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.

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.

Limerence (Obsessive Thoughts About People) and Neurodivergence

Definition of Limerence: Intense romantic attraction that includes obsessive thoughts, fantasies, and a strong desire to form a romantic relationship with your person of interest.

Never heard of the term? Neither did I until June 22nd when I was looking up information about being hyperfixated on people. Someone mentioned the term in the r/ADHD subreddit on a post about someone being hyperfixated on a person.

When I was looking up hyperfixation, most of the results dealt with hyperfixation being associated with ADHD. However, autistic people can have hyperfixations as well. Note: I was also evaluated for ADHD during my neuropsych evaluation and I do not have ADHD. My ADHD-like issues regarding executive function appear more under anxiety.

Have you experienced being obsessed with people you had a crush on? Do you talk about your crush often? Would these crushes last more than a year? Why is this reminding me of my middle school (and high school to a lesser time extent) self? This my friends is limerence.

My hyperfixation on crushes started in sixth grade when I developed a crush on a guy named Adam. At the time, I didn’t know of the term crush, so I would tell people I was “in love” with him. I tried to get a band together called “Adam’s Angels” where we’d perform parodies of songs where words were changed to describe Adam. I would talk about him all the time. I’d even write his name on my palms (one palm said “Ad” and the other palm said “am”). I made him a sign to put on his locker for his birthday since people’s lockers would be decorated for birthdays. I wanted to marry him. When he was thinking about going to a private all-boys school for high school (he didn’t), it devastated me. I was mad at this one guy for having his picture being between Adam and I’s yearbook picture because I for sure thought my picture would be next to his (funny thing is that I would develop a crush on that guy in eighth grade). People said I was obsessed with Adam and I took that as a compliment because I didn’t know the negative connotation of the word (thanks, autism).

Cara, don’t middle schoolers act like this around their crushes? At my middle school, they didn’t. The entire sixth grade knew about my crush on Adam. Besides, limerence does not go away after middle school.

Fast forward to ninth grade where I develop a crush on this one guy in band. In tenth grade, he revealed that I’m a very obsessive person and he quit a club we were in back in ninth grade once he became my next crush. That freakin’ hurt. As a way of masking, I tried to tone down my obsessive behaviors, which didn’t work. It was years after I finished university that I discovered that I naturally have an obsessive personality.

Speaking of university, there was a cute guy in my microbiology class. I talked about him so much that my friends wrote a letter to me about how I talked about him too much and I either need to talk to him or shut up. Luckily, one friend wanted no involvement in that letter (thanks, Kain). University was a time when my social deficits came to light more and upon reflection, I truly put in more effort to masking during my time there. I’m not nearly as boy-crazy as I once was, but adult Cara (not my real name) still can get a little chatty regarding crushes. Also, I only was chatty about boy crushes. Once I started developing feelings for girls, I was silent about it. Very silent.

I was reading the Aspergirls book and didn’t feel alone when I read part of Chapter 8 titled “Attraction, Dating, Sex, and Relationships” (look, I know people don’t like that chapter because of its heteronormative dating advice, but this book was written in 2010 when not many people used inclusive language and people didn’t use terms like “heteronormativity” or “comphet”). The author of this book as well as an excerpt by Elfinia shared something in common with me: we would become obsessed with our crushes and that never turned out well.

So is there a way to tone down our obsessions with people? Should we change ourselves if we’re not putting ourselves or others in danger?

This post has been brought to you by my brother-in-law’s nice legs. All that bicycling will do that to your legs. Thumbs up. Play the song “Bicycle Race” either the original Queen version or the cover by Blümchen.

Processing My Autism Diagnosis

It feels like it’s been so long since I have written a blog post. I had my vow renewal, and that resulted in my childhood friend developing a crush on my brother-in-law (the best man).

Earlier this month, I received my diagnosis of autism (as well as panic disorder and a re-diagnosis of Generalized Anxiety Disorder). When I received my report, it was days before my feedback session with my autism evaluator. She wanted to give me time to process the report (16 pages!) ahead of time. I decided to process my diagnoses with my therapist. Short version of how I feel:

• Autism: Very Happy
• Generalized Anxiety Disorder: I received that diagnosis in early 2020 before the pandemic shut things down
• Panic Disorder: Wasn’t expecting that. That’s new

So why am I very happy with an autism diagnosis? Almost 6 years ago, I started suspecting that I’m autistic. Two years ago, I started strongly suspecting it. Reading Aspergirls made my life make sense to me. Support groups and stories from autistic people helped me understand ahead of time that autistic people aren’t “broken” so they don’t need to be fixed like non-autistic people think. I almost got diagnosed with Social Pragmatic Communication Disorder, which is a new diagnosis most people don’t hear about and some women have been given this “weaker” diagnosis. However, two things were able to get me the proper autism diagnosis: my intense interest in medical stuff when I was nine years old, and the “finger play” motor stereotypies I would engage in when I was 7 and bored in second grade.

How do I feel about my anxiety-related disorders? Well the Generalized Anxiety Disorder diagnosis isn’t new. What did surprise me is the Panic Disorder diagnosis, as I feel like my anxiety attacks did not happen often enough to qualify for that diagnosis. My evaluator recommended short-term (whatever that means) medication that focuses on treating the anxiety and panic. While I didn’t want to be put on medication as I worried I’d be on it for the rest of my life and that it was the same as succumbing to my mental illness, things that happened earlier this year made me realize that medication may be my only hope to get better. I will talk to someone at my therapy center’s medication management team in the near future, and I feel like the only reason why my therapist is on board with medication despite me asking for months is because my evaluator said it may help. For those new to my blogs, I can’t use cannabis as a natural treatment due to the nature of my job and the fact that my husband gets drug tested for the army. L-theanine isn’t really cutting it anymore either.

How do I feel about being intellectually gifted and thus twice-exceptional (2E)? So I’m surprised that I’m intellectually gifted. Some of us gifted people were considered really smart in our younger years, and then high school or college starts bringing about challenges as we now have to put in more effort into our schooling. I struggled in my post-college job and it took me years to realize that my unique aspects of my neurotype causes me to not be a good programmer despite autistic people being known to be good computer programmers. However, once I found a job that was a perfect fit, my intellectual gifts became more pronounced and people at my job noticed my giftedness before I discovered it. I’ll make a post about twice-exceptionality at a later date.

Honestly, if it wasn’t for Covid, I wouldn’t have gotten an autism diagnosis. Most therapists aren’t fully aware of autism or the differences between boys and girls on the spectrum. The therapist I had pre-Covid had to quit because she works full-time as a pediatric social worker and she would be almost too mentally exhausted to conduct therapy. The therapist I had after that noticed my social skills issues from Day 1, which no other therapist did. She had to quit due to having to move for a new job, but I want to find her to thank her for noticing the most significant challenge I have that’s an aspect of my autism. Because those two therapists quit, I went to a different location where therapists didn’t have nearly as high of a turnover rate. This is where I found the therapist who noticed my autism.

Thank you Shanay and thank you Maria. If it wasn’t for you two, I would not have had my autism diagnosed.

Before I end this blog, readers who were here back in 2017 may remember that I made a blog post about an ADHD diagnosis based on a questionnaire. As we now now that my ADHD-like issues regarding executive function appear more under anxiety and that my evaluation I had last month did not reveal ADHD (my evaluator tested me for that too), will I delete that post? The answer is NO. This is because many autistic women are misdiagnosed with ADHD due to the overlap of symptoms and I want to show that I was a victim of misdiagnosis. However, it should be pointed out that some people have a diagnosis of both ADHD and autism. People thought you had to have one or the other, but professionals are now learning that you can have both.

The Path to a Neuropsychological Evaluation: Part 4 (Feedback Session and Results)

Please find Part 1 here, Part 2 here, and Part 3 here. Part 1 mainly talks about the timeline of noticing different neurodivergent aspects of myself, part 2 mainly talks about my (virtual) intake session with my evaluator, and part 3 talks about what I did for my evaluation.

Since my last blog post, I completed the anxiety questionnaire. It only asked about the past week, which doesn’t give a full picture of my Generalized Anxiety Disorder. Due to my Part 1 blog post, she gave me two ADHD questionnaires as well. Those who were here since the beginning of Diary of Self may remember when I posted about my primary care doctor feeling like I have very mild ADHD. Due to me not having the same presentations my brother had and my parents not understanding that I struggled in undergrad and earlier, they didn’t believe it.

On June 1, I received my report. Where I went for my evaluation, the evaluators write very thorough reports. I sent the report to my therapist as she expressed interest in reading the report. My evaluator gave me the report ahead of time so I can have a few days to mentally process everything. I waited to read it until the next day during my therapy session. 16 pages! While people do evaluation reports differently, my evaluation report included the following:

• Testing rationale: why I was getting tested
• Summary of findings, which included the diagnoses
• Recommendations based on findings
• Evaluation measures and procedures
• Relevant history
• General behavioral observations
• Interpretation of scores
• Detailed discussion of test findings
• Additional resources
• An appendix with my score summaries

On June 4, I had my feedback session with my evaluator. This was done virtually as the evaluation center is trying to have as few people inside the office as possible. This is also good as I live over an hour away from where I did my evaluation. I was allowed to have other people in the feedback session as well, though I only had my mom in the call with us since my dad and husband were at work. However, who can attend your feedback session with you will depend on your evaluator. In this feedback session, I was given the opportunity to ask any questions that I had and my evaluator talked about things on the report. She is sending a revised report because my therapist noticed that one of the tests I did had nothing under the detailed reports section. That was because nothing major was noticed in that test.

My final diagnoses are as follows:

• Autism
• Generalized Anxiety Disorder (I was diagnosed with this in early 2020, so that was no surprise)
• Panic Disorder
• Given my full scale IQ of 129, I am considered twice exceptional (or 2E) meaning I am intellectually gifted with special needs

As for whether I have ADHD, I don’t. My evaluator feels like my executive functioning skills aren’t very good when I’m anxious, but that’s it. Thank you all so much for following this path with me! Expect more blogs from me about autism and what it means to be 2E mixed in with my grad school posts.

The Path to a Neuropsychological Evaluation: Part 3 (Evaluation)

Please find Part 1 here and Part 2 here. Part 1 mainly talks about the timeline of noticing different neurodivergent aspects of myself and part 2 mainly talks about my (virtual) intake session with my evaluator.

I apologize for this post appearing long after the beginning of May. I had two days of evaluations plus other later days for more questionnaires. Before we get started with talking about my evaluation, there are some things I need to point out.

1. This neuropsych evaluation was to evaluate me for autism or possibly Social (Pragmatic) Communication Disorder. An evaluation for another neuropsych condition will not look the same.
2. This was my autism evaluation. Your experience may be different, especially since I was evaluated at a center that customizes the tests based on what was discussed at intake.
3. I will not tell you in detail what goes on in each test I had to do. If I do, it may influence you to take your test a specific way in order to get the diagnosis you want. I don’t know if other evaluation centers say this specifically, but the evaluators where I went are explicitly trained to stop tests and discard all scores if it becomes obvious that someone studied ahead of time, especially if this is testing to get into a special program or school for gifted children.

My evaluation occurred over two days (plus additional later days). Sometimes it can be done in one day, but I took so long with the IQ test that we didn’t exactly have enough time to do everything in one day.

The first test I did was an IQ test. The IQ test comprised of many different parts. For someone with an IQ in the average range, it will take you about 90 minutes. However, it took me about (or maybe more than) 2.5 hours. This is because I consistently was making it all the way to the end of each section where the hardest stuff occurs. I don’t know my actual IQ yet as some parts of the test were done on paper, but it was in this IQ test that I learned I fall within the range of being intellectually gifted. Most of my IQ test was done using an iPad app that is connected to my evaluator’s iPad. Many years ago, IQ tests were solely done using paper and a pencil. If your child is taking an IQ test, reassure them that they should do the best they can and not worry about getting every question right.

After a snack break (and stretching my legs because of how long I was sitting), there was the interview portion. My parents were brought in and we talked about things relating to my childhood. My evaluator used the Autism Diagnostic Interview – Revised (ADI-R) to gather my history. On the second day of evaluation, my evaluator asked me more questions that were a part of the ADI-R.

Next, the evaluator asked me about the meaning of figurative phrases. My brain wasn’t in the best state as there were a lot of things that had gone wrong on my ride to my second day of evaluation, so that made things not as fun. Some of the phrases were phrases even my evaluator never heard of! Just do the best you can to figure out the meaning of phrases you have never heard of.

After that was some executive functioning testing. It involved paper and pencil as well as doing something on an iPad. Again, I will not tell you what things I did for that test as you will probably try to prep ahead of time. You may recognize one portion of the test from other online sites, though. I know I have seen it many many years ago.

Anything after this may not be in the correct order, but that’s okay. We did some memory testing where I had to recall things I heard and I surprisingly did better than I thought! You see, my memory regarding recalling what I read is not that great, but I apparently do better when recalling things I hear. That’s odd because it often doesn’t feel that way at work. That’s why my primary care doctor thought I may have ADHD. After doing some more unrelated tests, I had to do memory recall again to test how much I remember. This is to test how much you can recall despite a time lapse and doing other activities.

At some point (not sure when), there was an activity with 20 pictures and I would have to guess what picture my evaluator was thinking of in as little questions as possible. Sounds like Guess Who, right?

Once that was done, my evaluator pulled out a lot of pictures and I had to tell what was happening, describe how people were feeling, and what I predict will happen. This part was honestly the most mentally exhausting part of the evaluation as I didn’t know how many pictures out of that big stack I was going to have to talk about. We did not do all of the pictures, thank goodness. I think this and the ADI-R were done in place of the commonly-used Autism Diagnostic Observation Schedule (ADOS). This is good because I discovered Purple Ella through her adult autism assessment video and she describes fully what she did in the ADOS.

Next, I had to do a questionnaire regarding social things. Depending on your age, the questionnaire about yourself may be different. As I am an adult, I got an adult self questionnaire. Meanwhile, my mom was in the lobby working on the adult questionnaire that a parent or relative does. Now will all parents of adult neuropsychology clients need to do a questionnaire and interview? Probably not always, but I wasn’t driving myself so it was probably something for them to do. As my parents missed so many things, I worry about whether that will affect my diagnosis.

I also did an emotional questionnaire, which I feel is important due to my emotional regulation issues. Some people get misdiagnosed with Borderline Personality Disorder due to emotional regulation issues, though emotional dysregulation can be found in people with ADHD and autism as well. I was not in the office when I did this questionnaire, but I did it online with my evaluator as some of the questions are known to be confusing to people. It was so many questions too!

The final thing I have to do is an anxiety questionnaire. As of the time of this writing, I am still waiting for the questionnaire. I feel like this blog post was taking too long to be released so I’m not waiting to post this any long. Like the emotional questionnaire, I will do this online. However, I will this on my own instead of with my evaluator. I don’t think this is typical in a neuropsychological evaluation, but I have Generalized Anxiety Disorder so my evaluator wants to get a clear picture of my anxiety.

Now that everything’s over, what is my final diagnosis? Is it Autism Spectrum Disorder like I thought, Social Pragmatic Communication Disorder like my evaluator suspects, or something else? See you in the final part of this blog series The Path to a Neuropsychological Evaluation.

The Path to a Neuropsychological Evaluation: Part 2 (Contacting and Intake)

Part 1 of this series can be found here. Part 1 mainly talks about the timeline of noticing different neurodivergent aspects of myself.

I thought it would be much longer before I continued this series, but luckily cancellations exist so I don’t have to wait as long! More on that later.

The last time we talked about my path to an evaluation, my therapist gave me a list of people I could pick. To give a quick recap, these were the following requirements for who made it on the list:

• The evaluator has an understanding about how AFAB people present differently
• The neuropsychology center must test adults
• The neuropsychology center must do autism evaluations

With the list in hand (or email), I started looking at each web site. Any web site that did not explicitly mention autism evaluations were eliminated. After more searching, I came across the one I wanted. Why did I pick this place despite it being so far away? The evaluators tailor the neuropsych evaluation based on what may be suspected. They can add or remove testing based on the reason why you’re seeking an evaluation. I waited to contact the place since my therapist planned to talk with me about things and sent an email during the next therapy session (April 7th). I heard back about 10 minutes later asking about my timeline as there is a bit of a waitlist and we could talk about the logistics of everything. We scheduled a phone call for the next day.

Note to anyone else seeking an evaluation for autism, ADHD, or other neuropsychological conditions: Waitlists are typical, and may be much longer due to the backlog created when Covid shut down many evaluation centers.

April 8 rolls around and finally my phone rings. I checked yesterday’s email to see the phone numbers listed in the signature so I wouldn’t accidentally ignore the phone call. The director of the program that does evaluations called me on her cell phone. We talked and discussed testing options and I went for the autism-focused evaluation instead of the super complete evaluation that tests for everything because the autism-focused test is a lot cheaper ($2500 at this place) compared to the super evaluation (up to $4700 at this place). Prices may vary depending on where you go, and some places will either not accept insurance or give you a “superbill” to submit to your insurance for reimbursement. I was tentatively given summer at the earliest time for an evaluation, maybe as late as September.

But 10 minutes later, I get another phone call finding out that someone canceled and I am getting a much sooner evaluation date! My evaluation day is May 1st, with May 2nd scheduled as well in case my mental stamina required me to take an additional day for testing. Luckily this place tests on the weekends so I don’t have to take off from work. But first, an intake session.

My intake session was on April 20th. It was done in a virtual setting to keep as little people in the office as possible. Especially good since the testing center is on the southern part of my state while I live in the northern part of my state. It’s about an hour and a half drive down there assuming I don’t encounter heavy traffic. So what was my intake like?

Before the actual intake session, I had to fill out the intake forms that people typically fill out when starting at a new therapy place. However, I feel like this place has an excessively long intake form. If I were to fill it out on paper instead of electronically, that would have been a total of 12 pages. This also was not a specific autism evaluation intake form, which I would have preferred. Other evaluation centers may have intake forms specific to what is being evaluated. On the day of my intake session, I discussed with my evaluator about getting tested for autism and went over a history of the issues that made me and my therapist think I am on the spectrum. I was told about what will be happening during my evaluation and that my evaluation will be six hours long. Breaks are given when necessary for the person being evaluated. I’m going to do my absolute best to finish the evaluation in one day so I won’t have to commute over an hour two days in a row. Will I finish my evaluation in one day?

I also shared part one (linked above) of this blog post with my evaluator so she can get a better timeline of when people started noticing things being wrong with me. I don’t know if she’ll look at more of my blog posts, but if she’s looking at this part now, hi. She found it really helpful to get a better understanding of my experiences and I suggest that you have some way to fully explain all of your neurodivergent-related issues. An intake session may not give you enough time and you may forget to include things to talk about during your intake or interview time during the evaluation. However, I got the idea to have some type of report of my personal history from another blogger. It helped the blogger get an autism diagnosis.

Next time on The Path to a Neuropsychological Evaluation (I thought of this in the Dragonball Z narrator voice), I will talk about what was a part of my evaluation. However, I won’t go into detail about what happened in each part because I don’t want to cause a reader to copy me to get the same diagnosis. If an evaluator notices that you prepped ahead of time, they can stop the test and discard all answers.

Why Autism Awareness is Still Needed

Happy Autism Acceptance Month! The month of April is known as Autism Awareness Month, but many autistic people are advocating for acceptance. Wearing read for acceptance instead of blue for awareness. Plus, Autism Awareness started with Autism Speaks, which is an organization not liked by autistic people, due to many different factors.

Side note: some people refer to Autism Speaks as Autism $peaks since Autism Speaks seems to care more about money than helping autistic people, but I will never use the dollar sign since I may have readers who use screen readers and the screen reader may translate it to “dollar peaks” or “dollar sign peaks”.

Anyways, I have the opinion that there needs to be more awareness about different aspects of autism. People have outdated knowledge of autism, such as “girls can’t be autistic” or “autism is only a childhood condition that goes away when the child becomes an adult”. People also only see the typical presentations of autism, whether it’s due to only knowing autism as it was decades ago or only know the signs that come from research studies with only boys as participants. This is what prevented anyone from noticing my autistic traits and caused my mom to not think I was autistic. I would have been diagnosed years ago if this wasn’t the case. Now I’m waiting for an evaluation.

There are also autism centers that focus on treating or curing people of their autism. Therapies like ABA are considered abusive due to forced compliance training and the use of punishments to discourage unwanted actions. The goal of ABA is to make an autistic person act neurotypical. People even say they wouldn’t treat their dogs this way. Think about it. An autistic person being treated more poorly than a pet. Autism never goes away, despite visits to Defeat Autism Now doctors (if they still exist) or a gluten-free/casein-free diet. Support and accommodations are needed to help thrive in a world that assumes everyone is neurotypical.

There needs to be awareness of the strengths and gifts that come with autism. Too often does society, and even autistic people or families of autistic people, focus too much on the negative aspects of autism. Sure, we should be realistic of the challenges that are faced by autistic people, but we shouldn’t focus so much of the negative aspects that we leave autistic people feeling broken. How can we change society’s perception of autism if we ourselves treat it like a death sentence? Autistic people may have unique insights and ideas regarding their interest that neurotypical people may not notice. A list of possible strengths can be found in the AANE article Asperger Profiles: The Big Picture – Strengths. If people were more aware of the strengths and lost their implicit biases, less people would be afraid to disclose their diagnoses at work. People should be given the tools they need to be successful in school, work, and life.

Why aren’t there more supports and resources for adults? Despite old myths, autistic children grow up into autistic adults, many of whom don’t get diagnosed until they are adults. We may have missed a critical period to learn skills to improve our deficits (I feel like my social skills are getting worse), especially since we often hear “early intervention is the key to success”. However, the early intervention phrase we hear may also highlight the problem that mental health professionals aren’t really aware of the signs. It shouldn’t have taken me 5 therapists to have my social skills problems noticed and it shouldn’t have taken me 6 therapists to have someone notice that I may be on the autism spectrum. Yes, the understanding of autism has been and still is evolving. Many adults on the spectrum get diagnosed because their child is diagnosed. Parents think certain behaviors and anxieties are typical because they exhibited the same behaviors and anxieties. I think my mom is starting to question whether she is on the autism spectrum herself now that I’m getting my autism evaluation (which explains why she never thought anything was wrong with me). My favorite autistic YouTuber Purple Ella was diagnosed when her oldest daughter was diagnosed. With more supports and resources for adults, it wouldn’t be so hard to find an evaluation center that evaluates adults. Adults can play catch up on improving skill deficits.

Make our neurotypical society aware of the ways autistic people have (and can) contribute to society and allow us the chance to succeed.

The Path to a Neuropsychological Evaluation: Part 1 (Timeline, Waiting, and Referral)

Hey everyone. We are now that the point of my neurodivergent discovery journey where we start finding out what neurodivergent condition(s) I have. Here’s an approximate timeline of when things became a problem in the eyes of other people.

2001: In third grade, I started speech therapy due to a rapid speaking pace and pausing in weird spots when talking. I also had problems completing classwork as quickly as other people and having a messy desk. I used workarounds to finish reading after that was noted and I was able to keep a clean desk. I usually (even to this day) end up not talking when I get called on and don’t know the answer. I almost got a note sent home for that in music class during pull-out group piano lessons with someone who is not the main music teacher. That experience left me silently crying because I didn’t want to get in trouble at school or home.

9 years old: I started skin picking due to what I would later learn is dermatillomania. Years later, my mom would punish me for it to shame me into stopping. She told me I was the only person in the world with this problem and blamed me for getting my friend to start skin picking too (she was originally picking her hair). It wasn’t until my current therapist when I learned that I may be doing it for fidgeting purposes and that many of her neurodivergent patients also pick their skin. I still skin pick to this day.

Middle school: Reading class was always hard for me, not because I couldn’t read, but I have difficulties answering questions based on what I read. I was moved to a lower reading class for eighth grade.

10th grade: Mom informed me that my social skills are not up to par because I didn’t say hi to this one guy when we were getting measured for our class rings (which I only wore 5 times my entire life). Later that school year, mom thought I was bothering a friend during the Tri-M Music Honor Society induction reception, so she had me sit down with her. That was very embarrassing as it felt like I was publicly in time out. When creating my schedule for 11th grade, I was asked to move down to college prep English from Honors English.

11th Grade: Pre-calculus and chemistry were hard. Then again, my math teacher was often absent to take care of a sick mother. My dad tried to have me only use the computer for fun for only up to two hours after getting home to help bring my grades up, but that failed. That should have keyed them in that something was wrong. The English class I was in was taught by a teacher who also teaches students whose reading level is 2 to 4 years below grade level, so I didn’t like that we had to do the county library’s reading program. I had already stopped finishing with reading the books I had to for English class and since I didn’t read for fun, I wrote down random manga for the reading program.

University: I struggled during my freshman and junior years. Full story in this blog post. A guy I liked at the time pointed out my eye contact issues during my freshman year. This is the first time this was brought up.

2014: A therapist noticed I wasn’t making eye contact and had me make eye contact. I wonder why she didn’t start suspecting things.

2015: I had to get a job as a software developer because I couldn’t find any other IT jobs. I never wanted to be a developer. It was hard and someone who is diagnosed with multiple learning disabilities asked me if I had any learning disabilities because it seems like I did. I lost that job in 2016 and started with a new company in October 2016.

2017: After some struggles at work as a developer, I talked to my doctor and was told I have very mild ADHD based on a questionnaire. I made a blog post about it, but I will delete it if the diagnosis was wrong. (More on that later)

2018: I got kicked off a project due to lack of Java knowledge. I feel like my neurodivergence was a big part of it (I heard there was a racism issue too), and I was considering pursuing legal action for not accepting my disability. I started realizing that being a developer isn’t for me. The disABILITIES forum section of Disboards helped me gain modern-day knowledge of autism later this year.

2019: An incident at work due to my (lack of) social skills and appropriateness almost cost me my job. My sexual orientation saved me from it, likely. This is when I seriously started considering that I’m on the autism spectrum. My test engineering lead said I think differently. However, this has helped me become a successful test engineer. I also started therapy again to try it one more time.

2020: The pieces are starting to come together. I lost one therapist due to her daytime job at the hospital causing things to become overwhelming for her time-wise. I got a new therapist who on the first visit noticed my social skills problems. After a comment she made, I felt like she hinted that I may be on the autism spectrum. She got a new daytime job that required her to relocate, so I lost her after only 4 sessions. Due to losing two therapists in the same year, I changed therapy places later in 2020 for stability. I know 2020 sucked for everyone, but I feel like Covid allowed me to find a new therapy place that treated things other than anxiety, depression, and learning disabilities. My current therapist noticed in the first visit that I’m neurodivergent. However, the neuropsychologists that my therapist typically refers people to were still closed. The waiting game begins. I also discovered YouTuber Purple Ella, who was diagnosed with ADHD and autism due to having two autistic kids and one with both ADHD and autism. I also started learning about how girls present with ADHD and autism differently and that some autistic women were misdiagnosed with ADHD (could this be my case?)

2021: I finally had the time to read books “Aspergirls” by Rudy Simone who now goes by the name Artemisia Xene and “Divergent Mind” by Jenara Nerenberg. “Aspergirls” almost completely captured my experience as a woman with undiagnosed autism. We have ruled out Borderline Personality Disorder as a diagnosis (I made some mental health blog posts where I said I felt like I have BPD, which some autistic women get misdiagnosed with this before getting a proper diagnosis). Last month, I found out that neuropsychological centers are starting to open. My therapist picked neuropsychology centers based on the following criteria:

• The evaluator has an understanding of how girls and women present differently. Women are often undiagnosed until they are adults because autism and ADHD studies focus on male presentation. Women may have learned to hide their symptoms to be socially accepted or may have spent a lot of time studying neurotypical people to pretend to be like them.
• The neuropsychology center must test adults. Fun fact: Autistic people grow up. Autism was thought to only occur in childhood and the kids would grow out of it. Therefore, there are very few resources for adults to seek help and evaluations. The authors of the books I read are self-diagnosed autistic women. Artemisia could not find anyone who could evaluate her or believe her and many adults choose to not seek a diagnosis due to their age. learning ways to cope, or finding that there would be no added benefit to a diagnosis.
• The neuropsychology center must do autism evaluations. I was looking for centers months ago and found one that explicitly said they don’t do autism evaluations. I’ve been living for 28 years without a proper diagnosis and I can’t slip through the cracks again. I want to get the proper help I need and find accommodations that can help me at work.

Now that I have a list of referrals, my therapist and I will discuss this next week and I can start the next phase.

If Therapy Fails, It’s Not Your Fault

Many years ago, I felt beyond help because therapy wasn’t working. After three therapists, dad wanted me on medication because it wasn’t normal for therapy to fail after three therapists. I gave up on therapy. I tried again near the end of 2019. Didn’t seem like it was working either. Some psychology articles about therapy not working blame the client for not putting in the effort. (You’re not trying. Does that sentence sound familiar, neurodivergent people?) However, I’m learning that it wasn’t my fault. Yes, I started being more honest in therapy with therapist #4, but we’re going to talk about why therapy may fail even after “therapist shopping”, which is when you go from therapist to therapist to find the right one for you, or putting in the effort.

I was talking to my therapist about this and she told me two reasons why therapy truly doesn’t work for people: the therapist failed you (yes, happened to me) or the type of therapy isn’t right for you (I’ll be exploring a new therapy modality in May). In this blog, I will later propose a third reason.

Let’s talk about the first reason: the therapist failed you. As I learned from personal experience, not every therapist has up-to-date knowledge of mental health treatments. This is especially true of older or more experienced therapists. They will solely use talk therapy or older treatment modalities. They likely will not understand neurodivergent conditions, which is also the case for some newer therapists, or may treat it the way it was treated many many years ago (ADHD? Take some pills and you should be fine. Autistic? Make them fit in by teaching them not to stim). I should not have to learn about modern mental health treatments from my ex-boyfriend. Some therapists are just crappy, like my third therapist who didn’t think therapy would work for me if it didn’t work the first two times. Then again, having a rare mental health insurance separate from regular health insurance when I was on my parents’ health insurance limited who I could see when workplace bullying caused more mental health problems. Whether your therapist thinks that treatment is one size fits all or they have outdated knowledge, you’re not going to make much progress.

Second reason: the type of therapy isn’t right for you. Talk therapy is just that. Talking. You don’t get homework assignments to do or skills to practice. Cognitive Behavioral Therapy (CBT) is popular, but doesn’t always work. I don’t think I need to always talk about my negative views on mindfulness. Does Dialectical Behavior Therapy (DBT) work for every person with Borderline Personality Disorder? Generalized Anxiety Disorder is supposed to be best treated with CBT, but CBT failed to work for me after having many therapists use it. When I switched to a new therapy center, I chose a place that has many therapists who use DBT and also has a DBT skills group that I will start in mid-May. I felt that if CBT and talk therapy failed, I should try DBT. Then again, I thought I had Borderline Personality Disorder (BPD) and some of their therapists actually treat BPD patients, but my therapist has ruled out BPD. I have also seen that DBT can be utilized for people with various diagnoses, even therapy-resistant Generalized Anxiety Disorder. Not only does my therapist utilize DBT with her patients, but she runs the DBT skills group. We will try DBT to see if I have better long-term success.

However, there is a possible third reason that therapy could not work for you: you may either have an incorrect diagnosis or another underlying diagnosis that is causing or includes another diagnosis.

My previous therapy center only has therapists who treat patients with anxiety, depression, and/or learning disabilities. However, if you have a more serious mental illness, they didn’t treat it. Very few therapists worked with clients with ADHD. I chose my current therapy center because they treated more serious illnesses and actually treated BPD, which was what I used to think I had. BPD bloggers have talked about how stigmatized BPD is in mental health communities and some therapists refuse to treat BPD patients. This therapy center also has many therapists who work with autistic clients, which is very important because both my therapist and I feel like I’m on the autism spectrum. Not many therapists have knowledge of autism other than basic discussion taught in one lesson in one course, and they might not be taught accurate information as professors don’t utilize sources written by autistic people.

Autistic people, especially autistic women, are not always given the right diagnosis. Some autistic women are diagnosed with BPD before getting the correct autism diagnosis. On a monthly basis, I talk to an autistic man who was given the incorrect diagnosis of schizophrenia before getting his proper autism diagnosis. Some people diagnosed with ADHD are actually on the autism spectrum, whether the person has been misdiagnosed with ADHD or the autistic person also has ADHD. A wrong diagnosis means a delay in proper treatment. People talk about how early intervention is the key to successful treatment, but getting treated for the wrong thing can be either ineffective or harmful.

Some autistic people think Generalized Anxiety Disorder is a misdiagnosis, but that anxiety disorder is a comorbid diagnosis caused by autistic people having to fit into a neurotypical world or are naturally predisposed to be more sensitive to anxiety triggers. This also leads us to anxiety and depression being comorbidities or even symptoms of another mental illness or a neurodivergent condition. Anxiety and depression are common comorbidities for ADHD, autism, and other mental illnesses. Symptoms may overlap. Not only do ADHD and autism have many of the same symptoms, so does Bipolar 2 and BPD.

Going so long without having a therapist suspect me to be on the autism spectrum means that I lost many years of critical coping and social skills work, especially since social skills and social appropriateness are the aspects of autism that I struggle with the most. Now that I did a screening questionnaire with my therapist, she now knows what things to work on. While I’m not sure if my anxiety can be treated in a way that I would no longer qualify for a Generalized Anxiety Disorder diagnosis, I can learn about how my “differently-wired brain” impacts my life and how to better cope with living in a world that was not made for people who are not neurotypical.