Awareness

My Sermon: Treatment of Disabled People vs. The First Two UU Principles

Hello everyone. I did a lay-led sermon at my Unitarian Universalist fellowship on July 17th, 2022. This was edited to remove the names of people from my congregation and I also went off-script a few times. Before I share my sermon, I have two things I need to share first:

  1. Unitarian Universalism has Seven Principles in which guide our morals. The link from the governing body shares the seven principles. The first two principles are:
    1. We affirm and promote the inherent worth and dignity of everyone.
    2. We affirm and promote justice, equity, and compassion in human relations.
  2. Trigger Warning! This post will talk about ableism and will mention the ableist r-slur twice (in the context that I tell people to stop saying it). If these are triggering for you, please stop reading this blog post. Thank you.

Earlier this year after the Disability Day of Mourning vigil, my minister said that disability issues should continue to be talked about, so I’m doing that now.

Many people don’t know this, but every March, the disabled community remembers those who were victims of the mindset “It’s better to be dead than disabled.” These are the people whose inherent worth and dignity were not affirmed. People who are not respected or shown compassion. People who are included in the list of people who receive no justice when something bad happens to them.

If you’re someone who believes in God, especially a God who doesn’t make mistakes, then why would you try to fix the mistake we call disabled people? Why do we not accept them for who they are and meet their needs? Why do we wish for or even try to make the mistake go away?

When I was a kid, being around disabled people, or other people who didn’t meet society’s definition of normal, was my normal. I grew up around an uncle who had autism during a time when autism wasn’t a spectrum and only people of below average intelligence could be considered autistic. He received a diagnosis during a time when it was thought best to institutionalize disabled people as they were considered a family and societal shame. It was considered okay to warehouse people like him. I didn’t know about the institutionalization of disabled people until 2010 when my cell biology professor told us about it when there were talks of my alma mater buying the property that previously held an institution for disabled people.

Many years later as an adult, I was back in the world of disabled people, but with me this time. Last year, I found out that my anxieties and social troubles are due to being autistic.

Okay, I know some of you are thinking that I don’t seem autistic. Many of those on the autism spectrum, which now includes Asperger Syndrome and Pervasive Developmental Disorder, worry about being told that they don’t seem autistic whenever they disclose. We only disclose to people we think we trust because of it, and many on the autism spectrum may have lost friends or family members due to the diagnosis.

Not being believed is not unique to those on the autism spectrum; this is experienced by many people with invisible disabilities. It’s bad enough that doctors don’t believe their patients or take health issues seriously enough to investigate chronic illnesses more quickly. They’re told that they don’t look sick. In the words of the Devo song “Peek A Boo”, “If you cannot see it, you think it’s not there. It doesn’t work that way.” If they’re having a good day one day but aren’t feeling well the next day, people say “You were fine yesterday. What’s wrong with you?” They are often not invited to events because they may have had to cancel one too many times due to health issues. Some people may want to make their invisible disabilities more visible, but that is a risk not everyone is willing or able to take. As mentioned earlier, a person could lose friends for being disabled. They may be treated with pity, which gets annoying after awhile, especially since people don’t want to be pitied. Others will automatically assume the things you can’t do instead of figuring out what you can do, like what happened in an episode of Degrassi High.

In a season one episode from the late 80s, there is a character named Maya who is in a wheelchair. A group of friends wanted to go to a movie, but the closest movie theater was not wheelchair accessible and neither were the buses, so they didn’t invite Maya. At the end of the episode, Maya called them out on their ableism because the friends didn’t think of alternative and accessible options for her to be included. There was another movie theater in town that was wheelchair accessible and Maya’s mom could have driven her to that theater. They made a decision without her input and robbed her of her agency. It was also hinted that the friends intentionally went to an inaccessible movie and took inaccessible transportation due to being embarrassed of been seen in public with a disabled person.

As mentioned by Kim Nielsen, disability has been, and still is, used as a weapon. There are times when people use words as a way to demean people and their differences have been weaponized. Sticks and stones may break my bones, but words will never hurt me? News flash! Words hurt and since people know the power of words, people use words as weapons against people who are different. We have used outdated names for medical conditions as slurs, for example. In high school, the autism program director did a campaign called “Spread the Word to End the Word” with the goal of people ending the use of the word “retarded”. I saw this campaign happen once when I was in college and for years, I stopped hearing that word. However, when I worked at an old job, I started hearing that word again. Calling someone out on using that slur carries a big risk of being called a “social justice warrior,” which is a term I hate so much because it is used to silence people who speak about social justice issues.

Some of you know about hostile architecture. For those who don’t know, hostile architecture is a method used to restrict behaviors using the building environment around people. This can be as obvious as spikes built on top of ledges, but can be as subtle as removing benches so people can no longer sit in certain areas that were once accessible. The original intent of hostile architecture was to keep homeless people away from urban areas so as to not make the city unattractive to tourists. However, this type of urban planning also affects other people: the elderly, pregnant people, and disabled people. Disney World removed benches years ago so people don’t sit around often. You can’t ride rides or spend money at Disney if you’re sitting on a bench! You know what Disney’s answer is for people with stamina issues when they want accommodations? Rent a wheelchair or a mobility scooter. Most of the lines in Disney World and Disneyland are either wheelchair accessible or there is a separate entrance for people in wheelchairs. Hey Disney, maybe people don’t want to spend more cash than they have to and want free seating.

There’s also the issue of being invisible when you are using mobility devices such as a wheelchair or a mobility scooter. For some reason, people don’t see you or get in your way. I feel like this was originally done as a way for people to not stare at someone with a physical disability. We’re taught at a young age not to stare. If you are able to, you need to see where you’re going so you’re going to glance. Just don’t look at them for a long time. Also, if you see someone using a cane for mobility purposes or as a way to navigate the world when someone has low vision, for the love of whatever you believe in, don’t tamper with it when it’s in use! My boss’ wife uses a white cane due to sudden low sight issues. My boss and his family went to Universal Studios parks in Florida earlier this year when someone walked up to his wife, looked at the cane, and kicked it out of the way. You can’t make these stories of ableism up, people.

Our society is a deficiency-focused and fix-it culture. We focus way too much on what people can’t do and focus way too much on fixing people. A prime example of the fix-the-deficiency culture is Applied Behavioral Analysis therapy. This therapy is often used as an early intervention for autistic children to stop their negative autistic-based behaviors in order to pass as normal to society. The autism community is against ABA therapy due to how many therapists use aversions to stop negative behaviors. People see the therapy and make one comment: I wouldn’t even do this to my dog. The fact that animal lives are seen to matter more than marginalized people’s lives in America is very disturbing.

Disabled people have various strengths just like able-bodied or neurotypical people. When picking out the music videos for today’s service, I intentionally picked songs by disabled artists. These artists show that with the proper supports and the right people believing in them, they can achieve whatever they want that is within their interests and capabilities. However, we need to be mindful that just because a person with a specific disability can do certain things doesn’t mean that every person with that disability can do the same thing.

So how can you help with disability justice, accessibility efforts, and the fight against ableism? Honestly, the first thing you should do is to listen to the stories and voices of disabled people. They know what it’s like to live with a disability and they know what helps them live in an able-bodied and neurotypical world. Non-disabled people have tried, yet many times failed, at creating spaces and tools to help. Once you find out what works best for disabled people, you can start using your accomplice powers to work alongside disabled people to help improve accessibility.

Examine the language you use every day and think about any terms you use that are considered ableist. Yesterday was the last day any of you can use the term “retarded”. Also think about your thoughts. Do you have negative biases regarding disability? Do you focus too much on what a disabled person can’t do? While you need to be realistic about the challenges disabled people face, think about their strengths too! A nonverbal person can still communicate by writing or using AACs, Augmentative or Alternative Communication systems.

It is also wise to believe those with the lived experience of invisible disabilities. If you don’t live it, you don’t fully know it. Otherwise, you are invalidating their experience and are making it seem like you know more about their medical condition than they do.

UUFHC has made efforts to raise awareness and accommodate others. In March, my minister and I hosted the first Disability Day of Mourning vigil. While attendance was very low, people became aware of disability justice, which is a social justice issue that is not talked about much in our congregation or in Unitarian Universalism as a whole. Our Director of Faith Formation has made efforts to accommodate people who need to fidget and struggle with sitting still in a chair by providing sensory toys and a pad for kids to sit on the floor during worship. As many neurodivergent people have experienced, society forcing us to be normal like everyone else contributes to comorbid mental health issues.

Parents and guardians, let your kids use fidgets and other sensory toys. They serve a purpose of helping people focus and are effective tools for self-soothing. If you think your child is too old to have sensory toys, I’ll be 30 later this year and I have some self-soothing toys to use. The fidget toy I use the most is the infinity cube. Doctor’s appointments and dentist appointments cause me a lot of anxiety due to the unexpected nature of the appointments, so I play with the infinity cube to help calm me in the waiting rooms. People of all ages can benefit from these self-soothing tools, but many fidgets are marketed towards children so many adults don’t feel comfortable using something that is called a “toy”.

EqUUal Access, a UU organization made up of congregants with disabilities, their families, and allies, created a certification called Accessibility and Inclusion Ministry (AIM). The goal of the AIM certification was to recognize UU congregations who worked on accessible and inclusive ministries as well as dismantling ableism. Getting this certification was a goal my minister and I wanted to work on. However, due to a lack of participation, disabled Unitarian Universalists were not getting much benefit from the program and EqUUal Access decided to end the program on June 30th. However, anti-ableism efforts will not stop.

I know there are children and youth sitting in during this service and I have something for you all to think about too. I want you to think about whether there is a classmate or other student in your school with a disability. How do your classmates treat them? How do the teachers treat them? How do you treat them? Are you kind to them or do you stay away from them for being different from your classmates? I want you and your families to have a conversation about how people treat disabled people.

As Unitarian Universalists, we must include disability justice and anti-ableism efforts in our anti-oppression efforts. We cannot have one or two social justice issues dominate Unitarian Universalism, and I do not want us failing a group of UUs who may have had their issues ignored in the past. I encourage you all to be accomplices in the fight against ableism, but please be mindful to not speak on behalf of those with disabilities who are present. Ashe, blessed be, and in the words of Captain Planet, “The power is yours.”

Mental Health

The Helpfulness of Neurodivergent Therapists for Neurodivergent People

While it helps to have a therapist who understands neurodivergence, there’s a special feeling in having a therapist who happens to also be neurodivergent.

This post is inspired by my therapist. On January 31st of this year, my therapist disclosed that she’s neurodivergent (specifically ADHD). I suspected her to be neurodivergent, but only because I felt like she knew WAY too much about neurodivergence to be neurotypical. She was able to notice during our first appointment that I’m neurodivergent.

To me, it is VERY important to have a therapist who has a proper understanding of neurodivergence and does not try to change the client to act normal. Therapy also never worked for me because I did not receive an autism diagnosis until almost a year ago. A lack of a proper diagnosis has done more harm to me and others than good when it comes to therapy treatments. I talk more about how therapists have contributed to issues with people who have autistic traits here. Yes, you can go on Psychology Today’s find a therapist site and find a therapist who works with autistic clients, clients with an intellectual disability, clients with ADHD, or clients with learning disabilities, but how many of those therapists have a proper understanding and aren’t simply trying to fix the client to make them normal? How many of those therapists can help a neurodivergent person navigate the world when their normal is different from society’s normal?

The advantages of having a therapist who is neurodivergent are that they have the lived experience of being neurodivergent and they can more easily detect clients who are neurodivergent whether they have a diagnosis or not. However, there is no database I’m aware of that will help you find therapists who are neurodivergent themselves. Then again, that’s not surprising when people are told not to disclose their neurodivergence in the workplace.

Therapists, how can you help stop the shame and internalized ableism in your clients?

Awareness · School · Workplace

Should You Disclose Your Neurodivergence?

So I usually don’t write neurodivergence-related blog posts that are commonly written, but I have only seen this commonly discussed in online support groups and not WordPress blogs, so you get this little treat from me. I usually hear this question in autistic spaces, but this may be something discussed in ADHD groups or learning disability support groups as well.

Typically, people say the answer is no. There you go. End blog! Wait, come back! I’m kidding! We discuss things here.

Oh thank goodness you’re back! Let’s first talk about why it is suggested not to disclose your neurodivergence.

  • Negative biases. This one is a major one that encompasses many other downsides to disclosing you’re neurodivergent. When it comes to neurodivergence, people only see the struggles. If you check off autism when you are asked in job applications about disabilities, you might not get an interview despite you being under a protected category. Note: I have not seen ADHD as a disability listed under job applications. Your abilities may come into question before you are given a chance. I’m a lead of a small team at work and I worry that disclosing my autism would cause my leadership abilities to come into question when I already don’t have leadership experience.
  • People won’t think you’re actually neurodivergent. People have pre-conceived notions on what someone who’s autistic looks like or how someone with ADHD acts like. However, what if you don’t “seem” neurodivergent because you present differently than what people thought years ago? Studies about neurodivergence focused on boys, so it wasn’t expected for girls to be neurodivergent either, and no one learned about non-binary genders until about 10 years ago. Maybe you did better in school than the stereotypical neurodivergent person. Or maybe you’re intellectually gifted as well (discussion about gifted and neurodivergent people can be found in this post).

Is there an advantage to disclosing you’re neurodivergent? Yes! Here are some advantages.

  • Challenging stereotypes. I’m going to use autism as an example as I am autistic. People who think of autism think of autism before it was considered a spectrum. They think of people who rely on 24/7 care from their parents or siblings. They don’t think of people like actor Dan Aykroyd or university professor Dr. Temple Grandin. If I disclose my autism, it will help people redefine what it means to “look autistic”. I can help show people that it’s possible to get a degree or to work a full-time job, though as I talk about in this post, I don’t want parents to set unrealistic expectations for neurodivergent children.
  • Getting the help you need to be successful. At some point in our lives, everyone regardless of whether they are neurodivergent or neurotypical need help to get something finished. However, neurodivergent people may need extra help. Before you can ask for any accommodations, you need to understand your strengths and challenges. This is because each neurodivergent person is different and not everyone needs the same accommodations. Look at accommodations that will help with your challenges and see if they would be considered reasonable accommodations in school or work. AANE posted an article last month that can help supervisors become more inclusive of neurodivergent people (Note: AANE is an autism support organization, so while this article has suggestions that can cover ADHD as well, there is a bit more focus on autism). Anyone who is a supervisor should read this to jump start their learning and support efforts.
  • You might be the source of support for other neurodivergent people. A note of caution: If you want to be a source of support for other neurodivergent people (or do any form of neurodivergent advocacy), figure out your social, emotional, mental, and physical limits first. Neurodivergent people are the best sources of support for other neurodivergent people because neurotypical people often get things wrong. Thus, some neurodivergent people have blogs, YouTube channels, and TikToks dedicated to educating about neurodivergence. Neurodivergent people might also seek advice from you. However, make it clear to everyone that they should look up sources for themselves, too. This is especially evident when people of privilege ask marginalized groups for resources instead of taking the time to do the research themselves. Yes, it’s good that they’re looking for sources created by marginalized people. No, it is not our sole responsibility in life to provide sources to people.

Do I disclose my autism? Sometimes yes, and sometimes no. I only disclose my autism when the need occurs. For example, I disclosed my autism when I hosted the first Disability Day of Mourning vigil at my church back in March 2022. I disclose my autism when there are discussions about autism. Very few people at my job know that I’m neurodivergent (I didn’t use the autism label), but I am considering disclosing my autism to my boss soon.

Awareness

What to Do If Someone Says “Asperger’s”

Warning: As you can see in the title, I will be using the term “Asperger’s” in this post. I will also mention autism elitism, Naziism, and murder. Please stop reading if these are triggers for you. Thank you.

In 2013, the DSM V came out and removed the diagnosis of Asperger Syndrome and brought Autistic Disorder, Asperger Syndrome, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) into the category of Autism Spectrum Disorder. However, people still use the term “Asperger’s” when they talk about themselves. First, let’s take a look at reasons why someone may say they have “Asperger’s” instead of autism.

  1. The person was diagnosed with Asperger Syndrome back when it was a separate diagnosis.
  2. The person lives in a country that still has Asperger Syndrome as a separate diagnosis.

The only difference between Asperger Syndrome and Autistic Disorder is that people with an Asperger’s diagnosis did not have significant speech delay. Thus, if I had been diagnosed sooner, my official diagnosis would have been Asperger Syndrome.

So besides the fact that there is only one major difference between Asperger Syndrome and Autistic Disorder, what is the harm in saying “Asperger’s”?

Asperger Syndrome was named after Hans Asperger, born as Johann Friedrich Karl Asperger. While he wasn’t a Nazi himself, he was aided and supported by Nazis for studies about autistic children. The children in his study were often sterilized and/or sent away to be euthanized.

There are also concerns about elitism in autistic communities. Asperger’s may be seen as the “better” autism. The “smarter” autism. They are called “high-functioning” autistic people, with that label ignoring their challenges.

Okay, now that I gave brief reasons why the term “Asperger’s” is considered a harmful term, what should you do if someone says “Asperger’s”? Well, that depends on your comfort level. Some people don’t like confrontation, so those people might not do anything. However, if you want to say something, follow these tips:

  • Calmly explain why the term “Asperger’s” should not be used. Key word: calmly.
  • This applies moreso to making this comment online, but might work if you hear someone say the term: If someone already told someone to not say “Asperger’s”, don’t say it too. People already don’t like being corrected, but the person may feel attacked if multiple people tell them the same thing about being wrong.
  • If you get pushback, tell people that autistic people know themselves best and how non-autistic people don’t always have our best interests in mind. Just like the first tip, mention this calmly.

Sorry for the long wait between blog posts, but I hosted my church’s first ever Disability Day of Mourning vigil and I needed to plan and prepare. I can’t promise to post more often as work has gotten busier.

Uncategorized

Where are the Black Autistics?

This post is inspired by two things: 1. I’m usually the only black person (or only minority in some cases) in autism groups. 2. Mom was the only black person in the parent group. This blog post will mainly focus on black autistic people because I’m a black autistic person, but there may be some similar experiences between all autistic people of color. Please note that all discussions about a lack of a diagnosis will not include a lack of awareness from doctors as this is a problem regardless of race. This post is about barriers to black people getting a diagnosis.

To me, the biggest factor in why black people don’t get diagnosed is because of stigma within black communities. Yes, there is a stigma about autism in all races, but it’s worse in people of color due to not wanting to be seen as even more imperfect in a white-favored world. There’s also the religious belief of “claiming something” means it’s true. If someone says your child is autistic, then they are “doomed” to struggle or other religious brainwashing. It doesn’t help that many autism resources (including blogs on WordPress) only focus on the challenges of autism without discussing the strengths. A friend from college experienced OCD traits and when she told her mom about them, her mom said “Don’t say that. There’s nothing wrong with you.” She comes from a very religious family. If the child gets diagnosed with autism, how would family and other people react? Family is VERY important in black culture and there are fears that having an autistic child will make family members push away and thus make families of autistic people feel even more isolated.

Let’s say the stigma of having a disabled child didn’t exist. What other barriers exist?

Cost. It is a privilege to be able to afford an autism evaluation, and people in lower income communities do not have that privilege. It cost me about $2500 to receive my autism evaluation, but the cost may vary depending on the evaluation center. Not every evaluation center will accept insurance and those that accept insurance may make you pay for the evaluation before a superbill can be submitted for reimbursement (my evaluation center did a superbill). Looking back, my autistic traits started becoming obvious in tenth grade and neither of my parents were working at the time. Dad retired after nearly 30 years of being a first responder and mom had been medically retired for years at that point. With only a pension as payment for each of them, could they have even gotten me evaluated? While some people may be self-diagnosed as autistic, you need to have a diagnosis in order to get necessary services.

Access to Resources. This is a combination of living in an area that lacks resources or the lack of knowledge of resources. At risk of sounding like a social justice warrior (hate that term), it feels like knowledge of resources especially decades ago is a form of white privilege. Why do I think that? Let’s compare three autistic people: my uncle, Dr. Temple Grandin, and Joey from It’s Joey’s World.

Dr. Temple Grandin. White. Her mom had gotten books to create therapies for Temple when she recognized autistic traits in her.

Joey. White. His mom also found books to create therapies when he was diagnosed.

My uncle. Black. Nothing.

If there are resources for autistic people that aren’t online, you have to know where to look. Autism centers or other centers focused on neurodivergent people (mainly children) may only be in big cities by hospitals or any place that is not a majority-black location. There may not be many therapists to help with coping with anxiety (many autistic people have anxiety issues, but it for some reason isn’t a part of the autism diagnostic criteria) in “inner city areas”. We could go back to the cost of therapy and say that resources may not be affordable. You then have to ask if these resources are even good resources. In my state, one major resource in the big city is affiliated with Autism Society and another is the Center for Autism and Related Disorders. Both organizations promote ABA Therapy, which is a “therapy” that is hated by autistic people because it forces autistic children to fit society’s definition of normal.

Oh, you want resources for autistic adults? Well good freaking luck to you!

Going very slightly off-topic, I’m going to mention why I feel like I don’t see black autistic people in autistic spaces: Autistic spaces are mostly white spaces. I have heard stories on a Discord server I participate in where black autistic people go to an autistic space, don’t see any people of color, and feel too uncomfortable to stay. Yes, it seems like younger (as in Gen Z) black people hate white people now, but that’s beside the point. I’m used to being the only (or one of the few) non-white people in a room. Heck, my church is mostly white or white-passing which I wasn’t expecting. However, some people want to be in comfortable spaces to talk about intersectionality. The server owner of the aforementioned Discord server created the server to have a space FOR neurodivergent people of color. While white people are allowed in the server (you must be a person of color, LGBTQ, or neurodivergent to join), the server is majority POC with most of the POC being black.

I might do another post about how I have seen absolutely ZERO representation of successful black autistics (or successful autistic people of color in general), but I probably did more than enough blog posts about representation years ago.

Mental Health

Make Therapy Autism-Friendly

…and it needs to start with increasing therapists’ awareness.

This blog was supposed to come out sooner, but I was having mental health challenges at the beginning of this month. Combine that with doing the end-of-semester tasks and this meant no blog post.

So this kind of was inspired by a sentence made in my DBT blog post in which I mention that therapy needs to be autism-friendly. I was critiquing the DBT skills program and DBT as a whole in an autistic lens. This is also a good excuse for me to reflect on why most therapists never suspected me to be autistic. Honestly, the main issues with autism and therapy come down to two core issues: 1) therapists’ lack of awareness and 2) people’s desires to fix the person who is different instead of changing the environment.

Issue #1: Lack of Awareness

Cara, therapists are taught about autism. Right? Yes, but they are only taught the basics of autism which mainly deals with the traits and possibly how to get rid of those traits. They’re not taught about how traits can present in some people who are assigned female at birth or how social conditioning in AFAB people causes them to mask traits. They are only shown studies involving boys or aren’t taught how anyone who doesn’t show the typical male autistic traits can still be autistic. They aren’t taught the strengths that come with autism, but only the challenges. Their professors may cite Autism Speaks as a credible source. Due to this lack of awareness, they might not be taught about the autism SPECTRUM and just only think autistic people are all just “groaning hand flappers”. Parents of autistic children are told “Your child will never do this or can never do that”. Some therapists may not continue their education to learn new therapy techniques or update their knowledge on a particular therapy issue.

My solution: Continuing education about autism, with a strong preference for using autistic sources. Many therapists are required to get continuing education points based on their certification, but how many of them go for the source of easy points or go to the same topic over and over again? How many of the workshops that give continuing education points are about autism? Do those workshops feature autistic people, who are the “true experts” in autism? Are therapists taking the time to read and learn about autism without doing it for the sake of getting continuing education points? Finally, are those sources contributing to harm in autistic people?

Issue #2: Fixing the Problem Person Instead of Changing the Environment or Teaching Coping Strategies

We teach kids to be nice to or include people who are different from us, yet parents and professionals want children to be normal. People cite the medical model in a similar way: this is what’s wrong with the person and it MUST be fixed. While I see some issues with the social model of disability and the neurodiversity movement, it mainly cites that we need to change the environment to be welcoming and to focus on their strength. I DO believe in focusing more on the strengths instead of challenges to decrease stigma.

When I was seeing my second therapist in 2014, she noticed I had issues with eye contact and she made me make eye contact with her whenever I was talking. This is why I’m pretty good at eye contact on a good day. She saw a problem that needed to be fixed, so she did.

So why do I have both “change the environment” AND “teach coping skills”? Realistically, changing the environment may not be possible. In the US, less than 2% of children are DIAGNOSED as autistic. If the numbers are similar with people diagnosed as adults, we make a very small percentage of the population. People don’t seem to want to work to accommodate a very small population so we’re expected to deal with it.

My solutions: Instead of thinking “Why do we have to accommodate such a small percentage?”, think “What can I do to ensure that everyone can be successful?” Figure out what environmental changes will help the autistic person and see if that’s possible as realistically, some venues may not allow a host to reduce sensory input. In the event the environment can’t be changed, the autistic person will need to learn some coping strategies. These can include finding a place designated for the autistic person to go to so they won’t experience sensory overload, having something to wear to reduce visual or auditory sensory input, or fidget toys to help with self-regulation. For example, I have an infinity cube to help me cope in social environments. A person on a Discord server I’m a part of wore sunglasses at their grandmother’s house because of very bright lights. Autistic YouTuber Purple Ella has a room she goes into to relax her in social situations and a secret phrase that cues her husband that it’s time to go. Do not force eye contact, but instead make sure we’re attentive. Don’t discourage stims that don’t cause harm to oneself or others. When I stim at home, I use my hands. I may have my arms to the sides and flap my hands with my fingers pointing downwards or I may flap one or both hands while having my fists partially clenched. Stimming helps with self-regulation and taking away the ability to self-regulate causes mental health issues and meltdowns.

What other solutions do you have to these issues of why therapy isn’t autism-friendly?

Mental Health · School

Alexithymia in Action: Graduation Celebration Update

Alexithymia is a trait where a person cannot identify and describe their emotions. It is commonly linked to autism, but there are mental health conditions that it can be linked to as well, such as depression or PTSD.

It was around two years ago when I first learned about processing emotions. It made no sense to me. In therapy, I realized I can’t process emotions that aren’t the basic mad, sad, and glad. My current therapist occasionally uses an emotion wheel for me.

Even rarer (and sometimes preferred), I feel absolutely NOTHING! Today is one of those days.

Before we get started, let me explain a couple of school-related terminology.

Graduation: The completion of all of your degree requirements.

Commencement (or Commencement Exercises): The formal event where everyone wears caps and gowns and walks across the stage to symbolize their graduation. As final grades do not get reported in university until after the ceremony, the ability to walk across the stage does not automatically assume you graduated.

I graduate from the Master’s program in December 2021. However, due to Covid, we will not be having our commencement until May 2022. I should be disappointed that I have to wait 8 months for a ceremony instead of 3 months. I should be scared that my 91-year-old grandfather might not live to see me walk across the stage by May. I should feel thankful to have extra time to find a (preferably black) photographer for my graduation photoshoot. I should be sad that the kente stole I wanted for my birthday (for the photoshoot) will have to be put on a Christmas wishlist instead.

Instead, I feel absolutely nothing and can’t process whatever emotion is behind the nothing. I see my therapist on Monday so I’ll talk to her about it then. The only thing that doesn’t change is that I planned on having my graduation party in the spring anyways. My original commencement date would have been right before the winter holidays and I don’t want to deal with the unpredictability of winter weather. We can’t predict the future with the weather, so I wouldn’t want to schedule a party for January 15th (example date) and there’s a combination of a snow and ice storm.

Earlier, I mentioned an emotion wheel. When using an emotion wheel, you go from the innermost set of emotions to the outermost set. The emotion wheel I use has fear, anger, disgust, surprised, happy, and sad as the innermost emotions. However, you can use any emotion wheel you find online or one provided by your therapist. Here’s an example of an emotion wheel you can use.

I start my final module in DBT group on Monday and we’ll be learning about emotional regulation. I hope we use an emotion wheel there. I can’t be the only person in that group who can’t identify emotions even if I’m likely the only autistic person in the skills group.

Uncategorized

I Don’t Feel Autistic Enough in Autistic Spaces

School has started back up for me, so blog posts may be lacking in the coming months.

We as an autism community NEED to talk about this as I am probably not the only person who feels this way. Sometimes I feel like the only autistic person who feels that way.

For a bit of a background for new readers: I received my autism diagnosis in June 2021 at the age of 28. In October 2020, I started attending support groups for autistic people that also allowed people who are self-diagnosed or are suspected to be autistic.

In many cases, I feel like I don’t fit in with other autistic people. I’m probably considered the most neurotypical autistic there. I have a Bachelor’s degree and will graduate with a Master’s degree in December 2021. I have a full-time job. Some of the autism-related struggles do not apply to me (like chronic pain or chronic fatigue, which both have a link to autism). I reached childhood developmental milestones early. The only people who can detect that I’m neurodivergent are neurodivergent people, so most people didn’t realize something was wrong with me.

Maybe I don’t feel autistic enough because of internalized ableism. Sometimes the reaction of disclosing your autism is “You don’t look or seem autistic” and I don’t disclose my autism because I expect to hear that. I know I don’t seem autistic. I think some other autistic people don’t think I’m autistic either. Pre-evaluation, the facilitator who is also on the spectrum asked why I wanted a diagnosis since I seemed to be doing well.

Yes, I don’t seem autistic because I worked hard to not appear weird (older autistic people were taught how to be normal). No, I don’t know how to unmask. No, I don’t feel safe unmasking.

I think what would help with what feels like Imposter Syndrome would be to see representation of autistic people in social media and YouTube who aren’t like the typical autistic people. Most people I encountered in AANE support groups either didn’t go to college or dropped out due to challenges related to then-undiagnosed autism. I have yet to find an autistic person who is either currently in grad school or has a Master’s degree. Most of the autistic people we see online are content creators because companies don’t want to hire us and it feels like I’m the only autistic with a job (and autistic people advise not to disclose my autism at work or else I won’t have a job anymore). I want to find other autistic people who want to disclose their diagnosis to help society redefine what autism looks like.

I want to feel like a valid autistic person.

Awareness

Twice Exceptional (2e): What Is It?

Sorry I haven’t posted much lately. I’ve been busy with DBT and haven’t had any topics of interest to write about. I want to write about neurodiversity topics that aren’t commonly talked about, so I’m not going to make blog posts just to increase my content. Speaking of neurodiversity topics that aren’t commonly talked about, what the heck is the term “twice exceptional”?

Twice exceptional (or 2e) describes a person who is intellectually gifted, but has a neurodivergent condition that affects learning. If you have read some of my recent blogs about my autism diagnosis, you will see that I am labeled as 2e as I’m intellectually gifted and autistic.

Yes, autistic people can be intellectually gifted. You might be working with or attending school with someone on the autism spectrum and may not realize it.

If you have never heard of this term, it’s okay! I didn’t hear about it until April 2021 when I was having my intake session with my autism evaluator. I mentioned to her that years ago, my grandfather revealed to me that my elementary school wanted me in a special program at a different school. I asked mom about it because I was wondering if it was a “special needs school”. She told me that the school felt like I was very smart and a school administrator wanted to do a home visit to see if I was naturally smarter than other classmates or if I was getting supplemental learning at home to get ahead of my classmates. Mom didn’t want to go through with it because she wanted me to have a normal childhood. My husband and his brother were in gifted programs at their school, but my husband might not remember what he did in the program. I think it was through his school, while other people have to attend school elsewhere.

This leads us to the next point about gifted children: Are they getting a proper education? It depends. Let’s first talk about gifted education for someone who is neurotypical. In many gifted education programs for kids (not sure if it’s improved now), gifted children get additional homework instead of intellectually-appropriate homework. As someone who had anxiety issues since before starting kindergarten and now has diagnoses of Generalized Anxiety Disorder and Panic Disorder, having a lot of homework would not have worked well for me.

Proper education for twice-exceptional children? Heck, parents of disabled children are still trying to fight hard for accommodations and an education that works well for the child. Now add the fact that people are thinking “WTF?” when they hear a gifted child needs some form of special education and it’s a bigger challenge. You know, the whole “You’re smart, so why aren’t you trying?” issue. People also focus more on the disability instead of the ability. Let’s look at this Understood article written in 2017 by Jon Morin. Jon Morin talked about the educational journey of his oldest son and how the family worked with his high school to balance his intellectual strengths with his neurodivergent challenges. His son’s high school tried something new: a hybrid English program that combined what he was learning in English class with independent study. His son’s strength includes making larger connections to what he’s learning. For example, instead of getting simple worksheets on Romeo and Juliet, he’d write an essay to more deeply explore the play. Could this work for every twice-exceptional student? No, but it’s important to notice your child’s strengths and challenges to find the best way for your student to learn while managing their challenges.

My research dealing with twice exceptional mostly shows twice-exceptional children. If you’re like me, your twice-exceptional profile wasn’t noticed until adulthood. Like autism, there needs to be more resources and services for adults.

To the teachers and future teachers: Learn about twice-exceptional students and how to help students who are gifted, regardless of neurotype. Learn from them too, as a proper education for twice-exceptional students is crucial.

Self-Reflection

Do I Wish to Have Gotten my Autism Diagnosis Sooner?

Short answer: Yes!

I could have included this in my post where I process my diagnoses, but I think this is a question that some of us ask ourselves or others may ask us.

While my answer is yes, I would have wanted a diagnosis AFTER high school. This is because I have been told by other neurodivergent people that they didn’t feel challenged enough at their schools. I was in honors and AP (advanced placement courses) in high school, and I feel that having an autism (or Asperger’s as I probably would have been labeled back then) diagnosis would have prohibited me from taking those classes. As revealed in my testing, I am also intellectually gifted so I would have been bored in my regular classes. Heck, my “finger play” in second grade came from being bored in class.

Would I have wanted a diagnosis in university? Yeah, I was struggling HARD during some semesters in college. Read about that here. I wish my parents started suspecting something when I was having trouble during my freshman year so they could figure out ways I could be helped. Not only was I adjusting to a less-structured life, but my struggles lasted throughout freshman year and returned during junior year. I struggled junior year of high school as well, and they should have suspected something was wrong when their ideas for improving my grades didn’t work. I’m very resentful of my parents for them thinking just trying harder would work. If I had a diagnosis (again, I would have probably been given the Asperger’s label if my diagnosis was before DSM-5 came out), we would find ways that I can minimize my struggles.

A major barrier to getting a proper diagnosis before last month is due to the lack of knowledge a lot of people have about autism. My mom didn’t think I was autistic because she had a brother who was autistic (was because he died in 2007) and I wasn’t like him. It took 5 therapists to notice my social skills issues and an additional therapist to figure out that I show autistic traits. So many therapists are unaware of autism that many of us either get misdiagnosed or are only diagnosed with the comorbidities without someone trying to piece together everything that’s the underlying cause. A misdiagnosis may cause more harm than good, especially if an autistic person is misdiagnosed with Borderline Personality Disorder (BPD). There is such a heavy stigma on BPD inside the mental health industry that a majority of therapists refuse to work with BPD patients. Regarding me not seeming autistic to my mom, non-autistic people have a one-track perception of autism. They expect every autistic person to look the same and have the same presentations. It’s why many autistic women have a hard time seeking a diagnosis. Autism was something that people thought only white boys could have and that it was a childhood condition that people grew out of, hence the lack of services for adults.

I first was wondering if I was autistic almost 6 years ago when a co-worker at the time asked me if I had any learning disabilities because it seemed like I did. This co-worker has been diagnosed with many learning disabilities, but I am not sure if he has an autism diagnosis. If I ever see him again, I’ll ask. This was the first time someone noticed something was wrong with me. However, it was over two years ago when I strongly suspected it. See the full timeline here.

Having a diagnosis much sooner in life would have saved me a lot of stress and anxiety when it came to not performing to neurotypical expectations. I would have been able to get help for things I struggle with. I could have learned what jobs to not do because of my unique autistic traits.