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yet-another-autistic-blog · 5 years

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The Journey

I started my autism journey a few months ago, but realistically, it's a journey I've been on my whole life. Two of my best friends noticed that I was having a rough time dealing with life, so they encouraged me to seek out mental health help. I was scared, but I knew they were right. I made the appointment, and quickly was diagnosed with severe anxiety and mild depression. I was put on an antidepressant, started going to therapy, and was put into a 6-week "Understanding Anxiety" class.

At first, it was helping. The medication took a while to kick in, but when it did start working I noticed my appetite getting better, and I was having much less frequent "panic attacks." I put that in quotes because I later realized they were actually meltdowns. The therapy kind of helped, in the sense that it was nice to finally talk to someone about how my narcissistic mom messed me up in a lot of ways (that's a topic for another post). The class was more helpful than the therapist because it gave me concrete strategies and tools I could use.

As I started working on my anxiety, I realized there were issues I was struggling with that didn't fit into the anxiety box or the depression box. Since there's a family history of autism in my family, I started looking up more information about it. Most of the early stuff I read described how to diagnose autism in children, so I almost gave up, but I decided to google "adult female autism" and found several articles written by women on the spectrum. Many of the things I read seemed eerily familiar.

I started a list of reasons I might be on the spectrum. It was supposed to be a pros and cons list, but the few things I wrote on the "reasons I'm not autistic" side were just self doubts without much substance. The other list soon grew much larger than I had anticipated. I tried to think back to my childhood and revisit old memories in an autistic context. For example, I remember my mom being bothered that I walk on my toes "because it's a sign of autism." I still walk on my toes because I thought that was a dumb reason not to. I remember my mom getting angry at me when she would ask me a question and I would take too long to respond because I had to think about my answer. I remember getting overwhelmed by too much sound, too much light, too strong tastes, too uncomfortable clothes.

When the list reached nearly 3 pages long, I decided I needed to talk to a professional about my findings. I knew that 4 kids in my family had official diagnoses (2 of my brothers + 2 of my cousins), and that a few adults in the family were suspected to be on the spectrum. I decided that I was going to be the first adult in my family to get a diagnosis. I figured that Step 1 would be to talk to my therapist at our next session. I organized my list into categories, and made sure to include at least one memory from childhood for each category. I printed it out, put it in my bag, and went to the therapy appointment.

I took a few deep breaths to calm my anxiety, and I told her about my suspicions. I tried to tell her verbally some of the reasons, but I started feeling anxious again as she didn't seem convinced. She reasoned that because I've been able to hold down a job for 3.5 years and I feel empathy when my boyfriend feels bad, I can't possibly be on the spectrum. And besides, even if I was, apparently Kaiser doesn't do autism diagnosis in adults. And even if I was able to get a diagnosis, they don't have any programs to support autistic adults.

I felt crushed. I thought I finally had the answer to a question I had been asking my whole life: "What the hell is wrong with me?" Then I realized, the therapist was not an autism expert. She's probably only familiar with the stereotype of autism, not the subtleties. I knew that people on the spectrum are capable of feeling very deep empathy. I knew that even though I was successfully holding that job, I was still struggling with specific aspects of that job, like phone calls, writing complex emails, etc. I realized that I was able to learn more about autism in a month of online research than this woman learned in all her years of school.

I honestly don't remember the words of the rest of the appointment. I remember slipping back into my mask, because I no longer felt safe. I remember that it was suddenly much harder to make eye contact than it had been previously. I remember thinking about the printout in my bag. I never even mentioned it to her because if she didn't even understand that people on the spectrum can feel empathy, then she wasn't going to understand the subtleties of what I had written. I said whatever I needed to say to fill out the clock until our session was over. We made a follow-up appointment as usual because that's just what you do at the end of an appointment, and I was certainly not going to break routine and create a conflict. I cancelled the appointment online later that day because I had lost all my trust in her.

Since that appointment, I continued to struggle with the autism question. I spent hours reading forum posts, blog posts, articles, etc. Eventually I came to these conclusions:

1. It's highly likely that I have Asperger's / Autism Level 1, and I've just been masking well enough that nobody caught it.

2. An official diagnosis would be helpful for confirming what I already know, but there aren't really any support services for adults I would be able to take advantage of, so it's currently not worth the thousands of dollars it would take to get diagnosed outside of Kaiser.

3. If I struggle with the same things autistic people do, and if their coping strategies also help me (stimming, taking more alone time, engaging in special interests, etc), then it makes sense for me to use the label.

Speaking of labels, I know that Asperger's isn't the official name anymore. However, it's much easier to refer to myself as an Aspie than a "person on the autism spectrum." If that bothers you, feel free not to follow my blog. If you are autistic, suspect you might be autistic, want to know more about what it’s like to live on the spectrum, or just want to see me type words, feel free to follow. My journey isn’t over. It’s just getting started.

#autism #aspergers #actuallyautistic #personal #autism acceptance

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