"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. 

Read more »

Tameika Meadows, BCBA, Blog Author

 

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 1^st 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'

Read more »

Tameika Meadows, BCBA, Blog Author