Now that the annual conference for ABAInternational is past (whew!), Cusp Emergence is excited about upcoming webinars and online conferences (New Hampshire and FABA, I’m looking at you!). First up is a partnership with Connections-Behavior.com: We will look at trauma-informed behavior analysis in two parts, on June 1 and 15. Register here for this CEU opportunity!
This is the 19th article in a series on Trauma-Informed Behavior Analysis by Dr. Camille Kolu, BCBA-D. Start by becoming informed; then please read to the end if you’re interested in taking steps with your organization to support therapists and teachers to continue to fulfill their roles as mandatory reporters.
Child abuse, elder abuse, domestic violence, and abuse of people with intellectual disabilities is going on all around you. It may have just become simultaneously more prevalent, invisible, and insidious.
For example, in some areas, there has been a marked decrease in calls to the hotlines that typically lead to welfare checks for vulnerable people in their homes to insure that families have resources they need, children are not being abused or neglected, and appropriate actions can be taken if they are. (See this story from Colorado reporting a drop in calls the 9th and 10th of March as schools began to close).
Across the nation, different states are reporting similar decreases in calls but also a spike in the number of serious child abuse hospitalizations and even deaths.
Reasons for this disturbing increase are numerous. Little annoyances become big ones when there is no possibility of a break and both mental health (e.g., patience) and physical (e.g., food and sleep) resources are running thin. Even a normal battle on whether your kid will eat the peanut butter sandwich becomes a crisis when you’re trying to feed several people a balanced diet with whatever dwindling foodstuff you still have in the cabinet, while money (and outside trips) become scarce.
For many families, the struggle is not only real but getting uglier by the day, by each hour the kids are home from school.
There is conflicting advice, some of it really unhelpful, yet most of it well-intentioned. (I read a recent article about how we should just give in and let kids watch endless videos during this unprecedented time; but for many children, a huge increase in access to media may be accompanied by major behavior challenges (and even injurious and aggressive behavior) when parents try to have them turn it off for meals or bed. Research shows increased screen time can cause impulsivity, hyperactivity, and inattentiveness,
all of which are even more difficult to deal with when you’re cooped up. Of course, you need solutions, and the quick fix is even more appealing right now.
And there are major barriers to resources. Some have said this crisis is leveling the playing field, but really, it’s revealing discrepancies.
Being quarantined at home doesn’t hurt that much when there’s plenty of food, you already know how to navigate technology to work from a home office, and there is room and time to get away from housemates or family members for a little while.
Being at home with other people who normally require 7 to 9 hours of behavior support and school-provided structure, let alone meals, while you work to make ends meet—that is another story altogether.
So there are the struggles to which we can all relate, and then there is the reality of jumping into these struggles with no help, no end in sight: There is the reality of suddenly not being able to be by oneself for even a minute, and not knowing when it will end; there are children whining or crying (or hurting themselves while other things need their caregiver’s attention; there is behavior, so much behavior, that a parent doesn’t know how to handle and is made worse by a lack of structure, suddenly upended routines, and for some, the complete loss of safety figures. At the same time, there are abusive people who are now alone with their victims for the next few weeks.
Maintaining a safe environment for a child depends on several behavioral and environmental factors. Right now, those factors are not all present. Instead, we have
-Caregiver behaviors that are really important to keep people safe, but may not be FLUENT (such as giving effective instructions to a child, creating a schedule for several people, or responding to unsafe behavior that you usually don’t have to respond to)
-Caregivers that may physically present, but not AVAILABLE (e.g., an adult who can provide continuous, adequate supervision to every single member of the household who needs it)
-The presence of new circumstances creating unsafe environments (such as having 3 children with special needs home at the same time, for hours and days on end, and without the things (therapies, bus drivers, respite workers, social outings and educational time) that typically provide structure and relief)
-The additional presence of huge stressors (the unending flow of news about the virus; the dwindling of food and resources; the loss of jobs)
-Competing, sometimes incompatible, needs (like people home from work who need quiet to make money but who also have to provide constant caregiving and supervision; or people who have intellectual and other disabilities and are without their scheduled programs, events, therapies, social opportunities)
-Therapists and teachers who are working from home or not at all, but who normally document and relay evidence that a child or adult may be being abused, mistreated or neglected
These factors and more combine to produce
-The occasion for more abuse or neglect to occur
-Decreased opportunities for abuse to be reported
-Emotional and physical needs that may make the outcomes of a child being quiet or following directions suddenly much more important or reinforcing, whatever the cost
So, my therapist, day program provider, and educational staff friends- how will you add and document safety checks for all your clients on a reliable schedule to take the place of “having eyes on” the client in your clinic, their home, or your school or program?
There are no hard and fast answers. For instance, some behavior analysts are out of work; could they be repurposed to providing online support of families with children at home? Having eyes on the family is good, but it’s also introducing a risk that we will give advice that we don’t have an assessment to back up, or that is not fully safe to implement. And while I’d like to share ideas for behavior analysts to incorporate safety checks of your clients virtually, it’s most important for me to encourage you to reach out, right now, to your organization—and ask for your TEAM’S plan to do that. This is because different states and areas have different guidelines and requirements for you to follow depending on your local recommendations for HOW you monitor and report unsafe situations. You need to do it, but you should follow your local guidelines and state laws.
- Recommit to your role as a mandatory reporter for individuals with disabilities, the elderly, or children, if you are a therapist, teacher, etc.
- ACT as an employee: If you work for an organization, act by asking your company what their contingency plan is for all employees to fulfill this role given our emergency situation, and how you can help.
- ACT as an employer: If you own or lead an organization, stop right now and generate a brief plan for how you’ll support your team to fulfill their roles as mandatory reporters. Here are some ideas:
- Write up a plan and email it out. Bonus points if you schedule an online meeting right away to disseminate it and give examples and encouragement.
- Assign everyone a recommended frequency to make check-ins that specifically deal with the client’s physical well-being and mental health.
- Give the team an example for what questions they can ask, and what they should avoid (if needed) to maintain everyone’s safety in the home they are looking at.
- Tell employees to document the outcome of their checks (e.g., if they notice things that typically would indicate possible abuse or neglect; or if they notice something might be wrong that warrants another check-in from a supervisor on your team; if calls are made to CPS or APS)
- Reinforce and encourage the behavior of employees who follow the plan, including having social support carved out for them so they don’t have to go it alone.
Telehealth provision is already a new skillset for some employees, including teachers, and if they are suddenly without any social support when they used to be able to walk down the hall to the counselor, administrator or psychologist on site, they may freeze and wait when action is important. It’s your job to make the unfamiliar but correct action as easy and supported as possible.
And here’s a notice: Social services haven’t closed down. In Colorado, not only are they still making visits, they are hiring. Hotlines are available and staffed with trained professionals to take your call.
Resources: Read guidance from the Behavior Analysis Certification Board on ethics, safety and more related to Covid-19.
Here’s more on how a few states are monitoring this issue.
Call 1-844-CO-4-KIDS if you suspect abuse or neglect
For birth to 3 receiving services: http://coloradoofficeofearlychildhood.force.com/eicolorado/EI_QuickLinks?p=Home&s=EI-CO-Response-to-COVID-19&lang=en
And in Texas, use this info:
If you suspect a child is being abused or neglected, please contact the Texas Department of Family and Protective Services toll free at 1-800-252-5400, 24 hours a day, 7 days a week.
You may also file a report using the secure TDFPS website. Reports made through this website take up to 24 hours to process.
The Texas Abuse Hotline is 1-800-252-5400.
beauty and the bug, beauty and the bug cusp emergence, ceu bacb, cusp emergence, ethics ceu, trauma, trauma and behavior analysis, trauma and developmental disability, trauma and ID, trauma-informed behavior analysis
Beauty and the Bug (in which we briefly explore trauma and non-neurotypical people, ask how to raise tender-hearted children, and see a bug portrait in pointillism)
This is the 15th article in a series on Trauma-Informed Behavior Analysis by Dr. Teresa Camille Kolu, Ph.D., BCBA-D.
How do we teach others to tend the needs of those who cannot express them (or for that matter, appreciate the lesson of loss, the tenderness of pain, the beauty in brokenness)? And how common is trauma in individuals with serious developmental disabilities? Many of us have not considered the relevance, let alone the prevalence. Is this because we can’t see it, don’t hear about it, or think that it is out of our scope to address? These questions occurred to me this week as I thought about a participant from a recent training I provided, who asked if the model of trauma-informed behavior analysis (about which I’ve been writing here) applied to individuals with intellectual differences (it does!). Even to us professionals in the field of behavior analysis, the complexity of and subtlety of trauma and behavior remains elusive.
This week my family lost a wonderful man. He and his wife tended to the needs of others (often before their own). Also this week, my reason for taking a work break turned three months old, and Imagine! (a nonprofit agency in my area) had its annual celebration. As I mulled over these questions about trauma and differences and on raising good people, a therapist friend posted Imagine’s video of one of their clients. I realized I had not blogged before specifically about treating challenging behavior in someone who is differently abled. I need to do that, lest one more reader think that this approach (trauma informed behavior analysis) is mainly useful for “vocal” clients, or those who can easily articulate their pain and past. Today, Shelly and her zany personality inspired me to do this.
Individuals with developmental and intellectual differences express or show their history and needs in different ways, and sometimes caregivers overlook the contributions and signs of trauma, neglect or even ongoing abuse. When we (especially behavior analysts) overlook these, we are not addressing the real reasons for challenging behavior, and we might miss the importance of connecting the person with critical mental health resources, or of offering a chance to heal past wounds. We know about functional communication training. But do we fully address subtle needs to communicate pain—both emotional and physical? And when someone lives in an environment or is exposed repeatedly to a situation or person that is aversive (even abusive!) do we teach them to effectively advocate for removal and communicate their discomfort, or do we merely try to reduce the “challenging behavior” that often accompanies the terrible situation? Do we recognize the signs of abuse in individuals who have few skills to communicate?
Too many times, I took a case where team members requested decreases in “challenging behaviors” in someone with diseases like Parkinson’s, Alzheimer, or Spina Bifida, before the team had recognized that the main thing challenging about the behavior was that it was going on because the individual had NO dignified way out. A conversation with a peer last week revealed that without training in these issues, a behavior therapist or even the entire team might treat “suicidal ideation” as a “behavior to be decreased” rather than a serious problem to be solved. (Even when this “behavior” is partly a habit the person has learned to use as a tool to produce needed attention from others, a whole behavior analysis of the situation would consider the risks and possible outcomes of addressing it in different ways, and document and address the related needs to understand and address why this was happening.)
As Shelly and her team alluded to in the video, the very state of not being able to communicate one’s needs and preferences can be traumatic in itself, and can lead one to develop desperate behaviors that just get called “behaviors for reduction” in the individualized behavior plans of thousands of clients. Today there are no more excuses for not helping someone access and master a communication system that works for them. To be sure, not everyone has access to a Smart Home residence decked out with all the tools we saw on the video- but have you seen the article on an accessible app developed by the brother of a man with autism in Turkey (so that he could communicate needs and gain leisure skills using only his smartphone)?
Tragically, many of my clients went through abuse and neglect and need someone to write careful and informed behavior plans that teach them skills they did not have at the time, like articulating emotional and physical pain, advocating for their needs, and requesting to be removed from a serious adverse situation. Just as important, these clients need an informed analyst who designs ways that these skills will persist when the client moves environments, as I found when a former client kept being exposed to new team after new team that didn’t read the plan and failed to recognize the communicative intent of the behaviors, and the medical component to the “challenges” the team demanded to be decreased. This calls for TIBA or trauma informed behavior analysis (if the team is not already using it).
So it’s not enough for our clients to learn these skills one time. The people who make up the audience, the environment, must respond enough to maintain them. If I ask for help and you respond no, why would I ask again? Remember the lessons of the family whose school team actually discouraged them from using “saying no” as a goal for their adolescent girl with autism, arguing that they didn’t have the resources to deal with her protesting all day long. Actually, the opposite is more likely to be true—that when our “no” is respected (listened to the first time), its use will be more limited to situations in which the person really “needs” it.
So back to my original questions. How do we raise little ones who are likely to grow up to appreciate and shape the voice of the voiceless, who honor the needs of people in ugly situations, who see the beauty in what others view as broken or beyond repair? How do we insure people will have the internal resources to value what isn’t immediately perceived as “valuable” by the culture? Maybe it starts when they are little, in modeling ways we can accord dignity to the frail, the elderly, the dirty. We cultivate tenderness as we show them we appreciate the spiderweb (AND the spider), the weed and its flower, the worm (thanks, mom and dad, Nicolette Sowder of wilderchild, and my very first client who taught me that not being able to talk is not the same as not having anything to say- click here to learn about Rett Syndrome).
Thanks to mom and dad, I still notice bugs and their beauty. I thought this one was wonderful when I looked closely, so I spent even more time to study and draw him. I thought he became even more beautiful as I continued to look. Maybe you can see his beauty too.
P.S. There is so much trauma in our schools today, whether you work with students who are “typically developing/ neurotypical” or those with intellectual, developmental and physical differences. Don’t miss the next course from Cusp Emergence University on trauma informed behavior analysis in the educational setting (complete with CEU’s including one for ethics).
Some references and resources
Articles on prevalence of assault and ACES in individuals with developmental differences:
Read about Imagine! Smart Homes: https://imaginecolorado.org/services/imagine-smarthomes
Watch Shelly’s story: https://video.xx.fbcdn.net/v/t42.9040-2/51213666_2064787060269873_328394071330521088_n.mp4?_nc_cat=110&efg=eyJybHIiOjMxMSwicmxhIjoxMjA3LCJ2ZW5jb2RlX3RhZyI6InN2ZV9zZCJ9&_nc_ht=video.fads1-1.fna&oh=79aed874369dc8f2ab3a3cc89efdd34c&oe=5C4F807E
Read about the man who developed an app for his brother: https://www.bbc.com/news/av/stories-47001068/how-brotherly-love-led-to-an-app-to-help-thousands-of-autistic-children
Get the full TIBA (trauma informed behavior analysis series): https://cuspemergence.com/tiba-series/
Whether you’ve been in the field for a year or twenty, and whether you feel like you make a difference each day, or struggle to go to work, anyone can benefit from deliberately expanding their boundary of competence. Perhaps you’ve had calls from a potential client and had to turn down the opportunity, lacking the experience, training, supervision, funds, or continuing education to say yes, or to provide treatment for that particular diagnosis, age group, type of agency or setting, or behavior. If you can identify, you are not alone. In my recent poll of a group of behavior analysis students in a post-master’s degree course that counted toward the BACB requirements for sitting for the exam, 100% of students identified that they were currently working in the autism field. Despite their lack of exposure to other fields, there was certainly no lack of interest! 40% of students were interested in getting involved in education; 88% of students wanted to know more about behavior analysis in animal welfare; and 63% wanted to learn more about behavior analysis in child welfare and human services, including intellectual disabilities. Seventy-five percent of students would have liked to expand into behavioral gerontology, 69% into behavior-based safety, and 56% into organizational behavior management. And a full 100% indicated they were interested in learning how they could use behavior analysis to support those with brain injury!
With this diversity in the interests of entry level certificants (and an array of actual jobs that is even more rich), it is always amusing and a little surprising to see this frequent question on social media: “is there anyone here who practices outside of autism (or its cousin early intervention)? If so, how could I grow my practice?”
Fortunately, the same foundational knowledge, skills and tools that helped you to grow your clients’ repertoire apply to this opportunity that you face. Maybe you’re thinking this is easier said than done. But stick with me… maybe that’s just the initial impression you’re getting from the seeming lack of exemplars. Let’s talk about a skill that’s already in your repertoire: arranging a supportive environment for doing something new.
First, it might help to connect with your “values”, goals, or reinforcers (see this article on values in behavior analysis using the ACT (Acceptance and Commitment Therapy) framework). Or you might find it helpful to jot down your answers to questions like this: What do you want to be doing in 5 years? What is one thing that if you began to do it, your entire life would change? Who do you most want to help in your lifetime? What gets you so jazzed up you can’t stop talking about it? Israel Goldiamond, the father of the Constructional Approach, asked similar questions in his Constructional Questionnaire. I think of this as the best motivational interview out there, and you can find it around the end of his wonderful 1974 article, reprinted in 2002 here (see page 187). He wanted to know, “assuming we were successful, what would the outcome be for you?” Another way of asking this question is to ask yourself what “cusp” you need most to achieve your goals. (See this article on how identifying a behavioral cusp can help you make leaps of progress.)
Now that you have gotten in touch with your “why”, you need to arrange some ways to contact related reinforcers, and to see exemplars in action. Just as a video model helps my 13 year old client learn to make a sandwich and see the results – consuming the delicious hand made treat—I was inspired and more, when I broke out of my comfort zone and attended conference talks that only remotely applied to my then-current work in autism. I watched OBM talks, animal talks, behavior safety and gerontology talks, and went to every talk on behavior analysis in mental health that I could find. RELATED TIP: At conferences, approach speakers who inspire you from different and related fields. Ask them for suggestions. Select a recommendation, apply it for several weeks, and contact the person to follow up and thank them.
When first branching out (or planning your leap), I recommend that you spend some time dedicated to being a generalist. Nearly every area has at least some agencies that support people with developmental disabilities or differently abled people of all ages. Around Colorado, I can do this by connecting with Community Center Boards, ARC’s, and county organizations. If you don’t find full time opportunities for paid work with these organizations, you can gain the same benefit through volunteering at an agency similar to those I have named. The great benefit of this suggestion is that you rapidly move beyond being “a person with experience with autism and early intervention”, to someone who has been around inclusive support of people with an array of developmental, intellectual, and genetic challenges. Doing this step before working on my own meant that I was now experienced with all ages and settings where people might experience treatment, ranging from private residences, host homes, group homes and mental hospitals, to all kinds of day programs.
Next, I encourage others in the “before you leap” stage to begin to collaborate intensively and intentionally. You can do this wherever you are, of course. I can’t count how many letters I have written to the client’s pediatrician, physician, dentist, feeding therapist, psychotherapist, occupational and speech therapist, advocate, social worker, police department, psychiatrist, psychologist, adoptive caseworker, and nurses. When and why do I do this? I initiate the contact to surrounding professionals (when appropriate and after obtaining written permission from the guardian, of course (see Compliance Code Guideline 2.03 and 3) at the onset of a case when I am conducting my documentation review, as part of the FBA (Functional Behavior Assessment). I do this to let the potential collaborator know I am doing an assessment in case it impacts or informs their own clinical work, and request documentation if needed for my assessment. I don’t always hear back. But when I do, these connections grow my network and enhance the client’s collaborative care. And the professional may write months or years later and ask for collaboration or consultation or training for their staff!
At the end of services, a report may not be required. But write it anyway. It helps to document the closing or transfer of a case in an appropriate way, and provides a way for you to leave your information for all parties in case someone wants you to collaborate in the future. Be sure to add the 3 R’s: Always embed resources, risk assessments, and referrals in your reports. The risk assessment piece has helped me grow my career in several ways. First, it’s just plain good (and ethical) practice to document the risks and potential benefits of current and other possible options for what your client is considering. But it’s also a little new to the field; it’s not quite standard practice although it’s a standard recommendation. I have had referrals to do educational evaluations and consultation for companies and agencies who happened to see one of my risk assessments embedded in a report.
RELATED TIP: Graph other people’s interventions. You already know you’re responsible for helping understand the effects of related interventions if the client is receiving more than ABA. But this is also hugely educational for the other professional, and fosters future relationships. What psychiatrist wouldn’t appreciate a cumulative record of challenging behavior or new words learned, with lines on the graph showing her when the medication changes occurred? What social worker would turn down a graph of her home visits and the child’s family interaction, superimposed on a graph of the client’s challenging behavior? What school teacher wouldn’t appreciate a graph of new skills learned at home at the same time as school interventions were occurring?
The above tip only works as long as we respect others and value others’ work. Try to learn about it before you offer to help or intervene, never ask a team to take data before looking at (and perhaps graphing) what data they are already collecting. And I like to enter any environment with a “tips sheet” that puts into words some basic strategies that will help promote appropriate behavior, leaving them with my contact information and availability to collaborate if they need support or want to learn more about behavior analysis. (See this earlier post on collaborating within hospital environments for similar ideas).
Tips for entering a provider network that you’re not familiar with: You can contact a caseworker for the agency and ask to speak with someone in their administration. Or you can ask how people become providers. Usually there is an upcoming provider fair in the next few months you can get invited to. Finally, ask if they have support groups for families or clients; ask if you can audit a support group to learn more about their needs. Be quiet and respectful during this time that families are sharing, and think about ways you would be able to support them. Don’t ambulance chase; follow the ethics code and find other routes. (While you wait you can apply to be a provider, and offer to do a free basic training on behavior analysis and how clients can benefit). The agency may start connecting you to families at that point.
Give back and stay connected. I practice these tips regularly: find a mentor, meeting with someone regularly who can guide you. At the same time, I meet regularly with people who likely can’t help me, but to whom I can be a good source of advice or support. At any level you can do this; BCaBA’s can help to mentor an RBT; BCBA’s can mentor BCaBA’s and RBT’s; and BCBA-D’s can mentor each other, and BCBA’s. Sometimes finding a complementary professional who is in a field that’s only slightly related can be a great source of networking and support, as I find with professional friends who are not behavior analysts but who are mental health therapists, psychiatrists, and psychologists.
Some final thoughts: Ask for supervision and mentorship actively. (We live in an age where you can easily have phone or internet meetings with someone across the globe whose experience you lack.) Give referrals to others (help others grow their networks). Read articles, and attend conference meetings, slightly out of your field. Check out what other behavior analysis professionals have to say about expanding boundaries. Contact conference presenters. Trust me, we usually welcome it. Be interested in other people and their work, research, articles, podcasts, what they love to talk about. DO give a firm “no” before, not when, you are overloaded (this helps you do a good job in every case). When you have to say no, teach people how to locate a behavior analyst in their area. Keep growing your skillset (my current frontier is an ACT supervision group I have joined with therapists who are not behavior analysts). And finally, try keeping a yes/no log! This is a place to write down the contact information, date and nature of any referrals or opportunities you received, that you must turn down because you still lack the mentorship, experience, continuing education, training or supervision. Check whether the opportunity aligns with your values and goals (see the first step we discussed today). If it does, then program for yourself an action plan in which you identify at least three actions that put you closer to saying “yes” to similar opportunities in one year. One year later, check in with the old referral and let them know you appreciate the ways they helped you grow and that you’d be happy to meet for tea to hear how they are doing.
If this post helped you, let me know how YOU are doing… or feel free to write me and add suggestions and solutions you have found. May we all keep growing!
LeBlanc et al. (2012) on expanding the consumer base for behavior analytic services
Website on Goldiamond’s Constructional Approach: https://behavioranalysishistory.pbworks.com/f/The%20Constructional%20Approach.pdf
Goldiamond’s article Toward a Constructional Approach to Social Problems (you can download the PDF by first going to this page):
Article on “values” in behavior analysis using the ACT framework:
Article on ACT and behavioral activation related to depression and avoidance:
At CuspEmergence, we love finding resources or information we can share with our families and community. Imagine our excitement when we discovered this close-to-home resource, an entire website devoted to helping parents become even more amazing at playing, communicating, and connecting with their children! Paradigm Behavior maintains a website and resource library where families can learn, with the support of a Board Certified Behavior Analyst who is a parent herself. Christina posts blogs, resources for supporting play, and online coaching for families interested in developing play skills, language, and more. Paradigm Behavior maintains a well-stocked Playroom, which could teach students and supervisees cutting their teeth in behavior analysts a thing or about connecting with families and using materials in effective ways.
The resources we found were helpful even to seasoned behavior analysts, taking much of the work out of connecting parents with individualized resources that were at once friendly and helpful. We think you’ll love them as much as we do
Check out ParadigmBehavior.com.
What does hope look like?
The behavioral doctor sat between house calls in her car with amazed tears streaming down her face.
Was this viral story true?
Intuitively, she knew that it must be, for she instantly recognized the chubby little face she saw on the screen. She suddenly recalled the clear little voice asking for “music!”, and a couple of weeks later, “music, please!”. She remembered when his list of words included about five. She recalled singing songs (“Way up in the sky, the little birds fly….”) to a toddler who had needed early intervention desperately.
But the story she read on facebook was also hard to believe, because this young man wrote so confidently and was about to graduate. He also sang so beautifully, as links posted by his mother—and his scholarships to prestigious programs—confirmed. It had been at least 15 years since she saw the toddler’s face, or said “do this” and prompted him to carefully stack one block on top of the other, painstakingly teaching play skills that other children seemed to learn so naturally. At the time she had worked for an early intervention program, providing or supervising up to 7 hours per day of behavior therapy to children whose tantrums often overwhelmed and injured their parents, teachers and skilled therapists—but communicated their wants and needs before they had words. And at the time, she did not know that behavior analysis would become her fulfilling career and that she would go on to study neuroscience and learn how the brain really does change with the hundreds and in some cases, thousands of hours of careful social input that certified behavior analysts are trained to provide.
But this was definitely the same little guy, except he was all grown up. Continue reading
Recently Brenda, a mom and autism social media specialist, posted a story to her website http://autismbeacon.com/, originally shared by a news organization. The story led with a terrifying statistic: according to the National Academy of Pediatrics, nearly half of children with autism will run away before their 17th birthday. However, according to AWAARE, or the Autism and Wandering Elopement Initiative, a poll conducted 5 years ago found 92% of parents reporting “a tendency to wander” in their children with autism.
Parents of children with autism have had to create their own networks, do their own research, gather their own information, be their own advocates, lobby organizations for the similarly needed but unfunded support as persons with other challenges receive. Simply put, these families have had to be the change they desperately needed, which Brenda’s website (and her activity in additional social networks) illustrates. Many of Brenda’s followers have responded to her article post by sharing their suggestions, tips, and resources for elopement. I appreciate all of them, and have integrated many into my own practice or conversations with families.
So here are mine.
- At any level of your involvement, know what YOU can do to prevent and respond to elopement. Families can teach safety skills and do preventative training with all family members and the community. Community leaders can advocate for mandatory training in nonviolent crisis intervention, responding to community safety alerts, warning signs in neighborhoods, fences on playgrounds at churches or schools, and awareness campaigns and meetings. School professionals can learn to not take it personally when a child’s parent demands in his IEP meeting that we need a fence around his playground because paraprofessionals might not be fast enough to prevent his running into the street.
- Understand reasons individuals might run away, elope, or bolt. As with any behavior used by an individual with autism, elopement often occurs to get away from a situation that is challenging, aversive, or overstimulating. Elopement also occurs to go toward a situation that is more pleasant, familiar, calm, or interesting. Does your student have a way to request visiting his favorite spot or a way to communicate that he needs to leave? Do others recognize her signs of distress that we might consider “precursors” to elopement? Do others in the family and community recognize how to interrupt a possible elopement and redirect to safety? Is everyone trained in nonviolent crisis intervention so that the child is not handled in a way that makes a dangerous situation even worse?
- Know which behaviors you need to teach. Teach family members to reinforce these behaviors often enough for the learner to master them.
- Responding to safety questions: When the child is very young, we can begin by teaching children to respond to the sound of our voice. At first, it’s a safety skill to look when a parent calls our name, or to come nearer when our name is called. If your child is vocal, we can teach vocal responses to social safety questions. When mom calls “Danny!”, does Danny call back “I’m over here”? There are different levels of each of these skills, and as a student learns more sophisticated ways of answering questions, we should continue to practice safety questions. Can the child answer what’s mom’s name? Can he answer where he lives?
- Learn who the community helpers are in our environments, and where they are located: We can teach children to recognize community helpers, and later, what to do if they see unsafe situations.
- Teach safe behavior: Does the child consistently look for an adult and ask prior to leaving the house? Does the child request a parent or sibling when he wants to take a walk, or go play outside? Beginning when the child is very young, we can teach him to look around and see an adult’s face before starting to do an activity where supervision is required. When one child was very young, his team placed a picture of his face on every door in the house- EXCEPT the back and front doors, and the door to the basement. On THOSE doors, we put a picture of the child with his mom. Every time we went out that door, we tapped the picture and said “We always go out THIS door TOGETHER. Where’s mom?” and we taught the child to go get mom’s attention. After that, they went outside together. Does the student stay close when out with others? Does the student seek an adult if he gets separated from the group? Just like the research suggests, students CAN learn to do this- but they need serious practice under conditions very similar to the real thing (see this blog for an example)
- 4. Prevent, prevent, prevent.
- Not once, but THREE times in the past year, I have heard a family say something like this: “I didn’t think he would leave, but after we found him down the street in a neighbor’s yard, we installed fingerprint locks on all the doors.” Listen: If we know 92% of parents report their child with autism occasionally wanders, it’s just a matter of time. If your child hasn’t run away yet, fantastic! Order locks today. There are many varieties of locking mechanisms that prevent leaving without someone else in the house hearing it. Consider whether your family needs bolts that prevent doors or windows from being opened, or other mechanisms that alert you or the police when a door is opened when the security system is armed.
5. Research what other parents have done to prevent. Consider make an outing plan, including having a package of materials ready. If your child goes into the community, which adult is responsible for monitoring his location? Where are the safety phone numbers? Does he have activities with him that he can use to calm down if he becomes distressed or if he is in a situation he finds overwhelming or overstimulating? Where will he go if he needs a break? How will he find the needed information if he forgets your phone number? Does your community participate in Project Lifesaver? http://www.projectlifesaver.org/
6. Understand there may be help waiting for you. If your loved one is on one of the waivers supporting children or adults with special needs, they may be able to get locks or security systems funded. There are programs out there waiting to donate a fence, a lock, or even money for training.
7. Tell someone you’re concerned. Many families report they never received advice from a professional, or never discussed with their pediatrician that elopement was a concern. We need to educate pediatricians and other providers to ask about this. Primary care providers can collaborate with specialists to prevent dangerous behaviors, but this can only occur if both parties know they need to talk to each other.
8. Be aware of organizations that can help. Here is the Frequently Asked Questions page for AWAARE. You can also check out what other agencies have compiled to support families.
9. Know the research and understand that there ARE evidence based ways to teach safety skills. This article is a great example. This article shows the effectiveness of Behavioral Skills Training to teach abduction prevention skills in children with autism, and the results of teaching were maintained at follow up checks after the training had been completed. This was published in the Journal of Applied Behavior Analysis by leaders in the field of behavior analysis and used instructions, roleplay, modeling and feedback to teach a skill all children need, especially children with increased risk of running away.
Thanks for reading. We’d love to hear your own tips and stories.
Part 1 of Series: Helping caregivers and teachers support children to meet fearful challenges
Shannon and Gina sat in a free play area near their preschool teacher. “SQUAWK!” came the loud animal sound when Gina pushed the button on a new toy. As the toy noise grew louder, Shannon’s eyes opened wider and wider until she froze, a look of sheer terror on her face. She started to back away and wailed, sinking onto the floor and crying.”Oh no,” gasped her teacher. “Put that toy away!” While Shannon cried, their teacher pulled Gina aside and said “I’m sorry, but Shannon is afraid of that toy. Next time we will remember to play with it when she’s in another room.”
Devon’s Mom’s Dilemma
Devon and his mom Jenny walked down the sidewalk with their next door neighbors. As they neared the playground, Devon suddenly grabbed his mother’s skirt tightly and shrieked. “NO BIRDIES! NO DOGGIES!” At this, Jenny’s face grew red as she picked up Devon and held him tightly. She looked at her neighbor helplessly and apologized: “I’m just so sorry… We can’t go any further with you. He’s been doing this every time. He has this issue with ducks and dogs and birds now. I think even if we don’t see one he’ll be afraid one might get him.”
Toward more supportive, long term strategies
At first, it may seem supportive to shield a child from their fears.
But both teachers and parents want and need solutions that will ultimately help children face and overcome challenges. So when there is a question, especially when a particular strategy feels good or soothing or produces relief in the short term, it’s a good idea to ask ourselves, “is this procedure also supportive in the long term?”
If not, how can Shannon’s teacher and Devon’s mom learn a more therapeutic approach? And why is that important? Let’s review these scenarios again, to better understand why and how to take a supportive long term approach. What might Shannon’s interaction with the toy, and Devon’s interaction with park creatures, have in common?
First, these scenarios are similar in how they are resolved.
In both interactions, a pattern is being established: the child first encounters a fear, or “fear inducing stimulus”, and then others respond by helping the child to escape or avoid it.
Second, these scenarios are similar in how they affect other people.
From the perspective of Shannon’s peers, her inability to play with that toy meant that they couldn’t either, at least not when she was around. From the perspective of Devon’s neighbor, the neighborhood kids couldn’t play with Devon in a park. This concept, the idea that Devon can’t play in the park, and that Shannon can’t play with toys that make animal sounds, limits interaction opportunities. It also risks changing the way peers think about approaching Shannon and Devon.
Third, these scenarios have similar “reductive” effects on the children’s “repertoire” or world. Have you ever met a family member or caregiver who says, “we used to love to do ___” but we can’t anymore”? Perhaps a family used to go to the movies, or out to dinner, or have friends over, or go to museums, or go hiking. During the initial conversation with families, that blank is filled in by all the things they need to avoid now because of fears of how people will react, fears that it won’t go well, fears that it will be too difficult, embarrassing, or noisy. Often those fears are REAL at the time! Perhaps people DID stare and talk at church when a family’s child loudly refused to stop standing on the pew. Perhaps all the teachers and mothers DID stare and talk in the parking lot as a child disrobed in public and threw a tantrum before leaving the store. Perhaps it WILL be difficult, embarrassing, or noisy. But keep reading. We can do this together.
Fourth, understand it’s a cycle: handling scenarios by allowing “fear habits” to persist, allows learners to skip learning opportunities and continue to repeat old harmful habits instead.
If Shannon and Devon can’t play with certain toys or in certain places, they have reduced opportunities to learn about those things and places, and no opportunity to learn that they are NOT scary.
Fifth, if these scenarios become habits, they make it more difficult for the child to handle or face similar or other fears in the future. These situations do not teach the child how to be more successful in coping with scary, new or different events.
Bottom Line: Instead of stopping or thwarting learning opportunities, we can expand them.
Come back Friday to learn how!
School of Play ©
Our school of play division provides one-time, brief, or long-term play or leisure skill-based individualized client supports, training, and education.
WHO can benefit?
Groups: Schools, classes, churches, businesses (gyms, pediatric doctors or dentist groups, therapists)
Families: Families affected by behavioral, developmental, social, emotional, or other challenges
Individuals: Children, staff, teachers, administrators
Our clients can benefit from School of Play © services whenever:
-A child gym owner sees staff struggling to help young mothers engage their children in play, interaction, or language, and enjoy the gym activities at the same time
-A community or church member runs a play group in a church or gym, and is not sure what to do differently to support new students with autism
-A community or church play group is not sure how to support children with language delays
-A parent needs the babysitter to manage behavior more effectively when supporting the family’s children
-A parent’s child with autism doesn’t know how to play with his siblings
-A family’s two year old with autism doesn’t like to play with his parents
-A family’s or organization’s group of therapists is great at 1:1 instruction, but they need help getting children to interact with each other
-An organization’s therapists are highly skilled at discrete teaching, but provide less effective naturalistic teaching
WHY does it work?
Cusp Emergence provides play and leisure skill support that is:
-Compatible with IFSP or IEP goals
-In some cases, able to be funded by a state’s early intervention services if the client qualifies
able to improve family or team interaction
-supportive of social, emotional, or behavioral wellness
-provided in the community or home setting
-consistent with research proven methods with demonstrated effectiveness
-administered by qualified, educated, trainers with extensive experience collaborating with parents, educators, therapists and community members
HOW can clients benefit?
-Learn to arrange environments to make appropriate effective language and communication more likely
-Learn to arrange environments to support play
-Learn to teach staff, babysitters, community, or family members to provide supportive environments
-Learn to arrange environments that prevent behavior challenges
-Receive support from our School of Play division in your group or home
HOW does it work?
-An initial consultation takes place to discuss the family’s or group’s needs
-Next, a workshop or future education is planned based on individual needs
-Follow up support is available for families or groups on a schedule determined together with the client
Cusp Emergence is excited to offer a Build-Your-Own-Workshop feature to families, groups, and communities.
1. Consider what your workshop will address, and why you need a workshop.
Need to learn general ways to provide social, emotional, and behavioral support?
Need to practice behavior management for specific behavior challenges?
Need to teach your family or group about managing a particular behavior challenge?
Need to support a student or family or community member with cognitive or developmental challenges?
Want to know more about how social-emotional and behavioral wellness relate to physical health?
Want to learn a particular technique (for example, for teaching skills or shaping language, appropriate behavior, play, or social interaction)?
2. Think about who will participate, where you’d like the workshop, and how long your group would like the workshop to be
3. Contact Cusp Emergence!
CONTACT CUSP EMERGENCE: