Diagnosis

Lately, people have been asking me about my informal diagnosis of ASD.  Unlike many adults, who experience their own diagnosis as empowering, I was devastated. Let me explain. As a teenager, all I ever wanted was to be invisible inside a crowd, and to some extent I succeeded. I recently attended a high school reunion from my school  – it wasn’t my year but mine was invited to one of the events.  I knew a couple of people but the majority of them were strangers to me – all of them.  And I was a stranger to them. Many knew me only in the context of my ex-husband’s memoir, “Look Me in the Eye.” I guess I was more successful at vanishing than I remembered.  Invisible, I was never a part of the group. I only had a few places where I felt comfortable in high school – in the AV Club and in my gym class, but the reasons why the typical place for trauma – gym class – was a place for comfort is another story – the nickel version is, it was a unique co-ed class that used “Outward Bound” as its model, so we did a lot of teamwork exercises instead of calisthenics. 

After high school, once I decided that invisibility was preventing me from any success, I started to be more outgoing, which was very difficult; my problems with recognizing others was certainly a handicap. I did my best to blend in – I tried to be social, chatting about inconsequential things as well as important issues. I thought that I had finally achieved “normalcy.” I made friends and tried very hard. Still, I was informally voted the geekiest teacher at a high school known for peculiarity.

The avalanche of awareness finally caught me – John asked me to participate in Simon Baron-Cohen’s longitudinal study of family members of people on the spectrum. Since Jack had been diagnosed at this point, I was needed as his mother. I logged in to the website and started answering questions honestly and to the best of my ability. I grew more and more uncomfortable as the instrument progressed. For the first time, the totality of what I had always considered “my quirks” was laid out. I couldn’t finish; I cried out, “I’m fucking autistic!” 

At first, I cried hysterically, then gradually acquiesed to the unacceptable. I blew my nose on some tissue (Puffs Plus, the only kind I like) and wiped my smeared glasses on my shirttail (all-cotton, of course).  I’ve done the same things every time emotion overcomes me, for whatever reason. Sometimes, the hysterical crying takes longer and is smearier. After a little while, I finished the survey. The results came quickly and were exactly what I now knew but feared; I was on the spectrum (but not officially diagnosed they warned – they don’t diagnose from this single albeit extensive survey but my scores were highly indicative of one who qualified for such a diagnosis), and did I have any family members who might also be willing to complete the survey? I called my brother, Ed, and asked him, me still sniffling, eyes leaking. He agreed, so I gave his contact information. An hour later, he called; he was one, too, and his scores were, if possible, even more indicative than mine! This gave me a little comfort; misery really does love company! We chatted for hours in the middle of the night - he lives on the west coast so it wasn’t so late for him.

In the aftermath, it took me months to be willing to start talking about it with others. I was immediately dismayed. My friend, Amy, said that she’s known for years but knew that any comment would only upset me, so she had kept silent. Matt said that he, too, had been diagnosed. Bill said his son had a formal diagnosis and he had an informal one. Apparently, most of my friends are on the spectrum, too - like has attracted like (or we just don't notice the traits that annoy neurotypicals). John told me of, the previous year, giving a book reading in Oregon. Ed came to the reading; a lady asked John if I was also on the spectrum. He referred the woman to Ed, as a brother would be more of an expert on me, who stood up and nodded. I was devastated all over again.  I thought that I had fooled everyone into thinking that I was “normal”. If my act hadn’t fooled anyone, was my life a failure? Rather like when my clothes got tight and yet I refused to consider that I might have gained weight, the only one I’d successfully fooled was myself. 

For me, knowledge was not empowering but it was undeniable. In the last few years, I’ve had to face some hard truths. I’m fat. I’m in a world that isn’t interested in hiring someone with my odd skill set. I’m female when most of the people who share my interests are male (and suspicious). I have chronic digestive problems. And I’m on the autism spectrum. The first, I might someday succeed in conquering, but the rest is just me. I’ve had to accept it – good and bad - or I would end up hating an integral part of myself. THAT is unacceptable. I don’t HAVE autism, I AM autism, just like I’m female. For me, trying to change those aspects would be mutilation. I even accept the visible scars on my body from my digestive battles. They are the outward symbols that I continue to survive. Eventually, the Truth will set you free.

The Radio Game

When I was about five years old, my parents bought a fancy reel-to-reel stereo tape recorder. Closed, it fascinated me, a large, thick, squat black box, with a silver central latch closing its split doors. If you unfastened the latch and opened the heavy doors, you revealed the secrets: speakers covered in silvery-colored metallic mesh on the top of each thick door and small, closed compartments on the bottom, the doors hiding the machinery in the middle. The inner compartments on each door had a small, metal-rimmed hole, centered, just the perfect size to insert a finger into. If you inserted your index finger and pulled up, another latch would release and a little door would swing upwards, presenting you with a hank of wire ending in what I now know is now called an RCA connector. You could thread the connector through the hole and shut the compartment, then remove the door from the portion that they covered by sliding them off of their hinges. The RCA connectors could then be plugged into the back of the central portion. 

The central part was full of controls, sockets to plug in microphones, more controls for the mics, and fasteners for tape reels. It took reels that were so big, they couldn’t fit inside the covering speakers when the doors was closed. I loved the ritual of hauling the big box, covered in fake black leather, out of the cupboard and settling with it under the grand piano. There, I would open the doors, slide the speakers off of their hinges and move them a few feet away, for better playback sound quality. Then, I got out the wires and plugged them in and plugged the machine into the wall socket. I would take out the empty reel and place it on the right-hand hub and the connector turned to lock the reel onto the machine. The full reel of tape that we kids were allowed to use was always readily available. I would place it on the left-hand hub and fasten it down, too. Finally, I could thread the tape into the machine and plug in a microphone, and start playing “radio.” 

My brothers, Ted and Danny, and I had invented this game. When they first got the tape recorder, my parents had forbidden Danny and me from touching it for fear that we would break it because we were, in their minds, careless little kids. Ted, being older and technically inclined, was allowed to use it.  After several months, it had lost its newness and we had demonstrated with Ted’s supervision that we were very careful, so we could take it out. We would come up with a script, unwritten, of course, and tape ourselves performing it. Sometimes, we created sarcastic versions of various commercials that we had heard on television or on the radio. Sometimes, it was entire radio-plays, complete with sound effects and commercials. We had a repertoire of comedy that I practiced regularly. My brothers were in school all day but I only had half-days in kindergarten. I started to play radio by myself, frequently, and to play back my recorded efforts to my mother. Together with the boys and all by myself, we produced polished versions of the same scripts, erasing the ones that didn’t sound good. We had only the single reel of tape I had practiced for hours and hours over the days, weeks, and months that followed. 

The reason for my constant practice was this - I didn’t like my voice at first, listening to the playback, hearing my voice as others did, because of my flat intonation. It contrasted in my mind with the actors and announcers that I heard on television. I practiced over and over to sound more like the professionals. This frequent practice taught me how to speak with a melodious voice. In this way, I learned how to speak so I wouldn’t sound different from “normal” people. 

Occasionally, when I’m concentrating on something else, the flat intonation creeps back in to my voice but I usually notice it before I talk that way for too long. Since speaking with inflection isn’t entirely natural to me, it requires more effort. I enjoy the silence of my own thoughts after a long day.

Roasted Garlic Hummus

I made this for Margaret earlier today. We both agreed that it was very tasty.

Roast a head of garlic by:

1.       Peel off the outer layer of “paper.” Leave the cloves covered by their covering, though. If you want, trim the ends of each clove to expose the cloves but this isn’t necessary.

2.       Center the head on a square of aluminum foil.

3.       Drizzle the top of the head with a little olive oil.

4.       Tightly close the foil, leaving some air inside the packet.

5.       Bake at 350 degrees for 35 minutes (or turn off the oven after 25 minutes, not opening the door, and let it sit for another 20 minutes.

6.       Allow to cool for a bit and open the packet. Remove a clove. If you didn’t trim the end, trim the opposite end now (the end where you pulled it from the head).

7.       Squeeze the cooked garlic out of the clove.

8.       Wrap and refrigerate any unused portion.

Combine in a blender:

1.       1 can of chick peas, drained, but reserve ¼ cup of the liquid

2.       ¼ cup of the drained liquid from the can of chick peas

3.       3 tablespoons of lemon juice

4.       4 cloves of roasted garlic (just the inside, not the paper)

5.       ½ teaspoon salt

6.       1 ½ tablespoons olive oil

7.       1 ½ tablespoons of tahini

Pulse/blend for a couple of minutes. You may need to stir it periodically to get it to blend.

Put in a bowl. Make a well in the center, add ½ tablespoon of olive oil and another clove or two of roasted garlic, flaked into in small pieces.

Serve with crackers or pita bread.

Pug Meets Baby

You should have seen Puggo yesterday. Lindsey’s husband, Matt, is a KISS fan and wanted see the lit guitar, so we all agreed to meet for brunch and I brought the guitar to John’s house. Jack brought the RepRap and we showed off our advanced in technology. Lindsey and Matt have a 14 month old baby, a little girl who is cautious about the notion of walking but she crawls very well. Lindsey put the baby down on the floor and Puggo came up to see what kind of Pug-sized creature was perched on all fours on Puggo’s turf.

Puggo sniffed and licked at the baby’s face; the baby giggled but eventually pushed at Puggo’s snout, then started to crawl across the rug. Puggo was entranced! Puggo gave the “PLAY with me!!” crouch, then raced into the living room. Puggo circled the interior of the house several times, barking happily. The baby sat down,  her diapered bottom plopped firmly onto the rug, and watched the dog in curiosity. Puggo would approach the baby to sniff and lick at her face, then race off, daring the baby to chase her. The baby wasn’t as quick as the Puggo, even if she was a skilled crawler. Still, Puggo was ecstatic to have someone close to her size and form on the floor; someone who wasn’t a feline.

Puggo’s little curled tail wagged furiously whenever the baby looked her way, so much so that Puggo’s whole rump wagged. We got out Puggo’s stuffed chicken toy from the basket, the chicken with the squeaky in the head, and handed it to the baby. The baby waved it happily but didn’t want to share with Puggo. She kept it away from the dog, grinning and giggling, occasionally saying, “No!” and “Chicken!” The baby even chewed on the chicken. The baby should develop a strong immune system! 

Neither deep literature nor instruction in the Geek Way; just an observation of what I found humorous yesterday.  Some posts are like that.

Suicidal wildlife

The doe eyed the passing traffic warily as it delicately tongued the newly sprouted leaves into her mouth, delicately stripping the low-growing branch. A large dead buck laid nearby, on the side of the divided highway, semi-dried ropes of intestines sprouting from its ruptured abdomen. Connecticut Route 15 is known as both the Merritt Parkway and as the Wilbur Cross Parkway, depending on where you are. I had entered the road at I-91 but hadn’t yet reached the tunnel at New Haven, so I was still on the Wilber Cross when I saw them, the bodies spread out over a stretch of about 15 miles. These were the fourth and fifth deer that I had seen since the interchange from I-91, but the first live one, still seemingly pausing for a snack before leaping to its doom. Maybe, on this day anyway, it wouldn’t jump. Did the doe have a fawn lying in the grass, nearby? If it did, I didn’t see it. There was still one more deer carcass next to the road, a few miles before I reached the tunnel, then, much to my surprise, no more. 

Why so many suicidal deer along such a short stretch of highway, I don’t know. It was early morning and I had to get to Philadelphia by noon. I drove carefully, uncertain if other wildlife might attack my car as it sped down the road. 

 Why was I driving to Philadelphia? That's another story. For this episode, suffice to say that I reached my destination and returned, later that night, physically unscathed. No animals were injured in the process.

It's been a long time but I've been busy!

       Sometimes, I get really annoyed.

       I visited family graves last weekend and took a number of photographs of head and foot stones. I started my trip in Granby, MA, where my father’s family is buried, as are my brothers. Danny was twenty years old and schizophrenic; one winter weekend, he went off camping, to get away from the demons that only he could see. There had been unseasonably warm weather at the end of January, with days hovering around 60 degrees. On the night of February 1, the temperature dropped precipitously as a cold front came in; the nighttime temperature dropped into the negative digits with 40 mph winds. Danny didn’t have a chance. He froze to death, a few hundred yards from the nearest road, struggling to reach it, crawling when he could no longer walk, as evidenced by the scuff-cuts on his poor hands and knees. 

       Danny was joined by our brother, Paul, several years later. Paul was a good-time guy – everybody loved Paul and Paul was the life of any party. One night, coming home from a bar, only about half a mile from where Danny died, he apparently fell asleep at the wheel. He wasn’t wearing a seatbelt when his truck hit a tree and rolled over. Paul probably never knew what happened and never felt any pain after his neck snapped (a “hangman’s fracture” - he was unable to breathe with the injury and suffocated in minutes). I miss them both terribly, even though they both died so many years ago.

       My father and his parents lie nearby. I never knew my grandparents. My grandmother died a few days after giving birth to my uncle; she had already given birth to five children. The family story is that her doctor was a cocaine addict and had used it just before getting word that she was having a difficult labor. He didn’t come for another day; she had been in active labor for several days at that point, non-stop, and it is surprising that the baby was still alive. The doctor delivered my uncle but my grandmother died – whether from blood-loss, exhaustion, heart failure, infection,  or something else – a day or two later. My grandfather sent the baby to a neighbor to raise for a year, and then pulled his only daughter out of school at the age of 13 to raise her baby brother. He also pulled my father out of school at the same age to work on the family farm. My dad became estranged from his father when he married my mom – my grandfather – a German Protestant immigrant - considered it unforgivable that my father had married an Irish Catholic. My grandfather died shortly before I was born. I don’t know if he and my father ever really spoke again, although my grandfather did not disinherit my father.

       My dad died suddenly about fifteen years ago; he was at his vacation home in Maine when he got sick. He had a silent and undiagnosed diverticulum and it suddenly ruptured (the same thing happened to me two years ago). He became septic and needed emergency surgery. During the surgery, his heart went into a rhythm incompatible with life and, although his surgeon finally shocked his heart into a normal rhythm, my dad had suffered irreparable brain damage from the lack of oxygen for the fifteen minutes when his heart wasn't pumping blood properly. We waited a few days to see whether he would wake up (he didn’t), or even start breathing on his own (he didn’t). As a family, we decided to terminate his life support and he died a few hours later.

       Ironically, my dad had had a serious argument with his older brother the previous week, just before my dad left for Maine. My uncle was dying of cancer and wanted to settle the disposition of the family farm, which was held in common by the three living brothers (my dad, my dying uncle, and the “baby” who had lived when their mother died). My uncle was used to getting his own way and, for a change, my father did not want to acquiesce. My uncle said, melodramatically, “You’ll just have to settle this with my heirs!” My dad was incensed and said, “How the hell do you know that you’ll be the first to die?” My uncle had snorted and my dad left. They never spoke again. My uncle was utterly grief-stricken at my dad’s funeral, and he followed my dad a few months later.

       Whenever I visit my dad’s grave, I am also visiting my uncle’s grave. They are interred in an eight-person lot; my grandparents, my uncle and aunt, and my father are all buried there. There is still room for my other uncle, his wife, and for my step-mother to join them (my step-mother died last year but her children have not yet decided to bury her ashes).

       What annoys me is my position in that family. I now have reddish hair (courtesy of Lady Clairol) but I really feel like the red-haired step-child, despite being a blood relation.

       When my parents divorced for the first time, my father did something unforgivable. He was angry at my mother and took it out by accusing her of infidelity. Not only that, but that I (the youngest) must have been the product of “her affair” with our only neighbor’s son. The fact that I have ALWAYS looked frighteningly like my father was irrelevant; he was mad. So mad, he told my uncle, his older brother, that I wasn’t his. And from that moment onward, I was treated like the red-haired stepchild. I didn’t understand until I was a teenager. No one who knew my mother would have believed such nonsense but, as I said, my father was very angry with her for having the audacity to leave him, not once, but twice. The first time, she realized that she had no means of supporting us so she went back to him and back to college, to get a teaching degree. Eight years later and gainfully employed, she left him, this time for good. I was twelve.

       My uncle was the worst. Once my mother came back after the first separation, my dad stopped claiming that I wasn’t his - he had always treated me like I was his favorite child and this didn’t change. My uncle was another story and an ugly one, at that. At the town fair a few months after my parents separated for the last time, I saw my uncle and called a greeting to him. He ignored me. I was puzzled; did he not hear me? I shrugged and played some of the games, then saw him passing by again. A second time, I called out to him. He continued walking and appeared to have not heard me. I thought that he must be going deaf! When he passed by a third time, I walked up to him and said, clearly, ‘Hello Uncle! How are you?” He looked me in the eye, then pivoted and walked away. I was crushed. I was no longer his niece. Only then did my big sister tell me about the terrible thing that my father had said, eight years earlier.

       I saw my uncle a number of times afterwards, always in my father’s presence. I was always polite. He was cordial but I was little more than a stranger to him. I was never invited to any family functions, except the ones that my father hosted. My cousins all married; I wasn’t invited. His children are adults with children of their own and they have hosted a number of “family” reunions. I’ve never been invited, despite living only a few miles away from the old family farm. They don’t know me or my son, yet they are very close to our other cousins.

       Amusingly, one of my uncle’s sons, my cousin, became a local cop. He called the department of anthropology for assistance in identifying some skeletal remains. I was sent to identify the bones. They turned out to consist of the forelimb of a deer, nothing human. He never said anything about our relationship and neither did I. Afterwards, I just chuckled.

       I have another uncle, the “baby” who lived. He has an email list, to send various funny or political items, and I’m on it despite his being a rabid Republican and me being a liberal. We correspond occasionally. I still feel estranged – this uncle has lived in the south for my entire life and I’ve only seen him a few times. In the last few years, he built a vacation home on the property of the family farm, but in that time, I’ve only seen him once. I still feel like I’m the red-haired step-child. Now, I have the red hair, at least!