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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.

Mental Health

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.

School

More Support Needed for Master’s Degree Students

a.k.a. Grad school isn’t only for doctoral degrees.

If you’re like me, you may know very little people (or no one) who went on to get a degree more advanced than a Bachelor’s degree. This means you can’t seek mentorship to learn about what happens during the grad school experience.

Nowadays, you can go to your favorite search engine or blog site to search for and read about experiences people had in grad school. However, if you are one of my older readers who went to grad school before the internet became widely used, you were out of luck and would have to learn from your own experience.

My experience: I didn’t know many people who went on to get Master’s degrees. The only family member with a Master’s degree is someone from my mom’s side of the family, but the family member married a guy who came from a country where women don’t work. I have another family member who is a lawyer, but he would be of no help since I wasn’t going to law school. At this point, I searched for stuff about grad school on WordPress and Google (this was before I switched to DuckDuckGo). However, it seemed like the only results I would get for grad school would be about Doctoral programs. When looking at scholarships, I only saw scholarships in the form of grants for Doctoral students. I went to a graduate student open house in 2017 so I could get a waiver so I wouldn’t have to pay the $45 application fee. That was a waste of time and I learned the only way Master’s students can get financial aid is through student loans. No thank you, I still have loans from undergrad (should be paid off before I legally change my last name) and I picked a public university for grad school was because I went private for undergrad.

Hey. Did you know that grad school includes Master’s and Doctoral students? So why do so many blogs and website articles exclude Master’s student experiences? It’s almost like grad school is exclusive to future Doctors.

Then there is the problem I’ve noticed through my time in grad school (pre-Covid): The lack of a sense of community for graduate students. I work full-time and the Computer Science Master’s program at my school has all classes offered in the evening. When I attended classes in-person, I would just arrive to the campus, go to my class, and go home. I was not able to utilize services as those office hours would be during work hours. While I telework most of the time, there are plans for my graduate university to return to 100% in-person activities next semester. Heck, even services and groups meant for graduate students meet during work hours. This assumes that the graduate student is not working while obtaining an advanced degree or that the graduate student has courses during the day.

If graduate students include Master’s and Doctoral students, then why are Master’s students being excluded from online conversations? Why do campuses lack services for graduate students who aren’t full-time non-working students?

And so I’m not just complaining about issues… what can we do about this?

Self-Reflection

Goal Check In #2

Spring Break! We just stole this boat! (I didn’t. Stealing is wrong. This is from Charlie teh Unicron 2, not to be mistaken with Charlie the Unicorn 2)

It really is Spring Break for me, though. While I spend more time in the kickboxing gym and study for my Software Testing and Maintenance midterm exam, this is probably a good time to check in on the goals I made back in August. Goal-setting blog here, and first check in blog here.

Goal #1: Write one poem every one to two months.

Synopsis: In August 2020, I started a personal writing project where I write one poem every month or two with my final poem being written by June 2021.

Progress: So I discovered that the annual poetry service might not happen in July. When I looked at the archives of church newsletters, I discovered that sometimes the annual poetry service is in June and sometimes it is in August. This means I may have to modify the end of my writing challenge. It could end in May or July now. Only time will tell. I’ll find out around May what month I will recite my poem. Wrote some more poems, though inspiration is getting a little hard to find.

Goal #2: Recite one of my poems at this year’s annual poetry service.

Synopsis: I will present a poem I wrote during my personal writing challenge at my Unitarian Universalist church’s annual poetry service in July 2021.

Progress: Due to the uncertainty of when I will present my poem, I have modified my goal to reflect the uncertainty. I’m pretty sure I have decided on a poem already to present in the poetry service, but I still plan on continuing with my writing challenge in case I want to share a poem in a future service. As soon as the poetry service is announced, I will email the person in charge of the annual poetry service to express interest. I also plan on buying a shirt to wear that is relevant to my poem.

Goal #3: Do a lay-led service this year.

Synopsis: I wish to do a lay-led service at my church with the topic being “You’re Never Too Old to be a Changemaker”.

Progress: I honestly don’t know if this will happen. There are some people who do lay-led services every year and they’re getting first dibs on the dates for this summer. We’ll talk about this more in next month’s worship committee meeting, but there is a possibility that spots run out before new people or people who don’t do it every year can sign up. If I can’t do it this year, I will try for next year. However, my 2022 lay-led sermon may deal with a different topic. I will start working on what I will say in the Call to Worship and the Sermon part once I find out if I’ll be able to do it this year. I may do a call and response reading between the offering and my actual sermon. I took a look at some orders of service from last year’s lay-led service to get an idea on the flow. I am also a member of the worship committee so I know I can rely on them for help.

Goal #4: Keep my grades up

Synopsis: In the Master’s program, I need to keep my GPA to at least 3.0 because that is the minimum GPA requirement for graduating with your Master’s degree.

Progress: I’m making sure to keep my grades up. Unlike at my undergraduate university, this school does not display midterm grades to check on our progress. I know assignment grades are posted to Blackboard, but Blackboard doesn’t have the grades weighted so I don’t know exactly what grade I have.

Goal #5: Getting proper mental health help

Synopsis: Therapy has failed me in the past and I want to figure out why.

Progress: I feel like I haven’t really made any progress, though my dad and therapist feel like I’ve made progress. With me not getting help sooner (due to my parents not getting me help), learning and mastering takes a lot longer. My therapist is the facilitator of DBT group therapy, so under her recommendation, I start DBT group in mid-May. I feel the intensity of DBT group therapy (2 hours per group meeting once a week for 24 weeks) will help me have a chance at getting better. DBT is also good for people with therapy-resistant anxiety (like I have). If anyone wants to tell me what group therapy (preferably DBT group therapy is like, you can). Still don’t want to be on medication due to fear of being on another lifelong medication and my difficulty swallowing pills. Neuropsychological centers are starting to open up here, so I’ll get myself on a waitlist.

Self-Reflection

My Dream Job

…is not in IT.

If I could define 2021 for me right now, it is the year of reflection. I didn’t mean for it to be, but I’m now living somewhere that I can safely start figuring myself out. Of course, I’m not 100% safe to fully be myself due to family, but I can start healing from forced expectations.

With my unique neurodivergent profile of strengths and weaknesses (which I’ll one day find out what that profile is), I don’t always fit the typical neurodivergent mold when it comes to jobs. As discussed in my Best Jobs for Neurodivergent People blog post, I am horrible at software development. People with ADHD and autism are considered to make the best programmers. I was most successful as a test engineer, which is a job that is slowly going away due to efforts for tests to be automated. I have not had the same success with any other technology-related job, and it is completely due to my need to be helped when there are no clear step-by-step directions or repetitive, simple tasks. After attending an autism support within the past month, someone pointed out that self employment may be a better option for autistic people. However, I live in the US and need insurance (I’m not on my husband’s health insurance due to not many therapists accepting Tricare), so that’s not an option.

I don’t know how I started thinking about dream jobs, but I realized my dream job last month. It combines what I’ve been learning about neurodivergence with my experience as an assistant kickboxing coach:

I want to own an auditory sensory-friendly boxing and kickboxing gym.

But Cara (not my real name)! Don’t those already exist? Maybe. I honestly don’t know. I have only been to one boxing/kickboxing gym (the one I have been going to for 4 years) and it would be a sensory nightmare for people whose sensory sensitivities are auditory-based. Loud music playing that has at times been so loud that you can’t hear me coaching and a loud timer that goes off to signify the start, last 30 seconds, and end of a round. If your brain is trying to process the coach’s instructions with all of that auditory stimuli going on, it could be tough.

When I thought of this dream job, it was with autistic people in mind. However, an auditory sensory-friendly gym can be helpful for non-autistic people too. Do you get startled or triggered by sudden loud noises due to past trauma? Do you struggle to regulate your attention around music? Is it hard for you to hear someone when there’s background noise?

This dream job will not prevent me from working a full-time job in IT. My coaches have day jobs outside of the kickboxing gym. The coach I mainly work with has his own used car lot and the coach I work with on self-defense works a job in security.

I don’t want this blog post to be too long, so I’ll talk in more detail about what I’d do with this gym to make things auditory sensory friendly as well as staff requirements.