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August 09, 2005
Preaching to the Choir
I have been asked some questions based on my previous ASD posts. Little by little, I will post more “back story” with respect to the Cat’s situation.
I won’t bore the Internet with the detail in the number of steps it has taken to get appointments at my HMO to address the Cat’s behavioral difficulties. But it has been two pediatricians, two medical social workers, and then finally a case worker. We were referred to incorrect places (adult psychiatry?) and more than one person simply did nothing. And in a world where one must be referred to the proper place, a dead paper trail was problematic.
We fought hard. And finally got an appointment that seemed like it would provide The Golden Answer: an evaluation at an Autistic Disorders Clinic! I was told by the referee that the clinic was supportive of all different approaches (she knew I was using the Feingold Diet). She said they used a multidisciplinary approach to treatment. That resonated well with me! Classes, support groups, individual and group therapy! It all sounded like exactly the right place for the Cat.
I first had to fill out a large pile of paperwork. Once that was approved, I was to have a phone interview. I dropped the Cat off at preschool and started walking Spliggle in the Baby Bjorn in an area with good cell phone coverage. I was ready to go. But the doctor didn’t call.
Perplexed, I called the clinic about an hour later and told them I hadn’t received the call. I didn’t want to wait another several weeks to be screened. Luckily, they had an opening with another doctor, but on a day when the Cat was not in preschool.
Thankfully, locking myself in my bedroom worked. Usually, there are pounds and protests at the door. The interviewing physician was wonderful, and seemed to respect my decision to try diet modification. I was encouraged and hopeful about the in-person appointment.
When we arrived at the clinic, we were told that the physician who had interviewed me was out ill, so the doctor that had neglected to call me originally would be filling in.
Three hours of “tests” for the Cat and questions for me. The in-person parental interview was supposed to be for both parents, but the Cat was having so much difficulty following instructions in the testing room that Husband went to be with him. I was left in the parental interview with the condescending, neglectful, rude doctor.
He told me the Feingold Diet was a bunch of hogwash and implied that people who believed it were stupid. He emphasized that unless we treated my son now, he would grow up to be a criminal and on drugs. He asked me questions about my personal history (I realize to link any genetic patterns), but they were demeaning. When I admitted (and it was an “admission” rather than just a piece of information, given how he was questioning) that I had ADHD tendencies as a child, he began to speak even more slowly to me than he had before. He asked about my treatment (Feingold Diet) and then asked me if I was “able to attend college.” I simply told him that yes, I had attended college. I don’t like to toot my own horn. “So was it a community college?” “Did you graduate?” he sneered.
Now, community colleges are wonderful, and I don’t want to slight people who have attended them, but for him to automatically assume that was the limit of my capability was insulting. I responded with the name of my Ivy League alma mater. But I neglected to tell him that I had also attended an Ivy League medical school (for a PhD program, not an MD) since I felt so condescended, small, and useless that it would have actually been an admission of stupidity to announce that I had gone to medical school and yet was unable to hold my own against this doctor. He didn’t bother asking what I did after the four-year college. I imagine he assumed I got pregnant. (Again, not that there is anything wrong with that, especially since that is exactly what I did after graduate school!)
He told me that “obviously” we would have to medicate the Cat because otherwise he wouldn’t be able to function in society. He would live at home forever. He would get into legal trouble. He would be angry and unloving. As the horrible scenarios poured from the doctor’s mouth, I grew even angrier. He hadn’t met the Cat yet. How could he suggest medication without seeing the patient? Did he not understand any of my reservations about medication? Did he recognize that I was concerned about the Cat’s behavior; that is why I was there – so why spew forth fatalistic futures?
The preaching to the choir had been a common theme in the attempts to get appointments, “You really need to get him checked out, or else.” Well, that is precisely why I am jumping through all these hoops! Yippee!
When Defeatist Doctor actually met the Cat and gave him some tests, he patterned his responses after what would produce the most negative result. So if the Cat didn’t attend to something, it was “He can’t pay attention!” But then if the Cat was interested in something, it was “He is overly fixated!”
The truth is that the Cat does have times of hyper-vigilance and times of inattentiveness, but there is a pattern. The tests the doctors gave didn’t take into consideration cues. It was an all-or-nothing scenario.
The “other doctor” doing the tests was fine. She was patient. She addressed the Cat with as much respect as one can for a 3.5 year old. She seemed bright, but was frequently cut off mid-sentence by Evil Doctor Boy.
When they announced their diagnosis of PDD-NOS, they both sadly told us that the Cat was way, way below average on just about everything. When they talked about medication, Nice Doctor said, “Well, some people take their children off medication on the weekends,” and Shithead Doctor immediately jumped in, “That is not relevant in this case! This is an EXTREME case! He must be medicated always!”
They told me to contact the mental health clinic closer to our house for treatment. The treatment, support groups, and classes that my pediatrician had mentioned were all a myth. The ASD Clinic was for evaluation purposes only!
So that is when we jumped into the shuffle-game again: back to mental health, to a medical social worker, to a case worker, briefly to a psychiatrist who wanted to give the Cat medicine, but then back to the case worker when I decided to wait on the drugs. And that is where we stand. No support groups. No treatment programs. No classes. Just “checking in” with a case worker every month to report on our “progress.”
A few notes:
1) I am not against medication in psychiatric cases. I’ve been on antidepressants before. I have a cousin whose life was saved by a variety of psychiatric medications. I have seen medication work miracles. But for a 4 year old child, using medications that haven’t been tested on children (and which have actually been admitted to cause suicidal tendancies in minors, such that I know someone who lost a teenaged relative to such a reaction), I am hesitant. I may medicate the Cat at some point. I may not. But I am looking at all options. I don’t think it is right to just “medicate and forget.” (as I mention in my little summary of beliefs regarding this)
2) Evil-Ick-Stupid-PoopyHead Doctor is no longer at the ASD Clinic. (He went into private practice. shudder.) Apparently, there had been other complaints about him. The people who remain are those with whom I had positive interaction. I think the clinic is a good start. I really think they should not just evaluate – but also have the classes, support groups, and other resources available to parents and children that I expected from them.
Posted by karianna at August 9, 2005 04:27 PM
Comments
hey, help a girl out with the acronyms. what is PDD-NOS? and i am interested in your life history, regarding grad school, marriage, pregnancy. get to that too eh? :-)
Posted by: jenB at August 10, 2005 11:08 PM
Oh. PDD is "pervasive developmental disorder" then NOS means "not otherwise specified," which means they are clueless about how best to categorize him.
Here is a "formal" description:
This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes atypical autism --- presentations that do not meet the criteria for Autistic Disorder because of late age of onset, atypical symptomatology, or subthreshold symptomatology, or all of these.
My guess is that if he took the test today, he might be categorized more in the "Asperger's" realm, or maybe not. I don't know.
One description of Asperger's is:
Symptoms of Asperger’s include: impaired ability to utilize social cues such as body language, irony, or other “subtext” of communication; restricted eye contact and socialization; limited range of encyclopedic interests; perseverative, odd behaviors; didactic, verbose, monotone, droning voice; “concrete” thinking; over-sensitivity to certain stimuli; and unusual movements.
Official DSM-IV criteria are similar to that for Autistic Disorder except do not include the “communication” problem areas: in other words, autistic people who talk well. [Many experts would argue that although verbal speech is preserved in Asperger’s, other communication problems certainly exist.]
Definitions from www.pediatricneurology.com
(More stuff about me to come. I promise!)
Posted by: Kari at August 11, 2005 09:15 AM
Wow, Kari, I had no idea what you've been going through with The Cat. I hope one of the avenues you've been pursuing works out. I'm glad that pigheaded doctor is gone. Keep up your food experiments - you're better trained for that than anyone.
Posted by: Jen at August 24, 2005 06:19 PM