Author: tricia.lund

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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

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    Consent isn’t just saying “no”

    During the last training I gave on “Sex Ed: More Than Just Body Parts” we talked about teaching consent. Katherine McLaughlin (owner of Elevatus Training-an organization that teaches individuals with disabilities to become sexual self-advocates) said, ““The bottom line is, in order to consent, you have to know and believe that you are in charge of your life, and know what you want and what you don’t want. If you don’t believe that, you really aren’t able to consent. Just knowing what consent means really isn’t enough. You have to KNOW you are in charge and take control of your life. ” Thus, a big part of teaching consent is knowing that you are in control and being able to advocate for that.

                When I think about consent, I have a tendency to think that consent is just saying “no” to things that you don’t want. But, it is also being able to say “yes” to what you do want. Here are some things that go into that:

    • Does the individual know what they like and don’t like? (Have they been given enough choices and experiences to have an opinion)
    • Does the individual have the vocabulary needed to state what they like/don’t like or want/don’t want?
    • Does the individual know how to be persistent in their communication efforts? If someone continues to do something they don’t want, will they persist in saying “no” or “stop”?
    • Does the individual know about consequences for behaviors? If they aren’t able to attach a consequence to an action, giving or not giving consent will be hard. For instance, if I ask you “Do you want some sushi?”, do you know what potential consequences are for eating that sushi (tasting raw fish, tasting seaweed, chewing certain textures).
    • Is the individual able to remember past experiences and use this to make an informed choice? For instance, maybe the last time you ate sushi you threw up. If I offer you sushi again, are you able to remember that experience and take that into consideration?
    • Is the individual able to identify both short term and long term consequences for engaging in certain behaviors? For instance, I may love sushi and so I know that the short term consequence is me enjoying a food. However, sushi may make me sick. So, despite the fact that I enjoy it, I will feel ill later on.
    • Does the individual know what their personal values are?
    • Are they able to use their personal values to make choices that align with those values?

    References:

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    Sex Ed: More Than Body Parts

    The latest parent training I did was on “Sex Ed: More Then Body Parts”. I wanted to give this training because there is so much that incorporates a comprehensive sex ed program… and it is not just about an individual’s ability to identify a penis or a vulva. I remember teaching a previous student about sex and it was really just me putting a picture in front of her and having her circle the private parts on the body. It was incomplete and ineffective… and I wish that I had known that sooner. So, here is what I learned about what should be included. 

    According to, Advocates for Youth, “The goal of sex education is to help young people navigate sexual development and grow into sexually healthy adults. To be effective, sex education must include medically accurate information about a broad range of topics such as consent and healthy relationships; puberty and adolescent development; sexual and reproductive anatomy and physiology; gender identity and expression; sexual identity and orientation; interpersonal and sexual violence; contraception, pregnancy, and reproduction; and HIV and other STDs/STIs. Quality sex education goes beyond delivering information. It provides young people with opportunities to explore their own identities and values along with the values and beliefs of their families and communities. It also allows young people to practice the communication, negotiation, decision-making, and assertiveness skills they need to create healthy relationships— both sexual and nonsexual—throughout their lives, advancements in medical technologies; developments in communications platforms, including social media, and the increasing use and impact of technology within relationships; increased focus on bodily autonomy, consent, and sexual agency; updated laws and policies on such topics as bullying, sexting, and access to and availability of sexual and reproductive healthcare; continual evolution in language related to gender, gender identity, gender expression, sexual orientation, and sexual identity; inclusion of power and privilege, conscious and unconscious bias, intersectionality, and covert and overt discrimination, and the principles of reproductive justice, racial justice, social justice, and equity; emphasis on prevention, recognition, and intervention related to sex trafficking and sexual exploitation; and impact of youth having increased availability and access to sexually explicit media.”

    Everything in blue should be included in a comprehensive sex ed program. That is overwhelming, to say the least. I wanted to share some resources that might make the whole thing less overwhelming. The first is, “Guidelines for Comprehensive Sexuality Education 3rd Edition” made the “Sexuality Information and Education Council of the United States” (SIECUS). It breaks sexuality down into topics (i.e. Human Development, Personal Skills) and includes objectives for each topic that are broken into levels based on the individuals age. I love the format, because you can look at where your individual is and automatically see what they need to do next. 

    References:
    https://siecus.org/resources/national-sexuality-education-standards/
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    We owe people with disabilities an apology

    I recently attended a virtual training by Dave Hingsburger. This guy is amazing! He has done some incredible work, especially with regards to respecting the rights of individuals with disabilities. During the session, Dave talked about the need to teach relationship skills to individuals with disabilities. In fact, he emphatically said that we (professionals, clinicians, anyone who work with individuals who have disabilities) should be apologizing to people with disabilities for not giving them the opportunities or teaching them the skills needed to have relationships.

    Relationship skills are more than skills that should be used after a relationship has gone bad. I used to think that the most important thing you can teach an individual with a disability is to say “no” or report if abuse has happened. And while this skill is definitely necessary, it should be taught in addition to skills that will enhance relationships (communicating your needs, compromising, knowing what you value in a potential partner, reciprocating, being assertive, how to respond to different opinions/values). The end goal is to help individuals with disabilities form relationships. Having relationships (whether they are romantic, not romantic, in person, online) increases quality of life, for everyone. Additionally, being able to have close relationships with others can also deter some of the negative outcomes that are common for individuals with disabilities. So, what can I, as a clinician do?

    1. Provide opportunities for individuals with disabilities to be social. In the groups I lead I have found that so many of my clients want to do things with other people in the group. I have tried to gradually remove myself from the picture to see how far they can get into the planning stages and follow through. They will bring up an idea, everyone gets super excited and then planning stops. They need prompts to see who is free on what days/times (there are a lot of schedules to coordinate), talk about where it will happen (it should be in a general location so everyone can get there), how they will get there (who has access to a ride and who doesn’t?), etc. That is a lot of executive functioning skills…
    2. Teach the executive functioning skills needed to follow through with relationships
    3. Don’t discount online relationships. Many of my clients prefer online relationships because they don’t have to worry about interpreting body language/facial expressions and because they have time to formulate a response. If it is working for them, then who am I to take that away.
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    Teaching Consent

    I think it is extremely important for me to learn about autism from someone who has autism. I’ve been reading a book called “Sincerely, Your Autistic Child: What People on the Autism Spectrum Wish Their Parents Knew About Growing Up, Acceptance and Identity”. One of the contributors to the book was talking about people who call themselves an “expert” in the field of autism. She said, “A hundred degrees on the wall from top universities ma make you an expert in the field of a disorder, but they will never make you an expert on being Autistic” (p. 152). I love that! In the past I had a tendency to get cocky. I thought that my degrees and my experiences as a teacher/clinician/sister to someone with autism, made me all knowing. I look back at that and just cringe. I am ashamed that I thought I could effectively connect with someone without taking the time to really understand how they experience the world. 

    There is one other chapter in this book that brings up extremely important information about teaching boundaries and Sex Ed. Recently, I have been leading online groups for individuals with disabilities. In one of my groups, I was talking about consent. Consent can get a bit tricky because it is not black and white. What makes people feel comfortable or uncomfortable is going to differ for each person. One person may feel comfortable consenting to a kiss on the lips, while another person may not feel comfortable consenting to that. So, teaching the concept of consent is more than just teaching someone to say “no”; it is also about teaching an individual to know what feels comfortable and uncomfortable to them. Turns out, this concept isn’t easy to teach either. Here’s why.

    There is a tendency for many neurotypical individuals to focus on compliance. I recently virtually attended an incredible webinar about this topic. The webinar was given by Kelly Mahler and an autistic self advocate (I can’t find her name, so I wasn’t able to add it). They taught that this focus on compliance also teaches neurodiverse individuals to ignore their needs and the internal signals that their body is giving. For instance, if a neurodiverse child needs a break but we say that it is not time for a break then we are teaching them that our demands are more important than their needs. If a neurodiverse individual says that they need to use the bathroom, but we say that it isn’t time for a bathroom break then we are teaching them that their needs are not as important as our schedule. The more this continues, the harder it is for neurodiverse individuals to understand what cues their body is telling them. These cues not only refer to hunger/thirst or needing to use the toilet. These cues are also related to comfort/discomfort/anxiety/pain.

    So, taking it back to consent. Individuals (all individuals, although I have been focusing on neurodiverse individuals) need to attend to their internal experiences and they need us to honor those experiences. When we are honoring their sensory needs, we are teaching them that those feelings matter. Karen Lean (a contributing author in “Sincerely, Your Autistic Child”) said, “I strongly connect disrespecting my sensory boundaries with a vulnerability to unwanted sexual contact… If you deny your child’s desires and pain around her sensory world, she may learn that her body and boundaries are not worth respecting” (p. 49).

    I am still learning how to apply all of this knowledge, but here is what I am trying to do. Because I work a lot with adults (who have had years of people telling them that their internal experiences and sensory needs didn’t matter), we go back to step 1 and practice experiencing and labeling sensations. We do experiments together that focus on bodily sensations and pair language with those sensations. I’ve also started to ask more questions. Questions allow me to understand where my client is coming from instead. Prompting what I think the correct response is only teaches the client to say what I want to hear (which is incredibly dangerous in the long run). My goal as an ethical clinician is to understand my client’s needs and help them communicate those needs to others. 

    References:

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