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.

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.

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 and neurodivergent

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.