to problem solve (“Oh no, your tablet’s battery died. How do we fix that?”).
  2. Do we have rule out for underlying issues? It is not uncommon that Autism co-occurs with other diagnoses. Is the learner just “rigid”, or are they OCD? Or struggling with an undiagnosed Anxiety disorder? 
  3. Intentionally, and systematically, introduce change. I work with so many families who try to skirt this issue by avoiding changing things in their child’s environment, giving in to the rituals, even driving out of the way in the community to avoid passing places that will trigger the child. I know this seems like the easy way to manage this problem, but in reality it will make things worse. It is almost presenting a lie to the learner to act as if nothing in their environment need ever change. That just isn’t real life. We need to help the learner by introducing small, intentional changes (start super small) and then helping them tolerate that change. Speaking of tolerate….
  4. Help the learner develop a “plan of action” when they are triggered. This will be highly specific to the individual learner, so I cannot give a recipe for this. What is most important is to utilize function based intervention to teach a strategy to the child for de-escalation. For example: When there will be a substitute teacher at school, inform the learner. (If possible) Talk about how they feel about this change. Empathize with their distress, and do not minimize it. Engage in action steps such as pacing, squeezing a stress ball, humming, and deep breathing with closed eyes. Remind the learner of the things they can control/the things that are unchanged. For example: “I know you’re angry that Mr. Walker is not here today. That’s disappointing. We can go in the hallway and take a break, and when we come back in you let me know if we’re doing our writing journal or sight word folder first. Okay?”.
  5. In Step # 4 I referenced “Empathy”. I know it can be frustrating and stressful when your client/child/student explodes over a moved seat, a different bowl at breakfast, or a broken toy. You might think “WHAT IS THE BIG DEAL?!”. Well, do you like change? If we’re honest, most of us do not like unexpected, unrequested change. It makes us angry, and we feel annoyed. So even if you can’t fully relate to the size of the explosion, you can relate to the feeling, right? That “relating” is empathy. Put yourself in the learners shoes, and treat them the way you would want to be treated if you were that upset and agitated.

Additional Resources

This piece originally appeared at www.iloveaba.com.

About the Author

Tameika Meadows, BCBA

“I’ve been providing ABA therapy services to young children with Autism since early 2003. My career in ABA began when I stumbled upon a flyer on my college campus for what I assumed was a babysitting job. The job turned out to be an entry level ABA therapy position working with an adorable little boy with Autism. This would prove to be the unplanned beginning of a passionate career for me.

From those early days in the field, I am now an author, blogger, Consultant/Supervisor, and I regularly lead intensive training sessions for ABA staff and parents. If you are interested in my consultation services, or just have questions about the blog: contact me here.”

Posted in ABA

First Responder Education in Autism

This month’s ASAT feature comes to us from Dr. Karen Parenti, MS, PsyD CEO/Executive Director at Special Friends Foundation. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!

I am a parent of a young man with autism. I also work in the area of law enforcement. What are some important considerations when teaching first responders and law enforcement personnel how to interact with individuals with an autism spectrum disorder?

This is a very important question and one in which many local communities continue to place their focus. In addition, treatment of individuals with autism spectrum disorder (ASD) by law enforcement is a common worry for parents or caregivers. As such, the topic requires training to increase awareness of ASD for first responders and local community members, as well as collaboration between service providers and law enforcement. As in any crisis or challenging situation, the main focus should be on positive and preventative approaches, as most behavioral crises with individuals with ASD can be avoided or lessened. To promote awareness on the part of first responders and prevent crises, ASD service providers should regularly and proactively prepare individuals with ASD for a possible encounter with emergency personnel and law enforcement using understandable language, pictures, books, or video models about emergencies, so they know what to expect and how to respond. Additionally, building ongoing rapport and familiarity between individuals with ASD and their local police or fire departments might help ensure the person with ASD perceives the first responder as a helper when a behavioral or medical event occurs. In many cases, situations will arise that require emergency intervention by first responders because of the unique challenges and behavioral escalations that commonly occur with individuals with ASD. Therefore, training for first responders is of the utmost importance.

Police officers consistently and expertly respond to a large number and variety of emergency situations daily. Each emergency has its own unique characteristics, and so do the individuals involved in that crisis. First responders and police receive standard and rigorous training on how to respond to emergencies compassionately and effectively. This training, while appropriate and efficient for most situations, is not necessarily the best way to respond to a child or adult who is diagnosed with ASD. Unfortunately, this may lead to a tragic outcome such as injury or death.

Whether the emergency is a medical or behavioral crisis, understanding ASD and how someone with ASD might behave are crucial to ensuring a favorable resolution to any incident. Individuals diagnosed with autism may have heightened emotional responses in these volatile and stressful situations. For persons with ASD, emergencies are difficult to comprehend. During these uncertain and confusing events, a person with ASD may fail to respond to vocal directions, may exhibit a startle response when touched, may run when addressed, or may engage in self-injurious or aggressive behavior.

For emergency responders, interacting with individuals with ASD can seem ambiguous and unpredictable. Therefore, it is essential that emergency personnel learn to respond as sensitively and effectively as possible to individuals diagnosed with ASD, so attempts to speak with or care for the individual do not inadvertently cause the individual’s behavior to escalate. As you may know, this is especially important during a medical crisis because individuals with autism cannot always communicate feelings of pain or discomfort. A person with ASD may already be feeling frustrated and possibly agitated by their inability to convey their concerns and needs, thus when approached, that individual may respond in an unpredictable and unconventional manner. It is important that first responders be prepared for such unusual responses, incongruent emotions, and failure to respond to directives and questions.

In addition to providing police officers and first responders with information about autism symptoms more generally, an important next step is to teach first responders how individuals with ASD might behave in a crisis. In particular, emergency personnel need to understand how individuals with ASD might act when they are scared, agitated, confused, overwhelmed, or in pain.

A Child or an Adult Diagnosed with an Autism Spectrum Disorder May:

  • Avoid eye contact.
  • Walk away from family residence or group home to stores, shopping centers, local pools, or other places they enjoy. They may wander into traffic, not understanding environmental dangers.
  • Be overstimulated and not comply appropriately to police or first responders’ instructions. For example, they may not respond to directives such as “come here”, “get out of the street” or “let me see your hands.”
  • Become preoccupied with certain objects or interests, such as planes, trains, fire trucks, or movies.
  • Repeat or echo phrases, words, or actions.
  • Not know how to relate, talk, or play with others.
  • Have sensory sensitivity, manifested by stereotypical behaviors which may include covering their ears, flapping their hands, spinning, toe walking, or making unusual noises among others.
  • Become agitated due to the disruption in their routine.
  • Have unusual reactions to the way things in the environment look, feel, smell, sound, or taste.
  • Not speak at all or may not be able to communicate their wants or needs effectively.
  • If verbal, may have difficulty understanding questions or may respond noncontextually. For example, they may simply script from a movie, speak about their special interests, or provide answers that appear to be evading the questions posed.
  • Be unable to communicate that they are in pain.

A first responder will be able to interact more appropriately with a person with autism if he or she is able to recognize that the person may have ASD. It may also be helpful if the first responder becomes familiar with the following crisis response and intervention safety habits.

Crisis Response and Safety Habits:

  • Take 30 seconds to assess the situation and the scene before responding.
  • Remain calm.
  • Use an even, controlled tone of voice with minimal directives, including simple phrases and visual cues such as pointing or using simple gestures that may be easily understood by minimally verbal individuals.
  • Pay close attention to the person’s body language, tone of voice, gestures, and any other signs of potential fear or agitation.
  • Practice trauma-informed care and assume that everyone has experienced some type of trauma and is easily startled.
  • Respect personal space, except when it is necessary to approach the person. Remember that getting too close may increase agitation in some individuals with ASD. Ask the person or someone familiar with the individual with ASD what they want/need while maintaining a safe distance.
  • If possible, recruit familiar and trusted persons to assist you in understanding how to approach the individual.
  • Reduce stimulation and allow time and space for the person to process information and requests. For example, it might be helpful to clear the area of additional people, turn off the lights of the emergency vehicles, and eliminate other extraneous noises as much as possible.
  • Be prepared and practice situational awareness. Know your surroundings and the location of the closest exit.
  • Deflect aggression and block self-abuse when and if possible. If a physical intervention is necessary because the situation is unsafe, establish control in a safe, non-threatening manner. Remind the person that you are there to help.

Awareness is Essential

When police officers and first responders receive training in interacting and working with individuals with ASD, incidents in the community may be resolved quickly and more effectively. With quality training, headlines reporting distressing incidents, such as that above, may be a thing of the past. Instead, the type of training discussed here, when offered regularly to our dedicated police officers and first responders, could result in positive approaches like this:

Autism awareness is essential for all members of the larger community but is truly imperative for first responders. In the absence of information, first responders may misinterpret the behavior of a person with ASD, may ascribe hostile intent to agitated behavior, may inadvertently escalate the behavior of the individual, or may fail to safely calm the individual. In cases such as these, there can be dangerous consequences. An opportunity exists for ASD service provider agencies to provide specialized training to local first responders. Providers can contact law enforcement officials and other emergency personnel to offer informational training sessions on a local level. In our experience, the administrators are routinely grateful and accommodating about arranging such training.

First responders need a dual skill set. First, they need accurate information about persons with ASD, including their behavioral characteristics, and secondly, they must use skills to de-escalate the situation when they engage with a person with autism who is in a confused and agitated state. With community outreach, negative outcomes can be averted, bridges can be built, and wider acceptance of persons with ASD can become a reality.

Additional Information and Resources

The following resources provide additional information related to first responders:

About the Author

Dr. Karen Parenti works as the CEO/Executive Director of Special Friends Foundation.  She has extensive experience in ABA and in developing and overseeing group homes, day services, and rehabilitative programs for individuals with intellectual and developmental disabilities and autism. She also serves as the treasurer of the MAX association’s board where she continues to advocate for the needs of the individuals she serves. Karen earned her Bachelor’s degree in psychology from York College of PA, her Master’s Degree in Human Services Administration from Springfield College in Wilmington, DE and her Doctorate Degree in Clinical Psychology from Immaculata University.

This article has been republished with permission from https://asatonline.org/research-treatment/clinical-corner/first-responders/

Posted in ABA

VB-MAPP vs. ABLLS-R: Which Assessment Should I Use?

By Sam Blanco, BCBA

Assessment is the cornerstone of creating appropriate and effective interventions. Two common assessments used for youngsters with autism are the Assessment of Basic Language and Learning Skills-Revised (ABLLS-R) and the Verbal Behavior – Milestones Assessment and Placement Program (VB-MAPP). You’ve likely heard of both the ABLLS-R and the VB-MAPP. While these two assessments are similar in many ways, there are also some big differences that might make one more appropriate for you than the other.

ABLLS-R

The ABLLS-R is made up of two components: the ABLLS™-R  Protocol and the ABLLS™-R Guide. The protocol is comprised of a skill-tracking system, assessing items ranging from listening and language skills to academic and ADL skills. The scoring system is simple, in that each specific skill is broken down into 2-4 levels. You simply mark the level that matches your client’s current skill. The simple organization allows for you to easily track your learner’s progress.

It is important to recognize that the ABLLS-R is more than just the protocol. It also includes the ABLLS-R Guide, which provides instructions for scoring as well as strategies for using the information to develop appropriate goals. Over the years, I have seen many practitioners simply using the protocol without referring to the guide. This is an error that should be corrected, as the guide is a useful resource for parents, teachers, and practitioners. Finally, the ABLLS-R assessed skills that typically develop between approximately ages 2-6.

VB-MAPP

The VB-MAPP is composed of five components.

The Milestones Assessment is comprised of 170 measurable milestones, all based in B.F. Skinner’s analysis of verbal behavior. It focuses primarily on language and social skills, but does include some skills related to academics.

The Barriers Assessment provides a way to assess and measure common barriers to learning experienced by children with language delays. These include barriers such as prompt dependence, impaired social skills, and failure to generalize.

The Transition Assessment provides a way to assess and measure progress towards the child’s ability to move to a less restrictive environment. This portion of the VB-MAPP includes items such as the rate of acquisition for new skills, adaptability to change, and ability to learn from the natural environment.

The fourth component of the VB-MAPP is the Task Analysis and Supporting Skills. This portion goes hand-in-hand with the Milestones Assessment. It is comprised of hundreds of skills that are often directly related to the milestones. It shows the skills that should be taught prior to each milestone and can provide additional information into the child’s current skill level.

The final portion is the VB-MAPP Placement and IEP Goals. This is an in-depth guide for developing IEP goals and identifying interventions based on the results of the other portions of the assessments.  As with the ABLLS-R, I’ve seen many practitioners utilizing the VB-MAPP without referring to the Placement and IEP Goals in the VB-MAPP Guide. This is an error that should be corrected to best use the assessment. The VB-MAPP assesses language skills that typically develop by age 48 months.

VB-MAPP or ABLLS-R?

It is valuable to receive training in both of these assessments. They are important tools for assessment, especially if you are working with young children.

No matter what assessment you choose, we’ve got you covered! Head to our website and check out our full line of ABLLS-R and VB-MAPP supports, including our exclusive full assessment kits!


About The Author

Sam is an ABA provider for school-aged students in Brooklyn, New York. Working in education for over 15 years with students with Autism Spectrum Disorders and other developmental delays, Sam utilizes strategies for achieving a multitude of academic, behavior, and social goals. She is also an assistant professor in the ABA program at The Sage Colleges and the Senior Clinical Strategist at Encore Support Services. You can read more of Sam’s posts for Different Roads To Learning when you click here!

Posted in ABA

Preference Assessments & The RBT Dilemma

By: Tameika Meadows, BCBA from I Love ABA

Across multiple industries, staffing deficits are a big problem right now. 

There are many different explanations for this, but certainly in a post-COVID world all of us are redefining work, evaluating our priorities, and learning how precious our time is…..if people are unhappy at work/in their career, it makes sense that the past 2 years would push them to DO something about that.

But let’s talk about RBT’s, specifically.

The RBT credential is an entry level position into this field. When a clinician company hops, it is usually for a different BCBA position. After all, there was tremendous time, energy, money, and schooling that went into the decision to become a BCBA, so most will try a new company out before trying a new profession.

For RBT’s though, many are not that connected to the field. They may still be figuring out if this is what they want to do long-term. Or, they may already know that they plan to pursue education, mental health, counseling, or other degrees, and are working as a RBT now for valuable experience. The point being, its often true that RBT’s not just company hop, but industry hop/leave the field. Especially right now, when the impacts of quarantine and the pandemic are still lingering. Client cancelations, health scares (e.g. sessions canceled for a week until a clear COVID test), companies lowering rates or decreasing benefits to ease financial strain, funders decreasing reimbursement rates, etc. All of this contributes to the experience of the RBT.

I mean, just look at current gas prices. If you think that isn’t impacting the job satisfaction of RBT’s who spend most of their day driving from client to client, then you are deluding yourself.

So, what can be done?

Why Do RBTs Leave?

What is often attempted is increasing incentives. Things like: pizza day, bonuses, raffle drawings, trivia nights, casual Fridays, referral bonuses, public recognition/”Shout Outs” from management, use of a company iPad, etc.

Here’s the problem though: did anyone ask for that

What are your frontline staff asking for? When people leave, WHY did they leave? When people turn down an offer, or decline moving forward in the interview process, WHY did they lose interest? What happened? When staff complain or bring up concerns, are they addressed and resolved? Or bounced from person to person in the company? Is management toxic to deal with, unprofessional/gossipy (especially in center based settings), incompetent, etc.? Toxic managers are one of the largest reasons why people leave otherwise good companies.

 When I speak with unhappy RBT supervisees, the issues they describe to me tend to be systemic/management level problems (meaning, the supervisee cannot fix the issue), or a symptom of RBT mistreatment/low regard.

For example:

  • Low pay/Pay rate has not budged since hire/Low hours (hired as FT but only working PT hours)
  • Client cancelations or schedule changes that cause loss of income
  • Poor fit to clients on caseload/Working outside of clinical competency
  • Not supported by BCBA/Minimal supervision
  • Issues with admin or management (rude, unprofessional, incompetent, etc.)/Inaccessible owner, management, or HR/Management does not support or “back” the RBT when there are issues with the client parent
  • No company policy on parent involvement or participation/No company policy on respecting the staff or employees/No consequences when client families regularly arrive late to sessions or cancel frequently
  • Excessive driving (only client is 2 hours away)
  • No benefits/No healthcare due to unable to maintain FT hours
  • Company does not provide needed equipment and supplies to perform job/RBT must provide their own supplies
  • Being expected to do extra work for free (required to train new hires for free)
  • Insufficient training on company required technology (required to use data software, but minimal training on it or support when it isn’t working correctly)

If I was working with a client, and providing access to pizza, gift cards, and trivia nights, but the target behavior was not improving, my conclusion would be that I need to reevaluate my reinforcers. Looks like they aren’t so reinforcing after all!

Okay, then let’s apply that same conclusion to our workforce. If they are continuing to quit in large numbers, the reinforcers and motivating variables are lacking. Something is wrong, something is off. And as owners, bosses, managers, and stakeholders in this conversation (supervising BCBAs may not actively hire or employ RBTs, but we can certainly advocate and speak up for them in the workplace) we need to do better for our highly important RBT workforce.

So, what do RBTs want?

Heck, I don’t know. 😊

You need to ask THEM that. Individually. Consistently. Intentionally. At the onset of employment. As well as on a recurring basis once they take the job.

Don’t wait for people to become unhappy and dissatisfied and only then start pouring on the incentives, gift cards, and bonuses. Be proactive and intentional about building a strong workforce, demonstrating value (link), and probing individual employee preferences and reinforcers, so that the workplace can be an enjoyable setting (and reinforcing stimulus) for the people wo work there.

…… Or it’s highly likely they won’t work there for long.

This piece originally appeared at www.iloveaba.com.

About the Author

Tameika Meadows, BCBA

“I’ve been providing ABA therapy services to young children with Autism since early 2003. My career in ABA began when I stumbled upon a flyer on my college campus for what I assumed was a babysitting job. The job turned out to be an entry level ABA therapy position working with an adorable little boy with Autism. This would prove to be the unplanned beginning of a passionate career for me.

From those early days in the field, I am now an author, blogger, Consultant/Supervisor, and I regularly lead intensive training sessions for ABA staff and parents. If you are interested in my consultation services, or just have questions about the blog: contact me here.”

Posted in ABA

This is Hard.

By: Tameika Meadows, BCBA from I Love ABA

This is hard” is a statement I often hear from families both in the midst of intervention, and pre-intervention during the assessment phase.

Families without support and services find it hard helping their Autistic child navigate the world, and families in the midst of therapies and interventions find generalizing them to be hard.

It’s hard to consistently generalize an intervention plan outside in the home, on the weekends, on Sunday at the grocery store, on vacation at Grandma’s house, or at 6am on a Saturday when your child only slept 2 hours.

But its also hard to supervise/monitor your child 24-7, to break up sibling fights all day long because your child can’t share, to find quality childcare options when your child is highly aggressive, or to figure out if your child is ill or sick when they can’t tell you.

Both are hard.

It is rarely a discussion of hard vs easy, and much more common is a decision regarding which “hard” is acceptable. Yes, toilet training is hard work. On the flip side, changing an 8 year-olds diaper isn’t exactly easy. Nor is it easy to afford to buy diapers for that many years.

Yes, teaching your child to use utensils instead of eating with their hands is hard. On the flip side, restricted diet and issues around mealtimes can be made worse if the child will only eat finger foods (typically, starches and carbs). That is also hard.

Yes, it is hard to consistently follow a Behavior Plan when in public with your child. On the flip side, being asked to leave locations, having friends ask that you not visit, or being scared someone will call the police on your child during a public outburst, is a hard reality to live out.

You have to decide which “hard” to accept.

I intentionally use the phrase “intervention plan” and not “ABA therapy”, because maybe your child isn’t receiving ABA services. Maybe you don’t want that, or can’t access it.

But are they receiving Speech services? OT? PT? In special education at school? Attending an Autism preschool program?

If so, these are all interventions designed to minimize developmental delays and target current deficits.

Whatever kind of intervention your child participates in, there are a few components that tend to be the same across different therapies:

1. Consistency. In order to be effective, the intervention must be applied consistently. Frequent staff turnover, frequently canceling appointments, or other issues like this can negatively impact results.

2. Training must carry over to the home setting/caregivers. There is no way to generalize the intervention if you have no idea what it is.

3. Caregiver Participation. In order for #2 to happen, the caregivers must be willing and available to participate in the intervention/treatment plan.

4. Focus on progress vs miracles. Progress can be slow, it can be up and down, and at times it can mean treading water. Sometimes an absence of regression IS progress. If you have sky high expectations of the intervention process, this can cause “provider hopping” where families move from one agency, provider, or intervention to the next looking for magic. That just is not how quality, ethical treatment works.

5. Individualized Intervention. It doesn’t matter if your child receives 30 minutes of Speech each week, or 15 hours of ABA. Are the treatment goals and the teaching methodology suitable and appropriate for your child? “Cookie-cutter” intervention is when treatment is applied in a lazy, vague, and generic way across multiple clients. In order for intervention to be effective, it must meet your child where they are and incorporate their unique interests and motivation(s).

About The Author: Tameika Meadows, BCBA

“I’ve been providing ABA therapy services to young children with Autism since early 2003. My career in ABA began when I stumbled upon a flyer on my college campus for what I assumed was a babysitting job. The job turned out to be an entry level ABA therapy position working with an adorable little boy with Autism. This would prove to be the unplanned beginning of a passionate career for me.

From those early days in the field, I am now an author, blogger, Consultant/Supervisor, and I regularly lead intensive training sessions for ABA staff and parents. If you are interested in my consultation services, or just have questions about the blog: contact me here.”

This piece originally appeared at www.iloveaba.com

Posted in ABA

What Kind of Assessment is Right for Your Child?

By Mariela Vargas-Irwin, PSYD, BCBA-D, LABA, Executive Director of ABLS

Every day was hard with 5-year-old Tony. He would purposely find ways to annoy others and just did not seem to respond to consequences. The school tested him and said that there was nothing wrong; in fact, they said he was gifted.

Another child, Latoya, was never the same after being in a car accident. She cried all night and refused to get into any car. She also seemed to be unable to play with any of her previously preferred toys for long and had frequent tantrums.

Then there was 10-year-old Maria, who didn’t seem to be making any progress at school. She had an intellectual disability and her Individualized Education Program looked good on paper. However, she was becoming more aggressive each day and her language continued to be very limited.

Finally, Autumn, 2 years old, was in a fog. She stopped saying mama and dada, cried for no apparent reason, and ran in circles all the time.

Developmental and behavioral concerns about your children, such as those listed above, can be extremely distressing. Of course, you would do anything for your child!

But where to start?

What Tools Do I Need?

The first step is to consult your pediatrician. They will be able to rule out any possible medical problems and are more likely than a specialist to be able to see you quickly. Once a physical cause for your concerns is ruled out, your pediatrician will most likely refer you to a psychologist for an assessment. There are, however, several kinds of assessments that can be conducted.

A Comprehensive Diagnostic Assessment will include a cognitive and an adaptive assessment. It may include both norm-referenced assessments that compare children to others, as well as criterion-referenced tests that compare students to themselves. A Comprehensive Diagnostic assessment may result in a diagnosis such as Autism or Attention Deficit Hyperactivity Disorder.

The psychologist or a behavior analyst may also perform a Functional Behavior Assessment. A Functional Behavior Assessment examines the functions of the behavior via direct and indirect methods helping guide the development of a Behavior Support Plan.

Another type of assessment that may be helpful is a Program Assessment. A Program Assessment includes a visit to your child’s school to determine whether their needs are being met and their Individualized Education Program is being implemented properly.

Lastly, a Neuropsychological Assessment examines executive functioning skills, attention, and memory, in addition to cognitive and adaptive skills. 

How Would Assessments Help My Child?

To speak to the above examples, Tony would need a Comprehensive Diagnostic Assessment and a Functional Assessment to ascertain the function of his aggressive and disruptive behavior. The fact that he is gifted intellectually does not rule out that he may be struggling with Attention Deficit Disorder with Hyperactivity, Autism, or Post Traumatic Stress Disorder.

Latoya would need a neuropsychological assessment that will examine executive functions, language, and attention to ascertain the impact of the accident on her neuropsychological functions. Typically, a complete neuropsychological assessment is conducted immediately after the accident and then repeated every six months.

Meanwhile, Maria would require a Program Assessment to determine whether her school program is meeting her needs. This assessment should include a complete review of her progress reports in addition to a visit to her school. She may also need a Functional Assessment of her aggressive behavior at home.

Lastly, Autumn urgently needs a Comprehensive Diagnostic Assessment to rule out Autism.  If she does have Autism, she will need intensive early behavior analytic intervention to be implemented as soon as possible so time is of the essence. 

Whatever the assessment process holds for your learner, it is important that the instruments used are both reliable and valid, and ideally they would be able to be utilized to track progress over time. Every child is different; therefore, no assessment process will proceed identically. 

About the Author

Dr. Mariela Vargas obtained her doctoral degree from Rutgers University, completed her internship at Boston Children’s Hospital, and pursued post-doctoral training at the Baker Children’s Center. She has over thirty years of experience working with children with autism and other developmental disorders with behavioral challenges. Dr. Vargas has worked as a home-based behavioral therapist, overseen home-based programs, designed training protocols for ABA therapists and supervisors, and consulted with families and schools. She was the second president of the Massachusetts Association for Behavior Analysis and has presented in numerous national and international Autism and ABA conferences. A licensed Psychologist and Board Certified Behavior Analyst, she is the founder and executive director of Applied Behavioral Learning Services (ABLS). Her interests include inclusion, psychometrics, social skills, and executive behavior.

Jack Matters, Too: A Mother’s Perspective on Her Son’s Place in the Autism Community

This month’s ASAT feature comes to us from Judith Ursitti. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!

Judith Ursitti, Mother of Jack

I love this young man with all of my heart. I worry about his future. He has so much to offer this world. But frequently, I read things that seem like they deny the realities of valuable humans like him.

He’s not a savant. He doesn’t type. He gets up in the morning and gets ready for school. He works hard every day, striving for connection and independence, supported by a team of loving therapists.

Speech, OT, PT, ABA,… All of it aimed at empowering him. He runs and swims after school. Exercise is such great medicine. He’s not into TV or movies, really. He spends no time on the internet. He loves listening to music on his iPad. Lately, it’s been Katy Perry and Kanye.

He was diagnosed with autism at age two. He was diagnosed with a severe intellectual disability at nine. A diagnosis of OCD came a little later. This combination of alphabet soup brings a lot of pain and struggle. He’s hurt himself. He’s hurt me. It can be hard.

He loves and is loved. He likes to swing as high as the swing will go. He loves to go to the store. He loves to go to Outback Steakhouse and eat wings. He loves his sister and is sometimes annoyed with her. He likes to hang close. He also likes to be left alone.

He hums and rocks and paces. He laughs. He enjoys looking in the mirror and making goofy faces. He screams loudly over and over and laughs and laughs and laughs. He is authentic. Refreshingly so.

He is not the prom king. He is not represented in research or the media very much. It’s very hard for researchers to include people like him in their work. His sensory challenges, his inability to read or write or speak leave him on the periphery of autistic representation.

I have many autistic friends with various profiles. They are some of my favorite people. Truly. The truth is his severity makes him really different than them. I’m not even certain that the shared diagnosis is accurate. But hey, I’m not a scientist.

But I do think this is such a compelling reason to work really hard to conduct research for people like him. Individualized supports and services can really help human beings like him.

What’s the point of my rambling? Please just know that when you hear the word autism, or you read something by autistic authors representing the autism community, it’s generally not inclusive of people like my son. This needs to change. His experience matters.

He and so many others like him need inclusion, acceptance, and support, particularly from their own community. They desperately need research to provide answers and to improve their quality of life.

The ongoing balance of joy and pain is part of the human experience. But his version of it weighs heavily on him. He deserves peace. Please don’t forget about people like him.

About the Author:

Judith Ursitti is Vice President of Government Affairs for the Council of Autism Service Providers (CASP). A CPA by training, she spent a decade working in tax accounting. She became immersed in the world of autism advocacy when her son, Jack, was diagnosed at age 2. Since his diagnosis, she has worked on the passage, implementation, and enforcement of autism-related legislation nationwide. She worked for Autism Speaks as their director of state government affairs for over a decade. She has served on the Massachusetts Autism Commission, where she co-chaired the Commission’s 14-22/Employment Subcommittee. She also serves as the public policy chair of the National Council on Severe Autism and is the co-founder of the Profound Autism Alliance. She frequently writes about autism advocacy and her experiences parenting a son with profound autism.with autism.

Citation for this article: ​

Ursitti, J. (2022). Jack matters, too: A mother’s perspective on her son’s place in the autism community. Science in Autism Treatment, 19(7).

Posted in ABA

Autism Speech Therapy IEP Goals

By Rose Griffin, Reposted from ABASpeech.org

Setting IEP goals for autistic learners can be incredibly difficult, especially when you’re working with emerging communicators. At the beginning of my career, assessment tools were limited and I found out along the way the goals I set for my students were unclear and hard to measure. Assessment, collaboration and functional goals are all important pieces of the puzzle for setting up your student and the therapy for success. 

Standardized tests are commonly used in the classroom, but they are so tricky because they often do not give us the snapshot of skills we need for autistic learners. Assessment tools I recommend if you have access are the VB-MAPP and the Functional Communication Profile. If you don’t yet have access or need to start on a more basic level, I like to look for specific early learner skills. These are those small basic skills that lead to learning bigger skills and tasks. These are measurable communication skills that start in even really young learners such as labeling, verbal imitation, intraverbal skills like filling in the blank, matching, and group listening.  

When you have brought all the pieces together, it’s time to set the vision for their communication programming. I have 5 questions for you to ask as a part of my practical and systematic approach to establishing functional goals for your autistic learner. 

  • What behavior are we targeting?
  • Is it appropriate for our client?
  • How is this goal specific?
  • Is the goal observable?
  • What does mastery look like?

No matter the skill level, the age, or the context of your therapy practice, this approach will help you consider all the important pieces behind each goal. If you’re a parent, this can help you know what questions to ask your therapist and IEP team to ensure the right goals are being observed and measured for your child. As a part of this episode, I have included a downloadable link for my IEP Goal Bank, be sure to check it out as you work with your team and parents to set specific, actionable IEP goals for your autistic learners.

Learn More in Rose’s Podcast.

About the Author:

Rose Griffin, SLP, BCBA is dedicated to helping SLPs and other professionals provide systematic language instruction with ease. Working with students with autism and other complex communication disorders can be challenging. Rose has dedicated herself to helping by providing professional development and real life examples of what she does in her daily practice. See her podcast, blog, and collaboration opportunities at www.abaspeech.org

Posted in ABA

Understanding the Needs of Black Families of Children with Autism

By: May Chriseline Beaubrun, MEd, BCBA (Brett DiNovi & Associates)

Prior to offering some global suggestions, I wanted to highlight some of the available research that explains of the unique experiences of Black families of children with autism. Although autism does not discriminate (across race, ethnicity, culture, socio-economic status, etc.), diagnosis, access to resources, treatment options, and culturally competent care can vary vastly for Black families with children with autism (Čolić et al., 2021). For example, Black children with intellectual disabilities receive an autism diagnosis an average of six months later than comparable white children (Dryden, 2020). Mandell et al. (2002) found that Black parents on average made three times more visits to doctors to obtain an autism spectrum disorder (ASD) diagnosis than their white counterparts. Dyer (2018) found that Black parents had seen multiple specialists before their children finally received a diagnosis. These setbacks in diagnosing Black children translate into a delay in skill acquisition, reduced access to early intervention, and an increased risk of challenging behaviors (Čolić et al., 2021). Also, an estimated 47 percent of Black autistic children also have an intellectual disability, compared to 27 percent of white children (Dattaro, 2020); and these delays in autism diagnosis may be a contributing factor in the high rate of intellectual disability among Black autistic children in the United States.

Constantino et al. (2020) examined the experiences of Black families affected by ASD in the United States. The researchers found that Black families were concerned about a child’s development, language, or behavior. The study consisted of interviews of 584 parents of Black children with autism. The authors compiled timelines of the Black families’ experiences, including the developmental outcomes of the autistic children and their siblings. The following sections describe the two most important findings:

  • Timeline To Diagnosis: The authors found a three-year delay in diagnosis. The parents first noted concerns about their child’s development around 23 months of age; told a professional six months later; and did not receive an autism diagnosis until their child was over 5 years old.
  • Timeline to Treatment: More than a third of the families reported long wait times to see a professional; 14 percent made at least six visits to specialists before their child was diagnosed. Nearly a third said that a lack of available professionals contributed to the diagnostic delay.
  • Additional Barriers: More critical than the timing of diagnosis is educating Black families about the signs of ASD. This means that due to the lack of educational information and programs for Black parents in their community, they had to learn about ASD by themselves, very often through the internet (Burkett et al., 2015; Lovelace et al., 2018). The internet is useful for accessing quick information, such as directions, office hours, etc., but can be dangerous when researching treatment options (see this article for more information). Additionally, the disparities continue beyond the time of diagnosis to access to intervention services (Constantino et al., 2020). For example, in the Čolić et al. (2021) article, Black parents reported that practitioners would assume that they did not have private insurance. When assuming someone does not have insurance, they may not be offered the benefits of treatment options that are available.. Also, as reported in Čolić et al. (2021), community-based instruction was often not offered in the belief that their neighborhood was dangerous and violent. Beyond getting a diagnosis, these confounding variables continue to impact Black families’ ability to access services.
  • Intellectual Disability Disproportionality – Disproportionality refers to a situation in which a particular group (e.g., racial, ethnic, etc.) are represented at a higher or lower percentage than their percentage in the general population. Although the diagnostic prevalence of autism is approximately the same across races (Mandell et al., 2009), there is a disproportionality of Black children who have a diagnosis of autism and have an intellectual disability. Similar to the findings of Dattaro (2020), the U.S. Centers for Disease Control and Prevention, show that 22% of white children with autism also have an intellectual disability but among African American children, the rate of intellectual disability in those with autism is over 44% (Dryden, 2020).
  • Poverty – Poverty which disproportionately affects Black families in the U.S, is associated with worse cognitive outcomes (Constantino, 2020). However, there are no links between the autistic children’s intelligence quotient (IQ) and their family’s income or parents’ education, meaning the increased prevalence of intellectual disability among Black autistic children cannot be attributed to poverty (Sohn, 2020).
  • Quality of Treatment: In the Magaña, Parish, and Son (2015) article, data from the 2005-2006 and 2009-2010 National Survey of Children with Special Health Care Needs were analyzed. The results indicated that racial and ethnic disparities in the quality of provider interactions were significant in both the 2005-2006 and 2009-2010 surveys, and were found to be unchanged over time. More so, these racial and ethnic disparities in healthcare quality were found to be unchanged over time. Black families were less likely than white and Latino families to feel that their provider helped them feel like a partner. They were also less likely to feel that the provider spent enough time with them; that the provider was sensitive to their family’s values; and that the provider listened to them. In my opinion, this is still a relevant issue and remains to be unchanged.

I hope I was successful sharing some of the recent research that shines a light on the myriad challenges facing Black families. I would like to now turn our attention to the final part of your question: how can myself and my colleagues better meet the needs of Black families I serve? Čolić et al (2021) identify four main areas where ABA practitioners should be especially sensitive to move towards culturally responsive ABA practice (a) build knowledge about Black cultural values, (b) show care and strengthen partnerships, (c) create culturally relevant interventions, and (d) be aware of one’s own prejudice and cultural values.

  • Build Knowledge about Black Cultural Values: During the initial intake and throughout the treatment, ABA practitioners, like yourself, can learn about the Black families’ culture, such as family dynamics, religious and spiritual beliefs, self-care, etc. and incorporate these considerations into treatment planning. Families should be included in the process which in term will lead to improved outcomes and program efficacy (Mathur & Rodriguez, 2021).
  • Show Care and Strengthen Partnerships: ABA practitioners must recognize the potential barriers Black families may have had to overcome prior to even requesting and accessing your services. Training on cultural diversity and cultural humility is needed to provide culturally responsive services. The families should feel comfortable advocating for changes to programs without feeling judged (Mathur & Rodriguez, 2021).
  • Create Culturally Relevant Interventions: When developing and implementing treatment goals, ABA practitioners should increase cultural humility. For example, when creating materials such as icons and pictures for communication, rule cards, visual cues, etc. the skin tone should represent that of the client, including a Black individual. When creating classroom rules and expectations, consider culturally responsive behavior management so that all students with equitable opportunities for learning. For example, use proactive language that is clear and reflects the student and the family voice.
  • Be Aware of One’s Own Prejudice and Cultural Values: ABA practitioners should recognize the impact that implicit bias and racism have on the efficacy and efficiency of behavioral analytic support services (Mathur & Rodriguez, 2021). Training in cultural humility should also include ABA practitioners recognizing their own implicit bias. Fong et al. (2016) illustrated how assumptions based on culture can impact a behavior analyst’s effectiveness with families of diverse backgrounds. Rather than make assumpations, seek sonculatation and supervision as needed. Treating one black family makes a practioner experienced in treating with one black family. For example, using a teaching set of community helpers who are all white males contributes to white supremacy.

Addressing the issues in the timing of diagnosis and the quality and quantity of treatment may help resolve disproportionately of Black children who have a diagnosis of autism and have an intellectual disability. I remain concerned about the implicit bias of providers that goes unchallenged, and that Black families will continue to feel unheard and not receive the same type of treatment as their white and Latino counterparts. As a BCBA, I am advocating for culturally responsive ABA practice.

References

Burkett, K., Morris, E., Manning-Courtney, P., Anthony, J., & Shambley-Ebron, D. (2015). African American families on autism diagnosis and treatment: The influence of culture. Journal of Autism and Developmental Disorders, 45(10), 3244–3254. https://doi.org/10.1007/s10803-015-2482-x.

Constantino, J. N., Abbacchi, A. M., Saulnier, C., Klaiman, C., Mandell, D. S., Zhang, Y., … & Geschwind, D. H. (2020). Timing of the diagnosis of autism in African American children. Pediatrics146(3).

Dattaro, L. (2020, August 24). Diagnosis timeline drags for Black autistic children. Spectrum News. https://www.spectrumnews.org/news/diagnosis-timeline-drags-for-black-autistic-children/

Dryden, J. (2020, August 23). African American children with autism experience long delays in diagnosis. Washington University School of Medicine in St. Louis https://medicine.wustl.edu/news/african-american-children-with-autism-experience-long-delays-in-diagnosis/

Fong, E. H., Catagnus, R. M., Brodhead, M. T., Quigley, S., & Field, S. (2016). Developing the cultural awareness skills of behavior analysts. Behavior Analysis in Practice, 9(1), 84-94. https://doi.org/10.1007/s40617-016-0111-6.

Lovelace, T. S., Tamayo, S., & Robertson, R. E. (2018). Experiences of African American mothers of sons with autism spectrum disorder: Lessons for improving service delivery. Education and Training in Autism and Developmental Disabilities, 53(1), 3-16.

Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., Giarelli, E., Morrier, M. J., Nicholas, J. S., Pinto-Martin, J. A., Shattuck, P. T., Thomas, K. C., Yeargin-Allsopp, M., & Kirby, R. S. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health99(3), 493-498. https://doi.org/10.2105/AJPH.2007.131243

Magaña, S., Parish, S. L., & Son, E. (2015). Have racial and ethnic disparities in the quality of health care relationships changed for children with developmental disabilities and ASD?. American Journal on Intellectual and Developmental Disabilities120(6), 504-513.

Mathur, S. K., & Rodriguez, K. A. (2021). Cultural Responsiveness Curriculum for behavior analysts: A meaningful step toward social justice. Behavior Analysis in Practice, 1-9.

Sohn, E. (2020, April 15). The blurred line between autism and intellectual disability. Spectrum News. https://www.spectrumnews.org/features/deep-dive/the-blurred-line-between-autism-and-intellectual- disability

Citation for this article:

Beaubrun, M (2022). Clinical Corner: Understanding the needs of Black families of children with autism. Science in Autism Treatment, 19(4)

Author Bio: May Chriseline Beaubrun has been a Board Certified Behavior Analyst for over 10 years. She is currently the Director of Diversity & Training at Brett DiNovi & Associates. She has worked with children and adults with various cognitive, developmental, and physical disabilities in a variety of settings (e.g., clinic, hospital, home, school). She has completed program evaluations; developed skill acquisition programs to teach academic areas, cognitive functioning, social skills, language and communication, and adaptive skills; provided parent training; conducted functional behavior assessments (FBA); developed Behavior Intervention Plans (BIP), program evaluations and provided staff training to various levels of professionals. May has presented at the annual Autism New Jersey convention (formerly Center for Outreach and Services for the Autism Community) as well as Association for Behavior Analysis International, New Jersey Association for Behavior Analysis, and California Association for Behavior Analysis.  May also was an adjunct professor at Philadelphia College of Osteopathic Medicine. May contributed a chapter to the text, A Scientific Framework for Compassion and Social Justice, on behavior analysis and urban planning. May’s areas of interest include cultural responsiveness and social justice. 

Posted in ABA

Back to School

By: Dana Reinecke, PhD, BCBA-D

Hey, it’s still the middle of Summer!  Why are we talking about back to school already?  Put down that pumpkin spice and get in the pool!

But seriously . . . like it or not, back to school is coming.  Some students look forward to returning to school with anticipation, and some with dread.  Some students who receive special education services attend school year-round.  Even for these students, back-to-school may be an adjustment because the summer session may be characterized by shorter days, more recreational activities, different staff, and end a good few weeks before school restarts for the academic year.

For all children, it’s a good idea to start anticipating going back to school with some time for adjustment and planning.  For students with special needs, this is especially important, as changes can be challenging.  Here are some ideas for helping to ease that transition:

  • Talk about school and highlight the fun and exciting things they will get to do. Remember what was most reinforcing at school for your child last year, and help them to remember that, too.  Did they love PE or music or art?  Are they especially talented in math or writing?  Do they have certain friends they like to play with at recess?  Is the cafeteria pizza their absolute favorite?  Is the walk to and from school something they enjoy? 
  • Provide information about the coming year as you are able to.  If your child will be starting school in a new building, make arrangements to visit the building a few times over the summer.  Most schools will have these visit days or orientations arranged for all students, but you may be able to request an extra visit or two for a child who would benefit from some additional exposure. 
  • When you make those visits, take some pictures and use them to develop a book or poster with your child that they can refer to as the summer progresses.  Don’t just refer to the pictures if your child expresses anxiety or disappointment about school starting, but as a regular activity to build familiarity and (hopefully) anticipation.
  • Pay attention to your family sleep schedule.  Sometimes the summer schedule can get a little loose, which may be great for everyone.  We can all benefit from sleeping on our own natural schedule, but if that natural schedule departs in a big way from what will be needed during the school year you will want to start to gradually shift it back.  To make the change less abrupt, in the weeks before school starts again, start to wake your child a bit earlier every day and get them to bed a bit earlier each night. 
  • If your child is always an early waker, you might want to take advantage of a more relaxed summer schedule to focus on building independence in the morning routines.  During the busy school year it can be challenging to take the time to let your child learn to do things independently, but summer is a great time to let them dress themselves, brush their own hair, and do other self-care tasks with your supervision.
  • Consider the routines that make your school-year mornings work well, and continue to practice them during less-stressful summer mornings.  Keeping a reasonably structured routine throughout the summer, or reintroducing it a few weeks before school starts, can help everyone to adjust to the return to school more smoothly.
  • If possible, connect with parents of some of your child’s classmates and see if you can get them together over the summer.  If social skills are difficult for your child, keep these playdates short and sweet.  Try meeting up in enjoyable locations like the park or beach, and letting kids parallel play so that they are used to seeing each other.  Pair these little gatherings with favorite snacks, fun activities that can be done together or alone (bubbles, sidewalk chalk, play-doh, jumping through a sprinkler), and remind the children that they will be seeing each other and playing more together when school starts.
  • For some children, school represents a return to certain demands that may not be present during the summer.  If your child has sensitivities around clothing or food, you may be able to accommodate these more when they are not in school.  While this is absolutely fine to do, it can be difficult if they need to abruptly shift back to different expectations when school starts again.  Children who love to stay in their pajamas or bathing suits might be unhappy about school clothes, or those who get used to a hot, home-cooked lunch might not appreciate going back to sandwiches.  Keeping some of these expectations part of the summer rotation can ease that stress.  To whatever extent it feels comfortable and fair for your child and your family, continued exposure to school-year conventions are going to make the return to school easier for everyone.

We can all remember that going back to school is both exciting and challenging for everyone.  In addition to cheering your child on as they return to a new school year and possible new challenges and triumphs, it’s equally important to be empathetic about disappointment that summer vacation is ending, and anxieties about upcoming changes.  Compassionately addressing your child’s reactions to returning to school, whatever they may be, includes listening, understanding, and helping.  What this looks like will be different for each child, but as a parent you have the knowledge of your unique child’s needs and strengths to provide compassionate support.


About the Author:

Dana Reinecke, Ph.D., BCBA-D is a New York State Licensed Psychologist and Licensed Behavior Analyst (LBA).   Dana is an Assistant Program Director in the Applied Behavior Analysis department at Capella University, overseeing the PhD in Behavior Analysis program and mentoring doctoral learners.  She is also co-owner of SupervisorABA, an online platform for BACB supervision curriculum and documentation.  Dana has provided training and consultation to school districts, private schools, agencies, and families for individuals with disabilities. She has published her research in peer-reviewed journals, written chapters in published books, and co-edited books on ABA and autism.  Current areas of research include use of technology to support students with and without disabilities, self-management training of college students with disabilities, and online teaching strategies for effective college and graduate education.  Dana is a Past President of the New York State Association for Behavior Analysis (NYSABA).

Posted in ABA