Precursor Behaviors to Self-Injurious Behaviors

Kathleen Quill, Ph.D. Author

04/20/2022 Added

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Tri State Webinar 2022

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[00:00:00.500]Well, hi, everybody.
[00:00:01.900]My name's Kathy Quill,
[00:00:04.170]and I am very grateful
[00:00:07.950]that dear colleagues
[00:00:10.110]from Colorado, Kansas, and Nebraska invited me
[00:00:14.910]to talk with you today.
[00:00:18.060]Our topic is intervention for repetitive
[00:00:21.950]and restricted behaviors in autism.
[00:00:26.270]And even though historically my passion was talking
[00:00:31.910]about social communication,
[00:00:37.230]through working with a number of other colleagues,
[00:00:40.170]we've made some interesting insights into repetitive
[00:00:45.180]and restricted behaviors
[00:00:46.970]and its interface with communication.
[00:00:51.280]And so I hope today that this information will help you.
[00:00:58.850]So the purpose of this webinar is threefold,
[00:01:03.770]first, to really understand the broad range
[00:01:09.420]of repetitive and restricted behaviors
[00:01:11.950]that we see in individuals with autism,
[00:01:15.920]to look at the complexities
[00:01:19.130]of trying to assess the reasons why they happen
[00:01:25.430]for an individual,
[00:01:27.750]and then use that assessment information
[00:01:31.830]to consider what I call a multi-tiered way
[00:01:37.910]of creating a treatment plan
[00:01:40.920]with the treatment plan aimed primarily
[00:01:45.460]to reduce the intensity of the behavior.
[00:01:53.060]But the more important purpose of the treatment plan
[00:01:57.390]is to provide the individual with alternative ways
[00:02:02.800]of having their needs met.
[00:02:06.930]So we all know that autism is a trilogy,
[00:02:15.020]and too often, repetitive and restricted behaviors,
[00:02:19.470]which from this point on, I'm gonna call RRB
[00:02:23.540]because it's just easier for me.
[00:02:28.260]I want you to think about rituals
[00:02:30.940]as not just an obstacle that gets in the way
[00:02:35.350]for individuals with autism,
[00:02:37.210]but an opportunity for us to teach them alternatives
[00:02:43.650]and for them to use it as is a strength
[00:02:47.740]for learning and development.
[00:02:51.050]There's remarkably less research
[00:02:55.220]out of the large body of single-case studies
[00:03:00.150]by behavior analysts on rituals.
[00:03:03.790]So we need as a community to do a much better job
[00:03:10.410]at researching this topic moving forward.
[00:03:16.340]I'm actually gonna start by trying to normalize
[00:03:21.844]this topic of rituals
[00:03:25.530]and ask you to take a minute
[00:03:29.340]and think about how important routines are in your life.
[00:03:36.010]So everybody benefits from having a daily routine.
[00:03:40.890]Everybody benefits from having
[00:03:46.595]their electronic tool
[00:03:48.960]that helps them feel a little bit more in control,
[00:03:52.190]helps them remember what to do,
[00:03:55.250]helps them cope on a daily basis.
[00:04:00.179]It helps them reduce stress.
[00:04:02.750]And all of these things, this list of things,
[00:04:06.850]knowing what to do, having a sense of self-control,
[00:04:11.640]coping with unexpected changes, reducing stress,
[00:04:16.270]I want you to take that list
[00:04:18.760]and think about how you're gonna do those exact same things
[00:04:22.540]for an individual with autism because we all need that.
[00:04:30.500]Rituals are central to religious life for centuries.
[00:04:37.660]The power of prayer and meditation and yoga and exercise
[00:04:42.210]and all the things that we do as a culture
[00:04:48.882]are embedded rituals.
[00:04:52.850]They also exist and have been studied actually more
[00:04:57.740]in sports psychology than they have
[00:05:03.365]in the literature that we connect
[00:05:06.670]with autism spectrum disorder.
[00:05:09.710]One of my favorite things, I mean, I love tennis,
[00:05:13.300]and one of my favorite tennis players is Rafael Nadal.
[00:05:18.510]So right now as we're doing this webinar,
[00:05:22.900]the Australian Open is happening.
[00:05:26.260]And if you get to watch him,
[00:05:29.450]if you've never watched him before,
[00:05:31.630]I want you to watch him
[00:05:34.350]and the rituals that make up
[00:05:37.725]his time on the court.
[00:05:42.530]If you're not interested in doing that,
[00:05:44.630]you can Google him and read all the articles.
[00:05:47.850]Some people in the past have said he has OCD.
[00:05:52.920]Others say he's superstitious.
[00:05:56.290]But what he says about his rituals
[00:05:59.440]is that they provide him increased focus,
[00:06:05.800]an increased ability
[00:06:07.160]to visualize what he's going to do next,
[00:06:11.370]and that they decrease his stress level
[00:06:13.890]and his anxiety level.
[00:06:15.990]So it's definitely worthwhile watching his rituals,
[00:06:20.410]which are pretty intense,
[00:06:23.010]and reading about his perspective
[00:06:27.330]on how important they are to his mental health.
[00:06:33.320]So using that as kind of a backdrop,
[00:06:36.390]let's think about what RRBs look like in autism.
[00:06:41.130]So the first thing we need to realize
[00:06:44.430]is that they're broad in scope,
[00:06:47.840]that every individual that has a diagnosis may present
[00:06:52.850]with these behaviors in their own unique way,
[00:06:59.220]and that one size doesn't fit all, okay.
[00:07:05.160]This is on my desk:
[00:07:06.697]"As long as everything is exactly the way I want it to be,
[00:07:09.870]I'm totally flexible."
[00:07:11.400]And I attribute that to having a birthday in September,
[00:07:14.710]but whatever.
[00:07:16.630]All of us have intense rituals as part of our personality.
[00:07:23.870]And what's different in children with autism,
[00:07:27.150]again, is the intensity.
[00:07:30.330]Okay, all of us have repetitive behavior.
[00:07:35.830]You may, as you're watching me,
[00:07:37.690]wanna count how many times I do this,
[00:07:39.970]which is a nervous habit.
[00:07:41.840]Or I'm rubbing my pants as I'm talking to you
[00:07:47.770]to try to stay calm and focused, okay.
[00:07:53.090]The other thing that's interesting about rituals
[00:07:55.450]is you go onto any parent blog,
[00:07:59.300]parents of children who have a diagnosis
[00:08:04.210]being on the spectrum.
[00:08:06.430]And all of the questions of parents
[00:08:09.460]of young children are these whys.
[00:08:12.950]Why are they obsessed with trains?
[00:08:16.870]Why won't he change from winter to summer clothes?
[00:08:21.430]Why must we always go
[00:08:23.640]through the same fast-food drive-through every day
[00:08:28.110]at three o'clock?
[00:08:30.240]Why does he shake things?
[00:08:32.020]Why does he pace?
[00:08:33.940]Why does he insist on having the Amazon logo printed out
[00:08:38.250]a thousand times in his room?
[00:08:40.280]Why does he ask me every single day the same question
[00:08:43.350]when I've already answered it a thousand times?
[00:08:46.460]Why, why, why?
[00:08:50.800]And so again, every child is gonna be uniquely different,
[00:08:56.470]but the one thing that we want to agree upon
[00:09:00.460]as we move forward in this webinar
[00:09:03.560]is that there's a difference between being concerned
[00:09:09.090]about a behavior and wanting a behavior to go away.
[00:09:16.810]Okay.
[00:09:17.900]I only focus,
[00:09:20.050]and the rest of our discussion is only gonna focus,
[00:09:23.840]on repetitive and restricted behaviors
[00:09:28.450]that do one of three things.
[00:09:31.410]They interfere with the individual's ability to learn,
[00:09:37.130]or they interfere with their ability to communicate
[00:09:41.850]and socially interact with others,
[00:09:45.860]or they are so intense
[00:09:50.630]that it interferes
[00:09:52.620]with that individual's emotional wellbeing.
[00:09:57.770]If it's something that they enjoy doing,
[00:10:03.010]or it doesn't interfere,
[00:10:06.260]like right now, this may bother you,
[00:10:09.920]but it's not bothering me.
[00:10:11.700]It's helping me.
[00:10:14.740]We need to separate out behaviors of concern
[00:10:18.980]that we want to assist the individual
[00:10:22.350]and behaviors that just are a part of their personality.
[00:10:27.820]Okay, I'm gonna quickly, quickly move
[00:10:31.890]through all these different examples.
[00:10:34.710]So when we look at a child that has a diagnosis
[00:10:39.500]of autism spectrum disorder using the DSM-5,
[00:10:44.740]they put restricted and repetitive behaviors
[00:10:48.450]into four subcategories.
[00:10:50.810]The most common ones are stereotypies,
[00:10:55.255]okay, so a child that moves their body in a repetitive way,
[00:11:01.840]hand-flapping or rocking, a child that spins things,
[00:11:07.480]always wants to spin things, reaches for things,
[00:11:11.170]and the first thing that they do is spin them.
[00:11:14.120]And in this situation,
[00:11:15.640]we wanna make a distinction between a child who spins it
[00:11:18.810]because they think it's funny and fun,
[00:11:21.280]and they can stop when you ask them to stop
[00:11:24.610]and Sara, who when you try to redirect her,
[00:11:30.040]gets extremely upset.
[00:11:33.140]She starts clapping her hands almost to the point
[00:11:35.870]of hurting herself and jumping up and down intensively
[00:11:39.560]when she's told to stop.
[00:11:42.790]Here's Maria.
[00:11:44.190]All of these children are children that I have worked with
[00:11:48.320]and hopefully parents agree I've helped.
[00:11:51.400]But Maria was a child who asked a thousand times,
[00:11:56.510]no exaggeration, a day, "Chocolate milk?
[00:11:59.560]Chocolate milk?
[00:12:00.630]Chocolate milk today?
[00:12:01.520]Chocolate milk today?"
[00:12:03.360]And every single day, she got it for her snack
[00:12:05.900]and for her lunch and for her afternoon snack.
[00:12:10.140]But she kept asking, and if the adult didn't say,
[00:12:14.537]"Yes, chocolate milk today,"
[00:12:17.650]she would scream louder and louder and louder.
[00:12:21.570]So it was distressing.
[00:12:23.150]It got in the way.
[00:12:27.550]The second category are this,
[00:12:31.320]what we call resistance to change,
[00:12:34.640]a child who gets extremely distressed
[00:12:37.690]when there are really small changes
[00:12:40.160]or what we consider to be small changes,
[00:12:43.080]or have trouble transitioning.
[00:12:46.040]Okay, lots of different rituals.
[00:12:49.250]So, for example, Larry was in third grade,
[00:12:55.660]and when we looked at his intense self-injury
[00:13:01.970]and when it occurred,
[00:13:04.050]it occurred when he wanted to complete something,
[00:13:09.010]and he was resistant to leaving.
[00:13:11.180]So there's a math paper, 10 problems.
[00:13:15.210]If the teacher said, "Put your paper away to do later,"
[00:13:19.250]he would start screaming, "No, there are 10!
[00:13:21.715]No, there are 10!
[00:13:22.548]No, there are 10!" and then start hitting himself.
[00:13:26.360]Okay, so again, emotional distress
[00:13:29.550]around being a little bit more flexible.
[00:13:35.050]Being very kind of fixated on something.
[00:13:39.550]Now, the good thing is there's this growing body
[00:13:42.900]of literature saying we can use children's interests
[00:13:47.370]as a motivator, which is really wonderful.
[00:13:49.980]So it's like, if you love trains, then count trains in math.
[00:13:56.900]If your favorite character is Mickey Mouse,
[00:14:00.620]then use Mickey Mouse tokens
[00:14:05.600]in your behavior contract token board.
[00:14:08.150]I mean, there are a lot of really fun ways
[00:14:10.620]in which we can use children's interests.
[00:14:16.833]If you love counting, you can do art projects
[00:14:22.000]and add in numbers,
[00:14:24.180]make numbers into shapes and other figures.
[00:14:27.620]There's an unlimited number of things that we can do
[00:14:30.470]with children's interests,
[00:14:33.020]shaping them into other things or using them as is, okay.
[00:14:38.710]So here, my friend John was a young man
[00:14:43.120]who had got extremely agitated when he was told to stop.
[00:14:49.750]Again, there's this recurring theme here.
[00:14:53.490]This is his drawing of all the state birds
[00:14:56.380]in the United States with the exact number
[00:14:58.870]of how many existed and the last time people checked.
[00:15:02.720]And he would talk about it incessantly,
[00:15:05.100]write about it, draw about it.
[00:15:08.580]Okay.
[00:15:11.150]One of the most complicated situations I was ever confronted
[00:15:14.840]with was Stephanie, who I met when she was six years old,
[00:15:20.400]and she arrived at school.
[00:15:22.240]She probably weighed 30 pounds,
[00:15:24.390]and she carried 30 pounds of red things,
[00:15:28.870]pieces of paper, ribbons.
[00:15:31.030]Anything red was in her backpack,
[00:15:34.530]and her tantrums and self-injury emerged
[00:15:38.320]when anyone tried to touch one of those things.
[00:15:42.640]Okay.
[00:15:44.020]And then a more common way
[00:15:47.150]that RRBs manifest themselves
[00:15:50.750]is how individuals kind of react
[00:15:54.950]to different things that they're sensing,
[00:15:59.380]either an unusual reaction to pain or smell
[00:16:06.070]or wanting to repetitively see lights go on and off.
[00:16:11.060]And then I've just highlighted down the bottom self-injury
[00:16:14.850]because the more recent research
[00:16:17.360]has now put self-injurious behavior
[00:16:21.150]in the category of repetitive and ritualized behavior,
[00:16:27.610]which I'll talk about a little bit more
[00:16:29.300]as we move through this.
[00:16:32.300]But here, just some more examples of children that I know
[00:16:36.240]and children and families that I've worked with.
[00:16:41.500]Michael insisted on,
[00:16:44.070]had a ritual of squeezing pasta between his fingers,
[00:16:47.470]and he only ate pasta and bread three times a day.
[00:16:53.350]We see common behavioral challenges linked
[00:16:57.410]to rituals around difficulty sleeping,
[00:17:03.160]rituals around having bowel movements,
[00:17:05.900]rituals around grooming.
[00:17:12.330]I know one individual who,
[00:17:16.020]we always talk about children who are resistant
[00:17:18.330]to toothbrushing,
[00:17:19.670]I know another teenager who went through a toothbrush a week
[00:17:23.490]because he insisted on, he was taught to count
[00:17:29.750]when he learned to brush his teeth,
[00:17:31.870]and now he does it and won't stop.
[00:17:34.530]So he went through toothbrushes like crazy,
[00:17:39.070]or routines around what you travel with,
[00:17:43.780]what you carry with you.
[00:17:46.060]All of these things are really family's number-one concerns
[00:17:51.210]and very important for us
[00:17:53.060]to respect the family's perspective
[00:17:56.340]and make sure that all intervention plans,
[00:18:00.370]whether it's homeschool or community,
[00:18:03.180]are addressing these family concerns.
[00:18:08.280]Self-injury sometimes starts as a ritual.
[00:18:13.170]I mean, again,
[00:18:17.382]this could easily become hair pulling
[00:18:22.870]if I was stressed enough.
[00:18:26.080]So we wanna always look at kind of the history
[00:18:30.250]of self-injury as well as other rituals
[00:18:33.310]to try to figure out where they started,
[00:18:37.270]when they're most likely to occur.
[00:18:41.000]Jorge's self-injury was very unique
[00:18:45.850]to shopping with mom.
[00:18:50.770]And he would do it almost as a pattern.
[00:18:53.800]I've seen children kind of have a ritual
[00:18:56.620]of how many times they count before they move to the next,
[00:19:01.340]and if someone tries to physically prompt them,
[00:19:04.300]it then resorts in more agitation and self-injury.
[00:19:09.630]So rituals are frequently what I have on the slide here,
[00:19:13.450]it says RRB chain.
[00:19:15.660]Rituals are frequently parts.
[00:19:19.070]They start as a,
[00:19:23.410]We wanna look at the very, very beginning of how it starts,
[00:19:27.770]like what the trigger is,
[00:19:30.500]what are the subtle signs of agitation that then build
[00:19:35.790]because it's those more subtle rituals
[00:19:38.970]that oftentimes give us insight into the why,
[00:19:44.670]which is a perfect lead in to the issue around assessment.
[00:19:50.920]So anytime we're doing a behavioral assessment,
[00:19:55.190]most of you are used
[00:19:56.760]to kind of doing functional behavior assessments.
[00:20:01.870]Behavior analysts use them all the time.
[00:20:06.150]Oftentimes if there are time constraints,
[00:20:09.500]people will do what's called a functional analysis,
[00:20:12.500]where they try to quickly figure out what's motivating it.
[00:20:17.250]I don't recommend that to really getting to the core
[00:20:21.300]of what's happening with rituals.
[00:20:23.450]I think if we're really talking about trying
[00:20:26.480]to support the individual's mental health,
[00:20:31.770]we need to recognize that for the majority of the time,
[00:20:37.330]it is a coping mechanism
[00:20:40.990]and that they're being disruptive
[00:20:44.120]and under emotional distress for a reason.
[00:20:48.430]And it is our ethical responsibility
[00:20:51.270]to understand what that reason is
[00:20:54.860]and to then give the individual other tools.
[00:20:58.490]And so for that reason,
[00:21:00.070]I don't recommend a functional analysis,
[00:21:04.650]a quick one, a brief one being done
[00:21:07.610]for any ritualized behaviors or behaviors that fall
[00:21:11.120]into any of those subcategories we've looked at
[00:21:15.890]because the reasons are broad.
[00:21:19.470]And if you identify the wrong reason,
[00:21:23.300]or you try to oversimplify a situation,
[00:21:28.740]it can do more harm or be less productive.
[00:21:33.470]So remember it can be one or more of these reasons.
[00:21:41.120]It may be a sign of a proactive way
[00:21:45.070]that the individual like me right now,
[00:21:47.770]I'm doing it to stay calm and increase my focus
[00:21:53.090]so that I can get through my slides
[00:21:55.600]in the designated amount of time, okay.
[00:22:01.100]In the past, when I was less comfortable presenting
[00:22:05.740]in really large groups, my pacing
[00:22:09.190]and playing with my hair was to decrease my stress
[00:22:12.710]and my level of being really uncomfortable as a speaker.
[00:22:18.910]Other times, we've talked about how rituals are done
[00:22:24.190]because they're meaningful.
[00:22:25.300]They're pleasurable.
[00:22:26.290]Exercise feels good.
[00:22:28.330]For me, my ritual of drinking coffee first thing
[00:22:30.950]in the morning feels good, okay.
[00:22:36.660]Rituals are almost always a means of communication,
[00:22:41.840]and we'll look more closely at that in a minute.
[00:22:46.840]It frequently, for individuals with autism,
[00:22:51.160]is a red flag that they're confused about something
[00:22:55.120]or disorganized about something.
[00:22:57.900]And it can also well be
[00:23:01.820]a response to being hungry,
[00:23:04.560]uncomfortable, sleep-deprived.
[00:23:08.450]In fact, those that have done very basic FAs
[00:23:13.900]or FBAs almost always find rituals to be sensory-based
[00:23:22.170]or pain-based.
[00:23:24.350]And then it automatically forces you into really looking
[00:23:28.590]in more detail it at the cause.
[00:23:33.040]But again, every individual's gonna be different
[00:23:37.050]when you're doing an assessment,
[00:23:39.300]and I can have four teenagers,
[00:23:42.880]all who hurt themselves and rock and pace,
[00:23:46.930]and one's doing it because they're constipated,
[00:23:49.880]and they're in pain.
[00:23:51.350]Child number two is doing it
[00:23:53.620]in situations where things are loud, and they're anxious.
[00:23:57.970]Child three is doing it because they don't have another way
[00:24:04.100]of getting a person's attention.
[00:24:07.050]And child four is doing it
[00:24:09.630]because they're completely confused
[00:24:12.320]and don't know what's going on,
[00:24:16.110]okay, and how to ask for help.
[00:24:19.690]And so, as a result,
[00:24:22.710]we need to have additional questions
[00:24:26.520]that we ask in addition to our normal assessment process
[00:24:31.530]for other complicated behaviors.
[00:24:34.730]And you always go back to the first question,
[00:24:39.440]do we have to change this ritual?
[00:24:44.600]And really, everybody on the team has to be
[00:24:46.910]in agreement that it's a ritual
[00:24:50.160]or a restrictive interest that is truly interfering
[00:24:54.410]with learning and is emotionally distressful for the child.
[00:24:59.240]That has to be your first step,
[00:25:01.150]and if you say no, then I'm gonna keep doing this.
[00:25:05.670]I've been doing it for 30 years.
[00:25:07.310]I'm just gonna keep doing it, okay.
[00:25:10.330]So first of all, you need to ask yourself
[00:25:14.040]is intervention required,
[00:25:16.610]or do I just respect that that's part
[00:25:18.670]of the person's temperament or personality?
[00:25:23.790]And then if it is important that we have to remediate,
[00:25:29.430]like the examples that I showed you,
[00:25:33.710]I would have to ask four additional questions.
[00:25:38.830]Let me look at all the rituals
[00:25:43.140]that's part of that child's makeup, all of them,
[00:25:46.360]not just the one that's posing the problem,
[00:25:48.250]but all of them.
[00:25:51.260]I'm gonna ask about stressors,
[00:25:54.340]and, as you know,
[00:25:57.470]as educators and therapists and behavior analysts,
[00:26:03.354]we're told to make sure that we have data
[00:26:06.980]and objective information.
[00:26:08.670]But we can definitely objectify stressors in a child's life.
[00:26:14.770]Okay, and there are tools to do that.
[00:26:18.000]You do wanna find out from a common indirect assessment
[00:26:23.440]or observation what appears to be the basic function,
[00:26:27.900]but then moving beyond that,
[00:26:29.560]you wanna look at other internal,
[00:26:33.020]what's going on with the child's health,
[00:26:36.010]and external, what's going on
[00:26:38.000]in the child's life outside of the immediate events
[00:26:41.920]in the environment that may be contributing
[00:26:44.800]to patterns that we're seeing.
[00:26:47.910]Okay, these are the four things.
[00:26:50.950]I wanna know everything about what's part
[00:26:54.800]of that child's rituals.
[00:26:56.780]I wanna know possible stressors.
[00:26:59.880]I wanna know what keeps that child
[00:27:03.210]doing that behavior every single day.
[00:27:06.220]And I wanna know what other factors may be impacting them.
[00:27:11.640]And the way I go about doing that is with these scales,
[00:27:16.470]and these references will be in the bibliography
[00:27:22.230]that you have with the PowerPoint, okay.
[00:27:27.330]So these are the scales that I do
[00:27:30.610]or the interviews that I do with the people
[00:27:33.160]that know the child the best.
[00:27:36.040]And I want information from family and from school
[00:27:40.100]and from home-based providers.
[00:27:41.790]I want as much information as possible
[00:27:45.680]to help guide my understanding of the why, okay.
[00:27:51.440]What other rituals are in their repertoire?
[00:27:54.420]What's their level of stress?
[00:27:57.550]There's a wonderful new tool as of 2020
[00:28:02.080]by Dr. Bodfish called the Behavior Inflexibility Scale.
[00:28:06.610]That's an awesome tool.
[00:28:08.420]And then you use something like Brian Iwata's FAST
[00:28:12.040]to really look at other factors, current and past,
[00:28:16.070]that may be impacting the child's behavior.
[00:28:22.640]Hopefully you're still with me.
[00:28:25.890]And if there's one thing
[00:28:28.560]that I want you to leave with today, and just one,
[00:28:33.190]it's this slide.
[00:28:36.670]Because thanks to colleagues,
[00:28:41.480]we looked at 18 cases of teenagers
[00:28:47.810]that we were asked to consult on
[00:28:50.400]that had really, really complicated profiles
[00:28:55.400]that included intense rituals that interfered
[00:29:00.040]and intense self-injury.
[00:29:03.720]And we went through the whole assessment process,
[00:29:07.780]and we started to look at patterns,
[00:29:11.048]patterns of common triggers
[00:29:15.550]because we wanna look at in what situations,
[00:29:19.550]one of the things that I tell my graduate students
[00:29:22.150]all the time about assessment is,
[00:29:24.650]yes, you want as much information
[00:29:27.140]about when a problem behavior happens.
[00:29:33.270]But make sure you have equal amount of information
[00:29:36.720]around when it does not happen.
[00:29:41.570]Who were they with?
[00:29:42.670]Where are they?
[00:29:43.590]What are they doing when the behavior does not happen?
[00:29:47.590]What's the history?
[00:29:49.470]How did that behavior evolve over time?
[00:29:53.280]And again, I'm talking about a level
[00:29:55.590]of detailed assessment that was required
[00:29:58.840]because of the intensity and unsafeness
[00:30:04.950]of these clients that we were working with.
[00:30:10.160]And so a pattern emerged among the 18 teens,
[00:30:16.860]and I wanna highlight a couple of them.
[00:30:21.480]The most common reason
[00:30:25.050]why individuals engaged in rituals
[00:30:30.470]or self-injury was because of some physical reason,
[00:30:37.120]whether that be headache or constipation
[00:30:42.180]or strep throat or a toothache.
[00:30:46.410]There was actually even one young man who,
[00:30:51.180]it started with tooth pain.
[00:30:57.330]The tooth issue was handled,
[00:31:00.740]but now he connected eating certain foods
[00:31:05.060]with having had tooth pain in the past.
[00:31:08.530]And so even though the tooth was taken care of,
[00:31:12.000]when he was presented with certain foods,
[00:31:15.690]he would say, "Not right now, not right now."
[00:31:21.650]And it was really impossible until we went
[00:31:26.210]into a more detailed analysis to figure out
[00:31:30.140]that he was afraid that that food was gonna hurt.
[00:31:36.480]Okay.
[00:31:37.710]And so, and a headache.
[00:31:40.110]Until I was able to ask the parent
[00:31:43.730]about the child's sleep, and the parent said,
[00:31:48.727]"Oh, he'll wake up in the middle
[00:31:50.050]of the night, hitting his head,"
[00:31:52.450]we know that it's not a social trigger.
[00:31:56.940]We not know that it's not something happening
[00:31:59.330]in the immediate environment.
[00:32:01.800]It's pain.
[00:32:05.000]So that is one thing that definitely has to be explored
[00:32:10.010]and ruled out when you're looking at the history
[00:32:13.900]of these intense rituals.
[00:32:16.890]The second most common thing,
[00:32:19.300]which I find very interesting, is number 10,
[00:32:25.230]when people touched or moved something without warning.
[00:32:31.220]So we turn off the TV.
[00:32:35.400]We take away the iPad.
[00:32:39.000]We tell the student,
[00:32:40.947]"It's time to put away your math paper."
[00:32:45.550]We touch or move things,
[00:32:47.810]or we tell them to end something unexpectedly
[00:32:53.710]from their perspective.
[00:32:56.060]And that was a big trigger.
[00:33:00.380]The other big trigger were people coming and going,
[00:33:07.030]things coming and going, school buses not arriving on time,
[00:33:12.380]the speech therapist not arriving on time,
[00:33:15.320]the person leaving, a favorite person leaving: "Bye."
[00:33:22.320]Daddy leaving, Daddy not being home for bedtime,
[00:33:25.890]all of those missing people, missing things,
[00:33:33.580]without the ability to say,
[00:33:37.577]"Where's Daddy?" or "Why is Daddy not here tonight?"
[00:33:41.220]Or "When am I gonna be able to watch SpongeBob again?"
[00:33:47.120]Without those communication skills, those were the triggers,
[00:33:51.580]the most common triggers.
[00:33:55.010]And so here was Charlie,
[00:33:58.720]whose screaming and aggression
[00:34:01.820]and then hair pulling, his own and other's,
[00:34:05.720]happened when Dad's work schedule changed.
[00:34:14.000]And then one of my most favorite kids, John, who,
[00:34:20.130]his were more complicated 'cause they were cyclic in nature.
[00:34:24.060]So he would have a month of hand rubbing
[00:34:28.610]and screeching that almost sounded
[00:34:31.600]like a Tourette's screech,
[00:34:35.020]and then pacing and then jumping.
[00:34:39.020]But he would have those prior to aggressing,
[00:34:43.220]but I was a only called in on the case
[00:34:46.220]when it then built up into scratching his torso,
[00:34:52.280]biting his hand, to cause tissue damage.
[00:34:57.050]And we were able to identify the relationship
[00:35:01.010]between those behaviors and the death of his grandfather
[00:35:05.130]and then the immediate trigger of people coming and going.
[00:35:13.260]So, assessment.
[00:35:16.020]The more complicated the problem,
[00:35:20.030]the more complicated the assessment needs to be
[00:35:22.830]or the more multilayered the assessment needs to be.
[00:35:28.920]And so by looking at, as you're thinking right now,
[00:35:34.210]oh my God, all those questions, all those things,
[00:35:37.320]ask yourself how much time, physical, emotional,
[00:35:43.710]are you putting into the responding
[00:35:47.720]to the child when these issues emerge
[00:35:52.770]versus how much time are you willing to put
[00:35:55.590]into the detective work?
[00:35:59.860]And similarly, whether or not you have the capability
[00:36:05.820]or the time to do that assessment work,
[00:36:08.620]realize that while there is a lot of research
[00:36:14.640]that is largely single-case studies
[00:36:18.200]on interventions for self-injury or rituals,
[00:36:26.790]that the only thing that people are in agreement with
[00:36:31.370]is that the intervention has to be multi-layered,
[00:36:34.810]meaning that there has to be lots of pieces that are done.
[00:36:41.270]And I do three pieces for every plan, sometimes four.
[00:36:47.400]We're only gonna be looking at the first one,
[00:36:50.520]the first three.
[00:36:52.930]So,
[00:36:55.650]I'm not going to do a lot of reinforcement procedure,
[00:37:01.410]like put a child on a reinforcement program
[00:37:05.100]for not engaging in a ritual.
[00:37:08.030]I have found that backfires.
[00:37:12.299]One of the boys that I've known,
[00:37:17.040]to tell you how old I am, I've known him for 30 years,
[00:37:20.560]since the time he was diagnosed.
[00:37:23.480]And when he was little, he did a lot of verbal self-talk.
[00:37:31.010]And I was stupid back then, and so it was like,
[00:37:36.230]oh, we'll just reward him for being quiet.
[00:37:40.760]And that may work for some kids,
[00:37:44.480]but for Ben,
[00:37:47.030]he definitely wanted the prize
[00:37:51.410]at the end of the day.
[00:37:53.310]But by the end of day two, he started hurting himself
[00:37:58.640]and saying, "Stop it, Ben.
[00:38:00.040]Stop it, Ben,"
[00:38:02.810]'cause he honestly couldn't stop himself
[00:38:04.950]from those verbal rituals.
[00:38:08.774]And it quickly became self-injury.
[00:38:13.540]And so we had to change from quiet in his mind,
[00:38:17.890]which meant don't say it,
[00:38:20.530]to quiet which meant turn the volume down
[00:38:23.770]so that you think it.
[00:38:26.490]We just don't wanna hear it,
[00:38:31.830]which is another whole webinar in and of itself,
[00:38:34.500]to talk about stimulus control programs.
[00:38:37.750]But for my purposes here,
[00:38:41.450]I'm gonna do what's called mostly antecedent management.
[00:38:45.260]I am gonna do a ton of accommodations,
[00:38:51.590]always non-contingent reinforcement,
[00:38:54.840]which means you're reinforced at random,
[00:38:59.400]and it's not contingent on being quiet
[00:39:02.320]for a set amount of time.
[00:39:03.830]It just is when things are working.
[00:39:10.220]And I'm going to do a lot of teaching,
[00:39:14.560]teaching what to do if you're anxious,
[00:39:18.380]teaching new routines,
[00:39:21.620]using lots of visuals to clarify who, what, when, and when
[00:39:25.930]and why and where.
[00:39:28.930]And so they're the things that we're gonna look at
[00:39:32.040]for the time that we have left, all right.
[00:39:35.720]Visuals are a whole lot more than schedules.
[00:39:42.200]Visuals are when, when.
[00:39:47.730]If I walk in at any point in time, I ask myself,
[00:39:52.820]does the child know when he gets to do what he wants to do?
[00:39:58.120]Does the little boy that wants to finish the math sheet
[00:40:01.230]know when he's gonna finish the math sheet?
[00:40:04.410]And is that visually clear?
[00:40:08.680]If someone is leaving, and there's gonna be a transition,
[00:40:14.880]how long before I see them again?
[00:40:17.900]And we can visualize how long
[00:40:21.110]through anything from timers to schedules to,
[00:40:28.190]any other way that works for that child, some visual way.
[00:40:33.030]Some kids are picture-based.
[00:40:36.000]Some are written-based.
[00:40:38.910]It's whatever way helps them understand
[00:40:43.330]when they're gonna see somebody again.
[00:40:46.220]So for example, for every single schedule I set up for kids,
[00:40:50.140]it not just lists the activity.
[00:40:52.170]It lists who they're gonna be with,
[00:40:55.540]who they're gonna be working with,
[00:40:56.780]who they're gonna be playing with,
[00:40:57.950]who they're gonna be in the car with.
[00:41:04.010]So always clarifying those people
[00:41:06.660]'cause remember it was the people
[00:41:08.187]and the things that were the biggest triggers for kids.
[00:41:13.300]And then we can't make life perfect.
[00:41:17.160]The argument against these types of accommodations is,
[00:41:20.640]well, life happens.
[00:41:22.530]And that's right, life does happen.
[00:41:24.870]So I need to teach children,
[00:41:28.200]and I do it from the time I meet them
[00:41:30.190]when they're very little of,
[00:41:32.500]what do you do when there's an uh-oh?
[00:41:34.690]What do you do when there's a sudden change?
[00:41:38.050]And it's usually some type of object
[00:41:43.440]or actions.
[00:41:46.860]So for one guy who was extremely distraught
[00:41:51.070]with people coming and going, he also,
[00:41:55.840]his mom had taken him to karate.
[00:41:59.570]And so he loved doing this karate move.
[00:42:04.810]So his mom decided that when the unexpected happened,
[00:42:08.350]they would just say, "Sam, namaste."
[00:42:14.750]And he knew, he may not know what else is happening,
[00:42:19.110]but he knew eventually he was gonna be okay,
[00:42:21.520]that everything was gonna be okay.
[00:42:25.770]So, those types of tools.
[00:42:28.130]But I will tell you that if we wanna help kids,
[00:42:32.830]for children that supposedly have a social impairment,
[00:42:37.380]which just means their interactions are different,
[00:42:41.020]the level of attachment is the same for these children,
[00:42:44.840]if not more.
[00:42:47.960]They really, really value the people in their lives,
[00:42:53.410]and they wanna know when they're gonna see you again.
[00:42:57.080]There was one of the little girls who was,
[00:43:00.670]her obsession about having 30 pounds of red things,
[00:43:05.490]the trigger was people coming and going.
[00:43:09.560]And so everybody had a picture inside a red heart,
[00:43:16.030]and they would hand that to her when they were leaving
[00:43:21.230]and take it from her when they came back.
[00:43:23.940]And as she accumulated these red things
[00:43:26.560]of knowing all the people in her life
[00:43:28.560]that were coming and going,
[00:43:30.840]her willingness to give up all those other red things
[00:43:35.860]decreased with time.
[00:43:39.150]It's so important.
[00:43:41.840]We know, and I'm sure you've heard before
[00:43:46.200]about how we wanna clarify everything
[00:43:51.520]that helps kids with transitions,
[00:43:55.360]from having them carry things
[00:43:57.430]to having them know how much they need to do.
[00:44:03.360]Again, what I'm finding is that rituals
[00:44:06.790]are often the beginning,
[00:44:09.970]the beginning of the child's way of communicating,
[00:44:16.977]"I'm confused.
[00:44:18.680]I'm not sure," either through their action,
[00:44:23.030]their subtle ritual, or a repetitive question.
[00:44:30.173]Or I need to turn to a familiar topic.
[00:44:35.410]One little boy shifted to his obsession about volcanoes
[00:44:42.620]as soon as the conversation got confusing.
[00:44:45.660]So it should be a window for us to say,
[00:44:50.980]oops, something doesn't make sense here.
[00:44:55.290]And again, ask yourself when does it not happen?
[00:44:59.020]When is the child the most focused?
[00:45:01.060]When are those rituals not happening?
[00:45:05.870]The more we can clarify, the better.
[00:45:11.580]The power of using video modeling,
[00:45:14.800]exercise is a great de-stressor.
[00:45:19.140]Exercise is now identified as an evidence-based practice
[00:45:24.270]that is beneficial in reducing the frequency
[00:45:27.900]and intensity of repetitive and ritualized behavior.
[00:45:33.950]So we can model.
[00:45:35.990]We can do exercise.
[00:45:40.090]I had a client
[00:45:42.620]who had intensive self-injury and aggression.
[00:45:48.200]He also lacked good exercise,
[00:45:51.490]and he required two adults with him at all times.
[00:45:56.110]But, boy, the hikes started to make a huge difference
[00:46:01.380]and became one of his favorite things to do.
[00:46:05.030]So, movement is important.
[00:46:09.470]Teaching other routines, providing an alternative.
[00:46:15.180]Occupational therapists are great
[00:46:17.160]at helping us identify what is the sensory issue
[00:46:22.390]for the child and how can we find a replacement?
[00:46:26.520]So, Philip was a 12-year-old
[00:46:30.380]who played with everybody else's hair,
[00:46:33.050]and when he was little, nobody minded.
[00:46:35.510]But as he got older,
[00:46:36.670]he started approaching other teenage girls,
[00:46:39.080]and it just wasn't okay.
[00:46:42.290]So we found him a replacement object
[00:46:47.090]that he carried in his pocket that fulfilled that same need,
[00:46:52.690]just redirect him to that.
[00:46:58.250]Giving kids opportunities
[00:47:00.880]for getting away from situations that are hard.
[00:47:04.880]Most of you know the importance of teaching kids
[00:47:09.180]that, yeah, it's okay to ask for a break.
[00:47:15.080]Agitation sometimes is confusion.
[00:47:17.790]Too often we say behaviors are escape behaviors,
[00:47:21.100]and I always say,
[00:47:21.933]"Okay, what are they trying to get away from?"
[00:47:25.865]There's a reason.
[00:47:27.739]So how are we gonna make it clearer?
[00:47:30.240]How are we gonna give them a proactive way of leaving?
[00:47:36.470]I love the incredible five-point scale,
[00:47:39.100]and I've modified it for many of our kids,
[00:47:41.781]using their strong interests.
[00:47:44.090]So this little girl was obsessed,
[00:47:49.360]and I used that in the lay term of obsessed,
[00:47:52.370]obsessed with Mario.
[00:47:54.980]So we changed the five-point scale to help her identify,
[00:48:01.460]and we identified each of the Mario characters
[00:48:05.420]with being in control and being calm
[00:48:10.270]because when she was out of control,
[00:48:16.180]it manifested itself in some distressful rituals.
[00:48:21.660]And we gave her tools to use, and we practiced them.
[00:48:26.440]And we practiced them using the characters,
[00:48:28.880]and a really great story.
[00:48:30.720]These aren't quick fixes.
[00:48:33.100]It took her a year
[00:48:35.760]of us reviewing them with her every day.
[00:48:39.180]She was a fourth-grader,
[00:48:41.570]academically understood the complexity of the language here
[00:48:44.910]'cause you have to set it up to make sure
[00:48:47.660]that the language that you're using
[00:48:49.660]when you're teaching kids skills is consist
[00:48:52.430]with their comprehension level.
[00:48:55.610]So, she understood it,
[00:48:57.710]but there was a big gap between understanding what to do
[00:49:01.480]and being able to do it in the situation,
[00:49:04.080]as is true of all of us.
[00:49:07.200]So, it took her a good year
[00:49:11.740]before she able to say how she felt.
[00:49:15.750]I'm feeling like, I can't remember the character's names,
[00:49:20.144]but I'm feeling like character blip,
[00:49:23.763]and I knew I needed help to role play what to do
[00:49:27.810]to help calm down.
[00:49:29.450]But the cool thing was when I visited her
[00:49:32.070]probably two years later,
[00:49:35.400]she had incorporated this into her repertoire.
[00:49:39.970]And when I visited her,
[00:49:42.600]it just so happened that a typical peer was arguing
[00:49:49.870]with the teacher, and she looked at me,
[00:49:53.277]and she so said, "He looks like he needs a Mario scale."
[00:50:00.110]And I thought, oh, how awesome.
[00:50:04.070]She's able to observe that in others
[00:50:08.050]and identify what they need.
[00:50:09.760]How cool is that?
[00:50:13.170]So there are lots of tools out there that we can modify.
[00:50:16.980]We wanna build on the kids' strong interests
[00:50:21.000]in as many ways as we can, building in these.
[00:50:27.440]And then the last thing that I wanna talk about is,
[00:50:30.280]so, it may take a year to change behavior.
[00:50:33.770]What do we do in the interim
[00:50:35.750]when we're confronted with rituals,
[00:50:41.390]especially those that may develop into unsafe behavior?
[00:50:46.620]So we know that safety is number one, okay,
[00:50:50.800]but some of my general rules of thumb,
[00:50:53.560]and you have to individualize that.
[00:50:55.810]Please do not take any of this as a recommendation
[00:51:00.470]for what you must do
[00:51:01.880]or what you're going to do with an individual child.
[00:51:05.020]The treatment has to be driven by good assessment
[00:51:10.190]and looking at a history of what's worked
[00:51:12.230]and what's not worked, okay.
[00:51:15.310]In general, when there is a ritual
[00:51:20.210]that's not doing immediate harm,
[00:51:23.910]I'm not gonna tell the child to stop without warning.
[00:51:28.920]I'm gonna set up a new ritual
[00:51:32.960]of how and what I say or show them.
[00:51:36.620]So I may walk over and say,
[00:51:40.657]"Sam, I'm gonna help you.
[00:51:44.610]I'm gonna count to five.
[00:51:47.310]Five, four, three, two, one.
[00:51:52.290]I'm ready to help you."
[00:51:54.350]Then, then, I may tell them it's time to stop
[00:52:00.870]and show them what it is that they need to do
[00:52:04.730]and how they can make the transition.
[00:52:07.600]But I'm gonna first establish a real consistent routine
[00:52:11.950]of how I support the child when they start to struggle.
[00:52:18.080]I always want to tell them what they can do instead.
[00:52:24.630]We're not going to just stop, okay.
[00:52:28.540]You're not gonna just stop drawing.
[00:52:31.550]I'm gonna say to them,
[00:52:33.347]"We're gonna put your beautiful birds in this box
[00:52:39.210]for you to do after lunch.
[00:52:42.330]Now it's time for lunch.
[00:52:44.420]We're gonna have lunch.
[00:52:45.980]And when you come back,
[00:52:47.360]the box will be here for you to do the birds."
[00:52:50.150]There's gonna be a real clarification, okay?
[00:52:56.470]There's gonna be clarification
[00:52:58.810]around the amount of time that he has.
[00:53:02.950]He's gonna be able to choose
[00:53:04.660]at the beginning of the day when he can
[00:53:06.910]and cannot do his birds.
[00:53:08.570]There's gonna be a lot of options built in.
[00:53:13.550]Okay.
[00:53:15.530]And the other thing that I'm gonna make sure
[00:53:18.630]that I do is to focus on
[00:53:23.620]rewarding and complimenting whatever replacement skills.
[00:53:27.730]So if it's exercise, a ton of rewards around exercise.
[00:53:32.130]If it's acting like Mario,
[00:53:34.800]it's a ton of rewards for acting like Mario.
[00:53:38.750]If it's using the hair brush
[00:53:41.750]instead of touching someone's hair,
[00:53:44.220]there's a gonna be a ton of that.
[00:53:46.457]But the focus is rewarding the alternative
[00:53:52.330]as well as non-contingent, intermittent access to rewards.
[00:54:00.780]I'm not gonna explicitly reinforce the absence
[00:54:06.940]of the ritual because it may backfire, okay,
[00:54:13.580]like the example that I told you about Ben scripting.
[00:54:20.520]So John, who was one of the more complicated kids,
[00:54:25.490]this is what his plan looked like.
[00:54:28.910]He did not require medication,
[00:54:31.030]even though his cycles were linked
[00:54:35.668]to kind of patterns of poor sleep.
[00:54:39.020]We made sure that there were more supports in place
[00:54:46.310]during those periods of time when he had poor sleep.
[00:54:50.270]And we could be more flexible
[00:54:53.940]in how intensely we did his intervention plan
[00:54:57.520]when he was sleeping well, okay.
[00:55:00.710]He definitely benefited from having
[00:55:04.010]on his phone a schedule of who he was gonna be with.
[00:55:09.770]That was really, really important.
[00:55:14.390]One of the other things that we taught him to say,
[00:55:18.980]we did communication training with him,
[00:55:22.690]we would teach him to say, "When are you coming back?"
[00:55:27.150]whenever there was a transition.
[00:55:28.710]If the person wasn't familiar with his plan,
[00:55:31.930]we taught him every time someone left,
[00:55:34.310]you say, "Wait, I have a question.
[00:55:36.370]When are you coming back?"
[00:55:38.510]And that was the communication replacement
[00:55:41.010]to getting agitated.
[00:55:43.620]He had lots of choices.
[00:55:45.100]You see him with a backpack.
[00:55:46.490]He always had a backpack with him
[00:55:49.410]that contained all of those things.
[00:55:51.950]We made up a photo album for him
[00:55:54.960]so that he could see every single day,
[00:55:57.390]and all the photos were in these slots,
[00:56:00.450]so he could change them.
[00:56:02.090]He could see who he was gonna be working
[00:56:04.310]with that day at school.
[00:56:06.040]He would see who was gonna be home
[00:56:08.250]when he came home from school.
[00:56:11.140]We made an album about his grandfather.
[00:56:15.510]He struggled to kind of understand what gone forever meant
[00:56:21.580]in terms of his grandfather's passing.
[00:56:24.500]But we clarified for him, no grandpa today, sad.
[00:56:31.130]We put him on a more intensive routine,
[00:56:34.560]and he had a really variable schedule of reinforcement.
[00:56:40.700]So when I talk about replacement communication skills,
[00:56:45.040]those behaviors the audience know that I'm talking about,
[00:56:47.790]FCT, okay, what is it that they're gonna say?
[00:56:51.730]So his intervention plan included all of these elements.
[00:56:56.360]One, only one, would not work.
[00:56:59.870]Non-contingent reinforcement
[00:57:01.830]with clarifying who you're with not have worked
[00:57:05.100]in the absence of FCT.
[00:57:06.980]FCT alone would not have worked
[00:57:09.350]without all the other pieces.
[00:57:11.080]So what's really important is
[00:57:12.720]that intervention is multi-layered, okay.
[00:57:18.210]So, we often want immediate,
[00:57:24.280]simple solutions to repetitive behavior,
[00:57:31.920]complex, challenging behavior.
[00:57:34.630]It's unrealistic.
[00:57:37.530]There are not simple solutions
[00:57:39.750]to address the complexity of autism.
[00:57:42.820]We know that that triangle of social challenges,
[00:57:47.560]communication challenges, and rituals are all connected.
[00:57:53.840]They're all connected.
[00:57:56.690]So the focus of our multi-tiered intervention
[00:58:01.670]has to be teaching social clarity
[00:58:06.120]and giving the children communication skills.
[00:58:11.290]So it will have longterm benefits when you do this,
[00:58:16.600]but it takes time to work effectively.
[00:58:20.730]If you have a child with self-injury,
[00:58:23.430]you always put in place those mechanisms
[00:58:27.800]that keep the child safe,
[00:58:30.120]locking pads, protective equipment.
[00:58:32.870]You have a discussion with the doctor and the family.
[00:58:35.490]That is a given, an ethical given.
[00:58:39.610]But when we're talking about other forms of RRBs
[00:58:44.960]that frequently lead to aggression, tantrums,
[00:58:51.180]running away, elopement,
[00:58:54.380]by focusing on the things that start the chain,
[00:59:01.460]we will eventually help kids in many, many ways.
[00:59:08.300]So I think I timed this pretty well,
[00:59:12.390]and I thank you very, very much.
[00:59:16.340]My understanding is that you will have access
[00:59:18.920]to the PowerPoint,
[00:59:21.600]and you will have access to the bibliography
[00:59:26.530]with the five assessment tools that I recommend,
[00:59:29.860]the links to those.
[00:59:32.640]And I thank you again for the invite
[00:59:36.650]and hope that some piece
[00:59:39.300]of the discussion today was helpful.
[00:59:42.380]Bye.

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Precursor Behaviors to Self-Injurious Behaviors

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