Posts Tagged ‘Autistics Speaking Day’

November 1, 2011, was Autistics Speaking Day, and I had planned to write this then, but it didn’t work out that day. So here it is, my late contribution to Autistics Speaking Day, a piece on the lack of knowledge in the behavioral health field when it comes to autism, ASD,and chronic pain patients. Lately, I have been wondering if I should change the name of my blog to Autism, Angels, and IC. For newcomers, IC is Interstitial Cystitis, a severely debilitating and painful bladder disease that is considered a disability due to the huge impact it has on a person’s life. It seems like the three have begun to meld together into an inseparable story. But then I would have to change the name of the book as well, and I’m not sure I want to do that. I’ll have to think about that one. I think it would make for a much longer book, maybe even drag it into a second book.
Aside from that, I decided to share this part of my story because I think it’s important for people to know exactly how messed up our “behavioral health system” is. During my last rant, describing the overreaction of my IC specialist/surgeon, I’m sure I mentioned that she had decided that I could not get the surgery I needed, or even come into the office for bladder treatments, until I was under the care of a psychiatrist.
At the time, I had to call Magellan (the behavioral health division of my health insurance) for a listing of doctors who were accepting patients. Over the past 3 months, I had made numerous phone calls, only to be told that no one was accepting patients. I was even hung up on by one office receptionist, after disclosing my chronic pain and AS issues, with a curt, “I’m sorry, you would not make a good fit for this office.” Not even so much as a reference to doctors she thought might be able to help me. Finally, as I worked my way through the useless list, I came to a name I couldn’t even pronounce. I called the number. “Yes, we’re accepting patients,” the receptionist said. There were appointments open the following week. That alone should have been my warning. No waiting period to get in usually indicates a doctor who isn’t very popular, im my opinion. She set me up with an appointment with Dr. Manny. “Dr. Manny,” I thought. That sounded harmless. Like a compassionate, friendly guy. “Dr. Manny has to be nice,” I convinced myself, kicking my thoughts of doubt aside.
The day of the appointment, it rained of course, in my mind, a bad omen. Yeah, I’m funny that way, I perceive signs everywhere I go. I sat in the car nervously before going into the building for my appointment, deep breathing, as my physical therapist had taught me, to calm myself. Finally, I stepped out into the rain and hustled to the door.
I checked in, gave them my cards, and was surprised that there was no paperwork for me to fill out. Nothing questioning my background and experiences, or current drug therapies, nothing to provide the doctor with information about me. “Odd,” I thought. I sat down in the waiting room, thinking about how unfriendly it was to someone on the autism spectrum. There were huge, killer blinding fluorescents above me, flickering, I might add, a nice sized TV blaring some teenage soap opera, in the background a music station playing oldies, and then the receptionist answering and yakking on the phone. A child came out with one doctor, obviously on the spectrum, to get picked up by his parents. I listened as the doctor chatted about the boys progress in recognizing and expressing feelings. I smiled at the boy’s progress, but again looked around me and saw how unfriendly this environment was to people with sensory problems. My anxiety upped as I sat there, which triggered the old bladder to start to spasm. I ran to the restroom several times, trying to get it together, doing the deep breathing again. I heard my name called while I was in the restroom, so I hurried to get myself together. When I came out, the receptionist pointed to a door. “You may see Dr. Manny now,” she said.
I headed into the room, and sat in the chair closest to the doctor’s desk. I’m not even sure if there were any introductions. I began to tell him why I was there. The whole deal – specialist wants me under the care of a psychiatrist to manage my drugs, wants me to be cleared by doctor before resuming treatments or surgery. A week before, I had called my specialist, and asked her to fax over something stating exactly what she needed and expected. To my surprise, he looked at me blankly.
“Did you not receive anything from my doctor?” I asked.
“No,” he said,”nor can I clear you for surgery. The most I can do is show them a treatment plan.”
I explained that I would not be able to receive needed treatment for my diseased bladder and pelvic floor until I had something from a psychiatrist. He asked me for her number, and dialed the phone. Once he got my nurse practitioner on the phone, after a testy, “No, I cannot wait on hold,” to the office reception, he asked if he could put her on speakerphone. She declined of course. They were talking about what was needed. And, just as I suspected, the subject led to autism, since my surgeon and NP are scared to death of me and my FRIGHTENING AUTISM. Interestingly, after 10 minutes of having met this man, while on the phone, he looked at me. “No, she’s not Autistic, I can tell by looking at her eyes,” he said to her. What??? I was dumbfounded!! Yeah, I know my NT mask makes it really difficult to pick up on my autistic tendencies, and you really have to be around me a lot to even pick up on those tendencies. And as for eyes, I had taught myself the art of eye contact starting when I was 27 years old. Before that, I rarely had made eye contact.
I couldn’t help myself. I stated loudly, “I have a diagnosis of Asperger’s Syndrome.”
He looked at me, irritated at my interruption, “By who?,” he snapped.
“Dr. Mary Cohen,” I replied. Mary Cohen – top researcher at the University of Pennsylvania, specialty is diagnosing adult women on the spectrum, and an author of two books on the subject. A woman I really admire. She had put me through 4 hours of diagnostic testing and interviewing. In addition, she had interviewed my mother, and collected all of my developmental history.
“What is she?,” he snapped again.
“A neuropsychologist,” I said, imagining that just HAD to shut him up.
He scoffed, kind of snickered, and rolled his eyes mumbling,”They can’t diagnose autism.”
I sat there in disbelief, wondering what in hell I had gotten myself into. This man was so arrogant and rude, I couldn’t even understand why.
When he got off the phone, he went into some tirade, about being, “Board certified in Autism.” My pissed off side wanted to stand up and say, “Tough shit – I’m not impressed, my specialty is being someone who has Asperger’s Syndrome!” But I didn’t, thinking I was trapped in this situation. Afraid that I wouldn’t get treatments without this creep of a man treating me for depression.
Next he started on the interview, visibly determined to disprove my AS diagnosis. The first questions were predictably related to bi-polar disorder, which I don’t fit at all. When he asked me if I had ever had any “energetic periods,” I laughed and joked, “I wish, then I might get something done.” He didn’t even blink at my attempt to joke around. Next he wandered into severely autistic questions. Duh. I’m obviously high-functioning if I’m sitting in front of you trying to get the help I need. None of the questions were relative to someone with Asperger’s. Then, he moved into darker territory. The questions were aimed at personality disorder, most likely borderline. The same thing I was misdiagnosed with when I was 15 years old. But to his disappointment, my relationships with my family and friends did not point to borderline personality disorder. I sensed his irritation.
At this point, I was pissed. It was time for his interview. After all, the psychiatrist-patient relationship, should be one based on respect and knowledge.
“Do you know what IC is?” I asked him.
“Kidney problems,” he said.
Ehhhhhhhhh! Wrong! Bad doctor! I informed him that it was a painful bladder disease, with no cure. He had nothing to say, except, “Well, it’s in the kidney area.” What a dumbass – the pelvic area is the main problem, not the kidneys.
Next,”How much experience do you have treating someone with chronic pain?” This is important, considering that most people with chronic pain have depression issues.
He then went into a rant, over how he didn’t have any prior experience with chronic pain patients. It was a strange, unusual response. I was thinking, “No way can Dr. Arrogant treat me. He doesn’t even know what IC is, he denied my AS diagnosis without any testing, and he has no experience with people in chronic pain.” Did I mention that this man’s specialty in Autism was in children?
But I was in a hard place. I had to have a psychiatrist in order to get my treatments and surgery. To find another would take more time.
“Well what do you want to do?” he mumbled.
“I don’t have a choice right now,” I said, “I have to be treated.” I was silently crying at this point, tears streaming slowly down my face.
He mumbled that he would need to speak to 3 of my treating doctors to develop a treatment plan. After he had contacted all of them, he said he would call me.
When I left, I let the tears flow. Within one hour, I had been stripped of the tiny, fragile bit of dignity that I still had, my identity had been questioned and reassessed, and none of my real issues had been addressed. You know – that whole chronic pain and depression thing.
My previous post, about the medical community’s treatment of people with AS, had left me with quite a few messages in my inbox. All of them encouraging me to get out of the situation, and find a new doctor. I started thinking about this. “I’m better than this.” I thought. “Screw Dr. Know It All and Dr. Arrogant. They can make me wait as long as they want – I’m finding a GOOD psychiatrist!”
In the meantime, I gave Dr. Arrogant a week to contact my other doctors. To no surprise, he did not follow through on his promise. Luckily for me, I had gotten an appointment with a psychiatrist who had experience treating IC patients. Wow! A psych who knew what IC and chronic pain was! Amazing thought.
By writing this, I just wanted to show people how unreliable and how bad our behavioral health system can be. For someone who claimed to be Board certified in autism, and yet not know how an adult with Asperger’s would present, especially someone high functioning, doesn’t leave me with much faith in the behavioral health system. The number of phone calls I had to make in order to find someone accepting patients, the lack of understanding of chronic pain, depression, and autism spectrum disorders. I find this sad, and a bad example of the FAILURE of our behavioral health system to help those in need, when they need help. I also find it insane that a psychiatrist would act in such a rude, arrogant, and holier than thou manner. If this is an example of the majority of those working in the behavioral health field, it’s no wonder that so many people have difficulties obtaining the correct diagnosis for their children, and seniors, let’s not forget seniors. It’s no wonder families have so many difficulties developing IEPs for their kids, and getting the right kinds of treatment.
So I will continue to spread awareness of autism, ASDs, interstitial cystitis, chronic pain, and depression. Maybe someday, the behavioral health community will get it right. I can only hope.

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