(NOTE: This is another excerpt from my forthcoming book, IT’S JUST NOT CUTE ANYMORE. If you have not read the preceding chapters yet, please click here for Part One and here for Part Two before continuing. Thanks.)
Fixated interests, fandom, or obsessive compulsive behaviors? It’s a thin grey line even for us neurotypicals. When and how do you approach a celebrity without looking like a lunatic? How many times can you see a show before you become Dr. Gogol from MAD LOVE or the Phantom of the Opera?
When I was a teen, I had the pleasure of accompanying my dad to an event for Frank Capra and sitting at a table with Elizabeth Taylor. Even in the 70’s, when she was not in peak physical shape, she was one of the most beautiful women I had ever seen. Yes, her eyes were really violet. Ms. Taylor was incredibly gracious. She asked questions about my school and made me feel like I was just as important as anyone else at the table. But I was aware that this did not make us friends. No pictures were taken that night. Only the paparazzi carried cameras in those days and I was way too embarrassed to ask for her autograph. I wanted to, but feared my dad’s disapproving glance. Instead, after she had left the table, I swept the sugar packets she had used to put into her coffee into my handbag and kept them for years on my bulletin board. They eventually deteriorated but the memory was preserved forever. I spent a great deal of time thinking about and idolizing great and not-so-great actors, singers and ballet dancers, but my dad was always adamant about me knowing my place. Daddy spent his life indirectly involved in this magical world, but I knew I was as unlikely to be a part of it as I was to become Queen of England.
This did not hold true for my daughter.
Sarah’s lines between fantasy and reality have been blurred her entire life. When her Asperger brain hits on something that could be translated into a social experience that could be shared with peers, I was all over that. So many of our kids fixate on untenable things. Microwaves, copyright dates, the birthdays of presidents, traditional Scottish music, prime numbers… It is so hard to maintain a reciprocal conversation with a young Aspie who only wants to lecture you on the Hawaiian Islands or elevators he has known and loved.
But we fake it, hoping beyond hope that if we show interest in their obsessions, they will then in turn spend a little time trying to make sense out of ours.
Sarah discovered the band Toxic Audio by chance.
I had an old boyfriend who worked as a house manager for the now defunct John Houseman theater on West 42nd St. This came in very handy because if Sarah liked something, once was never enough. Sarah had seen their previous show, “Broadway Kids,” about six times, once with about twenty of her friends for a birthday party. David, aforementioned ex-boyfriend, was extremely generous and we all felt this was an opportunity for her to indulge in an age-appropriate activity. It went well. The young Broadway Kids cast was very welcoming and talked to her after the show. She felt special. Of course, nothing lasts forever. The show finished its run and Sarah returned to almost continual obsessing over the Peanuts characters. One’s life becomes very insulated. David thought it might be a nice treat for us to spend Mother’s Day together and see the latest show at the Houseman.
May 9th 2004 – a day that will live in infamy. Sarah was introduced to a kind of gothy, kind of rockish, a’cappella band called Toxic Audio. They were, in fact, quite amazing and played a myriad of songs Sarah knew well. She liked it enough to want to go again, so we brought my mother who was visiting and a student that had won a date with us at a school auction. A silent switch went off in Sarah’s head that day. A two year obsession with Clay Aiken was out like yesterday’s newspaper and Toxic Audio (especially their young beat-boxer, Paul) was in. And with Sarah, all in meant no holds barred. She wept, she applauded, she screamed at the top of her lungs like teens on the Ed Sullivan show watching Elvis.
She would appear and reappear at the meet and greet after the show, bringing flowers and handmade cookies iced with their name. On Halloween she carved a pumpkin in the shape of their logo which was displayed in the lobby.
At first, the band, and especially Paul, who was married and 15 years her senior, did not know what to make of this child who needed hugs like a junkie needs a fix. It was mildly disconcerting and it wasn’t like she was six any more. She was a teenager with blossoming girl parts. One needed to tread very carefully.
I took it upon myself to write to the band explaining Sarah and Asperger’s Syndrome which was still a relatively unknown neurological disorder outside of the Special Ed community. To my delight and utter astonishment, the entire band embraced her and her life as a super fan began. Their kindness to her was unparalleled. Paul would often thank her from the stage, they were always at the ready to give her that extra attention she craved and once they even made up an impromptu song about her and brought her on stage (I missed that event). For a mother who had seen her child shunned and ridiculed for her eccentricities, I was filled with relief and gratitude that she chose to connect to real people as opposed to cartoon characters, but I did need to keep reminding the band that Sarah had Asperger’s, and was not a Make-A-Wish foundation recipient!
On her thirteenth visit, she became part of their promotional commercial decked out in full Toxic Audio regalia, holding a sign the size of a highway billboard and extolling their virtues. She was so happy. She brought friends to the show (her mother long relegated to drop off and pick ups).
Her room underwent a transformation. Seemingly overnight, Toxic Audio posters, pictures and signed memorabilia adorned every inch of wall space. Even the ceiling sported pictures of Paul. I joked that if, God forbid, Paul ever went missing, CSI would be all over this room and Sarah would be on a very short list of viable suspects. And yet we indulged it. I couldn’t very well go back to these lovely people and say, “Well, you’ve been super nice to my nutty kid for a long time now and her self esteem has been bolstered, but it’s ok if you stop now because mom has had enough and her room looks like the climax of a Law and Order episode.” I held my tongue. I figured it would be yet another phase in Sarah’s saga of phases.
How dead wrong I was.
The inevitable happened. A phone call from David informed me that not only was the show ending, the theater had been sold and the entire block was going to be torn down and made into condos and spanking new theaters. David himself would be out of a job. The latter should have concerned me. I’ve known David nearly my entire adult life, yet my immediate reaction was, “How do I prepare Sarah for this soul crushing disappointment?” There was also guilt that I harbored secret relief. Having your life ruled by the time table of an Off Broadway show was becoming exhausting.
I sat Sarah down and gave her the “all good things must come to an end” speech trying hard to have her focus on how lucky she had been to have seen them so often. I was a huge Joan Jett fan and had only been able to see her live six times in 25 years.
Sarah looked like I just told her I had drowned her basket of kittens. Devastated and inconsolable, she took to her room. I turned on the television after a couple hours to drown out her pitiful sobs. There was nothing I could do to comfort her and I couldn’t fix this, but should I have done more to prevent it?
In the following weeks, Sarah saw the show as much as possible. She was there as the lights dimmed at the Houseman for their final performance.
It was Halloween 2004.
There were tears and promises to keep in touch. They let Sarah leave with many of the 8×10’s that had hung in the lobby. I understood all too well the ache in your heart that accompanies extreme loss, but my words and actions carried no weight. Sarah could accept no comfort from me. She sobbed continuously as if she had just seen her entire family executed before her eyes. People stared on the street. I should have held up a sign saying “I did not cause this!”
Heading back to Queens on the E train, many costumed people offered Sarah candy from their plastic pumpkins, should her grief be caused by a lack of trick or treating. I received more disapproving glances. I felt like the world’s worst parent.
A day or so later, Frank happened to be walking by the theater and saw a construction team dismantling the set. He stepped inside to have a look. Frank could pass as a teamster or a biker in those days. No one questioned his presence. He saw the oversized cork board poster from the front of the theater casually set aside. There was a parade of hefty men hoisting and carrying things out to the trucks and the trash. Frank picked up the poster and walked out to the truck and kept walking. That Toxic Audio poster hangs in her room to this day.
Sarah was still on the fence about Frank back then. Our romance was an irritant and one she was told by others to not hold much stock in, but this kind gesture she acknowledged and appreciated.
The story did not end there.
Her obsession remained unfettered by their absence. Toxic Audio played occasionally on the East Coast. Sometimes it was an accessible venue like Birdland in Manhattan’s theater district, others a grueling three hour ride on a Chinese bus. We no longer had the luxury of an inside man, so it became an expensive venture. The Toxins were kind and threw a comp her way when they could, but there was gas and time and the feeding of us all on these crazy road trips. But the idea of not seeing her beloved Toxins was anathema to her. Again, we indulged her with an “oh it’s just once or twice a year” attitude.
There was not much in Sarah’s life that gave her real pleasure. Her first year of high school proved challenging for a myriad of reasons, I just wanted her happy. Many of her classmates were starting to experiment with drugs and alcohol. This seemed, at the time, a relatively harmless once-in-a-while treat that I could barter for good behavior. She was always grateful, but I did often have to pry her off them with a crowbar. She was always the very last one to leave and the waterworks that ensued could have filled a 20 gallon fish tank. It became hard for Sarah to separate the joy of seeing them with the pain of it being over. When I would bring this up, Sarah would say with complete honesty and without sarcasm, “If you think this is bad, just imagine what I would be like if I couldn’t go!”
Sometime later, we inherited a car.
This helped cement the tenuous relationship between Frank and Sarah as he had no qualms about driving her to East Oatmeal, New Jersey if Toxic Audio happened to be doing a random show in some high school auditorium. Twice, we drove back and forth to Troy, New York, a three hour drive each way, so Sarah could bask in their presence. There is nothing to do in Troy, NY after dark on a weekday, so Frank and I wound up walking the bleak and deserted streets. We never saw another person, but we were looking over our shoulders the whole time. It was not a romantic setting. Looking up at the music hall from the abandoned street corner, we were able to hear the muted tones of the performance. Suddenly, we heard Sarah’s unmistakable cheering above everything else. That girl has an incredible pair of lungs on her! If only we could find a way to harness this power.
Her devotion never wavered. Her college dorm room was plastered with photos and momentos of her years in adoration. Toxic Audio’s fan base grew exponentially due to Sarah exposing everyone she knew to the band’s talents and virtues. A’capella groups were very popular at her college and her loyalty was once again extended to them even though she had not been successful joining any groups. She sang in a chorus and in the Glee Club at school, which would have been torturous for us parental units had it not been for her utter joy in being even a small part of it. On stage, she lit up like a Christmas tree and what she may have lacked in vocal technique she made up for with exuberance.
Sometime, in the year 2011, I quite innocently saw an ad for a show I thought would be a mild distraction for her: Voca People.
The premise was ridiculous. Aliens (in white face) crash land on earth and discover that music gives them the energy to fuel their spaceship. They sang a’capella and had some audience participation. Sarah was immediately intrigued as one of the “Vocas” had understudied for Toxic Audio (just my luck) so there was an immediate connection. She went. She loved it and found to her delight that two of the Vocas had gone to her high school and she had seen them before. Kinship.
She definitely wanted to go again and thought I would love it. So I checked it out. I went with a dear sweet friend who is about as dumb as a bag of rocks and loves everything. He found it cute but nothing to write home about. Personally, I did not get it. Not any of it. Not the insipid humor at an audience member’s expense. Not the obvious plants in the show or the hokey staging.The clown make up made me uncomfortable. So much androgyny, so little character. But I got completely why Sarah identified with it so. The aliens were so confused by the customs of humans yet they tried hard to blend in. Not to get too Freudian about this, but is this what having Asperger’s feels like for her? A stranger in a strange land? Arriving home, I broached the subject with Sarah. “I don’t know, I just like them.” I couldn’t delve much deeper than that.
So she began going. It turned out a good friend of her dad’s was house managing which I saw as a good sign. Surely, he would inform her dad should her presence become an issue. I accompanied her to the show. While I still found the show to be insipid, I reveled in her joy at being there. She was engaged, participatory and enthusiastic. I am too self conscious to even clap out a beat when someone is onstage waving their hands in the air inciting us to do so. Seeing her full immersion in this show was both pleasurable and puzzling but hey, she wasn’t crying about missing Toxic Audio!
Afterwards, I accompanied her to the stage door. I don’t do the stage door thing unless I am waiting for someone I actually know well. The idea of waiting with hoards of people to thrust a piece of paper at them is just embarrassing to me, even though I love the autographs that adorn my walls. For my daughter, however, I will humiliate myself. I once followed actor Constantine Maroulis down the street trying to find an opportune time to ask him to sign something for Sarah. He was on the phone so I was trying to wait patiently at a safe distance until he was available. I felt awkward and creepy. I just didn’t know the socially appropriate perimeters. Finally, eye contact was made. He looked irritated.
“I don’t want to be creepy,” I sputtered.
“Too late,” he retorted.
I persevered. “My daughter saw ‘Rock of Ages’….” He turned on a dime. All smiles and charm as he signed a card for Sarah, shook my hand and said, “Bless you.”
I shudder when I think what he thought of me originally, some crazed cougar doggedly pursuing him for God knows what!
So I let Sarah revel in the stage door experience. What I witnessed this day, though, gave me pause. Everyone that came out seemed to know her by name and hugged her hello. They asked about school. They took pictures of her nails (which characteristically spelled out Voca People), they chatted with me and extolled Sarah’s virtues. They appeared to really like her. Sarah left elated and we chatted on the way home how nice it was that they gave her so much time and attention.
The next time I walked her to the theater, the box office personnel called her by name and asked what number this was. I think she was up to eight. I asked her if this was OK – her coming so much. I belonged to a cheap ticket organization and you really were supposed to wait a couple weeks before revisiting a show.
“It’s fine,” the box office person answered. “It’s Sarah. We love Sarah.” Signs all pointed to yes, so I let it continue. What I figured is that the show was not doing well and they were happy to fill a seat with an exuberant and appreciative patron. Yet I started to have this gnawing feeling in my gut. She often went with friends so I asked them if she was overstepping her bounds. Everyone I asked (OK, three) said that while they didn’t really appreciate the show like she did, it was fun and the cast seemed genuinely glad to see her. None of her friends seemed compelled to see it more than once, though.
Sarah’s dad, who is infinitely less indulgent than me, met Sarah at the stage door one day. Although he felt her money should be spent differently, he too marveled at the friendliness of the cast. When I grilled him, he said the affection seemed mutual and genuine, but he did not get the obsession.
Are we supposed to understand these obsessions that have been a part of Sarah’s life since she could speak? Do we just accept them or should we be trying to extinguish the behavior? Such a slippery slope. If my dad’s obsession with film had been quashed, the birth of film history as we know it would be radically different. My theater group discovered I had sent Sarah alone, without me, the card holder, and cancelled my membership. Trying to explain Sarah’s Asperger’s and the fact that I felt I had a green light from the box office was not an excuse. I was irrevocably excommunicated from the club.
Sarah felt awful. It wasn’t her fault. I had in fact broken the rules. It seemed odd that they waited until Sarah had gone seventeen times….. If they had told me after three to stop, I would have. I am a rule based individual as well as sharing my dad’s English propensity to never be a bother or take advantage. My apologies and explanations failed, so that avenue of pleasure was closed.
Since Sarah had friended the cast on Facebook, one member gave her the Friends and Family discount. That proved to be a hardship on my salary and Sarah’s meager savings from birthdays and Christmas, so she only used that once or twice. Sarah discovered Student Rush and continued to go.
That gnawing feeling in my gut began to grow and fester. I walked around during the day like I had just swallowed a bowling ball. Sarah came back one day, upset because she had been unable to see everyone. The show had since moved to a new space (a theater I refer to as the nursing home for shows on their way out). Management there had told her she couldn’t wait where she had been, but directed her around the corner to another stage door. Trying to get facts out of Sarah in general is like trying to find that lost contact on your marble floor when you can’t see without your contacts. When Sarah is upset, ferreting out information is useless but I keep digging until a door is slammed in my face. Literally and metaphorically.
Next stop was her therapist. We went together and I expressed both my displeasure and fear that her love for the Voca People had crossed a line. Her therapist wondered how Sarah’s behavior was any different from Rentheads (people who saw the play Rent hundreds of times) or people who went to the Rocky Horror Picture Show every Saturday night for years, or the people who followed the Grateful Dead from city to city or Trekkies. I stated that I thought these people were all not quite right in the scone, but I had to admit that Sarah’s fandom was not impacting her life negatively, unless you consider the financial aspect or how much time she spent seeing this show as opposed to accompanying her mother to other more edifying pieces of theater. It seemed I was the only one with the ick factor in my stomach and I had not learned to trust my gut. My gut had been wrong before.
So Sarah left therapy that day feeling validated and confident and I left feeling that a licensed therapist must have a better handle on this than me. I backed off. Sarah continued to frequent the theater, sometimes with me in tow, watching from afar with my suspicious eyes, but mostly on her own. Summer vacation had begun and Sarah had more time to go by the theater. She had hit 31 times. A man in France who claimed to be their number one fan had just hit forty something.
Sarah called me at work to tell me she was having trouble with the Student Rush site and asked if I could help her out. I was having difficulty, too, so I called them up. What I heard next put a lump in my throat and made my stomach lurch.
There was a police report against Sarah. She had been accused of stalking the Voca people and there was a restraining order barring her from the theater. The man I spoke to appeared to calm down when I explained Sarah’s disability and how it manifested itself. I mentioned her relationship with Toxic Audio.
“I remember Sarah,” he commented without anger, “I produced Toxic Audio at the Houseman.”
I thought surely this would resolve the situation and some apologies to the producers and the cast of Voca People would be in order, so I contacted the management via email (after first calling Sarah at her friend’s house to make sure she stayed clear of the theater until this was resolved). Sarah was horrified, ashamed and completely confused. It was August 19th and the show was closing in two weeks.
Heartfelt and apologetic emails from me to the show’s producer were met with abject hostility. I had seen my daughter misunderstood by peers before, but never felt this kind of animosity from an adult. Her dad, her therapist, Frank and I all tried in vain to intervene on her behalf. After all, none of us were told this was a problem and I had been to the theater enough times picking up tickets or picking up Sarah for someone to have spoken to me. As bad as we felt about the situation and as hurt as I was knowing someone could have seen danger when they looked at Sarah, I felt much worse for Sarah herself. I knew she would not recover from this without a lot of help. I asked for closure for Sarah and asked if she could write a letter of apology and thanks to the cast that I would deliver. That would violate the cease and desist order, so that request and any other attempt to resolve the issue was denied.
Sometimes the answer is just No, and now it was my job to explain to Sarah that she could never under any circumstances go by the theater again. I did manage to get the police action suppressed as long as she stayed away from the theater for the remainder of the run, which she did. Two years later, she is still loathe to walk into that building. The incident haunts her to this day and she still breaks down at any mention or thought of the Voca People.
If Sarah had Down’s syndrome, was blind or in a wheelchair, this never would have become an issue. Even with all the information about Asperger’s out there, the TV characters, the HBO movies, Asperger’s Syndrome still remains an invisible disability. There is no definitive way to identify one, yet somehow Aspie’s are always able to identify each other. “They find me,” said Sarah after a girl at school chose her to sit with, out of a hundred others, and began a one-way conversation about subway routes.
It still is a world run by the neurotypucal population and while the number of people diagnosed with autistic spectrum disorder rises each year, the acceptance and tolerance level for these individuals is changing at a much slower pace.
Sarah, of course, has a new area of interest, one shared by many in the Broadway community, but her passion has been clouded by fear. I guess this is a good thing. She now asks if it’s Ok to stand by a stage door, even if there are fifty other people standing around. When she went to see the same actor twice in a month, the hairs stood up on my neck again but this time I brought it up immediately. There were tears, of course, and anger on her part, as she was already second guessing herself about it, but she knew I had to ask, that it is now my job to ask and hers to listen to the neurotypical responses. I am saddened by this.