The Indie-Brained

So Elon Musk has Asperger’s. 

I’ve been diagnosed with borderline Asperger’s, as well as ADHD, dyslexia, and social anxiety disorder. I’m not popular socially and I am a nonconformist. Tell me how to write a bestselling book or movie script with a sure path to profitability, aka the Save the Cat path to creative ventures, and I’ll do the opposite. 

I don’t consider myself disabled, so I prefer the term indie-brained. I’d rather be on the cusp of something new than follow the pack. I’d rather have variety than the same old patterns. Some people will point out there is something wrong with me, but I’m just different and the world around me has set things up in a way that only the mainstream brain can figure out. And when I’m trying to figure out the puzzle or maze, it’s very difficult to get myself diagnosed, treated, or even just cope.  

If I grew up in poverty or as a person of a disadvantaged background, it would be even more difficult. What opportunities would be available to me? How would I find a job, or help, or coping mechanisms for my differences from the mainstream? In order to receive services or attend college, I needed to be tested, and it’s not like a blood test, or an X-ray. The testing isn’t readily available, or cheap. 

I was bullied for years at a Roman Catholic parochial school. In the fifth grade, my first year in that school, I’d been diagnosed with what would become ADHD, and was prescribed Ritalin. Earlier, I was delayed developmentally; I was young for my grade. So it should’ve been easy for a kid with my history and poor academic record to receive additional education and coping. But when my parents sought special education in high school, school officials fought it on every level, because in the end I was a budget line. They denied me counseling and social education—even though it was apparent to everyone that I was young for my age and didn’t fit in. With the involvement of my mother and my aunt, and paying for a private psychologist to evaluate me, they finally permitted this line item to receive specialized education, and I improved my grades to become college-bound.

But getting to college, getting to a graduate program, and gaining a license to be able to practice in a field is fraught for the indie-brained. The dreaded standardized test, the choice between four or five options per question, discriminates against us. One work around is for accommodations for test-takers like me, such as additional time and a private room. But here’s where it gets interesting. The college boards want neurological testing to be within the past seven years. When I was interested in exploring law school, I was nearly thirty and my neuropsych testing was over ten years old. I had to come up with two thousand dollars to get new testing before I applied to law school. If you don’t have it, and your parents or another relative can’t come up with that, you can’t get accommodations. And it may have even required additional neurological testing after grad school, if seven years had lapsed and I needed accommodations for a professional licensure board examination. And in all that time, who I am wouldn’t change.

Help and counseling is elusive. Therapists who deal with ADHD typically decline private or publicly funded insurances. This allows them to charge “the market rate.” Around 2005, I paid $150 per hour for therapy, and somewhere around $175 for a half-hour to meet with a psychiatrist from a famous clinic that specializes in ADHD. I’ve always wanted to maintain independence, which meant when I was at my worst, I was struggling in a job or out of work, so if I was lucky to earn fifteen an hour, that took a good quarter of my week’s salary. Or when I worked in corporate America, hanging on by a thread, I’d find that I couldn’t afford the car payment, the rent, groceries… Let me put it this way: if I had no friends, it was because seeing the counselor, in addition to the expenses I listed, meant I had no money left over to go out somewhere and be social. Yet those sessions were worth every penny at that time.

So you may ask, “Isn’t there a national organization to advocate and provide funding for people like you?” For ADHD, there is Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD). When I looked into CHADD in the mid 2000s, it seemed to be set up by therapists to convince wealthy parents to support the cash cow that is therapy. When I was interested in getting involved with the Boston-area chapter, I never got a call or an email returned. They didn’t seem to have people like me on their national board. Their literature seemed geared towards parents who were the paying clients, and member-therapists who needed to establish best practices for the children/patients. Maybe this has changed since the 2000s, but at the time, I didn’t feel adults with ADHD had a place there. And the truth is, I’ve never researched CHADD beyond that. For this article, the search for the name and location of the Boston-area chapter took me to a page of a young boy holding a map, with the search results showing there isn’t a chapter in Massachusetts.

Finding help as an adult isn’t easy. My doctors are at Massachusetts General Hospital in Boston. A couple of years back, I began reading a book that struck a chord with me. Best of all, it was by a MGH clinician, showing examples of how he was improving his patients’ lives. What an awesome opportunity, I thought to myself. And I assumed as he practiced at MGH, he must be like all the other doctors there who took my insurance. I reached out to see him. I was told I’d have to be put on a waiting list, and when I finally did see him, I would pay about $400 per hour out of pocket because he didn’t accept any health insurance. I couldn’t afford that. Who could afford that? The only pro bono work this doctor was doing was with the prison population. My then primary care physician reached out and implored him to take me on as a client. And it didn’t matter; he wouldn’t. 

He wasn’t the first clinician in the marketplace who charged exorbitant rates and refused all insurance, which would have left me penniless. Research hospitals open to the general public shouldn’t allow clinicians to publish books under the title “clinician of the hospital” if they refuse to take on clients without insurance. And once you turn eighteen, or graduate or drop out of school, there really are very few programs out there helping indie-brained adults cope with their struggles and to not simply achieve independence, but also their goals.

I had it easy. I’m going to repeat this: I HAD IT EASY. What I wrote above was easy. I was twenty-one in my final year of college when I knew I wanted to be a writer. I had never read a full book for leisure outside of school. I knew even younger that I wanted to be an entertainer, even though years of bullying made me very introverted, shy, and afraid. I, who was terrible at writing and tested low on reading comprehension (that’s how I still evaluate myself), had it easy. English, grammar, reading, and writing were my worst subjects. I was such a terrible writer that I got a D my first pass at Writing 101 in college, and I retook it. And because I had an interest in politics and government, I chose political science as a major, but no one ever told me that poli sci was heavy reading and heavy writing, which meant that with my lack of strong writing skills, my GPA was brought down because of my major.

I worked hard on my own, reading challenging books with a notebook nearby. When I came to words I didn’t understand, I wrote them down. Then after an hour, I’d walk over to this giant red book called a dictionary and I looked them up. This was before there were dozens of online dictionaries, slang dictionaries, and reference guides. A map used to be a piece of paper you’d buy. Now online maps are free, and within the maps are an entire world catalogued on photos of the streets, houses, businesses, and reviews. I used these a lot. Back then, I studied a bit of Latin to understand word roots, and I watched movies to see how stories were constructed. If I’m ever giving a speech, please don’t ask me if I’ve read a particular book. Probably I haven’t. I read at a rate of about fifteen pages (Barnes and Noble-branded classic books) an hour.

I moved out to LA in 2009 after writing three screenplays. I believed I could’ve been a good film director. In addition to my health issues, which would later develop into a blood cancer, I was struggling socially. I moved around a bit within Los Angeles, to four addresses within two years. I bounced from temp job to temp job, and at my final one, I was once again bullied by a coworker, which I no longer had tolerance for. I snapped at her, “If you don’t like my work, you should report it to my supervisor.” I think it is unfair, but that’s life as a temp, and I was let go. I hadn’t found permanent employment, and I hadn’t written in over a year, and I decided to move back to New England. 

At the end of 2011, I only knew about my ADHD and dyslexia diagnoses. I had been told that with ADHD, when I found something I loved, I would succeed. And I had found something, but still struggled very much. I couldn’t balance earning money with a full-time job and hadn’t found permanent housing.  One thing I did learn from those LA days was that whether you were Matt Damon, Rufus Wainwright, or the smallest rock n’ roll band, you spent a lot of time on other people’s couches to avert costs. 

My move back to Boston was predicated by my grandmother passing away, and her house becoming available. I’d cut my expenses, pay the bills, and keep an eye on the property, in what an ex termed “the museum” in my hometown of Randolph. The move wasn’t easy by any means. I had gone from the cultural capital of Los Angeles to a suburb of Boston. But I got some space to grow and learn as a person, tackling the question of why I wasn’t able to succeed by doing the things I loved. Why did I have anxiety having to pick up the phone, or walking into a room with people whom I didn’t know? Why did I smother people? Why did I use meeting people as an escape? Why did I fly off the handle when either being rejected by someone, or when confronted by bullies? 

It wasn’t until 2016-17, when I found a clinician at Beth Israel Deaconess who was willing to test me and push the insurance through, that I was diagnosed with borderline Asperger’s. In the process of trying to find some therapy, I came across another clinician at the MGH Lurie Center who said maybe this isn’t as much Asperger’s but a bit of social anxiety disorder. And so I’m left with it that I am a bit indie-brained. I’m in therapy with one of the few clinics that accepts public insurance.

And again, I had it easy. Because the reason that MGH clinician only takes former prisoners as pro bono patients is because those men and women have had nothing. They were different. They had nothing of the opportunities that I had. They could be a lot like me mentally, but maybe their parent or parents told them to get out of the house at sixteen. Statistics show that people like me, who have diagnosed or undiagnosed ADHD, Asperger’s, dyslexia, or mental health issues, end up in prisons. 

So Elon Musk has Asperger’s, and others may not know they have it. They didn’t have parents to throw money at a problem. What would it have been like for me if my dad didn’t work fourteen hours a day owning and operating a restaurant to pay for tests or my earlier sessions? Where would I be? Where would I have been as an adult if I sometimes didn’t accept the need to improve myself and follow my interests? We need not only comprehensive change in how we approach the mentally ill, but we need to fundamentally change how we address the affordability of diagnosis and treatment of the indie-brained as well, and how we gear up young people to be supported in fields and skills that are suitable for them. Because it is so difficult.

But I’ve had it easy.