Its common, its common, its common.



That is the first thing that needs to be said to any caregiver who ended up here while researching "picky eater" + Autism. You are not the only one experiencing this.

Autistic individuals (because this is not just an issue for children) exhibit higher rates of food refusal, and a more limited food repertoire, when compared to typically developing individuals (Bandini et al, 2010).

Examples? Sure.


Across my clients, I regularly see issues with:

Rigidity around meals (where to sit at the table, what plate to eat off, which spoon to use, must have the tablet in order to eat)

Food refusal challenging behavior (throwing plates, flinging cups to the floor, spitting food out, tantrums, pouring liquids out onto the floor)

Highly selective food intake (daily diet consists of less than 10 foods, likes chicken nuggets but only from a specific fast food place, will only take specific liquid from a specific sippy cup or bottle)


To define the term, a picky eater can be described as regularly refusing foods, or consistently only eating the same foods with little to no variation permitted.

Many parents of toddlers deal with a picky eating phase at some point or another, and often the child outgrows it.

So, what is the critical determining factor when it comes to Autism that tips the scale from someone who is just "picky" to a serious health problem and concern? Usually, it is a combination of variables that must be examined and weighed:

How old is the individual? If out of the toddler phase, how frequently is this issue happening (weekly? daily? or only at holiday meals?)

Does food refusal occur with challenging or aggressive behavior?

Is this impacting school/daycare, or the ability to go into community locations?

Will the individual skip several consecutive meals (refuse to eat across more than one day)?

Is this impacting the individual's weight, organs, toileting/digestion, skin, hair, or nutrition? Is your doctor concerned?


The key factor for seeking out intervention for this issue is when the food selectivity is causing harm to the individual. When any specific behavior impacts the health/body of the person exhibiting it, that is clinically referred to as a "self-injurious" behavior. Self-injurious behaviors should not be ignored, and often require intervention and treatment.

So what to do? 

 It may be helpful to reframe the way we view picky eaters. Sometimes families can view this behavior as their child willfully choosing to make meals a dreadful adventure. Choosing to be difficult and fling plates across the room in order to cause chaos. However, challenging behaviors often occur for complex or multifaceted reasons. Some Autistics use the term "sensory eater" and not "picky eater" to describe this issue, and explain it like this:  

"Picky eaters don’t like a variety of foods, much like the sensory eater. However, when picky eaters try new foods, it doesn’t cause a sensory overload....There is a sensitivity to textures, where children can only handle one texture, such as smooth, pureed foods. In this case, they might be able to eat yogurt, however, hand them a bag of chips or a slice of turkey and they immediately begin to gag" (www.researchautism.org).


If a specific food texture, smell, sight, or tactile experience is causing significant distress, if there are tooth or gum issues making eating painful or uncomfortable, if the individual has trouble swallowing, or if unknown allergies are present, making digestion painful or uncomfortable, doesn't it make sense for the individual to refuse a food (or eventually, any food that looks like THAT food) or exhibit excessive selectivity? Now, imagine the individual has no means to communicate how food makes them feel. Doesn't it make sense that they may cry, spit, hit or punch, or fling a plate onto the floor? 


When seeking out Feeding Intervention (which is a clinical specialty), it is important to first obtain medical rule out. This means first speaking with your doctor to discuss the issue, and see if the individual's health has been impacted. The doctor may also be able to make a referral to a qualified specialist.

Not every professional will be trained in feeding interventions, so this isn't as simple as just asking the current therapist to also target feeding. I see families do that a lot, without also asking about the therapist's qualifications to address this issue. 

It probably doesn't need to be said, but feeding challenges can have serious health complications and you don't want to gamble on unproven treatments, untrained professionals, or questionable practices. Not only could they harm your child, they could worsen/ingrain the problem even further.

SLPs, BCBAs, OTs, Healthcare professionals, and Multi-Disciplinary clinics or facilities, can all incorporate feeding intervention into therapy goals. The Children's Healthcare of Atlanta recommends the following step-by-step process for initiating feeding intervention/feeding therapy:

  • Medical Screening
  • Behavioral Evaluation
  • Nutrition Assessment
  • Oral-Motor Skills Assessment


 Remember, before seeking out therapy or treatment talk to your doctor first. Also, any feeding intervention that occurs on-site will need a caregiver training portion where the parents are taught how to implement the procedure at home/in the community.



*Further Reading:

Autism Feeding Issues

Kinnaird, E., Norton, C., Pimblett, C., Stewart, C., & Tchanturia, K. (2019). Eating as an autistic adult: An exploratory qualitative study. 

Bandini LG, Anderson SE, Curtin C, Cermak S, Evans EW, Scampini R, Maslin M, Must A. (2010). Food selectivity in children with autism spectrum disorders and typically developing children. 

Autism & Picky Eating

Problem Eating

Assessment & Treatment of Pediatric Feeding Disorders

Feeding Problems in Children with Autism

 



Today's quote is from...me! From a recent podcast interview with Dr. Mary Barbera:

"Good ABA start with parents. So, for any parent or caregiver, if you are trying to determine a quality place for your child to receive ABA services, you really have to start by looking at what's the goal of intervention. I really feel like that's like the foundational first step, because if you are speaking with a company or a provider and they're talking about: 'We're going to fix this, we're going to correct blank, we're going to make your child more.../ We're going to remove stigma',  and other words like that, all of those words are getting at normalization. Which should not be the goal. The goal should not be to magically make it as if your child were born differently. The goal should be to give the client as many supports as needed to contact the things they to need to contact in life. For example, letting people know when you want food, using the bathroom,  attending school, etc., because in certain parts of the world children with disabilities don't attend school. So, we really have to look at what this means for the client and removing barriers to being able to do different things in their life. And then we address each barrier one by one. That should be the goal of ABA. 'We're going to help your child do _____/We're going to make it easier for your child to do ____". That should be the kind of language that is being said by a provider, or by a company.  It should be very, very concerning when you are contacting an ABA provider saying you need help and that provider is instead telling you, 'Here's what we're going to do', and they're not listening to you and they're not taking your input and they're just saying, 'Oh, yeah, yeah, we know what to do. We know autistic kids. Here's the standard protocol. Here's the strategy'. No, that is not how that should work. Absolutely not."



Good ABA services are a must for some people. Yes, people. Not just small children.

It can be a must for disabilities beyond Autism.

It can be a must inside of the classroom.

It can be a must in adult day programs and residential settings.

It can be a must when harmful, destructive, violent problem behaviors are serving as a barrier to least restrictive settings and placements.


ABA intervention at its core, is about teaching new skills and removing barriers that get in the way of learning and being successful in life. NOT a push for normalization.

Quality intervention that is generalized across caregivers and settings, can bring about amazing long-term success and developmental gains.


Take a listen HERE for more tips on distinguishing between good & bad ABA providers.







 

"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).


*More resources below:

Happy or Therapy?

The Easy Way vs The Hard Way

Evidence Based ASD Interventions 

Effective ASD Interventions 



 

"If you want to see competence, it helps if you look for it"

Douglas Biklen




To presume competence is very important considering the work that many ABA professionals do with highly vulnerable populations who may be unable to reliably communicate/self-advocate and could also have high support needs on a daily basis.

It is important to always place a high value on dignity and self-determination, to whatever degree is possible for the individual (your child, student, client, etc.). What do YOU want to eat (and absolutely NOT want to eat)? Where do YOU want to sit? Is that shirt comfortable? Do you like this school? Are you feeling okay? Are you hungry...tired....ill...bored....sad?  

It may not be possible for the individual to answer questions like this, but to presume competence is to assume that the individual absolutely has an opinion on these matters, even if they are currently unable to communicate that opinion to anyone. Make sense?


Here are more tips on how professionals/teachers/caregivers can work toward intentionally presuming competence:


- Always ask before giving assistance and let the person tell you what you may do to be helpful (for those who cannot tell you, read body language/cues for removal of assent).

- Treat adults as adults. Use a typical tone of voice, just as if speaking with a friend or co-worker. 

- In general do not assume a person can’t read, but also don’t assume they can.

- Speak to the person directly, not the support person, parent, or companion. 

- Don’t assume a person who has limited or no speech cannot understand what is being said around them, or to them. People usually understand more than they can express. 

- Never pretend you understand what is said when you don’t! Ask the person to tell you again what was said. Repeat what you understand. 

- Do not try to finish a person’s sentence, or cut them off. Listen until they have finished talking, even if you think you know what they might say. 

- You might not be able to see someone’s disability. All disabilities are not visible. There are many disabilities that are hidden within a person. 

- Avoid using stereotypes in your thinking. We all have different personalities and our own ways of doing things. To find out what a person prefers, ask them directly (when possible). 

- Offer compliments but avoid giving a lot of praise when people with disabilities do typical things. 

- Avoid speaking for others. Encourage a person to speak on their own behalf. If you must restate something, be careful not to change the original meaning.

- Be mindful of your body language, tone of voice, and other gestures that may influence a person’s decision/desire to please those in authority. 

- A support person should be low-key, almost “invisible” to others. Don’t “over-support.” 

- Let a person make their own decisions. Don’t take over and make decisions for them. It can be difficult for some with disabilities to make quick decisions. Be patient and allow the person to take their time. 

- Focus on what a person CAN do, instead of hyperfocusing on deficits. 

- Find ways to include a person in a conversation. Do not talk about the person to others as if they’re not there/not in the room.



Link to Reference: Curriculum for Self-Advocates

 



When it comes to the treatment or reduction of challenging, disruptive, dangerous problem behaviors, regardless of the setting or populations served, this will often be referred to as “Crisis Intervention”.

This concept is far broader than ABA, as many institutions and facilities will create, monitor, and implement crisis interventions whether anyone on site has received ABA training, credentialing, or licensure, or not (examples: police, schools, daycares, residential settings, prisons, etc.).

Being such a broad topic, that can look about 10,000 different ways depending on the setting and availability of highly trained specialists, it should come as no surprise that crisis behavior scenarios frequently result in injury or even death. If you do some online searches for news stories related to seclusion and restraint, regardless of the setting, you will see what I mean.

This issue is also larger than disability.

Yes, most of the horror stories we see on the news where someone was seriously injured during a restraint DO involve people with disabilities (whether it was known at the time, or not). But in the absence of disability or mental health issues, crisis management can still lead to serious injury or death. That could be for the person(s) responding to the crisis, or to the person(s) having the crisis.

This is a very weighty and complex topic, and I can’t possibly cover everything anyone should know about crisis intervention. However, due to the seriousness of crisis scenarios and the increased risk of harm (again, for the person intervening, the person or having a crisis, or even both of those people), I very much want to share some resources and information about managing behavioral crises.


First, some terms. Here is my favorite definition of a crisis:

A time of intense difficulty, trouble, or danger; a time when a difficult or important decision must be made.

 

During a behavioral crisis, the individual is having intense difficulty or trouble. They are having a hard time (not giving you a hard time). Decisions must be made, not just regarding what to do RIGHT NOW, but in the future, in case this happens again. Which, without the proper supports in place, the crisis event is highly likely to happen again.

Viewing a crisis through this lens takes the responsibility off of the individual having the crisis, and onto the supports in place (or lack thereof). When a crisis event occurs, ask yourself these questions:

1.       1. Does this individual know how to safely de-escalate during a crisis event?

2.       2. If yes, then why are they not using that tool?


Truly individualized and effective de-escalation tools are best understood as the means by which an individual in a crisis state can identify they are approaching a crisis state, select a de-escalation method, implement the method, and lastly evaluate how well the method worked once they are calm again.

Depending on the setting, availability of support help, and the understanding of de-escalation (or lack thereof), this “returning to neutral” process can take minutes, hours, days, or may not occur at all. It may involve a team of people, a caregiver or support person, or happen independently. When it doesn’t occur at all, that typically results in emergency room visits or admittance into an inpatient facility.

I do not know your work setting, the populations you serve, or your job title, but if you are reading this post I have to assume you have either experienced a crisis event with a client/student/etc. or want to be equipped if it should happen.

Right here I have to point out a very common myth, that can be quite dangerous when people believe it: In the field of ABA, clients who exhibit (or have a history of exhibiting) highly violent or dangerous problem behaviors may be classified as exhibiting “severe behavior”. It is a myth that only severe behavior clients can have crisis events. That is not true at all. Clients with non-violent or less disruptive problem behaviors, under the right set of combined circumstances, could have a behavioral crisis. For example, what if their home routine is significantly disrupted, they are ill, dealing with a change of medication, and also recently started puberty? These setting events when combined, could trigger a crisis event. For this reason, it is important for professionals and practitioners to be properly trained and equipped for crisis conditions, far before they are needed.

Now I want to speak specifically to ABA implementers (RBT’s, paraprofessionals, etc.) who work directly with clients: If you are working with clients where you are regularly responding to crisis events or working with clients with a known history of crisis events, you should be following the policies of the physical management training you received. If you have not received any physical management training, then you should not be working with those clients. It is dangerous for you, and dangerous for them.


Again, crisis events could potentially happen at any time, with any client/student/etc. It would be unwise to think “Oh I don’t work with severe behavior individuals, so this doesn’t apply to me”. For ANY of us (disabled or not, mental health issues or not) the right set of circumstances could trigger a crisis event.

If you were in the midst of a crisis event, who would you want helping you? Someone reacting on impulse or instinct, or someone who has been thoroughly and properly trained on safe de-escalation?


So what can be done? Glad you asked.

 There are many, many crisis intervention and de-escalation resources readily available. If you are not in the position to set policy or choose employee trainings, you can still request additional training from your employer and send them recommendations of evidence-based methodologies. You can also always communicate when you feel ill-equipped or prepared to work with a specific student/client/etc. or feel unsafe.

Research shows that in the absence of individualized, evidence- based crisis interventions, individuals will contact injury to self and others (Burke, Hagan-Burke, & Sugai, 2003), receipt of medications with serious side-effects that rarely correct the causes of the behaviors (Frazier et al, 2011), receipt of intrusive, ineffective interventions that are punishment-led (Brown et al, 2008), and increased negative interactions (Lawson & O’Brien, 1994).

 In ‘Effects of Function-Based Crisis Intervention on theSevere Challenging Behavior of Students with Autism ‘, the following procedures are recommended for crisis intervention planning-

Be cognizant of crisis needs and function when designing a behavior plan for students with crisis behaviors, and operationally describe steps to be taken for each phase of escalation. When describing these steps, be aware of the behavioral function. Change the quality of reinforcement delivered between appropriate and inappropriate behavior, and prompt appropriate behavior before providing access to calming activities. Train staff to competence on the intervention strategies (which most often includes role play scenarios during training, not just discussion/lecture). 

 

 


*Recommended Resources (please share!):

 

~Find the number for the mental health crisis/emergency support services in your state, and save it in your cell phone

~For caregivers, if your child is on medication the Physician/Psychiatrist will likely have an after-hours or emergency help desk. Save that number in your cell phone


https://crisisintervention.com/

https://www.pcmasolutions.com/

https://www.marcus.org/autism-training/crisis-prevention-program

https://qbs.com/safety-care/

Crisis Intervention Strategies

Prevention of Crisis Behavior

Crisis Help in Georgia

ASD & Crisis Behaviors

Handbook of Crisis Intervention and Developmental Disabilities

ASD & De-Escalation 

Crisis Prevention Institute 

ASD & Stages of Behavioral Escalation

Nationally Certified Crisis Training Providers

 

"...They discovered that many of the challenges they face daily are not "symptoms" of their Autism, but hardships imposed by a society that refuses to make basic accommodations for people with cognitive disabilities as it does for people with physical disabilities such as blindness and deafness"

"There seemed to be so little information available about raising kids on the spectrum that didn't view Autism as the principal problem to be surmounted, rather than tackling the practical barriers that stood in the way of fulfilling their potential"

'NeuroTribes' by Steve Silberman




Autism is a disability, and a gift. It is a vast spectrum, where the challenges and unique talents are dispersed unevenly, uniquely, and entirely heterogeneously from one person to the next.

For this very reason, it can be insanely difficult to find appropriate resources, therapies/interventions, medication protocols, schools & college programs, or job placements "for" Autistics. What works for one Autistic, will be 100% nonhelpful for a different Autistic. An amazing private school program that serves highly verbal and autonomous Autistic children, would likely be a terrible fit for Autistic children who do not communicate by speaking, are not toilet trained, and engage in self-harming behaviors. Oh, and also the level of support that is successful THIS year, could be too much or not enough come next year.

This is not paint-by-numbers. There is no magic solution.

We must do the hard work, every day, to provide compassionate, individualized, and dignity respecting care and support to the Autistic children, teens, and adults in our life.

No shortcuts.

 Recommended Reading: What is the ABA Reform Movement (ABA Haters Pt. II)?


 


You may be a caregiver, professional, teacher, or someone simply interested in ABA as you read this.

 

Regardless of how connected you are to the ABA community, you might not be aware of ABA Reform, what it is, why it is needed, and changes that are being made, right now, in both large and small ways.

 

In case you are unaware, let me walk you through the ongoing conversation a bit. It will help shed some light on why "Trauma Informed ABA" is a thing, and why it’s a much-needed thing:

 

Both within and outside of the professional ABA community, there are people who want to see ABA adapt, listen more to the very populations we serve, reflect on our past (and sometimes current) practices, grow, learn, and in general: Evolve. The way to bring about this change does differ, with some people wanting ABA therapy to end/be abolished, some people wanting to see wide, sweeping change at the top levels of the field, and other people believing that practitioners doing their job differently everyday, in small and impactful ways is how we accomplish change. Different people have different perspectives, so it makes perfect sense to me that although many people are talking about changing and improving ABA therapy, there is little consensus on just how to do that.

 

So how does this connect to trauma informed ABA?

 

Trauma Informed ABA can be operationally defined as recognizing that someone's history, lived experience through their own eyes, and mistreatment or microaggressions has a direct impact on how they behave. It is viewing someone through the context of who they are in the world, and how they self-identify OR are identified or labeled by others (Source). For example, a history of abuse, crisis event, significant illness or injury, neglect, mistreatment, prejudice, misjudgment, or social rejection, are all traumatic events that should influence how any intervention or therapy is applied and carried out.

 

In a nutshell, trauma informed ABA is an intentional decision to provide services and care in a highly personalized, unique, person-respecting manner, and to recognize that we are all products of our environment. For good, or for bad.

 

If you are an ABA professional, you may be thinking "Well....obviously. I already do this in my practice". I'd invite you to dig a little deeper and consider some of the strategies and techniques you implement through the lens of your client (put yourself in their shoes).

For example, I've worked with many young children who have been kicked out/asked to leave multiple daycares or preschool settings before I ever met them. How did those experiences affect them? What must it have felt like to be in a setting where you are excluded, not wanted, misjudged, and your needs weren't met? What kind of interventions and consequences to problem behavior were attempted before the facility realized they could not meet the child's needs? How did those failed attempts at consequences make that child feel? But here is the problem: for most of the clients I serve, I cannot just ask them these questions. Even if they communicate by speaking, they don't always have the vocabulary, cognitive understanding, or desire/motivation to answer these kind of questions. And of course, asking someone's caregiver or parent to speak on the client’s traumatic experience is not quite the same as asking the person who lived through it. Is it starting to sink in now??

 

As ABA professionals, we must approach each client uniquely and specifically, meaning we make little assumption from one client to the next. We modify and tailor intervention to what the client needs and prefers, not what we think is best or should happen. We collaborate with caregivers, parents, and other professionals working with that client, and we design intervention in a way that respects client dignity, autonomy, choice, and again: preferences. If my client hates washing dishes, is it unethical to utilize reinforcement to teach them this skill because their parents want them to wash dishes? If my client has a meltdown in a public space, should I immediately take them out to respect their dignity in that moment or is that "reinforcing escape behaviors"? If my client is non-compliant, is physical prompting necessary? How do I respond during a session when my client revokes their assent? What about a client who is older or able to communicate, and tells me they don’t want to receive ABA therapy. How should I respond? How do I select treatment goals for a client who has no means to communicate? How do I make sure I am embedding client choice? Is it ethical to create a Behavior Plan for stereotypy? What about teaching play skills? Is this ethical or not?

 

These are not easy questions to answer, which is the whole point.

For client A who has a very specific background, I may answer these questions one way. But then with client B who has a history of trauma, school refusal/aversion to authority figures, or past experiences with a low-quality ABA provider, my answers could be completely different. And that is how this should work, with the intervention package looking quite different from one person to the next. That’s a GOOD thing.

 If the care being provided is individualized, focused on what is best for that individual (and not just their caregivers/parents), and trauma informed, then the intervention will ultimately be far more helpful, impactful, and SAFER/less harmful to the individual receiving therapy services.

 

There's tons of valuable information, research, and resources about trauma informed ABA (here is a massive list of resources). I urge any ABA professional reading this to dig into this methodology and embed it into the way you do your job. Listen to Autistics who speak about their life experiences, meltdowns, sensory issues, and their daily challenges. I have worked with many Autistic RBTs or BCBAs, and learned so much from them talking about their own experiences as a child, in school, in therapy, as an adult, etc.

 In order to gain new perspective, you have to be willing to be wrong. Be willing to say "Wow, I didn't know that", “I don’t know/I need to research that further”, or "I never thought it about that way". This how we learn.

 

There is a movement happening all around us, and while it may have many differing voices, that does not negate the need for change. We CAN do better at how we help our clients, how we listen to our clients (especially those who do not communicate by speaking), and how we serve the disabled community.


*Check out these great resources to learn more:


Trauma Informed Behaviorism 

Trauma Informed Care for Behavior Analysts 

'What is Trauma Informed ABA?'

A Perspective on Today's ABA (Dr Hanley)

ABA Provider Listening Pledge (video)

The Compatibility of ABA & Trauma Informed Practice

Examining Challenging Behaviors from a Trauma Lens

Parent perspective on the importance of listening to Autistic voices





I already have a post with tips for evaluating the quality of your in-home ABA provider.


But what about those families who want clinic/center (these words are pretty interchangeable, so for this post I will just use "center-based ABA") based services? What questions should families ask during intake? What are some potential red flags? Should parents directly observe sessions or is that too distracting?


Keep reading, and hopefully I can help answer these types of questions.

As ABA therapy services continue to grow and expand (fueled largely by increased funding, which leads directly to increased providers/companies) center based treatment is becoming more prevalent.

When I was first certified as a BCBA, there were less than 5 center options in my local area. Today, I would estimate that number to be over 100. If you are reading this and you live in a fairly urban or metropolitan area, then you likely know of at least a handful of ABA centers in your area.


Parents contact me all the time with so many questions about center based treatment. When it comes to ABA therapy, the experience can be quite different from other therapies. 

Many families have experienced center based treatment via Speech Therapy, Physical Therapy, Counseling or other Mental Health services, or Occupational Therapy. But these are usually 30 to 50 minute appointments that occur once a week. ABA therapy is often highly intensive, and sessions can occur daily. There is also (usually) a focus on setting up a day that resembles a preschool experience, including large group instruction, recess, school readiness instruction, toilet training, lunch/meals eaten as a group, Art or Music, etc. It is a busy, very planned out, full day experience.

Centers differ as far as policy and procedure, so there will be variability from one company to the next regarding how parents are included in the intervention process. There will also be variability related to state laws, funder requirements, or if the center is part of a chain (usually owned by massive private equity firms) or a small center with an owner on-site. So just know that some of the suggestions below may be more or less applicable to your situation.


First, let's answer a few questions-


"Which is best, home or center based ABA?" - There is no concrete answer to this. It depends on your child, their needs, the priority of intervention, etc. Obviously, if peer/social interaction is a priority then center based services have the advantage of peers being on-site. However, many parents have concerns that their children will pick up new challenging or inappropriate behaviors if they spend their whole day with other disabled children. So as you can, there are pros and cons to center -based treatment, just like with home -based treatment.

"Why do we have to agree to block scheduling?" - A block schedule is when the center only offers a few options for scheduling. For example: 'Part time - 8am-12pm, Full time 8am-5pm'. This usually has to do with consistency in scheduling staff, and the major disruptions to other clients that can be caused by changing staff schedules. For the most part, centers do not have the same scheduling flexibility as in-home treatment. If your family needs a more flexible, adaptable schedule that can change from time to time, then you probably would not be a good fit for center based treatment.

"My spouse and I both work full-time and center based is easier because it has the same schedule as day care/preschool" - Yes, many parents prefer center based intervention due to the schedule (child is there all day). However, ABA is not respite. It is important to look beyond the ease of the schedule, and to determine if a center based setting is the best fit for your child and their needs. Also, 2 working parents can make parent involvement very difficult when it comes to center based intervention. Which brings me to the next commonly asked question........

"How does parent training/caregiver support happen at a center if both parents work full-time?" - This can be challenging. Usually, for center based intervention at least one parent will meet with the case BCBA on-site, each month, to go over client progress. If neither parent can do this on-site, this meeting could be held via Telehealth. If that still is not a feasible option, then it is likely center based intervention isn't a good fit. I would suggest home based services that occur in the evening hours or on the weekend, so parents can be actively involved with treatment. 


Now, let's talk about indicators of quality-

High-quality center based ABA providers will look like a high-quality home based provider for the most part. There should be credentialed individuals (e.g. RBT or BCaBA) working directly with your child and overseen by a BCBA, there should be an initial assessment conducted to create an individualized treatment plan, there should be ongoing monitoring of the intervention and data analysis, and there should be clear, transparent billing, supervision, and staff training policy and procedures. 

As a parent, you should know who is working with your child on a weekly basis (this may vary, due to staff vacation, illness, or changes, but you should know when it varies). You should know what goals are being targeted with your child, and how they are being taught (most parents never ask). You should know the Behavior Intervention Plan, or the strategies being used to reduce harmful or inappropriate behaviors. You have the right to watch/view these procedures and be trained on how to implement them at home. The center facility should be clean, appropriately staffed, have both passive and active play areas, have an appropriate person to bathroom ratio, doors and windows should be secured (monitored with alarms, locks, etc.) to keep clients safe, there should be ample toys and materials, etc. Not only should you be able to tour the center as a parent, but you should be able to see where your child receives 1:1 intervention and to examine the therapy space.


And of course, I cannot leave out potential red flags. Occurrence of any of the items below should raise your concerns, and lead to an action step (Speak with the facility Director or Manager, talk to your case BCBA, and if necessary, remove your child from the program)- 

  • The absence of any of the criteria described for a high-quality ABA center
  • Staff/Director or Manager are consistently angry, upset, or otherwise seem miserable. Do you want to work with people who are miserable every day? Then why would your child want to?
  • Poor communication/No communication, specifically when it comes to billing/invoices/charges, clinical supervision, conflict with the staff, or behavioral strategies used
  • Your child experiences significant regression after starting services at the center
  • Massively high staff turnover. I say "massively high" because ABA as a field is known for high staff turnover. But, if you have been at the center less than 30 days and can't keep track of who is on your child's team---> that is a problem.
  • Lack of outdoor space where clients can play and get fresh air (many centers today are located in business/office spaces that lack outdoor play areas)
  • Lack of toys, materials, or manipulatives for clients to play and explore
  • As a parent, you are pushed to sign on for an amount of treatment hours you are not comfortable with, and do not feel are necessary
  • As a parent, you are never allowed on-site. Yes, there is HIPAA, and client confidentiality, and all sorts of reasons why parents may not be able to just walk in any time, without exception. BUT, the center should have figured out a way to remediate this issue. For example, a discreet meeting area or conference room where BCBA or Director meetings occur, a waiting area where parents can request to meet with their child's RBT or team members, or discreet observation windows where parents can view their child during therapy unobtrusively
  • As a parent, you are pushed to terminate services with other providers to focus only on ABA. Or, you are pushed to terminate services with other providers and swap them out for services offered at the center
  • If you do not know what your child is working on (treatment goals), never received any data, reports, or graphs, or your child is working on things you specifically rejected or said you wanted removed from their treatment plan----> that is a big problem.



*Further Resources:







"Ableism is perhaps the single most important disability-related keyword that exists besides the term 'disability' itself. It represents one of the biggest obstacles that people with disabilities face, and yet the word is not very well-known outside the disability community. If you don’t know this word already, it is a must-have in your vocabulary."

"What is Ableism & How can you be Anti-Ableist?" by Jill Feder




Ableism can be defined as various forms of negative biases and discrimination that people can face because of their actual or presumed disability


It is important to check our own biases, misconceptions, and assumptions when it comes to the individuals we support, teach, train, and work with.

None of us are exempt from this conversation, because even if you may say "Well, I certainly don't have any negative biases or perceptions about Autism", what do you when you confront them at work? Or in the school where you teach? Or if you are raising an Autistic child, hear from your own family members? How do you respond, or DO you respond?


Here are some great examples of ways in which disabled children, adolescents, and adults may face Ableism in their day-to-day life. 

Seeing the problem (awareness), is the 1st step towards standing up to address it or call it out when it happens:

Patronizing language or Infantilizing Autistic adults

"Obsessions/Fixations" instead of "Special Interests"

Person- first language when Identity -first language is preferred

Functioning labels (i.e. low functioning)

Approaching your clients with a "Fix it" mentality, vs a "Support & Assist" mentality

Assuming non-vocal/non-speaking means "cognitive impairment"

Only speaking of Autism as a burden

Over-prescribing therapy or intervention with the goal of Normalization

Teaching "passing" or "masking", instead of person-focused intervention

Talk of "recovery" or a "cure"


Source: Avoiding Ableist language in Autism research

 



Recommended Reading:

VB -MAPP assessment tool

ABLLS-R assessment tool

AFLS assessment tool

The Practical Functional Behavior Assessment


There are many commercial assessment tools out there that are purchased and utilized by ABA practitioners, typically at the BCBA level (BCBAs typically are the ones conducting new client intake). 

Often when I work with supervisees (meaning individuals pursuing BCBA certification) or very new practitioners, they have many questions about Assessment. Such as, which tool to select for which client, pros and cons of each tool, what materials to use (particularly if the employer does not provide assessment kits), differences between assessing a younger child vs a young adult or adult, differences in assessing in the home vs community settings, etc. And of course, varying funder requirements will also influence which assessment tool is selected and even how much time is allowed to conduct an assessment.

In summary, the questions focus on "HOW". How do I pick the best assessment, for this client, in this particular setting, to gain the most helpful information?


Because at the end of the day, that IS the point of assessment: to gain valuable and salient information about the client that will guide programming and determine which goals to prioritize for treatment. 


Putting aside the specific options for a moment, the key characteristics of a quality client assessment will include the following: 

  • A variety of methods across both direct and indirect observation, interviews, checklists, tests, and/or direct skill probing to identify and define targets for intervention 
  • The priorities and areas of concern of the client, client caregiver/parents, or other caregivers close to the client
  • Record review of pertinent files or reports
  • Selection & measurement of goals
  • Problem behavior identification, measurement, and assessment

The assessment process is an absolute necessity to beginning treatment with any client. Regardless of age, setting, areas of concern, treatment model, etc., without proper assessment the intervention isn't likely to be effective or achieve true long-lasting change.

More important than the specific tool to select, is the ability to conceptualize treatment and prioritize goals. Assessment tools do have characteristics in common, and a big one is the assessor must already have an understanding and knowledge of capturing client attention, delivering the SD, prompting and prompt fading, data measurement, and conducting a thorough interview to gather important information about client functioning. For this reason, although some organizations will assign non-BCBAs to conduct assessments it is critical that the assessor (regardless of certification level) have the appropriate skillset and training to administer an assessment.

It is also important to recognize that the client's needs should guide assessment tool selection, and not just the tools that are available, the BCBA preference of tool, or other non-critical decision factors. Many organizations may only have 1 or 2 assessment tool options, which would then mean the clients served would need to be narrowed to the ones most appropriate for the assessment tools (e.g. if an organization does not have an appropriate assessment tool for early intervention, then early intervention clients should not be admitted). 

Lastly, let's not forget that completing a thorough assessment is meaningless if it isn't then connected to goal setting. What was the point of identifying barriers to learning, maladaptive behaviors, and skill deficits impeding daily functioning, if these goals never show up in the treatment plan? Or are never addressed in therapy? It is possible to overfocus on the assessment tool to the point that important, necessary daily life skills get neglected. For example: assuming that because a client has "filled" an assessment grid, they are now done with therapy/have no further need of intervention. 

If the assessment (when I use the word "assessment", I mean a combination of record review, interview, observation, and direct skill probing) identifies Gross Motor Skills, Manding, and Vocal Imitation as areas of significant concern, then programming for those areas should be reflected in the treatment plan. The absence of this, is often seen in "cookie-cutter interventions". Cookie-Cutter interventions can be recognized by their disconnect from the individual priorities or high need areas, and by their generic replication across multiple clients. While it is true that many clients with no prior intervention will present similarly (may share struggles with social skills or toileting), this is not the same thing as saying "Here are the 10 goals I select for ALL 5 -year- olds", or "Here is how I teach Toileting for ALL toddlers". If ABA is not customized and individualized, it isn't really ABA





 
*References - 

Cooper, Heron, & Heward (2014). Applied Behavior Analysis




*Awesome Resource - 











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