When we work with adults who have disabilities, it’s easy to focus only on what’s happening on the surface. We see the behaviors, but we often don’t consider the underlying thoughts, feelings, and past experiences that might be driving them. As Mona Delahooke wrote in her book, Beyond Behaviors: Using Brain Science and Compassion to Understand and Solve Children’s Behavioral Challenges, we often build our recommendations and treatment plans based on what we see, “without adequately considering what lies beneath.”
To illustrate this, let’s look at a real-life example. I’ve changed the names and identifying information to protect the individual’s privacy.
The Situation: Beatrice’s Challenging Behaviors
According to staff reports, Beatrice was exhibiting a number of challenging behaviors:
- Yelling/screaming
- Being “rude”
- Throwing things at people
- Refusing to use her walker
- Refusing to take a shower
- Saying, “I hope someone kills me”
When staff were asked to explain the reasons for this behavior, they often pointed to immediate events, such as:
- She wanted different sheets on her bed
- She didn’t want to shower
- She “just wants things her way”
This approach—looking only at what happened right before and after a behavior—is a common practice, but it often misses the bigger picture.
A Deeper Look: The Overlooked Underlying Reasons
What everyone failed to look at were the deeper, underlying reasons that were impacting Beatrice’s behavior. The following are some things that were overlooked:
- The client had just moved into a new apartment with new roommates
- She moved into a smaller room, so her family was choosing items that had go into storage or be thrown away
- The client’s Step Mother had promised to get her sheets months ago, but hasn’t done it yet (so, in all reality, my client has been waiting a long time!)
- The client has a difficult relationship with her family.
- While I haven’t witnessed outright verbal abuse, they blame her for a lot of things, they restrict access to things that she has a right to have, they never visit her even when they promise they will, they do not answer her phone calls, they shame her for “being awful” and making their “lives difficult”.
- The client has a degenerative disease that has not been officially diagnosed. She is gradually losing her ability to walk, talk and do things she used to do.
- The client recently told staff that she was frustrated with losing her abilities and wanted to find a support group.
- The client does not have friends with her same interests
- The staff have said that her roommates are her friends, but I talked to her this was not the case. Just because people live in the same place does not mean they are friends
- The client has asked for more freedom over her money and her family said that she couldn’t have more freedom with her money because she would “make bad choices”
There are definitely more things that are impacting her behavior, this is just the tip of the iceberg. If we only look at the surface, we are missing legitimate reasons why behaviors are occurring. If BCBA, service providers, staff and families acknowledge the many variables impacting behaviors we could have interventions that would bring a high quality of life instead of making a client more compliant.
These are things I think would help my client that do not involve taking her things away, threatening to call the police or promising her money if she “behaves” (all of which have been done already and have only caused behaviors to increase).
| Current Problem | Solution |
| The client had just moved into a new apartment with new roommates | Can we sit for a minute and relax and acclimate to the new place, ask her what her feelings/opinions are about it. If she has concerns, are there ways we can address them? |
| She moved into a smaller room, so her family was choosing items that had go into storage or be thrown away | Let Beatrice decide what she wants to keep and what she wants to put in storage If she can’t decide, can we put things on a rotation? |
| The client’s family had promised to get her sheets months ago, but hasn’t done it yet | Get her the damn sheets! |
| The client has a difficult relationship with her family. | Start family therapy and address the issues there |
| The client has a degenerative disease that has not been officially diagnosed. | Start family therapy and address the issues there. Beatrice should not be the only one required to change her behavior, her parents have a responsibility here as well. |
| The client recently told staff that she was frustrated with losing her abilities and wanted to find a support group. | Find or start a support group |
| The client does not have friends with her same interests | Can we find more activities in the community that will give her more quality friendships? Does she already have friendships that she just needs help strengthening? |
| The client has asked for more freedom | Give the client more financial freedom. Use visuals to show her where her money is going (i.e. rent and utilities)Help her develop a budget with what is important to herLet her have money that she spend without accountability from other people (she should be able to buy a $10 shirt without everyone getting mad that she bought something she didn’t need). |
I want to acknowledge that there are BCBA and researchers who trying to make things more ethical and who are looking into strategies that are more compassionate and acknowledge some of the inner stuff that is impacting behavior. The problem is, the majority of providers/staff that work with adults who have disabilities still have this very behaviorist mentality- which is impacting quality of life and quality of care.
So, what do we do? We start talking about the stuff we can’t see that is impacting behavior. We look at a client’s history. We look at how much access they have to freedom, autonomy, dignity and choice. If you want to join me in finding ways to change this, please contact me! The more people with a similar mission and similar values, the better!
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