Category: Uncategorized

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Making Mistakes is a Human Right: Dignity of Risk

If you have ever made a mistake, raise your hand (Hint: All hands should be raised). If you learned from your mistake, raise your hand (Hint: All hands should be raised). If your mistakes have helped shape you as a person, raise your hand (Hint: All hands should be raised). Unfortunately, neurodiverse individuals are rarely given that right. In my work in group homes, I often see staff/caregivers/guardians put restrictions in place so that the individual in their care does not make a mistake. I think we do it with good intentions, we don’t want to see them hurt or sick or sad. But, in taking away their right to make a mistake, we are also taking away their right to be human.

https://www.youtube.com/watch?v=1YNSgLcpG3o

According to Chris Lyons (an attorney who services individuals with disabilities), the right to make a mistake is important “ because it is at the core of our human dignity. I suggest to you that that which makes us most human is our ability to enjoy our successes by having the ability to own our own failures. It is that contrast, that yin and yang if you will, of human nature that allows us to truly be a person.” Self-Advocate, Max Barrows, expands on this when he talks to service providers and says, “Please don’t protect us too much or at all from living our lives. We are going to have to encounter failures through decisions that we make… it’s really the number one way of learning of where lines are drawn and also it helps with learning yourself. The dignity of risk is one of many opportunities that people with disabilities deserve to have.”

I’m not suggesting we throw caution to the wind and let all hell break loose. But I am suggesting that we ask ourselves “Is a nondisabled person allowed to do this?” If you had a stressful day at work and you want to eat a dozen donuts, you are allowed to. You are still allowed to eat a dozen donuts even if your doctor has advised against it. You are still allowed to eat a dozen donuts even if you should be saving your money for something different. You are allowed to make that mistake.

Would a nondisabled person be allowed to:

  • Eat Burger King everyday for lunch? YES
  • Drink lots of soda instead of water? YES
  • Get a tattoo? YES
  • Buy lottery tickets? YES
  • Get a piercing? YES
  • Skip medication? YES
  • Pick who they want to date? YES
  • Have a dirty room? YES

Later posts will talk about how to use antecedent interventions and client motivation to still teach while respecting an individual’s values.

Resources:

Youtube Video: Self-Determination: “Dignity of Risk”

Youtube Video: UVM Center on Disability and Community Inclusion

Youtube Video: Supporting a Resident’s Dignity of Risk

Article: “Balancing the Right to Habilitation with the Right to Personal Liberties: The Rights of People with Developmental Disabilities to Eat Too Many Donuts and Take a Nap” by Bannerman, Sheldon, Sherman and Harchik; Journal of Applied Behavior Analysis 1990)

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Who defines “Creepy”?

Question: How do you define “normal” behavior versus “creepy” behavior? Answer: It is all about intention

The other day I was trying to create a visual for a client that explained the difference between behavior that is “normal”, behavior that could come off as “creepy” and behavior that was “harassment”. I usually start by just making a list of behaviors and then sorting them myself into the different categories. Here is what I came up with:

However, as I am finding with most things, sorting behaviors into black and white categories isn’t feasible. Furthermore, it doesn’t teach skills. Now, here is why my list doesn’t work:

  • Going to someone’s house without being invited:
    • People come to my house all of the time even if they aren’t invited (someone selling girl scout cookies, my neighbors with my mail that was accidentally delivered to them, people from my church)-. Some of these people I may not want to see, but their behavior isn’t really creepy.
  • Giving gifts to someone without it being reciprocated
    • Some people are gift givers and some people aren’t. Someone may be giving lots of gifts because that is their “love language” and someone else may be reciprocating but in other ways (time together or words of affirmation).
  • Calling/texting multiple times a day without reciprocation
    • My husband has a bad habit of responding to my texts, but nonetheless I text him relentlessly. He doesn’t consider this creepy. My pharmacy sends my reminders and I never reciprocate those texts. And some neurodiverse individuals don’t respond to texts because they simply forget or are distracted. They may not consider your behavior of texting them multiple times a day as creepy.

The point is, someone’s intention is what makes their behavior creepy or not creepy. So, this is what I have learned:

  • Help the client identify what their intention is. I have noticed that we spend a lot of time getting neurodiverse individuals to identify other people’s intentions, but they often don’t know their own.
  • Talk about “normal” and “creepy” behaviors in the context of their intention. Make it personal.
  • Help them to understand and communicate when they are not feeling comfortable. If we are too black and white we may teach neurodiverse individuals that even if they feel uncomfortable they should stay in a situation because it technically hasn’t reached the neurotypical definition of creepy yet. It is important for all of us to understand that our level of comfort will be different from someone else’s and we should respect that even if we don’t understand it.
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Neurodiversity and Asking for Help Part 2

Last week I brought up one reason some neurodiverse individuals may not ask for help- they aren’t aware that they need help. Another reason why they may not ask for help is because of a fear of rejection. In my work with neurodiverse clients I usually start by asking them what they think about asking for help. I either have them fill in the blank or use a likert scale:

Many of my clients have said that they don’t ask for help because they don’t want to look stupid. In their mind, asking for help is admitting failure. Many neurodiverse individuals have Rejection Sensitivity Dysphoria. Rejection Sensitivity Disorder “is extreme emotional sensitivity and pain triggered by the perception that a person has been rejected or criticized by important people in their life. It may also be triggered by a sense of falling short—failing to meet their own high standards or others’ expectations.” So, when we are asking a neurodivergent individual with Rejection Sensitivity Disorder to ask for help, we are asking them to independently admit failure (sometimes publicly), while independently regulating intense emotions. Even if you don’t think this is hard, remember that neurodiverse individuals have different abilities and just because something is easy for you doesn’t mean it will be easy for them.

So, what do we do? First and most important, stop using shame to change behavior. Shame is a fear of feeling unworthy or not good enough. Individuals with Rejection Sensitivity Dysphoria already have a heightened anxiety around being rejected or not good enough. So, when we use shame to “teach” we are actually making things worse. Feeling shame can increase avoidant behaviors; essentially, you stop trying. Instead, we can:

This is from “Autism Level Up”. https://autismlevelup.com/whys-not-size-of-the-problem/

References:

https://www.additudemag.com/rejection-sensitive-dysphoria-and-adhd/

ADHD Experts Podcast #250 “Beyond Shame and Guilt: Transformative Strategies for Women with ADD” https://www.additudemag.com/adhd-expert-webinars-index/

https://autismlevelup.com/whys-not-size-of-the-problem/
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Activities for “Therapeutic Failure”

Using “Just Dance” to increase Executive Functioning Awareness

In the previous post I talked about helping increase executive functioning awareness by using a technique called “Therapeutic Failure”. Essentially, this is where you letting a child fail in a safe environment. I know it sounds negative to just let someone fail, so I wanted to share an activity I did with my social group involving this.

In our group we played “Just Dance”. Some people were familiar with the game and some people weren’t. While we were dancing there was a visual that showed you what the dance moves were supposed to look like. Because we were just doing the game over youtube I had to pause it everyone once in a while and ask them if their bodies looked like the ones in the video. Then we talked about if their performance was equal to the person in the video (meaning they did all of the moves correctly), if their performance wasn’t as good yet (YET being the key word!) or if their performance was above average.

I had a variety of responses:

  • Some individuals had average performance and noticed that they had average performance
  • Some individuals had less than average performance and were able to acknowledge that it was less than average (although their demeanor indicated they felt ashamed)(The individual may be between the first two levels of awareness, but shame and fear of rejection are getting in the way of them asking for help).
  • Some individuals had less than average performance and were not able to acknowledge it (The individual is still at the first level of executive functioning awareness and does not yet know that they actually need help).
  • Some individuals had a below average performance, were able to recognize it and were able to identify strategies that help their performance (This is Anticipatory Awareness. This is when we can expect an individual to independently request help).
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Neurodiversity and Asking for Help Part 1

You can’t ask for help if you don’t know you need help

One common concern I hear from parents of neurodiverse individuals is that their child won’t ask for help. There are a couple reasons why neurodiverse individuals may not ask for help. The first one is that the individual may not even know that they need help. They may not be aware of their deficits/differences. The picture on the right describes the three levels of executive functioning awareness. Before neurodiverse individuals can be expected to ask for help, they need to have an “anticipatory awareness” of their deficits.

If your child isn’t at this step yet, you can use “Therapeutic Failure” to help them get there.

  • Let them fail in a safe environment. Oftentimes, parents/teachers/staff help too quickly. When we are too quick to provide assistance, the individual will never know that they actually need help because they have never experienced that failure.
  • Give your child a task that you are fairly certain they cannot do on independently/correctly. As they are doing the task, do not help them (unless they are in danger of hurting themselves)
  • Wait for them to notice that they have done something wrong or don’t know how to do something.
  • Use “failure” as a time to teach and not a time to shame. Many neurodiverse individuals see asking for help or not doing something correctly as proof that they are failure. We can talk them through “failures” by praising their effort, grit and flexibility.

References: “Development of Executive functions” Second Edition by Jill K. Fahy and Gail J. Richard

https://www.proedinc.com/Products/31746/the-source-development-of-executive-functionssecond-edition.aspx

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Public and Private Places: Why it’s hard to teach and how to break the concept down

As I started teaching it I realized teaching the concept of public vs. private places was not as simple as I once thought. First, I will explain the basic concepts and then I will explain some of the more nuanced rules that will need to be taught as well.

  • Basic Concept 1: “Public” is any place where people are or where people could be.
  • Basic Concept 2: “Private” means any place where no one is and where no one should be (I will talk more about how this concept can be taught for individuals who require help with self-care needs in a separate post). 

Once individuals are able to identify these two concepts, we will start to introduce more nuanced rules.

  • Rule 1: A private place that is in a public place is still public
    • Example: A bathroom (which is usually private, if it is in your home) should be thought of as public if it is in a grocery store. This means that there are some things you cannot do in a public bathroom that you would be able to do in a private bathroom.
  • Rule 2: A private place is public if other people can see in it
    • Example: If the door to your bathroom at home is open it is now public. This means, there are certain things you cannot do now that the window is open
    • Tip: You may need to specifically teach all of the ways someone could see into a private place (e.g. curtains open, window open, room with a glass door, etc).
  • Rule 3: A public place that doesn’t have any people in it is still public
    • Example: An empty library is still public even if you can’t see anyone in it.
  • A Private place that is in a public place is still public
    • Example: A bathroom (which is usually private, if it is in your home) should be thought of as public if it is in a grocery store. This means that there are some things you cannot do in a public bathroom that you would be able to do in a private bathroom.
  • : A public place that doesn’t have any people in it is still public

  • Example: An empty library is still public even if you can’t see anyone in it.
  • A private place is public if other people can see in it
    • Example: If the door to your bathroom at home is open it is now public. This means, there are certain things you cannot do now that the window is openTip: You may need to specifically teach all of the ways someone could see into a private place (e.g. curtains open, window open, room with a glass door, etc).

    • References:

    My definitions of “Public” and “Private” were taken from the Elevatus Curriculum

    Curriculum: Sexuality Education for People with Developmental Disabilities
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    Using your Child’s Organizational Style to help them Succeed

    In my last post I talked about finding out your child’s organizational style. The reason we start with this is because the best way to help your child succeed is by creating an environment in which they can be successful. It’s like if we ask someone in a wheelchair to go to the 2nd floor of a building that only has stairs. We wouldn’t expect them to do that without environmental accommodations. It is the same thing with executive functioning skills. 

                So, if you found your child’s organizational style, here are some ways you can help arrange the environment they will be working in.

    Supports for Individuals with a “Visual Organizational Style”

    “Your child is sensitive to what she sees. If there are a lot of visual stimuli at her work area, she will be easily distracted.”(Kutscher and Moran)

    Motto: Out Of Sight, Out Of Mind

    • A backpack that has less pockets. The more pockets there are, the easier it is to lose things
    • A planner that is bright so that it is easy to find
    • Separate binders for each subject (this makes it easier to find items that are related to a specific subject. Lots of papers in one binder cause visual overload)
    • They may not like an accordion folder, because it has lots of pockets and can be overwhelming
    • They prefer single subject notebooks (a three subject one can be overwhelming)
    • They prefer specific subjects to have specific colors (blue=math)
    • They need to have all essential items within viewing range (essential items= pens, pencils, notebooks, paper, tape, stapler, calculator)
    • If an item is tucked in a drawer, the child will forget about it
    • Use file boxes with removable tops instead of drawers
    • Avoid deep containers where things can get lost in the bottom
    • Working on a bed may be too distracting
    • A locker at the end of the hall may work better because there are fewer distractions
    • Need to see items directly or they will have a difficult time finding them
    • Remind your child to keep things up close to the front of the locker, once it goes to the back it will be impossible to find
    • Consider using locker shelves
    • They like to see upcoming activities in the month (calendar)
    Have a separate folder for each subject. Make sure that each subject has a different color. This is essential for individuals who are very visual.

    Supports for Individuals with a “Spatial/Cozy Organization Style”

    • They need a backpack that feels good and is comfortable
    • They need a planner that displays the week across a two page spread
    • They prefer a single binder which keeps all the school work in one place
    • They may prefer a three subject notebook because of the convenience of having a few subjects together within reach
    • They have to feel good when they sit at their desk
    • They need to have everything within reach
    • They need to be able to move freely/ they learn best while moving
    • May like an open file cabinet on wheels, so they can move it to their location
    • Do not use deep containers, they need easy access to items
    • Feeling comfortable is essential for these learners
    • May prefer to study on a bed; however, studying in an unkempt bed may result in wasting time looking for things
    • May want a locker at the end of the hall for more elbow room
    • All items in locker should be within reach
    • They will difficulty finding an item that is not within reach
    • Calendar= like spaces provided to write their activities for each date
    For individuals with a “Cozy” organization style, they need to have everything they will need within reach. (
    Photo credit: kaboompics on pixabay.com)

    Supports for Individuals with a “Chronological/Sequential Organizational Style”

    • A backpack that has compartments that will provide order
    • Prefer placing subjects in a sequential list in a single binder
    • Prefer accordion folders
    • May prefer a spiral notebook because it can go into a binder
    • Containers that are stackable work sell since they can access the material in the order they prefer
    • Lots of desktop space
    • May want a locker close to their classes
    • They need to make their own order. It may not make sense to anyone else, but it will make sense to them
    • May prefer electronic planners/ways to keep track of assignments
    • These are number people. They want to know how many days till something is going to happen
    • Prefer tech calendars
    “Chronological and Sequential” organizers may prefer electronic planner instead of typical paper planners.
    Photo credit: firmbee from pixabay.com

    The biggest thing to remember is that our organizational style may not work for you kid; a system taught by a well intentioned teacher may not work for your kid; the most expensive and evidence-based system may not work for your kid because your kid has unique learning needs. And that is great!

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    Feng-Shui and Executive Functioning Skills

    Remembering to pay bills, filling the gas tank before it is empty, remembering appointments, planning a get together with friends, making dinner- all of these things require Executive Functioning Skills. Executive Functioning skills can be difficult for anyone, but especially neurodiverse individuals. When I say “Executive Functioning Skills” I am talking about (for more specific definitions look at the bottom of the page:

    That’s a lot! So, where you start. You start with creating the optimal workspace. That is going to be different for everyone. It is important to remember that your child’s optimal workspace may not look the way you want it to look, but it might be functioning well for them. And if it is working, we don’t want to change it. 

                Below are some questions you can ask yourself to find your child’s optimal set-up. These questions are adapted from Martin L. Kutscher and Marcella Moran’s book “Organizing the Disorganized Child”. 

    WHAT’S MY CHILD’S ORGANIZING STYLE?

    1. When your child is looking for his backpack/phone/keys, he asks you…
      1. “Did you see my____?” (focuses on visual cues)
      1. “Do you know where I put my ______?” (focuses on location and relations) 
      1. “Do you know when I last had my______?” (focuses time or a sequence)
    • When your child is doing his/her homework, s/he…
      • Puts all the items they’ll need for their homework out in front of them
      • Clears off the area before they does their homework
      • Stacks their homework assignments in a certain order before or after completing the assignments  
    • Your child responds best to a teacher who…
      • Writes the notes on the board
      • Make him/her feel good about herself 
      • Runs a very structured and orderly class
    • When your child is invited to a party, s/he…
      • Decides how much fun he thinks the party will be based on the design of the invitation
      • Thinks about what he will do at the party
      • Wonders how long the party will be
    • When your child returns from an activity with friend, s/he…
      • Describes what their friend’s house looked like
      • Describes how they felt at the activity (i.e. “I felt…”)
      • Describes detailed events of the activities in the order that they took place
    • Would your child rather go to a…
      • Movie
      • Physical activity class such as gymnastics, dance or soccer
      • Do a puzzle
    • When picking out a TV show/movie, your child looks for…
      • The TV show/movie with the nicest cover
      • A title that they feel good about
      • A TV show/movie about history or a biography

    Now calculate the totals (it is possible to have more than one style):

    If you answered mostly…Your child has a…
    AVisual Organizational style
    BSpatial/Cozy Organizational Style
    CChronological/Sequential Organizational Style

    My child’s organizational style is____________________________________________________

    SkillLooks Like…
    AttentionAttending to relevant things, shifting attention
    InhibitionStopping impulsive responses, delaying action long enough to consider options
    Working MemoryHolding information long enough to execute a certain behavior
    Goal Determination and AwarenessAnticipate outcomes, set relevant and achievable goals
    FluencyRapidly retrieving information and ideas; generating novel options/solutions
    Planning and OrganizationIdentifying steps needed to complete a long term tasks, locating materials, finishing within a given time limit
    Initiation and PersistenceStarting a task, sticking with a task even when other things are going on
    FlexibilityFinding alternate strategies if the initial one doesn’t work, stopping failed efforts
    Self-RegulationMonitoring efforts, evaluating the outcomes

    Stay tuned for ways to help set up a work environment based on your child’s organization style!

    References:

    “Organizing the Disorganized Child” by Martin L. Kutscher and Marcella Moran

    “Development of Executive Functions” by Jill K. Fahy and Gail J. Richard

    https://www.proedinc.com/Products/31746/the-source-development-of-executive-functionssecond-edition.aspx

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    “Wanted Touch”, “Unwanted Touch” and “Confusing Touch”

    In the last post, I mentioned how teaching “Good Touch” and “Bad Touch” wasn’t the most effective way to teach safety skills. So, what do we do instead? Instead, we should be teaching “Wanted Touch”, “Unwanted Touch” and “Confusing Touch”. 

                A “Wanted Touch” is a touch that is welcome and wanted. This will differ for each person. I love that this concept gives each individual control over what type of touch they want, it doesn’t make a blanket statement that one type of touch is safe for all people.

                An “Unwanted Touch” is a touch that isn’t wanted or welcome. An unwanted touch may be a touch that doesn’t feel good, but is necessary to keep the individual safe. For instance, a shot can be an “Unwanted Touch”. We may not like the way it feels, but it necessary for us to stay safe. 

                A “Confusing Touch” is when the touch isn’t clearly good or bad. This could be a long hug from a family member that you don’t feel close to. It is a touch that doesn’t fit in the context of the relationship. For instance, rough housing with siblings might fit in the context of that relationship. However, rough housing with an acquaintance may not. A “Confusing Touch” can also be a touch that conflicts with the value of the receiver. For instance, I grew up in a very conservative religion and I dated a guy who didn’t believe in kissing longer then 3 seconds. Kissing for longer than 3 seconds went against his values. Lastly, a “Confusing Touch” is one that might feel good but is shrouded in secrecy and shame. For instance, someone touching your genitals might feel good, but the individual doing it might tell you not to tell anyone.

                It is so important to teach neurodiverse individuals to communicate if they ever have a question about the type of touch they received. There are so many grey areas. This is natural- and as it should be. There are grey areas because everyone has different values, different preferences and different lived experiences. One way to stay safe even when grey areas are present is to make sure that neurodiverse individuals have safe people that they can talk to. A safe person is going to be someone that they feel comfortable talking to (especially about personal things). 

                Here is an example of how a conversation could go:

    Child crying: Mom, the doctor hurt me!

    Parent: How did they hurt you?

    Child: They put a shot in my arm and it didn’t feel good.

    Parent: Oh, it sounds like that was a touch that you didn’t want, huh?

    Child: Yeah.

    Parent: That must have felt scary. Thank you for telling me. The doctor was giving you the shot to keep you healthy. So, even though you didn’t like it, it will keep you safe.

    Talking about touch this way help you validate your child’s feelings about the touch, get more information about the context of the touch and explain the purpose of the touch.

    References: SIECUS Report; Sexual Abuse October/November 2000, “The Touch Continuum: Part of a Risk Reduction Curriculum” by Cordelia Anderson M.A.

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    What is wrong with teaching “Good touch” vs. “Bad Touch”

    I recently started doing some parent trainings on various socio-sexuality topics. My most recent one was about Abuse Prevention by teaching individuals to self advocate. For people who are interested, but couldn’t come, this is what we learned.

    Before doing these trainings I research a ton. I wish I could take credit for some of these insightful thoughts, but I can’t. One thing I learned was about how teaching “good touch” and “bad touch” is not only ineffective but potentially dangerous. For those who aren’t familiar with this, look at the graphic below for a basic run down.

    There are a few reasons why this concept should not be taught:

    • When we use words like “bad” to describe actions, we might be inadvertently teaching the individual that they are bad. For instance, if a boy is touched no his penis by another person and he knows that someone touching those areas is “bad”, he might start to identify that HE is bad.
    • “Good touch”- “Bad touch” is too black and white. Consider these examples:
      • A touch that hurts or feels bad isn’t always “bad”. For instance, getting a shot might not feel comfortable but it isn’t bad in the same way sexually abusive actions are bad, because it is keeping us safe.
      • A touch that feels good can be considered abusive. For instance, sometimes when an individual is raped, they experience an orgasm. Myrtle Wilhite, an MD with experience in sexuality education talks about an woman who came to see her who had an orgasm when she was raped. She said, “Orgasms are reflexes, the result of a combination of physical stimulation and arousal. When this guy touched her non-consensually (physical stimulation), her body responded to the high arousal of fear, and she had an orgasm. It does not mean she consented to the experience, enjoyed it, or was asking for it. This type of experience can be quite confusing to abuse survivors, because under certain stressful circumstances, the body can have automatic responses that we cannot control.
      • A touch that is considered good can still be unwanted and harmful. For instance, your ear isn’t considered private. But if someone were to lick your ear or suck your ear this action might still be unwanted.

    So, it is time to do away with “Good touch” and “Bad touch”. In the next post I will talk about what we can do instead.

    References:

    https://www.philachildrensalliance.org/fullscreen-page/comp-jpirm2rt/e441b200-9573-4bfe-bd4a-754209ffad72/7/%3Fi%3D7%26p%3Dqnuav%26s%3Dstyle-jpirm2xj

    http://agentsofishq.com/is-good-touch-and-bad-touch-an-unhelpful-shortcut-to-teaching-kids-about-consent/

    https://journals.sagepub.com/doi/pdf/10.1177/2349301120190112