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 - 










 Recommended Reading (seriously, go read this now): Autism & ABA & A$$holes




ABA peeps: Do you want to be a good Behavior Analyst? Or a Great Behavior Analyst?


'Behavioral Artistry' as described and defined in the 2019 Kevin Callahan et al. article, is the difference between being a practitioner following learned "recipes" or paint-by-number strategies, and a creative, passionate clinician, qualitatively better at their job.

We know the process of obtaining the BCBA credential: verified coursework, hands-on practical supervised experience, and passing a rigorous exam (www.Bacb.com). Completing these steps to satisfaction will yield a BCBA.

But will that BCBA be....pleasant? Professional? Funny? Warm? Engaging? Enjoyable to work for? Caring? Empathetic? Socially Mature? 


Does it matter what we know (skillset), if the experience of working with us/for us is terrible?

I'm going to answer for everyone and say: No.


If you have been working in this field for some time and have not come across the stereotypical "cold, robotic" BCBA, then how exciting for you. Unfortunately, your experience of not working for or with this type of person does not deny their existence. I have worked for quite a few arrogant, rude, empathy-deficient BCBA's, and have also helped fellow BCBA's (and myself) to self-correct when that good ole' bedside manner needs a realignment.

This is a problem.

It's a problem because BCBA's most often fulfill a role focused on people, and socially valid behavior change. People need to like us, in order for services to be most effective. People need to listen to what we have to say, value our recommendations, and trust our data in order to yield any results.




As a BCBA, do your supervisees enjoy working for you? Are they having a pleasant experience being supervised by you? Do your clients enjoy seeing you show up at their school, home, or clinic? Do the client parents or families enjoy working with you? What about your colleagues, the leadership over you, or other professionals you interact with to do your job (educators, SLP's, OT's, physicians, etc.)? Beyond data sheets, reports, and graphs, what is the qualitative experience people have when they encounter you at work?


Basically, the big question here is: **What are the behaviors that make some BCBA's better than others?**

The concept of Behavioral Artistry was developed out of a need to address the interpersonal behaviors of Behavior Analysts (which ones are most needed? what happens when they are lacking?), and directly tie those behaviors to clinical outcomes. In case you missed that---> insufficient interpersonal skills can have negative impacts on treatment delivery, and client success. See why this topic is so important? 


BCBA's with better interpersonal skills (as measured by specific behavioral characteristics), LOOK better when doing the job. They laugh more, they smile more, they pay attention better, they listen more carefully, they are more objective, they are more creative, they are optimistic, they are persistent, and other people have a better experience working with them. 

I always find it so odd that in a role where many of us are working to help our clients be more flexible (Super Flex, anyone??), as BCBA's we can be some of the most rigid and inflexible clinicians, when compared to other disciplines. Why is that? Who exactly does that benefit??


In 2016 Leaf and colleagues examined the pervasive use of ABA in autism treatment, and pondered ways behavioral interventions could become less effective:

"A danger inherent in any large scale, quickly growing area is a loss of focus on meaningful purpose, process, and outcomes. In the field of ABA, this might translate into dogmatic lack of attention to clinical significance, selection of impractical procedures, ritualistic data-collection, over-abundant use of off-putting, dehumanizing terminology, disregard of logistical realities, and insensitivity to consumer issues"

 Any part of this quote sound familiar? Or like anything you've experienced at work? Particularly in the current climate of the ABA industry, where Big Business can be more focused on profit than quality.


Behavioral Artists are best viewed as organically talented BCBA's (meaning their greatness is more about who they are, than what they know)  who consistently demonstrate specific interpersonal characteristics such as the following:

  • Likes people: is able to establish rapport; demonstrates concern; wants to facilitate positive change;

  • Has “perceptive sensitivity”: pays careful attention to important indicators of client behavior that may be small, subtle, and gradual;

  • Doesn’t like to fail: sees difficult clients as a personal challenge to overcome, and as an opportunity for the client to succeed;

  • Has a sense of humor: recognizes and accepts that much in the educational and human services professions is bizarre, illogical, and humorous;

  • Looks “for the pony”: is optimistic and sees behavior change in a “glass half-full” context; always believes programming will be successful; is less likely to burn out;

  • Is thick-skinned: doesn’t take negative client actions towards herself or himself personally; maintains objectivity and positivity; and

  • Is “self-actualized”: does whatever is necessary and appropriate to facilitate and produce positive behavior change; is not under audience control; is creative


If we want to be great clinicians (which...… why wouldn't we want to be great?), then the measuring stick used needs to go far beyond goals mastered, assessment grids completed, and billable hour quotas met. Productivity does not equal excellent interpersonal skills.

The measuring stick used must include qualitative measures, such as client feedback, supervisee feedback, warmth, and compassion.



References:

Callahan, K., Foxx, R. M., Swierczynski, A., Aerts, X., Mehta, S., McComb, M. E., Nichols, S. M., Segal, G., Donald, A., & Sharma, R. (2019). Behavioral Artistry: Examining the Relationship Between the Interpersonal Skills and Effective Practice Repertoires of Applied Behavior Analysis Practitioners. Journal of autism and developmental disorders49(9), 3557–3570

Leaf JB, Leaf R, McEachin J, Taubman M, Rosales S, Ross RK, et al. Applied behavior analysis is a science and therefore, progressiveJournal of Autism and Developmental Disorders. 2016;46:720–731.


Are All BCBA's Robots or Just Mine?


Providing Compassionate Care 





 


Source: www.PatrickMulick.com


Punishment- A consequence that happens after a behavior that serves to reduce the likelihood of that behavior happening again.  


Teaching - The process of attending to people’s needs, experiences and feelings, and intervening so that they learn particular things.


Got it?

Good.



"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)."

Source-  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 dissapointed, 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.




**More resources below:


Rigid Eating Habits

Food Selectivity

Inflexible Thinking

Use Inflexibility to Teach Flexibility

SuperFlex Curriculum

Intentionally Changing Routines

Poljac E, Hoofs V, Princen MM, Poljac E. Understanding Behavioural Rigidity in Autism Spectrum Conditions: The Role of Intentional Control. J Autism Dev Disord. 2017 Mar;47(3):714-727. 



 




A current criticism of the ABA field/industry is that as more and more investors come in, expand existing companies, and open new and large, multi-state companies, quality assurance is decreasing.

 

How are we intentionally and systematically evaluating the effectiveness of treatment, client outcomes, and individual client response to intervention? Not just at a large, across clients level, but for each individual case/client/treatment plan (e.g. "For THIS specific client, was treatment effective?").

 

There has been criticism aimed at ABA that it doesn’t work, lacks large group data comparisons, is only effective with specific ages/ability levels, or is less effective at lower treatment hours. (See recommended reading below for more on this).

 

Sometimes this criticism is in itself, flawed and misinformed. Such as many funders viewing “successful treatment” as reducing or eliminating common Autistic characteristics, i.e. Stimming. Ethically, a qualified BCBA or practitioner will not intervene on a behavior unless there is a demonstrated clinical need to do so. The goal of ABA is not “normalization”, so if we are measured by a “normalization” measuring stick, then yes…. We will fail.

 

But, in other instances the criticisms about our field need to be heard, and embedded into how we practice.

For example, when an organization is reporting on “client success rates”, common variables that are included are things such as: amount of time from 1st parent contact to services starting, how much of the insurance authorization is being consistently utilized, how many states is the company in/what is the new market expansion rate, etc.

But what about: Are the caregivers/parents satisfied with treatment outcomes? Measuring social validity of the specific strategies and techniques used? And very important--à What does the actual client receiving services have to say about it? Is their experience of ABA positive? Negative? Do their own self-determination goals and life needs factor in to the ABA treatment plan? Was the client consulted and collaborated with as the treatment plan was being compiled?

And, oh yes: Are we measuring practitioner satisfaction rates? At the direct staff and supervisory level? If you think revolving door RBT’s, burned out BCBAs, and underpaid and undervalued practitioners will have no effect on the quality of treatment provided to consumers, you are living in a fantasy world.

 

I see few outcome measures like this in the field, but I do see more of this starting to happen. Starting to become more prevalent at both the practitioner, and the organizational level. Which is wonderful. There are some companies out there working very hard to go against the tide, and to stand out from the pack.

 

We have to look beyond progress to goal mastery/completed targets, and completing the assessment grid, to evaluate if our services are truly effective or not. And by “evaluate”, I mean putting on our clinical hat and collecting the data, examining the data, making decisions based on the data, and letting the data guide how we do business and serve consumers, day in and day out.

We have to look beyond just decreasing and increasing behaviors, because did we decrease/increase the behaviors most salient to the individual receiving services? Or to their parent? The word “effective” can encompass multiple complex variables, which means it will require input from multiple sources (funders, caregivers, clients, practitioners, and organizations/agencies).

 

We have to #DoBetter both as practitioners, and as organizations. There is far too much at stake here for the clients we serve, the families we support, the stakeholders we report to, and the public perception of our field.

 


*Recommended Reading:


"Does ABA Therapy Really Work?" 

"Why is ABA Therapy not working?" 

"When ABA Therapy Isn't For You"

'US Govt. Reports that ABA doesn't work

"Parent Perceptions about ASD Influence Treatment Choices"

"Why Caregivers discontinue ABA"

"An Evaluation of the Effects of Intensity and Duration on Outcomes"

"Systematic Review of Tools to Measure Outcomes for Young Children with ASD"

"What is Social Validity?"

'ASD Intervention: How do we measure effectiveness?'

'The controversy over Autism's most common therapy'






Today's QOTD is an amazing & fun discussion that I had the privilege to join, with the dope people over at: "ABA Inside Track".

"Special interests" are what we used to refer to as "obsessive interests/ritualized play/info dumping" or restrictive, repetitive interests or conversation topics.


If you are an ABA peep, or a caregiver of an Autistic, then you know exactly what I'm referring to. For non-Autistics, it can be hard to understand the intense interest (often to the exclusion of other important tasks and activities) in Toy Story, or Thomas the Tank Engine, or obscure 1970 bands, or construction sites, or objects that spin, or Mickey Mouse Clubhouse.


A unique special interest is an item, show, song, toy, etc., that sparks a very intense, and very elaborate fascination. If there is a toy or figurine, then ALL the figurines must be purchased. If there is a DVD or TV show, then the ENTIRE show must be watched, with 0 interruptions. If the interest is a place or location (such as a special interest of watching garbage trucks), then we MUST go watch the thing, at the place, right now.


There is an urgency to special interests that makes it difficult for teachers, therapists, caregivers, to transition the individual to other activities, or away from the special interest.


So how do we deal with this?


Well, the old way is to try to remove or lessen the fascination. To try to block or put away the interest, particularly if it isn't "age appropriate". To say "no, not right now", or "we're done with that", or "stop talking about that".


But is that the way we should approach this? Is that helpful or healthy, long term? And what does that say to the person with the special interest? Who may not cognitively understand why we CANNOT watch elevator videos on YouTube all day, every day.


Instead, let's talk about ways to include, embed, and incorporate special, unique interests into everyday life. Into instruction, into therapy, into school, into intervention. Think it can't be done?


Well, research would disagree with you. ;-)


Take a listen! This is good stuff.



ABA Inside Track Podcast, Episode 160










*Recommended Reading:


Autistic 'Obsessions' and Why We Really Need Them








I don't work with adult clients often, but I do regularly work on life skills/building independence, and pre-vocational training stuff with children and adolescents.


The thing about adulting is that trying to shove a bunch of information and life lessons into your grown child is a bit too late. Especially if we're talking about Autistic adult children who may or may not ever live independently, may or may not hold down steady jobs/have a career, and may or may not attend college or technical school.


Wayyyy before you think you need to start teaching this stuff, is when I recommend teaching this stuff. :-)


For any parent, its a hard thing to look at your 10 -year- old and start thinking about teaching them to do laundry, independently grocery shop, change a flat tire, or shop online. But, if you expect your child to do all these things one day as an adult, then yes, absolutely start teaching it early.

Your teen or adult child can start learning today, to do things like:


  1. Personal care/Hygiene/Grooming
  2. Shopping & Money Management
  3. Electronic Use & Internet Safety
  4. Vocational Training (*which should be a natural extension of interests, hobbies, or strengths)
  5. Driving or Navigating Public Transportation
  6. Time Telling/Time Organizational skills
  7. Employment Seeking (resumes, interviews, etc.)
  8. Self-Advocacy/Assertiveness ---- probably my #1 Adulting 101 skill to teach


For children with disabilities (not just Autism), it may take more time, more repetition, and more real-world practice for these skills to be taught. Which means starting sooner rather than later is the way to go. Think about your own adulting for a second-- when you first left home, did you know how to scramble eggs without burning them? Or manage a credit card responsibly? Or negotiate with a pushy salesman when buying a used car? If you answered "yes" to these questions, then you were far superior to most of us! 

The reality is that whether your child will ever be able to live separately from you or not, as a parent I'm sure you want to help them be as independent as possible, and be able to make decisions about their life/have a say in their own life. Teaching some common 'Adulting 101' type of skills can be the way to do this, and be sure to combine that instruction with actual real world practice. Despite what we may like to think, school will not teach our children everything they could possibly ever need to know by graduation day. Nope.


What do I mean by real world practice? Well, I've worked with high school age clients before who received vocational/life skills training at school, or through a special program that helped them get part-time jobs. The problem was, these skills didn't generalize outside of those settings. If Charles learned to cook chicken breasts at school with Ms. Larson, that did not automatically mean he could cook chicken breasts at home, with Mom and Dad. If Kacey helped out in a local daycare classroom every Tuesday afternoon, that didn't not mean she could successfully baby-sit her younger brother at home.

Like any other skill, life skills need explicit, intensive instruction, as well as multiple generalization opportunities in real world situations. Multiple generalization opportunities means that the instructor/supervisor needs to differ. The setting needs to differ. The materials/items used need to differ.

Don't just teach your child to wash/load the dishes at home. Let them practice at the neighbor's home, at Grandma's house, etc. The steps of the skill will vary a bit as it is generalized across opportunities, and that's a good thing! There are very few adulting tasks that are done the exact same way, every time. We also know that many Autistics lean towards rigidity and sameness of routine, which can be a good thing or can be highly detrimental to learning if it gets in the way of doing something differently. For example, if the sink, dishwashing liquid brand, or the equipment used (e.g. type of dishwasher) change, can your child still wash the dishes?


It is hard to look at your children when they are young and know with certainty what their future holds. That has nothing to do with Autism, I think any parent would agree with that. Since we don't know what the future will bring, it makes sense to start preparing our children for an uncertain future now.


You may be wondering, "How young is too young to focus on this?". It may surprise you to learn that I start teaching life skills (Adulting 101) with clients as young as 2 or 3. Yup, its true. 

A toddler can learn to clean up their toys. A toddler can learn to put their empty cereal bowl in the sink. A toddler can learn to pour their own juice. A toddler can learn to put dirty clothes in a washer, or pull clean clothes from a dryer. Why not?? If your children are young and you don't know where/how to start with this, just start with teeny-tiny baby steps:

  • Let your child help as you complete household chores.
  • Slow down before leaving the house, and let your child put their own shoes on, or put their own coat on, or grab their own bookbag.
  • Cooking is a life skill. As early as you can, introduce no-heat recipes such as making a sandwich or fruit salad.
  • When in public settings, help your child pay for their own meal, or hand the cashier money for purchases. Let your child place items on the conveyer belt at the grocery store, or teach them to shop by giving them a visual grocery list.
  • Allow older children to have some responsibility for younger children. Let your 6 -year-old help you care for the 1-year-old.

There are SO many resources out there for teaching life skills and increasing adaptive functioning. This doesn't need to be hard or overwhelming! 
Ask your child's therapists for help and ideas, or talk to their school and see if there are any specialized trainings, classes, or programs available for students on the Spectrum. Most school districts have far more programs and community connections than most parents know about.


You got this!



RESOURCES- 



Essential for Living  Assessment Tool





Organization for Autism Research: Transition to Adulthood

The Life Skills Lady

Transition to Adulthood Research Findings


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