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Why Should Neurodivergent Folx get Sex Ed?

Sexual Ableism- have you heard this term before? It was a new one for me. I know what “ableism” is. FYI- ableism is “discrimination and prejudice against disabled people based on the belief that typical abilities are superior”.

I think that when we aren’t directly impacted by things, it is easy to dismiss them and not see them as a concern. For neurotypical people (of which I am one), it is easy to live in a world of privilege and not think about those who are impacted by ableism. Jo Moss, the author of a blog about disability and ableism, further says, “I don’t know about you, but I’ve had enough of living in a society that devalues my worth and sees me as an inconvenience and a burden – subhuman even”. Take a moment to think about how it would be to live in a world where you are seen as a “burden” or an “inconvenience”.

Now, sexual ableism is “a system of beliefs that discriminate against people with disabilities in dating, intimacy, and relationships, suggesting the very presence of a disability implies inferiority.” We demonstrate sexual ableism when we:

  1. Assume that people with disabilities are “asexual” or don’t have sexual desires.
  2. Insist that people with disabilities need to supervised and monitored in their relationships
  3. Seeing people with disabilities as perpetual victims or perpetually vulnerable.

Here is where things can get a little complicated. There is evidence that people with disabilities are more likely to be assaulted and experience sexual abuse than those without disabilities. (It can be hard to get an accurate count, because there are instances of sexual abuse that go unreported, especially if the person who was assaulted has language deficits. However, Disability Justice says that 83% of women with disabilities will be assaulted; 3% of abuse involving people with disabilities is even reported.) So, perhaps it makes sense that we feel the need to constantly monitor and supervise them in relationships. Is constant monitoring and supervision our way of protecting people we care about? I would argue that keeping people with disabilities sheltered and not actively teaching them skills that will keep them safe is keeping them in a life of victimhood. When we do not teach comprehensive sex education to people with disabilities, we are keeping them in a state of victimhood.

David Hingsberger, a renowned disability activist and author, said, “Typical children [who receive sex education] have a number of concepts that will keep them safer. They understand modesty and privacy. They understand relationships and appropriate touch within those relationships. But they have something more, they have language. Protection from sex education leave a person effectively mute when it comes to speaking about their body” (p. 19 Just Say Know: Understanding and Reducing the Risk of Sexual Victimization of People with Developmental Disabilities). At the very least, sex education teaches neurotypical and neurodivergent alike how to report unsafe situations, confusion about what is happening, pain or abuse.

Read the next blog post to see how sex education does more than simply prevent abuse for people with disabilities.

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Why Disability Care Needs a Shift in Mindset—Not Just Services

I’ve been studying thanatology (the study of death, dying, grief, and loss), and I’ve noticed that many of its essential ideas should also be applied to people with disabilities. Recently, I’ve been reading about maintaining dignity during end of life using the Dignity Conserving Model developed by Harvey Chochinov. There is a very real potential to lose dignity as you age or become sick—your independence decreases, your functional abilities change, your privacy can be affected, and you may begin to feel like a burden.

For people who are aging or sick, these losses are typically acquired; neurotypical people are usually not born in these states. However, people with disabilities are often born into circumstances that can affect their dignity from the very start. They are born needing additional support and with different adaptive skills. Having a disability frequently impacts one’s right to privacy—not only in terms of physical care, but also regarding personal information, diagnoses, bodily functions, and intimacy. And the truth is, society often treats people with disabilities as if they’re a burden. Mencap, a UK organization that researches how people with disabilities are treated and advocates for their rights, has highlighted this problem. One of their reports noted that while there are some positive practices out there, overall there’s still a “lack of respect for the dignity of adults with learning disabilities” (Matthews, 2011, p. 188).

There is where the Dignity Concerning Model of Care comes in. I think that it can be extremely helpful when we are looking at the care that people with disabilities receive. Ideally, I would hope that we view all life as deserving dignity—regardless of someone’s capabilities, income, productivity, or level of “compliance.” But even beyond that moral belief, there is a reciprocal truth at the heart of dignity: when we treat others with dignity, we are also safeguarding our own. Chochinov captures this beautifully when he writes, “Delivering care that bestows dignity on others confers and safeguards the dignity of the provider.” In other words, the dignity we extend outward is the same dignity that shapes who we are and how we experience ourselves. If we want dignity for ourselves, we must offer it to others. There is something deeply beautiful about that circularity—how dignity moves between people, strengthening both the giver and the receiver.

And when we try to increase someone’s sense of dignity, it’s not just about what we do. We can’t simply say, “I talked to you twice a day. I gave you choices at dinner. You have free access to your cell phone,” and assume the person feels dignified. Dignity rests in how the person perceives our actions. Even if we intend to treat someone with dignity, that dignity may not come across. One reason for this is “care tenor”—the attitude and tone of the person providing care. Chochinov explains that “maintaining dignity goes beyond what one does with or to a patient [client, person, family member] and often resides in how one sees the patient” (Chochinov, 2002, p. 2259).

Some questions to consider:

  • How do I define dignity for myself?
  • How do my clients define dignity?
    • Have I asked them?
    • If they are nonspeaking are there body movements, facial expressions, nervous system changes that show me how they are feeling around me?
    • Even if your client can’t define, it is still worth reflecting on.
  • Do I have any prejudices that come across when I am caring for them?
    • This question is not meant to shame anyone; this is an area of growth and introspection for everyone.
    • Before immediately saying “no”, really think about this question. Even people with good intentions, even people who are passionate about caring for people can have internal prejudices.
    • How often am I reflecting on this?
      • This is a one and done question. Are you checking in with yourself consistently.
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The Right to Make Mistakes: Financial Independence and the Dignity of Risk

I want to share an experience I had with a client. All information is general, and no identifying details are included.

I recently worked with an individual who wanted more control over her money, but her family was currently managing it. The client is her own guardian, so technically she should have been allowed to access her money. She decided to call a meeting with her team to talk about how she wanted that access.

During the meeting, one family member tossed a wad of cash at her and told her to count it. My client was unable to do so. But this wasn’t about ability alone—it was about context. She was nervous and stressed, which made focusing and processing difficult. She has deficits in scanning, which meant she couldn’t always identify the numbers on the bills. She has challenges with working memory, so it was hard for her to hold a sequence of numbers in her head and add them together. And with limited motor control, separating one bill from another was extremely difficult. When she said she couldn’t count the money, her father responded: “Well then I guess you can’t be in charge of your own money.”

The very next day, my client was “given” $20 by a family member. She bought a shirt she wanted. Instead of celebrating her independence, the family member got upset, saying she was spending her money on things she didn’t need. They then demanded the rest of the cash back.

Here’s the thing: I know plenty of neurotypical people who can’t count wads of cash. I know neurotypical people who don’t pay their rent on time. I know neurotypical people who make impulse purchases. Yet none of them lose access to their money. So why is it that people with disabilities are so often stripped of financial independence—simply because they have a disability?

Dignity of Risk. This is from a previous blog post:

If you have ever made a mistake, raise your hand. (Hint: every hand should be raised.) If you have learned from a mistake, raise your hand. (Again—all hands up.) If your mistakes have helped shape who you are, raise your hand. (Yes—all hands should be raised.)

Unfortunately, neurodiverse individuals are rarely given that same right. In my work in group homes, I often see staff, caregivers, and guardians put restrictions in place to prevent individuals from making mistakes. We do this with good intentions—we don’t want to see them hurt, sick, or sad. But when we take away their right to make mistakes, we also take away their right to be human.

As attorney Chris Lyons, who advocates for individuals with disabilities, explains: “The right to make a mistake is important because it is at the core of our human dignity. What makes us most human is our ability to enjoy our successes by also owning our failures. It is that contrast—that yin and yang of human nature—that allows us to truly be a person.”

Self-advocate Max Barrows builds on this when speaking to service providers: “Please don’t protect us too much—or at all—from living our lives. We are going to have to encounter failures through the decisions we make. That’s the number one way of learning where the lines are drawn, and it also helps us learn about ourselves. The dignity of risk is one of the many opportunities that people with disabilities deserve to have.”

Some questions to consider when you are using restrictions:

  • Check your reasons
  • Am I restricting access because I feel the need to be in control?
  • Am I restricting access because it makes things easier for me?
  • Am I restricting access because the individual has different values than me?
  • Am I restricting access because I am dysregulated in this moment?
  • Would I want someone to restrict my access to things in this moment?
  • Am I respecting this person’s dignity?

References:

Dignity of Risk Toolkit from North Dakota Health and Human Services, April 2024 http://chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.hhs.nd.gov/sites/www/files/documents/Developmental%20Disabilities/Dignity%20Of%20Risk%20Introduction%20April%202024.pdf

Green Mountain Self Advocates: Dignity of Risk https://gmsavt.org/resources/video-dignity-of-risk

The MN Government Council on Developmental Disabilities, Self Determination: Dignity of Risk https://www.youtube.com/watch?v=RJ1aYsFTDS4

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They Are Not Just Being “Difficult”: Why We Need to See Behaviors as a Symptom

When we work with adults who have disabilities, it’s easy to focus only on what’s happening on the surface. We see the behaviors, but we often don’t consider the underlying thoughts, feelings, and past experiences that might be driving them. As Mona Delahooke wrote in her book, Beyond Behaviors: Using Brain Science and Compassion to Understand and Solve Children’s Behavioral Challenges, we often build our recommendations and treatment plans based on what we see, “without adequately considering what lies beneath.”

To illustrate this, let’s look at a real-life example. I’ve changed the names and identifying information to protect the individual’s privacy.

The Situation: Beatrice’s Challenging Behaviors

According to staff reports, Beatrice was exhibiting a number of challenging behaviors:

  • Yelling/screaming
  • Being “rude”
  • Throwing things at people
  • Refusing to use her walker
  • Refusing to take a shower
  • Saying, “I hope someone kills me”

When staff were asked to explain the reasons for this behavior, they often pointed to immediate events, such as:

  • She wanted different sheets on her bed
  • She didn’t want to shower
  • She “just wants things her way”

This approach—looking only at what happened right before and after a behavior—is a common practice, but it often misses the bigger picture.

A Deeper Look: The Overlooked Underlying Reasons

What everyone failed to look at were the deeper, underlying reasons that were impacting Beatrice’s behavior. The following are some things that were overlooked:

  • The client had just moved into a new apartment with new roommates
  • She moved into a smaller room, so her family was choosing items that had go into storage or be thrown away
  • The client’s Step Mother had promised to get her sheets months ago, but hasn’t done it yet (so, in all reality, my client has been waiting a long time!)
  • The client has a difficult relationship with her family.
    • While I haven’t witnessed outright verbal abuse, they blame her for a lot of things, they restrict access to things that she has a right to have, they never visit her even when they promise they will, they do not answer her phone calls, they shame her for “being awful” and making their “lives difficult”.
  • The client has a degenerative disease that has not been officially diagnosed. She is gradually losing her ability to walk, talk and do things she used to do.
    • The client recently told staff that she was frustrated with losing her abilities and wanted to find a support group.
  • The client does not have friends with her same interests
    • The staff have said that her roommates are her friends, but I talked to her this was not the case. Just because people live in the same place does not mean they are friends
  • The client has asked for more freedom over her money and her family said that she couldn’t have more freedom with her money because she would “make bad choices”

There are definitely more things that are impacting her behavior, this is just the tip of the iceberg. If we only look at the surface, we are missing legitimate reasons why behaviors are occurring. If BCBA, service providers, staff and families acknowledge the many variables impacting behaviors we could have interventions that would bring a high quality of life instead of making a client more compliant.  

These are things I think would help my client that do not involve taking her things away, threatening to call the police or promising her money if she “behaves” (all of which have been done already and have only caused behaviors to increase).

Current ProblemSolution
The client had just moved into a new apartment with new roommatesCan we sit for a minute and relax and acclimate to the new place, ask her what her feelings/opinions are about it. If she has concerns, are there ways we can address them?
She moved into a smaller room, so her family was choosing items that had go into storage or be thrown awayLet Beatrice decide what she wants to keep and what she wants to put in storage If she can’t decide, can we put things on a rotation?  
The client’s family had promised to get her sheets months ago, but hasn’t done it yetGet her the damn sheets!  
The client has a difficult relationship with her family.Start family therapy and address the issues there
The client has a degenerative disease that has not been officially diagnosed.Start family therapy and address the issues there. Beatrice should not be the only one required to change her behavior, her parents have a responsibility here as well.
The client recently told staff that she was frustrated with losing her abilities and wanted to find a support group.Find or start a support group  
The client does not have friends with her same interestsCan we find more activities in the community that will give her more quality friendships? Does she already have friendships that she just needs help strengthening?
The client has asked for more freedomGive the client more financial freedom. Use visuals to show her where her money is going (i.e. rent and utilities)Help her develop a budget with what is important to herLet her have money that she spend without accountability from other people (she should be able to buy a $10 shirt without everyone getting mad that she bought something she didn’t need).

I want to acknowledge that there are BCBA and researchers who trying to make things more ethical and who are looking into strategies that are more compassionate and acknowledge some of the inner stuff that is impacting behavior. The problem is, the majority of providers/staff that work with adults who have disabilities still have this very behaviorist mentality- which is impacting quality of life and quality of care.

So, what do we do? We start talking about the stuff we can’t see that is impacting behavior. We look at a client’s history. We look at how much access they have to freedom, autonomy, dignity and choice. If you want to join me in finding ways to change this, please contact me! The more people with a similar mission and similar values, the better!

References:

Beyond Behaviors: Using Brain Science and Compassion to Understand and Solve Children’s Behavioral Challenges

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From Permission to Personhood: Rethinking Rewards in ABA

One major shift that I believe needs to happen in the field of ABA is when and how we reward behaviors. Too often, individuals—especially adults with disabilities—are asked to prove that they “deserve” autonomy, independence, or choice. In practice, this means many ABA professionals and staff require people to earn basic human rights before granting them. But why should freedom, dignity, and autonomy need to be earned at all? Aren’t these fundamental human rights?

Yes, there are exceptions—someone in jail, for example, might lose autonomy because of a crime. But when it comes to people with disabilities, we often use these same restrictive strategies simply because of their disability.

In my experience, clients are told they can only access autonomy, assistance, or freedom after they’ve demonstrated certain behaviors. For example:

  • A client receives job support only after proving they can consistently complete chores at home.
  • A client gets to choose which staff member to go on outings with only after showing “respect” to all staff members.
  • A client may say no to an outing only after attending a set number of planned outings without behaviors.
  • A client can keep their phone only after proving they won’t “bother” others by calling too often.

In each of these cases, the individual is being punished for very normal, very human responses to challenging situations. The burden falls entirely on them to change, rather than on staff and systems to change the way they respond.

Here’s what it could look like instead:

  • A client receives job assistance simply because they need a job. Having a job may help them manage their home responsibilities, but those two things are not linked. Plenty of neurotypical people have jobs and messy houses.
  • A client chooses which staff member to spend time with—no strings attached. Giving them that choice increases their sense of control and may naturally improve respectful interactions. If they’re disrespectful to certain staff, perhaps we need to examine how those staff are treating them. Respect goes both ways.
  • A client chooses whether or not to attend an outing because choice is their right. Forcing anyone to attend five events before they’re allowed to say no is unreasonable. I know I’d “have a behavior” if I were forced to attend loud concerts I didn’t want to go to.
  • A client keeps their phone, while parents are taught to set boundaries or reframe their child’s behavior as a desire for connection. Sure, frequent calls can feel overwhelming, but isn’t it meaningful that the child wants a relationship with their parent?

At the heart of this is a simple truth: people with disabilities deserve dignity, freedom, choice, and autonomy just because they are people. These should never be conditional. And I believe that if we consistently granted these rights, we would actually see fewer challenging behaviors overall.

My dream is to find a provider or group home willing to break away from outdated strategies—one that will show how behaviors, mental health, and overall happiness improve when people are given true autonomy and respect. When I share this vision with providers, I often hear, “Well, no one is abusing them…” But is that really the standard we want to set? Should people with disabilities be grateful just because they aren’t being abused? That bar is far too low.

If you are a provider or work in adult services and want to explore this perspective further, I’d love to connect. Together, we can prove that there’s a better way forward—one grounded in dignity, freedom, and respect.

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Reevaluating ABA: A BCBA’s Journey of Reflection

This is a different blog for sure and one where I am going to be a bit vulnerable. I started as a BCBA in 2015, so I have been a BCBA for 10 years. I started as a Special Education teacher and then worked briefly in a clinic. I realized that my values really didn’t align with the work that I saw being done in ABA clinics, so I left and started working with adults and teenagers in group homes. This is not to say that all ABA clinics are bad, but the ones I saw were not great.

Throughout the years I have been questioning my choice to be a BCBA. It has definitely been an interesting journey. When I started as a BCBA, I was all in… I used terms like “attention-seeking”, I felt ok using extinction procedures and I was ok removing access to “preferred items”. The more I have researched areas outside of ABA- especially neuroscience, trauma and polyvagal theory- I have realized that the strategies I was so quick to use as a BCBA were harmful and may have caused trauma. Here are some of the concerns I have with ABA

  • ABA simplifies the human experience into very basic functions. Granted, many BCBAs have been trying to make room for more complexity in this area. For instance, there are BCBAs that are acknowledging that trauma can cause an increase in behaviors and a history of trauma will impact a present behavior. There is also more talk about “experiential avoidance” or engaging in behaviors as a way to escape difficult feelings. But the majority of people who work with individuals who have disabilities are still using this outdated concept. 
  • ABA focuses on manipulation. Some BCBAs might cringe at the word and say that my word choice isn’t great. But I believe it fits. Some BCBAs will say that they are trying to do more with positive reinforcement and reward systems and are trying to steer away from punishment procedures (i.e. time out, taking away something the child wants), but rewards are still manipulative. We are essentially only providing rewards for behaviors that we (the adult) find valuable. Rewards are often used in order to get a child to “comply” and act in a way that we want them to, regardless of their current regulation state or feeling of safety in that moment.
  • ABA doesn’t make room for regulation. People can have “behaviors” because they are feeling dysregulated. Someone may yell and scream because they are having very difficult feelings and do not feel safe in that moment. The best thing to do here is help the person feel safe and do what they need to regulate their nervous system. A reward system does not change a nervous system and punishments do not regulate a nervous (in fact, they can actually cause an increase in dysregulation.
  • ABA often puts all of the responsibility on the child. We often expect more of a neurodivergent child then we do of the adults in the room. How can we expect a child to be regulated if we are not regulated. This is a process called “co-regulation” and it involves the adult staying regulated in order to help the child feel safe so they can also be regulated.

I don’t know what my path will be, but I know what my values are. I value my client’s. But, more importantly, I value autonomy and I feel the need to advocate for my clients so they get more of it in their lives. I value connection with people and I feel that some ABA practices take away from that value. I value safety… and not just physical safety (although that is needed), but safety that felt and experienced internally. So, I think my question is “Is practicing ABA helping me live in alignment with my values”? Let’s start this journey of exploration!

References:

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Understanding and Mitigating Secondary Loss in Disability Grief Support

Have you heard the term “secondary losses”? As I was researching grief in individuals with disabilities, this term came up a lot. A “primary loss”, is the actual loss that occurred (e.g. your brother dying, your favorite roommate moving out) and it can be painful. “Secondary losses” are the losses that come because of the primary loss. This could mean lack of social support, decreased access to activities or extended family, financial insecurity, having to move, etc. People with disabilities are more likely to experience secondary losses and they are more likely to be severely impacted by them.

Look at the example on this slide:

            For people who experience a primary loss, but don’t have a disability, they may not be as impacted by secondary losses. They are more likely to have multiple systems of support, they are more financially stable and can afford help, they are less reliant on people.

            When it comes to supporting someone with a disability who is going through grief (especially a death loss), one of the best things caregivers and staff can do is find a way to minimize those secondary losses. Here is what you can do:

  1. Identify how the person supported them.

2. Find alternate people who can provide similar support

If the individual you are supporting has cognitive/communication differences, it can be helpful to make things visual. I like to try to be as specific as I can in showing the person who they will continually be supported. Here is an example:

In this visual I am showing the client specific people who will help her and what activities they will help/do with her.

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Why “Passing Away” Doesn’t Help: Talking Honestly About Death and Disability

When we talk about death, many of us use softened language like “passed away,” “moved on,” or “in a better place.” This is natural—we want to be gentle. I used these phrases myself until I began researching how individuals with autism and intellectual disabilities understand grief and loss.

What I found was this: using euphemisms can create confusion. Phrases like “Grandma is in a better place” or “Dad went to sleep” don’t provide clear information. Someone might think Grandma is on vacation and expect her return, or become afraid to fall asleep themselves. Misunderstanding like this can lead to unnecessary distress and negatively impact mental health.

In my work, I don’t correct clients for using softer language, but I do check for understanding. For example, one client said a coworker had “passed away,” but couldn’t explain what that meant. Another client referred to her dog as being “in a better place,” but hesitated to say “dead.” I responded gently with clarification and asked the group how they felt about using words like “dead” and “died.” Some of them said it was impolite to use the word “dead” or “died”. Perhaps that was something that they have been taught; but is it something that we should reteach? Why are “dead” and “died” impolite? What do we lose by not using these words?

But maybe that’s something we need to rethink.

When we use softer language to talk about death we are perpetuating this stigma about death- that it is something we don’t talk about. Not talking about death can cause isolation. When we use words like dead/died, we are validating the individual’s experience and indicating that we are open to talking about the loss. Consider this- Grief shared is grief diminished.

We use euphemisms to avoid causing pain, but grief hurts no matter the language. And when the language is unclear, it can prolong confusion and pain. As caregivers, educators, clinicians, or friends, one of the most supportive things we can do is be honest, use clear language, and hold space for the person’s emotions.

If you can’t use euphemisms, what can we say? Here are some tips:

  • Provide simple, concrete explanations that a child can understand about why the body no longer works.
  • Some individuals with disabilities may not fully grasp the permanence of death and might continue referring to their loved one in the present or future tense. Prepare a consistent, clear response you can repeat each time to gently support their understanding.
  • Encourage questions
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Relationship Safety Skills: Teaching ages and age groups using Discrimination Training

Many professionals working with individuals with disabilities are familiar with discrimination training. This type of training helps individuals distinguish between different stimuli. For example, teaching someone to recognize letters in their name or identify animals involves discrimination training.

This concept can also be applied to more complex areas, such as recognizing age groups (e.g., baby vs. adult, toddler vs. teenager).

Why is this important? Being able to estimate someone’s age is crucial for safe dating and relationships. Consider these scenarios:

  • Scenario: An 18-year-old with a disability begins texting a 14-year-old without realizing their age.
    • Potential Consequence: The 14-year-old’s parent reports them to the police, potentially leading to a criminal record or even placement on a sex offender registry.
    • Solution: Teach the individual that dating minors can lead to legal trouble. Use discrimination training to help them recognize who might be underage.
  • Scenario: A 28-year-old with a disability has consensual sex with a 16-year-old without knowing their age. Later, they argue, and the 16-year-old reports them.
    • Potential Consequence: The 28-year-old could be charged with statutory rape, as the 16-year-old is legally a minor.
    • Solution: Educate the individual on the “age of consent” and the legal risks of relationships with minors. By incorporating discrimination training, individuals with disabilities can better understand age differences and avoid serious legal consequences.

Tricky Situations with Age Discrimination

  • Visual Clues Aren’t Always Reliable
    • You can teach age discrimination using general clues, such as grey hair often indicating an older adult or braces usually meaning someone is a teenager. However, these clues aren’t foolproof—some 40-year-olds have braces, and some 20-year-olds have grey hair.
    • Solution: Start with clear and obvious examples to help individuals learn the concept. Then, introduce multiple examples to show exceptions to the rule.
  • Different Words for the Same Age Group
    • Age groups often have multiple names. For example, a toddler might also be called a “kid,” “kiddo,” or “preschooler.”
    • Solution: When teaching age discrimination, include different terms that refer to the same age group. If you start with “kid,” also teach that “kiddo” and “preschooler” mean the same thing.
  • Visual Cues Can Be Misleading
    • Judging someone’s age based only on how they look can lead to mistakes because appearances can be deceiving.
    • Solution: Teach individuals to ask for someone’s age when in doubt. Role-play scenarios to practice how and when to ask appropriately.
  • People Can Lie About Their Age
    • Even if someone asks another person their age, that person might not tell the truth.
    • Solution: Teach individuals why someone might lie about their age and how to spot signs of dishonesty. Encourage critical thinking and awareness when interacting with new people.

Check out this free resource about discrimination training when teaching about age groups and ages.

https://www.teacherspayteachers.com/Product/Discrimination-Training-Ages-13178190

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Supporting People with Disabilities who Experience Grief/Loss

Losing someone is difficult, but it can be even harder for people with disabilities. This is because, the research shows that we do not often prepare people with intellectual disabilities to handle grief and loss. In fact, in worse case scenarios there is a tendency to assume that the grief/loss won’t impact them at all. This is called “disenfranchised grief” and it essentially means that a person’s experience with grief and loss is not recognized or acknowledged by other people; which also means that the person won’t get the needed support to cope with grief and loss. This means that their overall mental health will be negatively impacted.

In general, death is a difficult thing for society to talk about. It is a topic we often avoid, so it makes sense that we would have a hard time talking about death with people who have disabilities. This reason parents/caregivers/staff do not prepare people with intellectual disabilities about death include:

  1. They worry that the individual won’t understand the concept, so they don’t bring it up
  2.  They worry that talking about death will increase the risk of difficult behaviors
  3. They don’t think that they are not capable of helping the person with the disability through the grief, so they avoid it.

The problem is, not talking about grief/loss and not preparing people with disabilities for grief and loss can negatively impact their overall mental health. In fact, many people with disabilities may develop “complicated grief” (a longer lasting and more debilitating type of grief than normal grieving), because they aren’t prepared for the loss. Let’s look at why our reasons for not supporting someone with a disability through their grief may not be the vest choice:

  1. The caregivers/guardians/staff worry that the individual with the disability won’t understand the concept, so they don’t bring it up
    • We need to presume competence. There is a tendency to assume that someone with a disability does not understand complex concepts; we might base this assumption on IQ or we might base it on what we observe. However, it is ableist to assume that someone’s IQ correlates with their intelligence and their ability to understand concepts. There are numerous books/articles/blogs written by people with disability that show profound intellect.
    • Even if someone does not understand the concept of death, that doesn’t mean that they aren’t impacted by the loss. You don’t have to have a high IQ for loss to impact you.
  2. The caregivers/guardians/staff worry that talking about death will increase the risk of difficult behavior
    • This is known as diagnostic overshadowing, it is when we think that a behavior simply occurs because of their disability. When this happens we don’t address the core reasons for why the behavior is happening– which means that the behaviors will often continue. If someone is displaying aggression because they are stressed that their caregiver passed away, addressing the grief/loss is going to do more good than our typical behavioral strategies (i.e. token economies, extinction, etc).
    • Some research has shown that talking about loss/grief makes the person with the disability feel supported and less likely to engage in inappropriate behaviors. Thus, the behaviors that we see after a loss may be happening because they aren’t feeling supported in their grief, not solely because of the grief.
  3. The caregivers/guardians/staff don’t think that they are capable of helping the person through the grief, so they avoid it.
    • Research shows that many individuals with disabilities can benefit greatly from a simple supportive environment and more intense therapy may not be needed if they simply have that. If all that is needed is a supportive person, we ALL have the knowledge and capacity to support individual with a disability through their grief. One research article said it best when they said, “Grief itself is not pathological and it is a normal part of the life course, staff/parents/caregivers should be capable of offering, accepting and giving honest support” (Clute, M., 2010 p. 167)

How can we help people with intellectual disabilities through grief?

  • One of the most important ways to help someone through an upcoming loss is to involve them in the rituals surrounding death and loss. This means that we give them the opportunity to go to the funeral, visit the grave site, etc.
  • Let the individual help you memorialize the person they lost- a book with pictures of fun things they did together, write a letter to the person you lost, organize a charity event if their honor if they passed away from a specific reason
  • Bibliotherapy and reading books about death/loss. Sometimes those books can give us a script if we aren’t sure how to verbalize things
    • The book below is one I really like:
  • Normal their feelings. All responses to grief are normal. Anger is normal, numb is normal, sadness is normal and peace is also normal. It is so important to normalize all the feelings surrounding grief and it is important to normalize their unique path.
  • Empathetic listening. Just listen and sit with the person in their grief.
  • It is also important to know that even with these supports, some individuals with a disability will need to receive more intensive counseling from a trained professional.

Looking for easy to access information? Check out this free resource?

https://www.teacherspayteachers.com/Product/Trauma-Informed-Interventions-Medical-Trauma-and-Grief-12915958

For more information, check out these articles:

  • Bereavement Interventions for Adults with Intellectual Disability: What Works? By Mary Ann Clute (2010)
  • Beyond Silence: A Scoping Review of Provided Support for Grieving Children with Intellectual Disability or Autism Spectrum Disorder by Maria Bonin, Lilly Augustine and Qi Meng (Journal of Death and Dying 2024)
  • Supporting People with Disabilities Coping with Grief and Loss: An easy-to-read booklet By Hrepsime Gulbenkoglu 2007
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Teaching Abuse Prevention

While there is debate about the actual prevalence, people with disabilities are more likely to be abused than their nondisabled peers. There are a few reasons why and this is by no means an exhaustive list:

  • They may exhibit behaviors that people assume require them to be restrained.
  • They are “nonverbal” and unable to report the abuse
  • The abuse is coming from a caregiver and if the victim reports the abuse, they may lose access to care
  • When they do report abuse, they are not believed because they have a disability
  • They have not learned the vocabulary to report abuse
  • Words that will help them report abuse are not programmed into their communication devices
  • They are unaware that what happened was abuse, so they do not report it as such.
  • They are more likely to require assistance with self-care tasks (which can make it easier for those assisting them to abuse them)
  • They are isolated and do not have a strong support system to help advocate for them
  • There is over-focus on teaching “compliance”

In the minor reading I have done, I have found abuse prevention programs that focus on using behavioral skills training where individuals with disabilities are taught how to respond in a potentially abusive situation (this is modeled and then they do a role play practice). Some other curriculum teaches individuals how to make decisions that could decrease the likelihood that abuse would occur. In this curriculum, they look at scenarios and review what decisions should be made in order to stay safe. (“On a side note, while I agree that there need to be specific curricula and teaching practices to help individuals with disabilities, I don’t think that we should be putting all the responsibility on them to keep themselves safe.) However, the majority of curriculum that I have seen are not conducive to individuals with moderate/severe/profound disabilities; especially those that have communication deficits. Many of the programs I have seen use a lot of language and verbally mediated instruction.

The majority of my work is with adults who have disabilities; many of whom require help with basic self-care tasks. Unfortunately, this increases the likelihood that they will be abused. It can be difficult to teach the concepts of “private places” and “private parts” to people with disabilities who require extensive support. This is because, staff and caregivers often violate the privacy rules that we teach when we help with self-care tasks. When I teach the concept of private places, I teach that a private place may be “Private +1”. A “Private+1” place is a private location (i.e your bathroom) with an additional person that you choose who is helping you with very specific tasks. Then  I go over what specific tasks my client will need help with and what that help will look like. For instance, if a client needs “help in the bathroom” we specifically talk about what that means; does it mean you need help wiping your bottom after a bowel movement or you just need help sitting on the toilet? If my client is able to wipe themselves independently, but a staff member/caregiver is coming in and saying they will help and starts touching my clients bottom, this should be a red flag.

We also talk about the people that will be coming in to help them. Unfortunately, due to the nature of living in a group home, my clients may receive help with self-care tasks from people they are not familiar with. There are specific strategies staff can use to help teach new staff members how to safely do this, but that is beyond the scope of this post. For now, we talk about how a variety of people will be helping and we describe what that “helping” should look like.

Lastly, we make a plan that includes trusted and safe people. We review that your “Safe” person does not have to be your family. If my client was abused/neglected by family members, I do not want to teach that their family is who they can go to for help. I avoid using phrases like “If someone hurts you, tell someone in your family”. We talk about their “chosen family”. We list the people in their life who they trust and are close with. It is vital to have your client list more than one safe person.

Some questions to consider:

  • Am I specifically teaching vocabulary related to abuse prevention?
  • What words/phrases should be included when teaching abuse prevention?
  • Do I feel comfortable teaching this vocabulary (i.e. am I comfortable using the word rape, vulva or penis?)

Abuse prevention is a big topic, and one blog post isn’t going to do it justice. But I wanted to make sure that people have access to visuals or at least a jumping off point. If you are interested in visual/social stories to help you teach some of these concepts, check it out here:

https://www.teacherspayteachers.com/Product/Private-Plus-One-Teaching-Privacy-to-Individuals-with-High-Support-Needs-12700079