My focus has always been on working with neurodivergent individuals. Many of whom, have not had comprehensive sex education or have had a very limited sex education. Because sex education can protect against abuse and increase someone’s ability to have healthy relationships, I think this is incredibly important. So, here is what I do…
The first step is to assess the individual’s knowledge. What do they know and what do they not know? What we work on next will largely depend on that.
The second step is to tailor materials to meet the need of the individual. This might mean using visuals to portray difficult concepts, breaking complex skills into simple steps, modeling, repetition and feedback.
The third step is to train parents/staff (if this is determined to be appropriate and the individual requesting services gives consent). Parent and staff training might include how to support their child if they want to date or how to model concepts of consent at home.
Services can be provided in person or virtually, I have seen success in both areas. I can provide services individually or in a small group. As with all services I provide, participants are allowed to stop classes/intervention at any time. Consent is key!
I recently completed my certification to be a Certified Sexuality Educator. I have had some people give me weird looks when I say this and so I thought it was worth a discussion. Firstly, when I talk about teaching Sex Ed I am not simply talking about anatomy. While that is a big part of a complete Sex Ed program it is only the tip of the iceberg. Sexual education also includes instruction on:
Developing healthy relationships
Setting boundaries
Advocating for yourself
Getting consent
Communication skills
Conflict resolution
Dealing with rejection
How to respond to sexually explicit material
Sexual Development
How hormones impact behaviors
Concepts of public/private
Hygiene skills
Gender identify/sexual identify
And that is not an inclusive list. What you should know about a Certified Sexuality Educator is that it is a credential through an accredited organization. I had to demonstrate competencies in a variety of areas before I could even quality for the certification.
One of the biggest things I learned in my program is that everyone has different values, especially around love/romance/sex. My values are not the same as your values and will not try to push my values onto you. If you want services from me, it revolves entirely around your personal goals and values.
I have grown up with this idea that I need to be in the forefront. That my value is determined by my ability to be seen and noticed. Not only is this damaging for my mental health, but I also think it is against my new views and beliefs on disability justice.
I work with neurodivergent individuals. I remember a time when I would talk about how “special” they were to me. I would cry and all of a sudden, the narrative shifted from one about disability to one about me. It seemed almost equivalent to white tears…maybe they were “abled tears” (Leah Lakshmi Piepzna-Samarasinha in “Care Work: Dreaming Disability Justice”). (For those not familiar with the term white tears, this is when white people start to cry when they are presented with information about racial injustice. While showing emotion isn’t bad, white people publicly crying about injustices done to BIPOC individuals shifts the attention to them and comforting them.) When I talked about the injustices done to my clients I would cry and the discussion was no longer about them and how to change systems/organizations- it was about me. It was about people comforting me and telling me how great I was and how patient I was. In addition to stopping the conversation, this also perpetuated the idea that I was this neurotypical savior, and I was sacrificing so much to help the poor disabled people.
In an effort to change this mentally I have done a lot of reading in the area of disability justice and advocacy. I learned that if I want to be a disability advocate, that is not something that I get to decide. I don’t get to wear a disability justice shirt, throw some money at an organization and say “Look at me! I am a disability advocate”. No- the disabled people decide if I am an advocate. And if I am making the conversation about me and using them to make myself look better, then I am not being an advocate.
One of the best ways for me to advocate for those with disabilities is to help lift their voices so that others can hear about their experiences. Specifically, this means that if I talk about what I learned from them I give them credit. I give them credit for talking about their lived experiences. I publicize what they have to say so that more people can be educated about the lived experiences of neurodivergent individuals.
In order to be an advocate, I need to step back and get rid of this idea that my effectiveness and my worth is someone synonymous with how many people see me. Thus, I am going to start bringing attention to individuals with disabilities by quoting them, promoting their works and helping to increase their visibility.
Have you heard the term “emotional labor”? (This was a new one for me.) Emotional labor is the “mental and emotional work we do to maintain relationships with other people, whether that relationship is an intimate one, or simply coexisting with strangers in a public place” (Ada Hoffman). Emotional labor can include initiating interactions with friends, setting up activities, listening to someone talk and showing concern, being friendly to people at your place of work, etc. For some people this type of emotional labor is effortless, but for some people (especially those who are neurodivergent), this can take a lot of effort.
What I think us neurotypicals sometimes forget is that autistic folx are doing emotional labor all the time! Below are things that are considered emotional labor and can be extremely difficult and extremely easy for autistic folk. I am getting the following information from Ada Hoffman, an autistic writer. You can find more of her writing here.
Trying desperately to figure out people’s facial expressions, when reading faces doesn’t come naturally to you. (This and other items on the list are still emotional labour, even when they are unsuccessful. Building a bridge is still labour, even if the bridge falls down.)
Trying to figure out how to respond appropriately to a social situation, when actually you are baffled or just want to go away.
Trying REALLY HARD to organize your shit even though you have executive function problems.
Enduring sensory discomfort, like lights and noise and other people, so that you can do an important thing that unavoidably involves them (and everything does).
Suppressing types of stims that you know will bother people around you or otherwise draw unwanted attention.
Trying to figure out the appropriate way to say a potentially hurtful thing instead of just blurting it out.
Asking people explicitly how they are feeling or what they need, because you know it’s important and you know you won’t figure it out on your own. Working up your courage and asking even though you know some people are offended by being asked.
Asking for accommodations, especially in an environment that you’re not sure will take you seriously.
Working up the courage to do social interactions that you know will be exhausting but necessary.
Trying to figure out ways to do basic things like make friends or express your emotions safely, when the NT way of doing them makes no sense to you.
Dealing with the ableist things people do and say all day.
Dealing with anxiety, depression, trauma, OCD, and the MANY OTHER very common comorbid conditions of autism.
I am hoping as we start to realize that seemingly effortless things for neurotypical people take effort for neurodivergent people we will have more compassion and understanding. Below are some ways that I am going to try to show that compassion as a clinician.
Simply teaching my clients to advocate for themselves is putting all of the responsibility for accommodations on them. Job sites, schools and other professionals need to be educated on how to offer accommodations without waiting for them to be necessary. And society as a whole needs to be reframe the idea that “accommodations” make someone less then.
Simply teaching my clients to read body language and interpret facial cues is putting all of the responsibility of smooth social interactions on them. Neurotypical individuals can just as easily learn to be more concise with what they want and explain how they are feeling in clear terms instead of being cryptic. This would take a great load off of neurodivergent folx.
Normalize stimming. Interviews with autistic folx indicates that stimming can be very self-soothing. So, if we try to take that away or tell them to stop we are also taking away a coping mechanism. It seems silly to me that just because neurotypicals find a stim “annoying” the neurodivergent individual is responsible for stopping in order to make the neurotypicals more comfortable. Neurotypicals can learn to be flexible.
Neurodiversity is definitely the new buzz word. This could be a good thing because it shows more people are becoming educated/accepting of differences. But it could also be a bad thing as more and more people use the word without actually changing their behaviors.
Being a neurodiverse affirming therapist means that I am getting out of my comfort zone. The first thing I learned when trying to become more neurodiverse affirming is that I needed to put myself in spaces where I was not seen as the expert. This meant going to groups led by neurodiverse individuals, listening, learning and correcting my behaviors and actions.
In my efforts to expand my knowledge I came across “The Checklist of Neurotypical Privilege”. The original list (found here) contains 50 items, but these are the ones that I really resonated with me.
I can assume that police officers will not become alarmed at my natural body language and find it necessary to subdue me in advance of any wrongdoing.
I do not have to carry a special card or bracelet with me to explain my natural body movements or the sounds I naturally make.
I do not have to fear that important decisions about my life will be made by others who are considered more qualified based on their neurology.
People do not constantly tell me that I need to work on the things which I am very bad at, at the expense of things which I am good at and enjoy doing.
If I have a particular talent or ability, I can demonstrate that talent without being called an “idiot savant” or my talent being called a “splinter skill” or some other demeaning word.
For each of the bullets above I have had a client who has experienced this exact thing. I have clients who have had the cops called on them because they were pacing back and forth in a grocery store. (Needless to say, this was extremely traumatizing for my client). Unfortunately, I often recommend having a special card or bracelet for just this reason. If the police show up, my client is stressed and is not able to explain themselves well. A card is a simple way to help with that. But, at the same time, a little demeaning.
I was reading an article about ADHD and the article talked about how some individuals with ADHD can become hyper-focused on things that really interest them. All too often, we see this is a detriment for the neurodiverse individual when we would see it as a benefit for a neurotypical person. For instance, if a neurosurgeon spends hours a day reading about the brain and practicing movements needed in surgery we would applaud that individual for being so dedicated. If an author locked themselves in their room until they finished writing a chapter we would admire their commitment. Do we offer neurodiverse individuals that same acceptance? I know that in the past I haven’t. My personal goal is to change the way I view interests and “obsessions”.
When you wanted to get married, what did you have to do? Did you take a test? Did someone observe your cooking or budgeting skills? Were you quizzed on your emotional IQ? I am guessing you said “no”. Did you know that this is not the case for individuals with disabilities?
Photo Credit: history101.com
Marissa Debellis talks about these restrictions and how to increase sexual rights for disable individuals in her article “A Group Home Exclusively for Married Couples with Developmental Disabilities: A Natural Next Step”. Individuals with developmental disabilities who wish to marry are often required to prove that they have the skills necessary to do so. According to… “The law does not require you to prove that you can iron and wash clothes, and cook dinners, and balance a budget and wash the floor before you can get married. You don’t have to prove that you’re competent in any of those areas, and yet that’s what we’re telling them [disabled individuals]. So, we’re not treating them live everyone else. We’re singling them out and we’re denying them their rights based on criteria that have nothing to do with marriage”.
How did we get to the point where your ability to love/express love is based on pre-requisite skills? A lot of it goes back to the fact that individuals with disabilities still experience a lot of discrimination, despite laws attempting to curb this. In an attempt to protect disabled individuals, states make their own laws about what a legal marriage looks like. Some states require that an individual be able to “concentrate, understand, communicate, reason and recognize objects and people”. How is this measured? What does communicate mean? Are we denying rights to individuals simply because we cannot understand their communication (it seems like the fault is on us in that instance). How many objects/people do you have to recognize? And how in the world does concentration equal a happy marriage? If concentration is our golden standard then we just voided a whole bunch of marriages!
People are trying to protect individuals with disabilities. I get it and there are times when I agree with that being the goal. But in trying to protect individuals we are denying basic freedoms. I also think that we are trying to protect ourselves. Sexuality is often seen as an uncomfortable subject; even more so when we discuss the sexuality of individuals with disabilities. I feel like we are trying to relieve our anxiety and discomfort by requiring individuals to act in a way that makes us feel comfortable. So, while there is still so much to work through and unpack in the area of sexuality and disability I think that the first thing that people need to do is self-evaluate. We need to pause and ask ourselves:
“Is this topic/person/action making me uncomfortable?”
“Why is it making me uncomfortable”
“Am I putting restrictions in place so that I will feel better?”
“Are my assumptions minimizing this individual’s humanity?”.
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.
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.
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:
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).
