This Spectrum Gal Won’t Live with Grandma

This Field Was Intentionally Left Blank posted a piece on their blog the silent wave about a man on the autism spectrum who lives with his grandmother. This piece is in response:

My grandmother is 97 and I haven’t spoken to her in more than two years. One reason for this is that she would want me to live with her, the same way I believe she fostered dependence in my mother. I live in a different state from her. I get disability benefits, but have my own apartment. I know it is important that I remain as independent as possible. I also know how family dynamics work, and how a parent with a dominant personality can overcome that of a child, especially one who is vulnerable, different in some way.

For example, I recently read The Secret Life of the Lonely Doll: The Search for Dare Wright, about a woman who was never able to escape from her domineering mother to become her own person. She never developed into a fully functioning adult. She and her mother had an almost incestuous relationship in that they shared a bed and that her mother would photograph her in various stages of undress. My mother would walk in on me when I was in the bedroom I shared with my brother, undressing. When I got angry at her for doing that – my father was always careful to knock first – she would say that her mother did that to her, like why would I make a big deal about it.

There is also a condition known as Munchhausen by proxy, in which a parent causes a child to be ill in order to call attention to themselves or to have someone to take care of.

After my parents’ divorce, when I was nine, my brother was five, and my mother was about the age that I am now, my grandmother said that my mother would just lie on the floor and cry. My grandmother would tell me that story when I would say that I was glad that my mom and dad had finally divorced, because there was finally peace and quiet, no more fighting. I would feel guilty as though I was the one who made my mother cry by not being there.
My mother suffered from postpartum depression after the birth of my younger brother. She was hospitalized many times afterwards, continuing into our adulthoods. My grandmother blamed my father for her illness. She was diagnosed with many things during the rest of her life, but only one I heard straight from a mental health professional was schizoaffective disorder. She had worked as a high school math teacher prior to when I was born, then became a stay-at-home mom. After the divorce, she was unable to return to teaching, however, because of her mental health issues.
My grandmother sent her money every month to pay for food, rent, and other expenses. She bought her a car. My mother continued to live in a different city and state than my grandmother, but was attached through this tie of financial obligation. Because of my grandmother’s “help,” my mother never again learned to support herself or to navigate the system in order to get help.

This is why I feel the need to break away.

When I was still working, when I seemed unhappy while talking to my grandmother on the phone, she would say, “If I sent you $100, would that help?” To which I’d angrily reply “No.” She would also say, “You’re always welcome here, honey.”

Maybe these are normal, grandmotherly things to do. I could be completely off in pathologizing the intergenerational relationships. It could be a matter of degree rather than kind. Parents want to help their children out when they are in need. Grandparents like to be generous. There is a time, though, when they need to use tough love, and teach their children to help themselves, to survive on their own.

When my mother was in hospice for cancer, I was back on disability. My grandmother said, “Maybe it’s a blessing in disguise,” and said she’d pay me to live with my mother and “drive her around.” That would take me away from what supports I’d managed to find in the city where I live.

In the article, the man describes how he and his grandmother disagree on religion, but agree not to bring it up. This is not the case with my grandmother and me. I have tried over the years not to bring up politics because I can’t seem to have a discussion with someone who disagrees with me without becoming angry. Or it could just be that my grandmother never gave me credit for my beliefs or respected them. Instead, she acted as though I was brainwashed saying, “You’ve been listening to people who hate America.”

I was diagnosed as being on the autism spectrum a few weeks ago. I’m also diagnosed with OCD and bipolar disorder. I am not saying that any of these conditions are my grandmother’s fault. I am simply saying that they perhaps make me more vulnerable to the influences of someone who doesn’t believe in my abilities or respect my boundaries, unless I cut off all contact.

As I write this, it is the night before Christmas Eve, and the holidays are difficult for those of us who are estranged from our families. A family friend, a woman my age who I grew up with, who my grandmother helped raise, who I used to think of as a sister before we grew apart during adolescence, has said to make sure I won’t regret it if I don’t reconcile with my grandmother before her death. I am running out of time to deal with my anger towards my grandmother, and to see if I can get to the place where I can forgive.

the silent wave

This is a beautiful and heartwarming article written by Tom Clements, who has also been known as The Autistic Buddha.  He asked me if I was interested in publishing one of his essays on this blog, to which I enthusiastically replied that I’d be honored.  Because it is indeed an honor for me to have an amazing soul such as Tom to make such a request.  His writing is truly touching, elegant in its apparent simplicity, and nothing short of perfect in choice of words.  A fascinating read, that includes the right synergy of sentiment, history, and lightheartedness.  Tom has also written at least two articles that I know of for the galactically cool website, The Art Of Autism; I’ve included links below. 🙂  Thank you for this honor, dear Soul-Brother, from the bottom of my heart!  I would love to meet your Nan; after reading this, I feel like…

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Creating an Asperger’s / autism-friendly home sanctuary

I think this post will helpful in teaching myself self care. I’m very bad about housework, either because I’m in my own world, exhausted when you get home from my regularly scheduled activities that may have been overstimulating, or maybe depressed or anxious. Right now my normally spacious studio is full of boxes of my pottery, an avalanche of paper, and dishes. At this point I think I shut down and only want to nap when you get home.

When I get overwhelmed like this, it stays in this condition for weeks. I am working to figure it out. I was diagnosed as being on the spectrum a couple of weeks ago. And ADD, and both those diagnoses make sense.

I hope that I can find the way to make my own home environment more livable.

the silent wave

Asperger’s/autism is usually characterized by sensory sensitivity–that is to say that we’re more sensitive to (and thus, by necessity, more particular about) our surroundings.  It is indeed possible to not be extra-sensitive to one’s surroundings and still meet the diagnostic criteria (I’ve bolded the relevant parts for emphasis):

B – Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history

  1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
  2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).
  3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or…

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Now what?

Can autism be a way to retreat from society? I just typed a long post I thought was articulate and brilliant, and WordPress didn’t save it. One of the stereotypes of Aspies is of computer geniuses like Bill Gates. So one might wonder how I be autistic if I can’t understand WordPress and can barely type this out on my phone using suggested text? What if I have Luddite tendencies instead?

This is a fantasy, of course. I may only have internet access on my phone, but I check Facebook constantly.  I was doing worse I refused to get a cell phone for some reason such as the signal harmed your brain and it was bad for the environment. The therapist in had then replied, “But it’s okay for Gina to have one?” Gina (her name has been changed) was leader of the intentional community for mental illness that I was then a part of. I had given Gina’s number to my therapist as a way to contact me.

I would sit on the couch in the community apartment, a blanket wrapped around me, and watch movies. One movie I watched several times was Nell. I identified with Jodie Foster’s character. I fantasized about being a feral child, outside of society.

Yesterday I was trying to explain to my current therapist my desire to retreat, that I liked to think I was different from other people, that I was more like an animal, a child of nature. She asked why I didn’t want to be part of society. I said the fact that I hadn’t lashed out at her verbally and yelled at her when she didn’t understand showed progress, even recovery.

I couldn’t see myself but I think I got a faraway look in my eyes as I told her the words I’d use to describe it–beautiful, freedom, Romantic (not in the Harlequin sense), etc. She said she was beginning to understand.

In the movie, Nell is thought to have autism, and other feral children are as well. So being apart from society does have something to do with autism. I can’t have it as a goal to be like them. It’s too late to be raised apart from society. And I’ve read that there was really no such thing as children living in the wilderness. They were actually victims of severe isolation and abuse. They are thought to have always had severe developmental disabilities. I shouldn’t romanticize them.

I think the conversation with my therapist was a breakthrough. I told her one of the things I’ve been thinking about — that I can live out my fantasy of leaving civilization vicariously through books like Into the Wild. Or if I can’t concentrate enough to read, I can watch the movie m.

I can work through my anger that he doesn’t survive and that as a woman it would be harder to live like that for safety reasons, such as the danger of being raped. My therapist said she’s read the book.

I don’t want to be using my new diagnosis as an excuse, but I don’t see recovery for myself as joining the mainstream world of career and family.c__data_users_defapps_appdata_internetexplorer_temp_saved-images_jodie-foster-nell-1994-bpf06t

On the spectrum, or “What’s one more label?”

Five hours of neuropsych testing has confirmed what I’ve long suspected: I’m on the autism spectrum. I’m feeling relief, but also like it’s too good to be true, or that I somehow manipulated the doctor into giving me this diagnosis. There’s a whole community of “neurodivergent” people, many of whom don’t consider there to be anything wrong. They just have a different way of looking at the world.

That’s what a psychology grad student had said years ago at the psychiatry clinic on the edge of campus, right by the fraternity houses.

I line up my pill bottles in the bathroom cabinet. They don’t all fit on the same shelf. Seven, plus a prescription sleeping pill. Only three are psychiatric meds, though, and one prescription comes in two different bottles, because I’m at a dose above what the FDA recommends.

My mother carried a bottle of Depakote in her purse, swallowing one of the fat pink pills only when she felt she needed to. She acted like she was being persecuted because of her religious and political beliefs. But she cooperated enough to have a psychiatrist and a case manager—who she called a “good friend”—and to fill her prescriptions even if she didn’t take them. She refused to believe that she had symptoms of psychosis.

When I dropped out of college and started going to the hospital for outpatient treatment, they thought I was in the early stages of developing schizophrenia. The young female resident said, “We’re waiting to see if you get worse.” Even now, I’ll sometimes dream I see things no one else can, like some type of squid-like monster in the bathtub, and think in the dream that it means I’m schizophrenic, and try not to let anyone know I see anything unusual, as though keeping it a secret will keep it from being true.

The summer after what chronologically would have been my junior year in college, I was staying with members of Campus Crusade for Christ, and getting hooked into the conspiracy theory books they had on a bookshelf. I took these books and the theories within them about the Illuminati and one-world government and one-world religion to heart, while the girls said they just kept them around “to laugh at how extreme they were.” I was also upset that my friend had a boyfriend. I liked her boyfriend and was jealous. I told her I liked him, and she said she “felt threatened” by the fact that I said I wanted to be friends with him. Even though she’d tell people he was her friend, and told me she didn’t even think she liked him. I was angry and would yell at her. This understandably freaked her out. The combination of those two things pushed me close to the edge.

Then the final straw was when my ex-boyfriend started dating someone else. I was on Zoloft then. I told my ex that I didn’t think it was working. I’d gone on to him on the phone comparing my life to the movie Amadeus, which I’d first seen with him, saying that my former friend, the one who I’d had the love triangle with over her boyfriend the previous summer, was Mozart and I was Salieri. She had the talent and was also small and adorable and charming. Impish and childish. A sweet innocent little flower child. My ex-boyfriend stopped me and said, “Are you sure your medication isn’t working?”

He said I’d been talking for more than half an hour and still hadn’t asked him how he was. He said usually I’d call, and I’d “rant,” and then I’d eventually stop and ask how he was doing, and he’d say, “Doing ok.” It could be that the antidepressant was making me manic. That’s if it’s true that I’m bipolar. The neuropsychologist didn’t think I was. But that’s not his area of expertise. I said he hadn’t seen me off my meds. After my ex chided me for not having asked him how he was, and he got a painful “Sorry!” out of me, and I did ask, he said that he’d gone out and played pool with a woman he’d sat a shift with at the student-run crisis line where we met and would sit shifts together. I said, “I didn’t know you were a pool shark!”
A week or two later, he called again and said, after I’d probably ranted about my problems, “I have some news that I should probably tell you. I’m actually dating someone.”

I asked if it was the woman he’d played pool with, and he said it was. I think now that he was trying to break it to me gently. Like the joke where the guy has his friend watch his cat while he’s on vacation, and when he calls to check in, his friend tells him the cat died. The guy gets angry and says the friend should have prepared him in stages. First saying “He’s on the roof, but the firemen are getting him down,” then “He was injured when he fell, but a brilliant surgeon is doing all he can,” and so on. Then the guy asks his friend—or maybe it was his brother—how his mother is doing. “She’s on the roof, but the firemen are getting her down…”

While I was on the phone with him I took it well, but I started getting upset as soon as I’d hung up. I hadn’t learned the “skills” of “emotion regulation” then. I believed in being authentic to myself and my feelings, and being in the moment. The problem is I couldn’t get out of that moment, even when I wanted to. I didn’t know about the boring and irritating word recovery then. I wasn’t very goal directed. I’d come back to my room in my student apartment after an unfruitful evening at the library trying to work on my first paper for the Virginia Woolf class I was taking. If I’d stayed there and persevered, or at least until the library closed at midnight, he would’ve gotten my answering machine.

I couldn’t sleep. I felt like crying all the time but couldn’t. To make matters worse I’d just had my weekly counseling appointment at the student health center. I called a crisis line. Not the one where we’d met sitting shifts together, but a national one. I seem to have gotten the same woman who I’d talked to when I was upset about the fact that my ex and I were still cuddling, holding hands, giving massages, even kissing on the lips with no tongue, though we were “friends” now. I thought at the time I felt guilty, though now I think maybe he was using me, or maybe he didn’t know he was using me and didn’t mean to, or maybe we “used each other,” as his new girlfriend told me. It could be that I am asexual, and that was the level of physical intimacy I liked, while he wanted more. I’d been telling the woman on the crisis line about it, and she’d said, “So you don’t want him to be your boyfriend, but you’re acting like he’s your boyfriend?” Which I thought was judgmental.

This time when I said I wouldn’t get to see my counselor again for another two weeks, she just said, “That’s a long time.” And when I finally asked what I should do, she said, “Don’t call him.” In our training protocols at the crisis line I’d worked on previously we were taught not to give advice, so that was unprofessional of her.

When I finally got to see my counselor again, we made an appointment to see a psychiatrist who put me on Risperdal, to help me sleep, they said. And I was on Depakote, those same fat pink pills my mother would play her stupid games with. It made me nauseous. But I couldn’t even throw up to make the queasy feeling go away and bring relief. Once I was at a coffee shop across from the university. I felt a wave of nausea coming on so I ordered hot mint herbal tea and went down to the basement to lie in the nook. When I came back up for more hot water in my mug I saw my ex and his new girlfriend. I’d heard a cello playing when I was downstairs but now I didn’t find it’s sweet sad tones soothing. I put my mug in the place for dirty dishes on a counter by the cream and sugar and left.
At some point, I talked them into taking me off Depakote. I was still on Risperdal and Zoloft, and stayed that way as I left the Student Health Center when the director said I was beyond what they could do for people.

The director showed me what she’d written on the referral to the hospital: that I was experiencing symptoms of psychosis. I was angry and asked why she wrote that. She said it was so I could get seen sooner. That probably was the beginning of them thinking I was starting to get schizophrenia. And I was at least getting paranoid about the Illuminati one-world government and antichrist stuff I’d read about in the Campus Crusade house—holding the dollar bill up to my counselor, pointing at the pyramid with the eye, and asking, “How do I know you’re not one of them?” I was in my early twenties, and they thought it was my first breakdown. I think I always had the problems, something that may get addressed now that I have the official autism diagnosis. But often young people begin developing schizophrenia in their early twenties, often when they are away at college. And having that diagnosis probably was a lifesaver.
I may never know for sure, but I’d guess that the reason I got disability on my first try, within a couple of months of applying, was that schizophrenia, or at least psychosis, was in my chart.
When I was told over the phone that I was considered disabled and would be getting benefits, the man on the other end of the line said that I’d have to have my money managed. I said I’d always managed my own money and knew how to do it. “That’s not what your medical records indicate, ma’am,” he said. I asked what my medical records said, and he said he couldn’t tell me because it could be detrimental to a patient’s mental health to find that out.

The neuropsychologist asked me why I was on disability. I said I didn’t know, but said it was probably for schizophrenia or psychosis, which I don’t have. I said I would like to try to get my records to know for sure.

“Good luck with that,” he sa