Is “Pairing” in ABA The Same As Therapeutic Rapport?

CW: The following article discusses the implementation of ABA interventions. Reader discretion advised.

I was sitting with my non-speaking client, him holding up some blue edible playdough his mom made. I smiled back, and we both snuck a bit to eat, enjoying the salty-sweet-doughy taste.

I had spent weeks just playing with him, developing a relationship. He felt safe and loved because I played with him and gave him my full attention.

A couple weeks after that, I began implementing his programming. Our fun playdough time of making weird shapes and eating the playdough turned into a rigid activity to teach him letters.

I asked him, “touch A!” as I laid out letter stencils. If he chose the correct one, I would press it on the playdough, and we would get to play with it. He enjoyed our game and responded correctly the first few times.

I was inexperienced and didn’t understand autism well enough at the time to understand the following events. He seemed happy, grinning at me and playing with his playdough. I felt pressured to get in as many trials as possible, counting them on my iPad because they proved to my superior that I was a good therapist.

I pushed him repeatedly, rewarding him only when he gave the correct answer, or I grabbed his hand and had him touch the right answer. I followed the prompt hierarchy like I was supposed to.

Suddenly I asked him, “touch O!” and he threw himself onto the ground, banging his head and crying. I was distressed, trying desperately to calm him down. I put safety mats under his head and panicked, telling him it would be okay. Eventually, I learned that if I stopped talking, he was able to self-regulate.

I didn’t understand how our positive relationship had instantly turned into a distressing one. It seemed like the behavior “came out of nowhere.” I didn’t understand the stress he felt when I switched from showing him unconditional positive regard to suddenly making it conditional. He wanted to do what I asked because he cared about me, but I wanted more and more and more.

I was doing a process called “pairing” in ABA. Pairing is the process when a practitioner develops a relationship with a client to become a source of reinforcement themselves. When the therapist is a reinforcer, success in changing behavior in ABA skyrockets.

Often the first few weeks with clients are spent exclusively pairing. From an ABA therapist’s standpoint, the benefits seem like a no-brainer. The kid should want to spend time with you and enjoy your time together. You should learn what they like and don’t.

For survivors of ABA, the motives are more sinister. Pairing has been called manipulative because many therapists then weaponize that relationship to gain compliance.

Both have strong arguments with significant consequences. Therapeutic rapport is well documented as one of the most necessary steps in therapy, but it creates harmful results if it is manipulative.

So, is pairing manipulative or good therapy?

Therapeutic Rapport

Therapeutic rapport has been long established as a necessary part of successful therapy and medicine.

Research on therapeutic rapport suggests that to develop rapport, a therapist or other healthcare provider should use active listening, maintain an open posture, be honest, and alter their behavior so their client can interpret it (pg. 151).

Clinicians must focus on cultural competency with therapeutic rapport and considering their client’s unique circumstances. When there is a discrepancy in power, whether cultural, economic, or social status, there’s an increased need for caution. A therapeutic relationship could quickly become manipulative or harmful if these factors are ignored.

Altering behaviors so clients can interpret them is especially relevant to autism. A therapist’s body language must be able to be interpreted by their autistic client, and consideration taken for whether their body language can be easily decoded. Without this, the therapist could easily convey meanings that are not intended and/or further distress the client.

Eye contact is also something that should not be present in therapeutic rapport for autistic individuals, though this is often recommended. With non-speaking clients, active listening of vocal language may not be possible; though active attention to non-vocal signals is necessary.

So, therapeutic rapport for autistic people is necessary for robust therapy. Is pairing a good way to go about it?

Why do Some People View Pairing As Manipulative?

Love bombing is the process in which the person in the relationship is showered with gifts and positive regard with the goal of emotional dependence. After the person develops feelings for the person they’re with, the gifts and attention are removed and become conditional, creating an inconsistent, stressful environment. This can further lead to abusive situations if the person doing the love bombing isn’t receiving compliance.

“Lieu, this sounds pretty extreme. Weren’t you just talking about therapeutic rapport and its benefits to clients?”

You’re right, it is an extreme comparison. But it is necessary to understand the difference between healthy therapeutic rapport and manipulative rapport that fosters dependence on the therapist.

Pairing gives children unconditional access to reinforcers like their favorite items, activities, and even food preferences. The therapist provides the child with their full attention and doesn’t make any demands, showing interest in whatever they are doing.

After the child is bonded to the therapist, the reinforcers are conditional. The attention is contingent. And the child has to comply with demands to receive this loving support to which they’ve grown attached.

Add to this the power dynamic between an adult in complete control of the child’s access to their preferred items, with the powerlessness of the child to control what is targeted in therapy. The relationship is set up to create ethical issues.

That isn’t to say every relationship with children after pairing will become manipulative. But all it takes is one therapist who doesn’t apply a goal correctly, acting under the wishes of a parent over the child’s interests, or is facing pressure to meet a quota of goals. It becomes clear how this relationship could easily be weaponized.

Practices like “planned ignoring” and “extinction plans” require therapists to withhold their positive regard or access to reinforcement until the child completes the behavior they need to see.

This creates a distressing environment because children are desperate to get back into the therapist’s favor. They want that positive attention and want to feel loved by their therapist. Making that contingent teaches children several problematic lessons like compliance as love, non-compliance as unworthiness, and positive regard being conditional.

“Pairing is Just Therapeutic Rapport!”

Now that we’ve examined therapeutic rapport and pairing, it is necessary to understand why pairing should not be considered therapeutic rapport.

One of the key things that separate it from therapeutic rapport is the intentional removal of reinforcement.

Imagine starting therapy with a cognitive therapist who showed unconditional positive regard, openness, and altered their behavior to help you interpret it. You feel comfortable expressing your vulnerabilities and may even cry, breakdown, or tell them things you’ve never told anyone.

After five sessions of doing this, the therapist suddenly becomes cold and closed to you. They tell you for therapy to work, you have to stop crying when you come into therapy. It’s labeled as a “maladaptive behavior” and targeted for reduction. When you go the whole session without crying, she smiles at you and shows you the same level of attention you received in the beginning. You may feel confused or distressed by this sudden switch in demeanor.

Would you go back to this therapist? What if you didn’t have a choice?

There’s no point in therapeutic rapport in any other therapy type where the aspects of therapeutic rapport are reversed.

Further, suppose this is at a clinic where the therapists receive little to no education on aspects of autism. They may be incapable of modifying their behavior to be interpretable to clients. They may assume that their behavior is perfectly fine and it’s the client that is refusing to make an effort to interpret.

“My Client Loves Being Around Me, I Would Never Harm Them”

It’s a thought I had when I was in ABA. How could I be harming anyone if I was met by smiles, excitement, and unprompted bids for attention?

I certainly had no intention of harming anyone. I was there because I wanted to help, and in my mind, I was! I was taught that a behavior change was a marker of success, so I was clearly succeeding through a tangible measure of progress.

I ignored how “maladaptive behaviors” that clients experienced during my sessions may be an indication that everything wasn’t rosy. I ignored the meltdowns, the non-responsiveness, the times when I pushed too hard or didn’t understand the cause of their behavior. I ignored my contribution to the behaviors that “seemed out of nowhere.” And I saw it happening with other therapists, but no one seemed to see anything wrong.

It’s a scary thought, but you can harm someone without intending to. And if you’ve dedicated years to something to try to help someone, you have a lot of incentive to ignore those adverse outcomes.

If you’ve read this far and are an ABA therapist, I genuinely applaud you. It’s hard to examine your own flaws, and it’s clear you’re trying to do better. Otherwise, you wouldn’t be here.

If you’re looking to do better, look into how to develop therapeutic rapport. Do research on autistic traits and how to make your behavior easier to interpret for an autistic person. And replace pairing with developing evidence-based therapeutic rapport.

Clients deserve transparency in their therapy, including their expectations beyond initial impressions. Don’t set a false expectation of the treatment you’re practicing through pairing.

One Year Traumaversary of My Job at “The Good ABA”

Here is my experience with ABA: https://lifeoflieu.com/2022/01/22/i-was-part-of-the-good-aba/

Working in ABA was genuinely traumatic for me. Every night, I woke up in a sweat, nightmares plaguing me with how I was treated and my powerlessness. When I worked my next job, I had a hard time expressing myself because I was so scared of being hated for being autistic. I didn’t just burn out, I imploded.

To gain sanity with a situation where I was gaslit daily, I started speaking out. I never intended to become an advocate, but I naturally found myself in advocacy when I needed validation that what I was experiencing was as bad as I felt.

It’s incredible that it’s been a year since I left my job in ABA. So much has been accomplished in such little time. I’ve been able to tell my story to over a million people, have received letters from countless practitioners thanking me for helping them understand the problems in their field, and was able to get an autism diagnosis.

But the first-year traumaversary is always the worst. You start getting triggered over the most random things, nightmares rear their ugly head, and emotional flashbacks come in waves. So, to put that energy somewhere productive, I’ve come up with some takeaways from my experience.

While reflecting on this year, here’s a list of 5 things I learned about myself and ABA.

1. Don’t sign a contract that requires you to pay money if you quit.

When you want to work a job badly enough in a field you’re passionate about, it’s easy to overlook the warning signs. Seems obvious, and yet I still did it, so you could too. It indicates high turnover and locks you into the company. It’s the “don’t marry a man you just met” of the professional world.

Because ABA often hires young 18-22 yrs old fresh out of high school, many are inexperienced with the professional world. This leaves them vulnerable to exploitation from their companies and toxic power dynamics with their superiors.

I’d imagine my experience with this is also not uncommon. Companies that do this restrict their practitioners from leaving which leads to bad outcomes for everyone involved.

2. ABA is omnipresent and restricts access to services.

ABA is EVERYWHERE. It has dominated autism therapy. Even other therapies like occupational therapy and speech-language therapy are now using ABA. If you don’t want ABA, you’re out of luck in most places.

ABA shuts down valid critiques by dismissing them as “not understanding ABA” or having some vendetta against the science. It has portrayed itself as the “only cure to autism” to the point that other therapies are no longer available and shuts down the voices of the population it serves. I’m not the only one that believes this. Researchers have remarked that it’s “ideological warfare.”

Callahan et al. (2009) ran a study where they de-identified ABA and TEACCH (a therapy focused on working on the underlying elements of the behavior of autistic people) and showed that when they removed the labels ABA and TEACCH, people rated the treatment by their descriptions as equally effective. This finding was contrary to the “ABA is the only way” advocacy done by ABA professionals and parents. ABA advocates present non-behavioral interventions as not evidence-based, which is just false.

This attitude is pervasive among ABA professionals and parents. I remember ABA presented as a miracle cure for autism. This evidence supported changing problematic behaviors like self-harm and aggression while increasing communication.

It came as a shock to me later that there weren’t investigations into outcomes other than behavioral as far as what was considered successful. ABA was replacing other evidence-based practices and claiming it was the only one. It made all of these claims and yet didn’t educate its practitioners on fundamentals like communication, autism characteristics, and other therapies.

3. Unethical practice isn’t usually committed by “Unethical People.”

“It requires conducive social conditions, rather than monstrous people, to produce heinous deeds.” – Albert Bandura.

To sum up my experience, people that cared deeply about autistic children committed the unethical practices I witnessed. This care doesn’t excuse their actions, but it was astonishing to watch the step between having excellent intentions and doing horrible things. The two are much closer than is comfortable.

So, how does abuse happen? When you believe what you are doing has such profound consequences that you are saving another person, it’s easy to justify any “momentary discomfort.”

Discomfort is inevitable in life. What becomes necessary discomfort vs. unnecessary? It’s easy to see how someone might believe what they are doing is necessary discomfort when comparing it to the usual things we encounter in life. Particularly if that person is neurotypical, they may not fully grasp the physical pain experienced by sensory stimuli that they find as just annoying.

My supervisor wasn’t a monster. She was an overworked, underpaid practitioner who genuinely wanted to help the children she worked for and tried to study contemporary literature/practice. She was in a clinic run by a woman who viewed herself as saving her son with “severe autism” through ABA, which enabled the social conditions for anything to be justified in pursuit of a cure.

And that’s why my supervisor objected to me “calling her actions abuse.” In her mind, it wasn’t abuse. It was “allowing mom a moment of free time,” “keeping the child safe from extreme behaviors like self-harm,” and “teaching him to tolerate the sensory harshness of the real world.”

I want to emphasize that what she did was absolutely abuse. She tortured a kid for 20 mins to make them cry and laughed about his PTSD symptoms exhibited after. But, it’s understandable how she committed that unethical act despite her attempting to be an “ethical person.”

4. The BACB is one of the most ineffective ethical bodies.

The BACB has incredibly loose guidelines around ABA’s ethics, allowing almost anything to count as ethical. Most of the ethics focus on treatment fidelity, not on client dignity. And for them to investigate a case, you must come with documentation. They will not investigate themselves, only look over the evidence you present. It’s why I ended up not reporting.

They are also not overseen by any department. State to state, there are differences in how licenses are involved, but there is no overarching licensing body that is not tied to ABA. Unlike therapists, they are not required to report to a “state ABA licensing board”. And even in states that allow BCBAs to be grandfathered in as licensed practitioners, RBTs are often not.

And that’s not to mention they allow shock devices to be used with autistic people due to this loose ethical code like in the case of Judge Rotenberg Center. Shock devices. In 2022. This isn’t the “ancient” history of doing barbaric things to psych patients. This is modern history and not only legal, but ABA’s main ethical body also approves of it. If that’s considered an acceptable aversive, pretty much anything goes.

Carol Millman puts it well: “Only three subsections in the Behavior Analyst Certification Board’s professional code of ethics even address the wellbeing of the learner…The BACB says nothing about inflicting pain. There’s nothing in the BACB ethics code [that] says you can’t use electric shock. In fact, it doesn’t say anything at all about what type of ‘aversives’ are acceptable.”

I remember first learning about shock devices as a practitioner, and my gut reaction was, “well, our clinic doesn’t do that!”.

To practitioners reading this, listen closely. The problem is more extensive than shock devices (though that should be a red flag). The problem is that the governing ethics body allows the use of shock devices, which means that there’s a lot of unethical conduct that they also allow.

Just because you haven’t had the BACB contacted, or you have, and they deemed your actions ethical, does not mean that you are acting ethically. And that’s a poor standard for an ethics body.

5. Trust your gut.

Okay, this one seems obvious, but it’s easy to lose yourself at a job. Capitalism is a cruel master that conditions you to trust your boss and enforces a strict hierarchy. As an RBT, you are motivated to shut up and listen to your BCBA. This creates a culture of compliance. I’ve seen it now in other clinics and the one I worked at where BCBAs will try to use ABA on the RBTs they supervise. This is wildly inappropriate and not within their scope of practice. Not to mention is a massive break in consent.

Something deep inside you lets you know whether what you’re doing is moral. We’re all biased towards believing we are moral (and often ignore signs that we’re not), but if you’re questioning whether a decision you made is ethical, it’s a sign to take a step back and assess the situation. Get opinions outside your field, especially from the clientele you serve. Reach out to ethics hotlines and ask the internet. Find information from unbiased sources. And listen to your gut. If something feels off, it probably is.

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I’m so grateful to be out. I’ve learned a lot from my experience, and I hope this can shed light on others’ situations so they don’t have to learn the lesson I did the hard way.

It’s funny how the most traumatizing experiences can fundamentally shape your life. I can thank my old clinic for that. It showed me I was autistic by ruthlessly punishing autistic expression and gave me a direction for the therapy career I’m pursuing. So thanks, I guess.

14 genders, 1 body: How to Navigate Gender Identity as a DID System Pt. 2

Check out Pt. 1

A man named Alex took over my* body for 6 months. (*This story is from the primary host, Marion’s perspective.)

If you’re not a system, you’re probably confused. How does someone take over a body? Was I possessed?

I have been the main person that has interacted with the world since my DID system was about 11. Most people that know my system think of me when they describe us. I didn’t realize that there was anyone else inside my head.

Following a traumatic event, I disappeared. It wasn’t a conscious choice. I got so overwhelmed and so traumatized that a new alter split.

He’s a trans man. I am not. (I’m trans non-binary, but I identified as a woman at the time)

So, you can imagine my surprise when I woke up for the first time in months, sitting in a coffee shop halfway across the country, wearing men’s clothing.

We fought for control and became more dissociated and amnesic. I wanted to identify as a woman, and he wanted to identify as a man. He had spent all summer going through the painstaking process of gender questioning, meeting other trans folks, and coming out to everyone in our life. He had been harassed for being trans and dealt with discrimination I hadn’t experienced. He had a whole life that I was suddenly interrupting. Meanwhile, he had taken my life and changed nearly every aspect.

During this time, he went into a clinic to get trans hormone replacement therapy (HRT). He was doing what every trans media and resource encouraged him to. He was pursuing his true identity and becoming more comfortable in his body.

When he went to the clinic, things devolved pretty quickly. Several alters fought to control the situation, and we became so dissociated a child alter fronted (became conscious and in control).

The doctor acted within WPATH standards of care (top trans medical standards) for dissociative identity disorder and gender dysphoria and denied us hormones. Alex and the other men in the system were devastated. The child alter was overwhelmed waking up in a medical clinic, and we ran to the car in tears.

The doctor made the right call, but Alex had worked months to get to that point. He had taken all the steps only to have his efforts destroyed at the last second.

Sometimes transition isn’t a straightforward process. That’s especially true for systems. It’s okay to wait until everyone’s ready. It’s okay to be trans and never medically transition or come out to others.

My Alters Want to Transition, What Do I Do?

If alters in your system want to transition, your system has a tough call to make. See pt. 1 for some of the considerations like what degree of transition and how public your transition is.

This is where communication is essential. Use your system’s form of communication to discuss if everyone’s on board. If you’re not sure how to do this, there are a lot of options which I discuss in Pt. 1

What’s important is that every person in the system agrees with whatever decision is made.

To resolve our conflict, we had a meeting in the headspace and voted. We texted each other (I recommend either Simply Plural app or Plural Kit Bot on Discord). We also discussed it with several friends and our therapist, who could tell us what other alters were thinking.

One alter that had a challenging time was Rose. She still identifies as a woman and now lives in a trans masc body. She was worried about giving up having biological kids, being comfortable when she’s out, and losing feminine characteristics. She loves singing and had to sacrifice her voice when we medically transitioned.

Ultimately, she decided that she was willing to give up some of her qualities for the system’s good. It was altruistic and came with a sense of grief that most trans people don’t experience. It wasn’t just losing an old life; it was losing a fundamental aspect of herself.

A few unique considerations have to be in place before a system transitions. One of the largest is how do we support alters that identify with the body’s assigned gender?

You may be trading gender dysphoria for some alters for gender dysphoria for others. It’s a good idea to be well versed in the counterpart transition to your own. For example, if you’re AFAB (assigned female at birth) and transitioning to appear masculine, you should be versed in how AMAB (assigned male) individuals transition to appear feminine.

Ways that we support our female alters now that we present masc are always having feminine clothes on hand (including feminine undergarments), negotiating as much as possible before switching in and out, keeping makeup around, and allowing them to present female when they’re out. We don’t suppress the feminine traits they express and give them space to still be women.

We’ve found that keeping a fairly androgynous appearance allows for fluidity. We have long hair, mix traditionally feminine and masculine clothing, and only accentuate masculine or feminine qualities depending on who’s fronting. This was part of our system’s compromise, so everyone is comfortable.

Find your non-negotiables. What qualities about identifying as man, woman, non-binary, etc., are crucial for alters to feel comfortable? Respect non-negotiables and work around them.

You will need to compromise with your system so everyone feels supported. Otherwise, you will enhance your gender dysphoria and may be denied trans care.

And remember that one compromise you can make is doing some medical or social treatments but not all. Many people choose to go on hormones to get some of the features and then go off. Some people get surgery without ever doing other treatments, and some people socially transition but never medically transition.

If you decide as a system not to transition, there are things that your system must do to help alters that do experience gender dysphoria.

Best Supporting Trans Alters if You Don’t Transition

If your system ultimately decides not to transition, you need to plan with trans alters.

Learn in great detail how to reduce gender dysphoria. This may mean that you need to purchase gender-affirming clothing items like a chest binder or a gaff. You may need to get clothes and accessories in line with your trans alters (I always thrift items because of how diverse my wardrobe has to be). You could learn new skills like how to do makeup, voice training, or spend a lot of time people-watching.

People-watching is one of the best tips I have for trans alters. The way you carry yourself, speak, and use body language has one of the most significant impacts on how people perceive your gender (without medical procedures). Find somewhere you can sit and observe, like a mall, and notice how men and women act differently. Practice the mannerisms you see and notice any difference in how you feel.

Another gender dysphoria busting tip is to do something traditionally associated with the gender you want to be perceived as. It was incredibly validating for Alex to go to the shooting range because he was always perceived and treated as masculine.

Negotiate with trans alters before and after you plan on fronting if possible, and keep a change of clothes handy if you think that it’s possible that your trans alter may want to change when they’re out.

Connect with local trans groups. Other trans folks may not understand your specific experience of being a system and having trans alters, but they will understand what gender dysphoria is like and encourage you to present comfortably regardless of who’s out.

Like a system that decides to transition, you have to treat your individual alters dysphoria. Make sure they feel supported and like they can be as comfortable as possible when they’re out.

And if dysphoria hits a point where you are feeling suicidal or need help, please reach out to a therapist or crisis line.

Helping the System in My Life

When watching someone go through a gender crisis, it can be challenging to see them struggle with such a big decision. If you’re a partner, you may wonder how that will affect your relationship and sexuality. It gets even more complicated when that person is a system because you may be hearing opposite things when different people are fronting.

Some of the ways you can support the system are listening and giving as much information as the system is comfortable, respecting whatever the system decides individually and as a whole, and being informed on transition.

Some systems may value talking to someone and having them help relay what other alters are saying with their consent. Others may feel that’s a breach of privacy. Ask what they would prefer.

As the system in your life is deciding, they may change their mind several times. They may want specific pronouns only used sometimes or not used at all. Respect their wishes and refer to them however they’d like. If they change their mind, respect that change. Their crisis is for them to figure out, and it’s not going to be a static process. If you’re having trouble with the number of changes, seek a therapist to talk through your experience.

The final thing you can do to help the system in your life is to be informed about transition. Look up what is typical in a transition and ways to help gender dysphoria. Be informed so that the system doesn’t have to spend the emotional labor to explain transition. It will also make them feel heard and validated. You may also look into systems experience with gender, though resources are few and far between. However, knowing more about how alters work may help shed some light on some of the dynamics.

There are groups for supporters of trans individuals and groups for supporters of systems. Seek out these online spaces to learn from others in your situation.

There is No Wrong Answer.

The last thing I’d like to emphasize in this series is there are no wrong answers. Whether you make a decision and stick with that decision the rest of your life, or whether you change your gender a million times, there are no wrong answers. There’s no wrong way to transition because your gender experience is unique to you.

I hope that some of the tips I’ve given serve as a resource for systems going through gender crises. If you have any questions or want to have a conversation, please reach out. If you’re still unsure of where you stand, feel free to revisit the questions in Pt. 1.

14 genders, 1 body: How to Navigate Gender Identity as a Dissociative Identity Disorder (DID) System Pt. 1

I’m not a man. Which sounds like a confusing statement. After all, I’ve had two gender-confirming surgeries, been on Testosterone for 2 years, and lived and interacted with the world as a man for over 3 years. I use he pronouns, dress masculine (most of the time), and proudly sport a middle school quality mustache.

I don’t identify with non-binary, agender, or woman either. I am all of these and none. There is no singular gender because there’s no singular me.

I think people forget that DID affects EVERY aspect of a person’s life. It’s not just changing names and appearances. It affects your self-concept and bodily autonomy.

The current theory on DID is that it is formed from severe, persistent trauma, where the child develops alters built out of things they observe to protect functionality.

There are no rules for what these constructs are. Nothing dictating whether the new alters match the gender of the body.

In fact, approximately 50% of DID systems have a trans alter (pg.110), and approx. 66-75% of AMAB (assigned male at birth) systems have a female alter. Conversely, 30% of people with Gender Dysphoria meet the criteria for a dissociative disorder. So, you’re more likely to be trans if you’re a system and more likely to be a system if you’re trans.

So, when there are 14 people (and counting?) in one body, gender gets… messy.

Navigating Multiple Genders

When I questioned my own gender, I was surprised that there are no resources for trans systems. Most people don’t experience multiple genders which makes figuring out gender identity impossible to navigate.

For example, one of the exercises is asking, “if you had a button that when you press it would change your gender, and everyone would have no memory of you as the previous gender, would you press it?” A follow-up might be, “what if there was a button you could press to change your gender whenever you want?” The answer to the first determines if someone is trans binary, the second determines if they are trans non-binary.

For a system, the question can’t be that simple. One alter may say yes, but another may say no. One alter may be binary, while another is non-binary. Nothing instructs what to do when you can get more than one answer to that question.

For an alter that is trying to figure out their own identity, trans resources can be invaluable. But if you’re trying to decide as a system if you should transition, then you’re out of luck.

Here is the advice I would have wanted to receive when I went through gender crisis as a system.

Questioning

Every member of the system needs to have a say. And every member may have to make sacrifices for the system’s good.

That’s a scary thought. Why should I have to give up my expression of myself for someone else? What happened to “be proud of who you are”?

To understand your gender as a system and as alters, you have to re-contextualize transitioning. Transition for most people feels like you either transition or don’t. But that doesn’t work for systems.

You likely have some analogy that works best for your system. For us, we identify as a family, but others classify themselves as roommates, friends, or neighbors. Regardless, you’re all living in the same “house” (body).

After thinking about my house’s appearance, I decide it should be green with kaleidoscope wallpaper. My brother, Alex, wants the house to be dark blue with a pride flag on the wall. Our Aunt Rose wants the house to look pink with a lovely white trim.

If we all try to have our way, we’re going to have to do a lot of repainting. Which isn’t realistic for us in the long run. Maybe you’re okay spending the energy to repaint every day, and that’s okay too.

The apparent solution is we have to have a family meeting. What color do we collectively paint the house? Do we get our own rooms with different colors and styles? How often do we want guests to see the rooms?

A system must communicate everyone’s wants/needs in whatever style works best for that system. Some systems keep a system log, a journal, have headspace meetings, write notes to one another, discuss their feelings through a safe person (like a therapist or friend), or communicate directly.

The important thing is that everyone gets to say what they want to happen, and there is a mutually reached decision. Otherwise, you will throw your system into chaos and dysfunction, which our system tried to do. For us, this meant greater amnesia, significant life dysfunction, and delays in transition-related treatment.

The other thing to consider is what you want to happen. Remember, there is no right or wrong way to transition. And there isn’t a “complete” transition. It’s up to each person to decide what version of transition is right for them.

Here are questions you could consider as a system:

• Do we want a singular gender identity that we use to interact with the outside world, or would we prefer to be recognized individually?
• Do we want collective pronouns or do we want to be referred as individual pronouns depending on who’s fronting? Do we want a mix of both?
• If we have a singular gender identity, do we want to identify as binary or non-binary?
• Does gender-fluid describe our experience?
• Do we want to dress in a particular gender expression or do we let everyone choose when they’re out?
• Do we care if people outside the body know we have multiple genders? Who do we want to disclose that to? Partner, friends, family, coworkers, classmates, etc.?
• Are there more alters of a particular gender? How do we support alters that don’t identify with the majority?
• Do we want to take hormone treatments? How will we support alters that may be affected negatively by those treatments?
• If we go on hormone treatments, do we want to stay on them forever or would we prefer to go off them and achieve a more androgynous body?
• Do we want any gender-affirming surgeries? How will we support alters that may be negatively affected by these surgeries?
• Do we want to collectively change our name? Do we want to pursue legally changing it?
• Will our current care providers support our decision? Will we have to seek out a specialized provider to transition?
• How will this affect our sexuality?
• How will we tell people around us if we decide to transition and what will we tell them?
• Are we comfortable experimenting with different presentations? What settings are we comfortable with experimenting?
• Are there local or online communities that may help us feel supported in our experience or gender crisis?
• Are we in a safe context to come out? Should we wait?
• Are we comfortable changing our mind if we realize transition isn’t what’s best for our system?
• Do any of us plan on having kids, and are biological kids important? (Keep in mind that trans hormones and surgeries don’t necessarily affect your ability to have bio kids, but some do)
• Do we want to change any external characteristics or are we comfortable identifying as different genders in the headspace alone?
• How will we explain this process to younger alters or non-human alters?
• How do we minimize gender dysphoria for any alter that doesn’t align with the body? (More on this in Pt. 2)

Results of Gender Questioning

The above questions may take a lot of time to figure out. There is no timeline for transition, and it’s okay if it takes you years.

A word of caution, do not rush this process.

I know how tempting it is to “do it anyway” when the rest of the system doesn’t agree. It’s my body as much as it is everyone else’s, and I should get to decide what’s best for me! It is physically painful to be in the wrong body and constantly reminded of it by the external world.

In a perfect world, all of us would have our own bodies. We could decide what’s best for us and us alone. But if you choose to do it anyway, you will create a power struggle. Others in the system will try to take the front back. You will increase amnesia as everyone is fighting for complete control of the body. You will dissociate more, and you will be hurting others in the system.

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Eventually, you will come to a decision. I know it’s agonizing questioning your gender, and even worse when you have to factor in the complexities of several people. It can feel like it will never end and that you will never come to a decision everyone is happy with.

You will. And you’ll be so much better off once you’ve found it because then you’ll be able to live authentically as the whole system. It can be incredibly healing and may even decrease amnesia as you learn to make decisions together.

In Pt.2, I’ll discuss how to best support your system whether you decide to transition or not and how people in your life can best support you. No matter what you choose, there are resources for your system.

It’s a stressful process, but it is so worth it.

The Self-Harm Bogeyman in ABA

CW: The following article may be triggering to people that struggle with self-harm and contain descriptions that may not be appropriate for everyone.

“ABA has helped this autistic child so much. They’ve stopped self-harming!”

The phrase is beaten like a drum by pro-ABA advocates. It’s an anthem that proclaims, “ABA isn’t bad because it stops harm!” The problem is it doesn’t address what lengths ABA is going to stop that harm. And does harm need to be stopped behaviorally in the first place?

Autistic people are three times more likely to self-harm in both children and adults than the general population. An estimated 42% of autistic people engage in self-injury. It’s clearly behavior that requires attention.

I think most neurotypicals (in the broad sense, not mentally ill) view self-harm as an irredeemable behavior that needs to be stopped at all costs. It’s a visual representation of how abnormal someone is acting. It’s unfathomable; why on Earth would you ever want to hurt yourself? Isn’t that against the integral drive of self-preservation?

Let me be clear, I do not advocate for self-harm, nor do I think that it’s bad to stop it. Certain self-harm behaviors pose a threat to safety and long-term well-being. Some people struggle with head-banging so severe they cause concussions or worse. There are interventions that help with this that are more humane than ABA, but I will get into that in a minute.

In my own experience, I have self-harmed both for sensory seeking reasons and for “mental health” reasons. There are many reasons people self-harm, and most people don’t really think about why someone might use it as a coping mechanism.

For me, my self-harm during meltdowns comes in the form of hitting my head or hitting my head against things. I’m old enough now to regulate my environment, so I can choose soft things to headbang against. I also used to self-harm as a teenager during acute panic attacks. So, why would I self-harm?

It Starts with Understanding What a Meltdown is Like

Think of the most unpleasant busy place you go. Maybe it’s a post office full of people. Maybe it’s the department store the weekend before Christmas. Or maybe it’s a kid’s party where every child is screaming and running around. Now imagine your least favorite song. It can be anything, just that song that when you hear it, you feel angry. Maybe it’s Baby Shark or Let it Go for the 100th time. Got it? Now imagine you’re hungry and tired on top of all of that.

So, putting that all together, you’re at another child’s birthday party, and someone just brought out the cake, and so everyone is screaming. In the background, Cocomelon is blasting at an unholy volume. You skipped breakfast because you were running late trying to take your kid to this f*$&!^@ party, and you worked late, so you got 6 hrs of sleep. Spend a moment here. Hear the screaming, feel the full-body ache of hunger and tiredness, feel the bristling of hearing that song.

It’s horrible, isn’t it? Makes you want to “bang your head against the wall”? That’s it. Now you understand why an autistic child in similar circumstances may actually bang their head against the wall.

For me, it feels like a million sirens are going off in my head all at once, which is physically painful. All I want to do is stop the noise. What stops the noise? Hitting my head. That hard sensation quiets things, even if only for a moment.

Other forms of self-harm do the same thing. They create a sensation so extreme that it can take away the pain for a minute. Like the tongue-in-cheek adage of “Your finger hurts? I’ll hit your leg with a hammer and I promise your finger won’t hurt anymore.”

I’ve also heard from others that sometimes they physically can’t feel the self-harm during a meltdown. If everything is cranked up to a 10, what normally would register as a 10 with banging your head isn’t going to register.

And then there’s the aspect of anxiety. Going back to the kid-birthday-party-hell scenario created earlier, imagine how you would feel. It’s such an overwhelming situation you’d likely feel incredibly anxious. Particularly if you were a child and couldn’t control the situation or remove yourself when the anxiety started to build. Or, maybe you don’t know what “anxiety” feels like, so you’re not sure why you suddenly feel bad all at once and don’t know what to do with it. On top of that, adults around you are freaking out and telling you to stop and wanting you to fulfill all sorts of demands.

What do you do with that anxiety when you don’t know how to cope with it? I’m sure you’re starting to see how self-harm might make sense to cope with anxiety. The body doesn’t process how harm is caused differently when you’re the one causing the harm. It just registers it as harm. And what happens when harm is caused? Endorphins are released.

Self-Harm and Self-regulation

One study examined people’s endorphin levels before and after self-harming (Störkel et al., 2021). They found that people before self-harm had significantly lower endorphin levels. Endorphins after self-harming weren’t significantly higher than daily life. This suggests that self-harm may be an attempt to get back to homeostasis, the baseline endorphin level that we experience daily.

Another interesting finding was that the severity of the injury was tied to the level of endorphins released, which has implications for more severe levels of self-harm in autistic people.

Self-harm serves a purpose. So, when ABA “trains” self-harm behaviors out of a person, it doesn’t address the purpose. There is no physiological intervention done. There is no cognitive intervention done. It only removes the behavior. So, where does that anxiety or sensory overload go?

The truth is, we don’t know. It’s not something that ABA research has studied. ABA research has been so focused on behavioral outcomes that we don’t know the effect of ABA on anxiety. We know that CBT (cognitive behavioral therapy) and ACT (acceptance and commitment therapy) effectively reduce anxiety in autism. But these differ from ABA in that they are cognitively based.

We have no evidence to support that the anxiety and sensory overload experienced during meltdowns goes away when self-harm is trained out of someone. What kind of harm is caused if we’re not teaching cognitive coping skills to deal with these feelings?

This is the last time I’ll bring you back to the kids-birthday-party scenario, but bear with me. Imagine that state of overwhelm happens frequently, and you don’t have any means of coping with it other than self-harm.

Then, imagine someone comes along and takes away your phone until you stop self-harming. You learn over time that you can get your phone back if you don’t self-harm (or not get it taken in the first place), so you learn not to self-harm. Does having your phone stop you from feeling overwhelmed at the party?

No, having your phone doesn’t stop anything from happening around you. It just gives you access to something that you are really reinforced by. But it was successful because you stopped self-harming, right?

Outside the Scope of ABA

Many clinics don’t train staff at all to deal with sensory meltdowns. As an RBT (registered behavior technician), I asked my BCBA (board-certified behavior analyst) to train us on sensory meltdowns. I noticed staff were often making meltdowns worse. She said, “no, that’s outside our scope.”

If a fundamental symptom of autism is outside the scope of an ABA therapist, and kids are spending 20-50 hrs a week with these therapists, how do we expect them to handle meltdowns? Many behaviorists believe that ABA can fix meltdowns through behavioral mechanisms. I saw this with my coworkers.

We were trained to assume the meltdown was caused by the function of access, escape, or attention.

When they thought it was access, they wouldn’t give the child access to regulating items (stim toys, etc.) until the child performed another task so it “wasn’t contingent on the self-harm.” When it was escape, they’d force the child to do whatever task they were doing before the self-harm, so “we didn’t reinforce them to self-harm.” And when it was attention, they would take the kid to a padded room and then ignore them until they stopped.

I watched the staff do this, and the kids get increasingly agitated, if not immediately meltdown. They would often start with smaller behaviors like crying, which escalated to self-harm when they weren’t given the tools to regulate. The staff was causing meltdowns by not knowing how to handle them.

The level of education ABA therapists have (or don’t) causes real-life consequences. Since I have personal experience dealing with meltdowns, I knew how to help the kids cope.

One kid was violently self-harming and aggressing against others. I dimmed all the lights, helped him get to a safe space and started giving him sensory items I knew he liked. This was the opposite of how I was “supposed” to help him because I was reinforcing his self-harm by giving him coping items. All the other staff was panicking, trying to figure out what to do, and there were about seven adults in the room trying to calm this one kid.

I showed him a sand video and he calmed down almost instantly. I reversed the meltdown because I showed him how to sensory cope. Because we had a good relationship, he wasn’t agitated by me being close to him like some other staff. He stopped self-harming and stopped being aggressive towards others.

Alternative ways of coping

There are ways to deal with self-harm that are humane. And not every self-harm behavior needs to have an intervention. I don’t stop myself from self-harming anymore unless there’s a real risk of harm. I’ve learned sensory coping. I taught myself ways to “harm” that won’t leave lasting marks, like headbanging on soft items, holding ice cubes, flicking myself with a hair tie, or hitting myself in ways that won’t bruise.

Occupational therapy, non-ABA TEACCH, art therapies, and cognitive therapies (like TF-CBT, ACT, and DBT) are all options for reducing harm ethically. These are humane, opposed to ABA because they help address the cause of the behavior. An OT might help you find a space at the party that’s quiet. A non-ABA TEACCH interventionist may teach your family how to help you regulate in the overwhelming environment. An art therapist may have you draw, listen to music, or create something to help you regulate your feelings. And a cognitive therapist may teach you the mental techniques you can use to help bring you back to a state of homeostasis without self-harm.

So, when you hear, “this child is so much better off because ABA fixed their self-harm behavior!” you should be asking, “what skills did they learn to regulate the cause of the behavior?”. For self-harm to be truly addressed, we cannot solve it through further harm.

Masking 101: What I Wish My Parents Knew Pt. 2

Here is Pt. 1.

When I was young, I was labeled “gifted.” The Gifted Kid ideology promotes the idea of these young prodigies – talented in academics, social issues, leadership, technology, art, physical skills, or proficient in any other area. There’s supposedly a symptom list associated with gifted children; having a hard time connecting with peers, boredom at school, hyperlexia, having strong feelings compared to other children, and hiding their “giftedness” to fit in.

Sound familiar?

I wasn’t gifted, I was an autistic girl (read AFAB) with ADHD.

The gifted movement has been critiqued for lumping in neurodivergent traits as “symptoms of giftedness” and leading to “gifted kid burnout.” In recent years, the gifted kid movement has tried to pass itself off as a form of neurodivergence in itself, without any professional classification of this so-called “giftedness.”

As is typical of gifted children, I worked hard to hide my “giftedness.” I suppressed my extreme emotions, didn’t discuss my special interests, dumbed down my vocabulary, and tried to remove every autistic trait I could in an attempt to make friends and not be bullied.

I learned masking.

Cutting Away the Parts of Myself That Weren’t Normal

I experience emotions intensely, to the point the smallest injustices feel like a personal calling. Some professionals would likely pathologize it as “moral black and white thinking.” I just call it empathy.

When I was 10, I had a pet ladybug I found outside that I would gaze at for hours. I asked my mom to Google what ladybugs ate and tried to find small bugs in the garden to feed it. I took it out of the little plastic enclosure and let it climb across my arm, engrossed with the little creature.

Unsurprisingly, I lost it somewhere in the kitchen and never found the ladybug again. I cried and cried for days about it. I searched frantically for it. Eventually, I moved on after mourning the loss of my new friend.

When I heard good news, I would jump up and down and flap my hands. I would scream and run around the house and be elated for days.

My emotions were too much for most people in my life to handle. I would get scolded by my parents, teachers, and other adults. I would be ridiculed for crying in school or expressing strong emotions.

I stopped bouncing and flapping my hands when I was happy. I stopped repeatedly asking questions when excited. I didn’t express what I wanted and learned to take whatever was given to me.

I think many adults that punished my emotions wanted me to “be prepared for the real world.” Instead, they left me vulnerable as an adult, struggling to hold boundaries, regulate emotions, and voice what I want.

Like a sculptor, I carefully carved away at my core, creating a socially acceptable version of myself. I chopped off my sensory needs in exchange for dissociation, pushed myself to interact despite my anxiety, forced myself to subdue emotions to meltdown later, and pretended like I had it all together instead of asking for accommodation.

The fear of being mistreated for expressing myself is ingrained so deep, it’s hard to distinguish myself from this mask.

What are the effects of masking?

Research has demonstrated that everyone, regardless of neurotype, engages in some form of masking, like changing your appearance, voice, and mannerisms to fit in. Something unique to autistic individuals though, is that they mask so significantly that it has a severe impact on their sense of self and is detrimental to autistic wellbeing. Masking for autistic people is directly related to suicidality, which is not the same for non-autistic individuals.

Not all autistic individuals mask, but it is often necessary in our present society to succeed. This is especially true for intersectional autistic people that may face discrimination, maltreatment, withheld support, and systemic abuse if they don’t mask. A black autistic person, when confronted by police, is literally faced with life or death depending on their ability to mask.

It’s easy to sit back and say, “well, then stop masking!” when considering the fix to preventing long-term health problems. To be able to unmask is an incredible privilege. On the other hand, the ability to mask can in itself be a privilege because it provides the safety that many autistic people aren’t afforded.

There is no correct answer for what to do about masking, but we know there are adverse long-term effects. Ideally, societal change would be so fundamental that no one would need to mask regardless of identity. But, that’s not currently realistic.

As a late-diagnosed, white, hyperlexic autistic person, I can only provide a privileged experience. For me, I am incredibly grateful I learned how to mask, but I also can unmask now that I’m in a safe place. That’s not going to be true for everyone. It would be inappropriate for me to give a blanket suggestion of what should be done about masking.

The one thing I do wish my parents had known though, is what masking was and passing that knowledge on to me. At the very least, knowing that this “mask” was a separate part of myself would have helped my feelings of inadequacy about my authentic self. It may have aided my ability to cope appropriately because I’d be able to recognize that I don’t have to mask when I’m alone.

Knowing what masking was would have likely helped me avoid mental health crisis because I’d have developed healthier coping mechanisms like I’m doing now as an adult.

And if my parents had known, maybe they’d have understood a little better why I’d lie about how I was feeling and smile when things were terrible. Perhaps they would have tried harder to encourage autistic expression.

I’m not lazy, I’m burned out

Masking is exhausting. If you wear a false version of yourself all of the time, you don’t have the energy to do necessary things. Different autistic people are hit with burnout at different times with different severities, but autistic burnout in children can look a lot like laziness to parents.

Why does my kid want to watch TV and do nothing else when they get home? Why aren’t they doing their homework? Why do they never take any initiative around the house?

The unseen portion of these types of questions are, what emotional and cognitive labor have they been doing all day that you can’t see?

Couple this with ADHD executive dysfunction, depression, or any other comorbidity, and you have a recipe for contention. Nothing is more overstimulating than having someone pester you to do something repeatedly when you’re tired from the day. It explains why meltdowns are so common after kids get home from school.

If I had a time machine, I would have wished my parents had known what masking was so they could have avoided some of the power struggles we had. I couldn’t explain to them that I didn’t have the cognitive/emotional resources to fulfill demands.

This is why environmental support is essential. Having environments to escape through the day can make a big difference for sensory overload. Not being pressured to “act allistic” is incredibly relieving. And being given a clear schedule that can be flexible to my needs can make the difference in whether I hit burnout.

Masking may be unavoidable and necessary for many people, but there are ways we can support autistic individuals in their lives to minimize the damage of long-term masking. Through education, support, and compassion, we can help prevent autistic burnout in ourselves and the people we care for.

For more information on specific sensory supports that can be used to prevent burnout check out Pt. 1.

The Great Big List of Sensory Coping – What I Wish My Parents Knew Pt. 1

This post contains affiliate marketing links.

Pt. 2

When I was 8, my parents took my family to Disneyland. I remember meeting Disney princesses in my Snow White princess dress, being invited on stage to fight Darth Vader, and swallowing about a gallon of seawater trying to learn how to boogie board. It truly was the trip of a lifetime.

My mom is a very go-go-go type of person, so she pushed us from activity to activity, wanting to experience Disneyland to the fullest. My dad was the type of person who liked to stage large family photos (his special interest at the time was photography). Family photos often included me holding a screaming child, standing in the same place for an hour, and squint-smiling as the sun shone directly in my eyes.

Together they were an unstoppable duo of go-wait-go-wait, trying to get the most out of the money they spent during the 2008 recession. It’s easy to feel pressured to have the maximum amount of fun when you’re trying desperately to create a memory-forming experience.

At one point, my mom dragged me into the bathroom, begging me to use the toilets, but I sat down on the floor and cried. “It’s not scary,” she reassured me, but the looming monster of automatic toilets begged to differ. I had a meltdown on the bathroom floor, my mom frantically trying to calm me down while equally stressed parents passing by watched the unfolding “tantrum” with a judgemental look.

To me, it felt like the world was ending. I was hungry, tired, needed to pee, and my mom was trying to get me to use automatic toilets (how dare she?!). I was terrified of the noise and the abruptness. It had been a long-waged war between us to get me to use automatic toilets in public.

She flipped open her guidebook and tried to find toilets at Disneyland that weren’t automatic. She found one bathroom in all of Disneyland that didn’t have automatic toilets installed.

Our family ran down Main Street, rushing to get to the bathroom. I went in and did my business, relieved.

For the rest of the trip, we walked over to that bathroom regardless of where we were.

It’s funny looking back now because I was so obviously autistic. But back then, as recent as it is, girls (read AFAB) weren’t diagnosed with autism. I was just “quirky.”

My parents handled some of my autistic behaviors well, and others… not so much. If I could go back and give them a guide on what to do differently, here’s what I wish they would have known.

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Sensory Coping

Learning sensory coping as an adult solved my “panic attacks” overnight.

What is sensory coping? Sensory coping is any sensory intervention that helps the person regulate sensory stimuli. This can be both the addition or removal of sensory experience.

One of the biggest “a-ha!” moments with sensory coping was realizing how vital oral stimulation is to help me regulate. It is one of the less acceptable ways of seeking sensation because of the association with childishness.

I sucked my thumb until I was 5. I would have done it longer, but my mom trained me out of it using aversives. “You’re too old to be sucking your thumb!”

When thinking about it critically though, what is the actual harm in children or adults using safe objects in their mouths to cope? Nothing really, it’s just not socially acceptable.

An autistic teenager I mentor chews on the rubber tires on his toys. His mom came to me in exasperation and said, “Why is he doing that?! How do I get him to stop?! He’s too old for that.”

I smiled and said, “If you want him to stop, give him something to chew on.” I helped her find a chew necklace on Amazon.

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When considering sensory coping, you need to understand the person’s unique triggers, sensations they enjoy, and the type of sensation they naturally seek. Never force a sensation someone is expressing discomfort towards.

Auditory Coping:

• Music. Everyone I’ve ever encountered has a type of music they like. Try cycling through different genres (even ones you don’t listen to)
• Ear plugs. Noise-cancelling headphones can be great during a meltdown or rising sensory-overstimulation. High fidelity ear plugs are great if you can’t stand bulky noise-cancelling headphones.
• ASMR can be enjoyable to some people
• White-noise or other non-content noise. One kid I knew liked standing next to the outdoor A/C units because he found the noise calming.
• Stop talking. Try communicating without speaking for a bit. I’ve heard this can be especially helpful for people who have selective mutism.

Oral Coping:

• SAFETY: Make sure to regularly sanitize chew toys/etc., especially during the pandemic. Keep them in a designated place when not in use and don’t let others touch them. Watch for items that can become choking hazards or that someone could injure themselves on if a part breaks off.
• Chewies – chew jewelry/chew toys. There are chew toys that exist that are meant to be subtle and ones that are different textures and materials. You can find them on Amazon or from autistic creators. One of my favorite autistic creators of subtle chew/fidget jewelry is The Divergent Minds Club.
• Safe objects – straws, pencils, clothing, toys, etc. I know it seems frustrating when you see your child chewing on objects, but it is serving a purpose. Give them designated items based on what they normally chew on if they don’t like chew toys. A friend of mine likes chewing on plastic straws because they’re a different texture than the silicone toys and keeps a few in their office.
• Ice – one warning is don’t chew ice (it’s bad for teeth) but sucking can provide a lot of sensory stimulation
• Baby Ice Teethers – if you like chewing ice, this is a great substitute
• Gum – have them choose the flavor. I really like the dessert flavors the Extra brand makes.
• Food that imitates inedible items – edible playdough, chocolate “dirt”, candy rocks

Visual Coping:

• Youtube videos – the videos marketed for “baby sensory”, “sand sensory”, “visually pleasing”, “surprisingly satisfying” can all be great places to look
• Hourglass, color, or “visual toys” – lava lamps, bubble hourglass, sand toys, kaleidoscopes, Jacob’s ladder, I Spy book, light toys, and color changing optic lights
• Projectors – there are fairly inexpensive light show projectors or you can easily make your own
• “Beer goggles” – the type of goggles used in high school classrooms to warn students against drinking and driving, or any glasses that distort the world
• Eye masks
• Simulating an odd perspective – fish eye lense, going somewhere high up, spinning, tutting
• Smart devices – you can get smart lights that are able to dim or change color and connect to smart home devices like Alexa

Tactile Coping:

• Water, sand, and sensory tables
• Dancing, exercise/movement, trampolines
• Fidgets – I’m a big fan of this fidget toy set online or you can make your own.
• Squeezing – autism “steam-rollers” (though these are pricey), full body hugs, hand or foot massages, head squeezes (can be good in place of headbanging), using objects around like pushing your body against a wall
• Things to throw your body against – mats, beds, wearing a helmet, wrestling, punching bags, foam pits, diving
• Sensory swings – in my living room this looks like a hammock chair and stand (no screwing into the wall needed)
• Body suits
• Bodies of water – swimming, bathtub, etc.
• Weird/Pleasant textures – soft rugs/blankets, lotion, walking through the fabric aisle at Walmart, items that vibrate, smooth/bumpy items, temperatures (hand warmers or ice packs)
• Activities that keep your hands busy – knitting, baking, puzzles, video games, drawing, rubix cube
• “Safe space” – a small area that there’s a lack of stimulation or only pleasant tactile stimulation available
• “Medicinal Herb” – if legal and of age

Olfactory (Smell) Coping:

• Candles, incense
• Scratch and sniff stickers/markers
• Nose plugs – ones that you can still breathe through are usually less irritating
• Perfumes/lotions of a preferred scent
• Cooking fragrant foods – cookies, spicy foods, anything with cinnamon
• Scented toys – stuffed animals, bubbles, play dough,
• Essential oils – these can be put on diffuser necklaces to be worn around
• Scent diffusers

Hopefully, you find some of these suggestions for sensory coping helpful. Consider putting these things in a “coping kit”.

If my parents had been equipped with how to help me sensory cope, I likely wouldn’t have developed as severe of anxiety pre-diagnosis. Sensory coping is an essential part of understanding autism and should be a staple for every autistic kid. These are all things you can try at home, but if you are looking for professional help, Occupational Therapy can be a great way of learning how to cope with sensory issues. Some areas offer OT services to children and adults, so check your local resources.

Let me know which ideas you found most helpful! For more information on why sensory coping is important check out pt. 2.

Can You Tell Who’s Faking Dissociative Identity Disorder (DID)?

When I discovered I was a system, it hit me like a truck. I was destabilized by several traumatic events, thrown into extreme states of dissociation interfering with daily functioning, having the overt experience of alters switching for the first time, blacking out, and losing necessary skills. My head was a cacophony of a bunch of people that suddenly wanted a say in my* life.

(*our primary experience of the world is through the host, so this is written from the host’s perspective)

Like autistic burnout, DID seems to be caught most often when the system is so destabilized that it suddenly becomes visible. The diagnostic criteria focus on what a system that’s destabilized looks like, similar to how a lot of late-diagnosed autistic folks say their autistic traits only became visible after they hit a certain level of stress.

Add to this the view of the media, where you have systems that are dangerous, overt, and extreme, like in the movie Split.

The public and clinical view of DID is a limited one. Systems are supposed to be simultaneously overt and unaware of their alters, rare and impossible to exist, prove they’re not faking and not share their diagnosis.

The expectations of systems are ridiculous and paradoxical. It leads to underdiagnosis, underrepresentation, and wild misinformation.

I don’t experience total blackouts anymore. I don’t lose time, and the only amnesic parts are retrograde (past memories). I still have alters, but we don’t present significantly differently or switch in at random, unpredictable times. This is how I’ve experienced DID for most of my life.

So, do I still have DID then? According to the DSM-5 criteria, yes.

A recent internet movement (fake-claiming) has been going after systems trying to “spot the fake system.” It’s a witch hunt that believes that if we can find just one fake system, it’s worth all the real systems that get accused.

A poll in one of my DID groups yielded interesting results. Of the 135 systems that participated, 58% had been fake-claimed and felt hurt/angry/ashamed/doubted themselves/or some combination.

Do you believe that all 78 systems that were fake-claimed were faking?

So, why do people fake-claim? There are a few justifications that are common.

1. There’s all of these teens on Tik Tok sensationalizing DID

Tik Tok is villainized by the broader internet world and disregarded as a platform for silly teens to do their silly dances. This villainization has taken on a much more sinister form regarding all mental health Tik Tokers, especially for rare disorders.

The world loves a good “switching caught on camera” video. It’s seen as a novelty, similar to a circus act, amazed that someone is suddenly a different person. Making content that appeals to a broader audience requires that you sell yourself as a novelty.

I want to emphasize that I have a covert form of DID, and presenting overtly in itself isn’t necessarily sensationalized. Many creators are forced to show the parts people want to see, which tends to be overt characteristics.

This incentivizes the sensationalization of DID. People don’t want to hear what it’s like to be dissociated, how deeply trauma affects daily functioning or the severe co-occurring symptoms like psychosis and catatonia. Most of the content I made on Tik Tok about my DID was about the less savory parts of my disorder. I only received attention from other systems, not from the general population. My videos on DID didn’t go viral because they didn’t appeal to sensational DID.

Add to that the self-curated feed. You can easily see how someone who interacts with sensational content is likely to see primarily teenagers (Tik Tok’s largest audience is 10-19, followed by 20-29) showing performative parts of their disorder to get recognized by a broader audience.

The issue is not faking DID but sensationalization. It’s further incentivized by fake-claimers interacting with this content.

I believe every system has a right to present how they want on social media. As long as misinformation isn’t being spread, it’s not hurting anyone. It’s interesting that sensationalized DID has received so much negative attention, considering that it’s just following what people on Tik Tok want to see. It’s catering to your audience, similar to how lifestyle vloggers post the happy parts of their families, exercise routines, parties, and lives. I’ve never seen anyone fake-claim a family vlogger saying, “that’s not even your family!”

Sensationalization ≠ faking. If you don’t like it, don’t interact with sensationalized content.

2. Fake systems hurt the community and need to be de-platformed

In my opinion, this is one of the most valid reasons why people fake-claim, and the one I’ve seen most often used by systems that fake-claim other systems. There’s a rational fear that sensational influencers that might be faking the disorder are harming the community image and therefore harming systems as a whole.

I always compare this to my experience in the trans community. People like Caitlyn Jenner sensationalize being trans, spread misinformation, and contribute to a negative stereotype of trans people. It’s easy to see this harms the community. But I wouldn’t say Caitlyn Jenner is faking being trans. I fully believe she is trans, despite her harmful actions. The trans community has a similar tendency to be hypervigilant against potentially “fake trans people” due to the mistreatment from the broader population. The thing is, the number of people who are in a fragile state of questioning their gender are the ones that get hurt when the community seeks out “the fakers.” It villainizes specific presentations and is usually targeted at people that are trans but present in unconventional ways.

We need to re-frame this argument. The main issue is not people faking DID, though it’s easy to feel that way when public systems spread harmful misinformation. But by pointing fingers ourselves, we are inviting non-systems to do the same to us.

The problem is misinformation, not being honest about the difficult parts of the disorder, the lack of support available for systems, and the lack of good public/medical representation.

We can call out misinformation, educate others, and advocate for support/representation without fake-claiming.

3. Look at how obvious they’re faking! They have alters from anime and talk like a baby

Cringe. It’s the fuel of internet hatred and a re-packaged form of hate for mentally ill behaviors.

Someone being cringey does not indicate they’re faking.

An unusual alter presentation doesn’t exclude someone from having DID. In the DSM-V, there are no specifications on what an alter can be other than “discontinuities of experience that can affect any aspect of an individual’s functioning.” It at no point specifies if they have to be real people (even including “ghost” as a potential personality), the demographics of the alter, or the number of alters required to be a system (beyond two).

Age regression (the experience of taking on a mental/emotional state of someone younger) is common in childhood trauma disorders. And child alters are very common.

Going back to a previous comparison, Caitlyn Jenner is cringey. That doesn’t make her not trans.

DID has a broad presentation of what it can look like. Policing cringey behavior hurts all systems, as it discourages natural expression. And there’s no evidence that someone is faking just because you don’t like how their system presents.

4. DID is rare, there’s got to be people out there faking

This one is easily disproven with a bit of math. There is controversy about the prevalence of DID due to underdiagnosis and myths. There’s also OSDD which can have alters without amnesia, making the prevalence of systems higher than estimates for DID.

But, if we’re going off what’s stated in the DSM-V (based on this study) , the prevalence is placed at 1.5%.

1.5% of the U.S. population is approx. 5 Million people. Tik Tok has roughly a billion people on the platform. Assuming Tik Tok is representative of the general population, that means approx. 15 million people on the platform have DID. Again, this doesn’t include other systems that have OSDD or are unrecognized by the medical community (due to accessibility).

That’s the number of people in Costa Rica, Ireland, and New Zealand combined.

It’s rare, but it’s not as rare as people think when talking about statistical prevalence.

Consequences of Fake Claiming

Content Warning: This section mentions suicidality and self-injury. Reader discretion is advised.

Why does stopping fake-claiming even matter?

Systems are an incredibly vulnerable part of the population that has been through severe/repeated forms of trauma. This makes fake-claiming not only problematic but dangerous.

Studies have found the prevalence of self-mutilation in diagnosed DID between 34-48%. Rates of attempted suicide are 61-72%, with a 1-2.1% completion rate. This is likely underestimating the actual completion rate due to the number of undiagnosed DID systems.

People with DID are finally starting to have a public image that doesn’t center around being homicidal monsters or only presenting in one overt way. And the backlash is astronomical. People create forums to laugh and point at DID symptoms under the guise that the person is “faking.” They’ve swarmed social media channels with hundreds to thousands of comments arguing that creators are faking, and they’ve doxxed and harassed systems with large followings.

They don’t hate fakers; they really hate people with DID. It’s bullying. An internet mob quickly becomes an abuser, and in this case, it’s abusing a population that already has significant trauma.

Fake-claiming may increase the likelihood of self-injury or suicidality, but it also instills a sense of self-doubt.

Especially for newly recognized systems, this can be a devastating blow, leading to many self-destructive behaviors in an attempt to “prove” you’re not a system. Newly recognized systems or people questioning if they have the disorder may try to ignore signs of breakdown because they believe it’s all in their head. The negative self-stigma seems incredibly prevalent in the DID community and is made worse by the recent fake-claiming trend.

You may think you’re not hurting anyone when you “expose” someone that is “obviously faking,” but you’re hurting DID systems as a whole. You’re contributing to an internet mob deadset on proving every DID system is faking. And you may be contributing to self-doubt and self-injurious actions in response to bullying.

No, you can’t tell if someone’s faking DID unless they come out and say they’re faking. And the minuscule number of malingering systems are not worth the damage caused to the millions of real systems by fake-claiming.

Let’s call out harmful community behavior without bullying someone for their existence.

I Was Part of the “Good ABA”

I became an RBT because I saw a real opportunity to help people.

A coworker mentioned that she had been looking into the voices of the autistic community. She said that there was a big push away from ABA. In training, they presented all the research that supports how much better autistic lives are because of ABA; reduced self-harm, aggression, greater adaptive functioning, and less family stress. With that kind of evidence, who could possibly be against ABA?

Our clinic was a part of the new “good ABA.” It checked off all the boxes of what to look for in ABA clinics; “child-led,” “natural environment teaching,” “reinforcement, not punishment focused,” “communication driven,” and “not discrete trial training (DTT).” I was part of a force for good, part of the cutting edge of the field where ABA was seeing true reform.

Content Warning: this article contains descriptions of abusive therapy. Reader discretion advised.

It still haunts me hearing that electronic voice say “granola bar.”

The longer I worked there, the more I started seeing the red flags that weren’t visible when I initially wore those rose-colored glasses. It started with one of my favorite students, a nonspeaking child who was incredibly intelligent and very funny.

I could tell that he was bored with his programming. 90% of it was maintenance. He already knew how to perform the desired behaviors. They were still there because the BCBA and others couldn’t reliably get him to produce the behaviors.

We were encouraged to run DTT-style trials with him, where he would get frustrated easily to the point of self-harming. He was doing this with every tech three times a day, 40 hrs a week.

I started seeing other coworkers gossip about him, discussing how he was “manipulative” because he would seek reinforcement without performing “desired behaviors he knew how to do.” I couldn’t help but laugh at the idea of a 7-yr-old being “manipulative” of adults around them.

That kind of thinking was what led to my first instance of seeing something so morally abhorrent that it was impossible not to speak up. I shadowed another RBT and watched the student request food on his AAC device. Previously, the supervisor had set up an eating schedule for the kids to eat their lunches during the school day, and he was out because of training.

The RBT gently told him no, that he would have to wait for lunch, and he went and played. He continued returning to his AAC, asking for food, and the RBT continued to deny him. I watched this slowly escalate over 30 minutes until I saw the student start breaking down crying. He brought her to his snacks and pointed at them, and the RBT continued to say no.

I urged her to let him, but she brushed me off, saying that it would be “reinforcing maladaptive behaviors.” He went to other staff and brought them to his snacks, and everyone ignored him because he was exhibiting “attention-seeking” behavior. He manded over and over again, and it still haunts me hearing that electronic voice from his AAC device say “granola bar.”

I had enough and sat him at the table and gave him food. He continued to cry softly as he ate his snacks, so emotionally overwhelmed he couldn’t stop. I told my supervisor about the incident, and she wrote up a “training protocol” that was posted on the door of how lunchtimes were flexible.

I asked if she was planning on telling his parents, and she said, “What is there to tell? A kid having a problem behavior for food? That’s nothing new. We don’t report that kind of thing in our clinic, and if we did, there’d be way too many things to write reports on!”

 “It’s like he had PTSD or something!”

That’s not where it stopped. Shortly after, another supervisor bragged in a staff meeting about their research on the IISCA and a functional analysis they ran on a nonspeaking child.

The child had a history of self-harm and aggression, so they were trying to target the behavior so they could “turn it on and off at will.” They first gave the child homework and a bunch of puzzles all mixed together, so there was no solution.

In response, he didn’t have a “maladaptive behavior,” so they were forced to escalate. They started yelling at each other from across the room (knowing this kid had extreme hypersensitivity to noise) and banging items around the room. They brought in a speaker to blast music that the kid hated. The music was so loud it could be heard in other rooms.

He continued to self-regulate and didn’t have a maladaptive behavior. They started forcing him to watch clips of TV shows he hated and did all of these aversives combined, trying desperately to produce a behavior.

Finally, what broke him after 20 mins of what I can only describe as torture, they let him get up as if to let him leave and then forced him to sit down when he had reached the door. The kid started crying, and they considered the functional analysis a success.

I was horrified as my supervisor enthusiastically told me how much better he was making this child’s life. All I could feel was the deepest pit in my stomach, knowing how horrible my own sensory problems were and imagining that on a child who could not stop it.

In a staff meeting, the BCBA joked that “it’s like he has PTSD or something” when discussing him avoiding the room they were in, both supervisors and the RBT who were present at the time. She discussed how frantically he would act when she would even start to blast music to “turn on the behavior” and how quickly he would scream “my way, my way, my way!”

She said all of this laughing and boasting about it, and I looked around and saw my coworkers laughing with her. They didn’t understand how cruel it was. They had no training on dealing with sensory regulation in autistic children.

Every clinic considers itself to be the “good ABA.”

This clinic considered itself part of the “good ABA” and still does. I had no idea how to report it and was traumatized by my experience. I had heard about how stringent the BACB was with documenting events to take a case seriously.

At the end of this, I didn’t have enough documentation to feel like they would genuinely do much, especially hearing their inaction at even more significant ethical violations like JRC’s use of GED shock devices. I could already envision the slap on the wrist or, worse, complete dismissal “proving” my supervisor in the right.

I went public with the information, knowing I would be terminated.

Statistically and anecdotally, not every clinic can be the “good ABA.” It’s so easy to lose sight of what’s happening when you’re hearing things described in more appealing language. When valid criticisms are raised, ABA therapy has historically been morally disengaged.

I urge practitioners to watch the reaction of refusing to acknowledge harm when presented by autistic people, by coworkers, by supervisees, and by that feeling in the gut that something isn’t quite right.

It’s time the field listened to autistic people, especially when it’s difficult.

Why I’m Moving Platforms – A Confession of A Burned Out Advocate

I never intended my Tik Tok to be a route for advocacy. It was a place where people related to my darkest parts for the first time. A place to share trauma that most people don’t want to hear.

I don’t regret that it launched my advocacy platform. I couldn’t have predicted a job I had taken to help other people, autistic children, would turn into such a traumatic and life-changing experience. My job as an ABA therapist was a relatively short blip in my life, and yet it made such a significant impact on who I discovered myself to be.

I suppose finding out you’re autistic from ABA, an industry that views your existence as inherently wrong is just about the worst way you can find out. The guilt I felt at leaving helpless children at the hands of people who saw them as manipulative, dysfunctional, and in need of saving was nearly unbearable. I started posting on Tik Tok about it as a means of gaining sanity. A touch of reality when I was being gaslit by my coworkers and boss. Being fired was just about the best thing the clinic could have done for me.

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Motivated By Spite

My goal was to reach 10K. That was the number my father had at the height of his relative “fame,” which he weaponized against me growing up. It was a spite-motivated goal and one I craved desperately to reach. But when I achieved it with a controversial video, I was wracked with anxiety I hadn’t felt since starting the account.

I had thousands of people telling me I was wrong, spewing the worst kind of hate towards me, and arguing with each other. I became obsessed with managing the comment section, refreshing the page repeatedly to see dozens of comments pouring in.

My victory was hollow. I had reached my goal, but what was the point? It marked a year-long project that devolved the second half a million people saw my video. I started noticing other activists’ efforts, posts of friends and mutuals that went viral. The comments were filled with all sorts of projections, removing nuance and accusing creators despite their content being less than a minute long.

While it isn’t just Tik Tok, it seems especially bad because of the level of audience that you can reach and the length of videos. Being seen by more people isn’t necessarily a good thing. I grew bitter as I got comments on my videos critiquing minutiae, putting words in my mouth, and insulting me. It made me realize my efforts required a much more nuanced approach than Tik Tok.

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Welcome to Life of Lieu

Advocacy is exhausting, even if it’s behind a keyboard. It’s a ton of emotional labor to explain the same things over and over to the same questions/arguments. I don’t pretend to have it harder than most activists. I haven’t reached a platform where I’ve experienced a fraction of some of the abuse I’ve seen. I am also not out in the field advocating in harsh conditions against cruel people. But, I’m still tired.

I created this blog because I need a place to flesh out my ideas. I can’t articulate what I need in only 150 characters. I hate talking on video. And writing has always been the way I communicate best.

This blog will be a mix of my thoughts/feelings/experiences on mental health topics I feel are essential to address. Like Tik Tok, I imagine it will take on a life of its own. Welcome to Life of Lieu.