Letter to the neuropsychologist (long)
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| Sun, 04-15-2007 - 1:54pm |
Dear board friends,
I had my kindergartener evaluated by a neurolpsychologist, and the man really had me near tears with his arrogant and rude comments. I chose him because he was the person who was most strongly recommended by a lawyer that I had retained. (I chose the lawyer because he struck me as very parent-friendly and he professed to work in a way that I could continue on my own and be a more sucessful self-advocate; he would not "hoard" his work or make himself indispensible. Then I chose this neuropsych because he was the name of the three independent evaluators that the lawyer highlighted the most. My thinking was that I should not break up an apparently good team. I really should have interviewed the evaluators first. Live and learn.)
When he saw my child, he did not find asperger's or autism, which is okay, but he made it sound like I should hang myself if my child does have autism, which is not okay with me, and he basically said that hand-flapping was the diagnostic acid test for ASD's. He made it sound like my son's symptoms could be parented away, which is infuriating. He said a lot of very condescending things such as inviting me to check the DSM-IV as if that were a privilege.
Later, I learned that my family's social worker, who has elementary aged ASD kids, also saw the same evaluator, also came to him through the same lawyer, and had a very similar experience, except the child in question did meet the criteria for ASD in this man's eyes, and she said that entirely was no help for planning his elementary education, but instead found it his place to get her out of his percieved denial on her part that her child would need help his whole life, and to critisize her husband for not coming to the 2nd parent interview when he was at home with their young ASD kids. My social worker said that he left her feeling hopeless about her son for the first (and last) time in her life.
I can't sit by idly, and I feel like I need to get it off my chest what a cad he is, and I don't just mean at a parents' support group or here. I feel like I need to tell the neuropsych and CC: the lawyer. Maybe this is a huge mistake. But I really want to do it. Ihave gotten this far on my draft of a letter. If you have good glasses and the patience to read all of this, please check it out and let me know what you think. I'm open to all kinds of feedback, from spelling and use of Capitalization, to rethinking the whole sending a letter idea. I plan on double checking the tone after sleeping on it. I don't want to make it an attack letter.
Here it is:
Dear Doctor:
Thank you very much for consulting with my son, XXXXXXX. You saw him very quickly after I contacted you, consistent with your claim to provide timely evaluations. You have provided my husband and me with far more detailed information about our little boy’s learning strengths and weaknesses than we have ever had; previous evaluations have always come up with average scores, but XXXXXXX really is more complicated than that. Never before has he had such sensitive assessments comparing aspects such as copying geometric line forms and motor planning, which really breaks down the areas that may be contributing to XXXXXX’s successes and challenges, which both truly puzzle me at times.
Yet overall, my experience with the whole process of getting XXXXXXX evaluated by you was disappointing. I know that when a person is unhappy with me, I would like to hear about it. I have no idea if you also like to hear about it when someone is dissatisfied in their interactions with you, or if you have any interest in hearing about my experience in particular. Certainly, you have the option to read this letter or not, and, if you do read it, you can take from it whatever you want. So, if you continue, this is why I am dissatisfied:
I do not think that you live up to your claim to be family friendly at all. I don’t think you even rise to the level of family-respectful. I would not be surprised if the vast majority of the families you work with are struggling with their children, mourning who they are not, cherishing who they are, and trying to gather the best information and make the best possible decisions for them. Parents alone are the constant in their children’s lives. Classrooms, IEP’s therapists, and evaluators like you come and go. Only parents truly have the long term in mind, and only parents have knowledge of the day-in day-out nitty-gritty of their children. Parents have to live with the decisions that they have made, and it is rare that decisions that parents use the results of a neuropsychological evaluation for are no-brainers. In general, they are complicated decisions with deep advantages and disadvantages.
For example, when you met me, you learned that XXXXXXX’s special education classification was as a child with autism, and you immediately questioned it, before even meeting my son or reading anything about him. I told you that I felt that it was the best fit of the educational categories. I was (am) fully open to different opinions from you or others, but you should have noted that I was comfortable with the word to describe my son. In addition, I reported without discomfort that both of my children had been diagnosed with ASD. Now, I do not have your training, but I imagine that you do learn a bit about people and their feelings when preparing to work in your field. Therefore, it surprises me that you would later characterize autism as if it were so terrible that I should just give up hope if my son(s) had it. My sons do have it. Remember, I am a parent whose journey with her children did not begin the minute I met you. And you are not the only person who has ever evaluated or experienced my child, and certainly will not be the last. It is arrogant for you to think that my entire framework for thinking about my child would change on your words, even before seeing your report, and it is insensitive for you to speak so disparagingly about the framework you know I use.
Now, after you told me that my son does not have something so “terrible” or “debilitating” or “life-long” as any ASD, you told me verbally that you consider my XXXXXXX to be a child with weaknesses in language processing skills, mental flexibility and set-shifting, and with a variable ability to regulate his attention. You found him to have significant social skill deficits and “idiosyncrasies” in his behavior and relating. You also found him to be a child with a weakness in his gross motor skills and his motor planning skills.
It took me a lot to control my hurt feelings for how you were characterizing my two sons’ diagnoses, and to focus on what matters: Where XXXXXX’s strengths and weaknesses lie, and how best to cope with that. Reflecting on your words, I realized that your findings were very much why I think that the diagnosis of Asperger’s Syndrome is a good fit. During that last interview, I also recalled your instant questioning of his educational category, and began to develop a respectful hypothesis that you think that autism should be diagnosed only for much more serious versions of what my son has. I intuited that you were not comfortable with calling anything that does not rise to the level of requiring institutionalization “autism,” and I agree that my child does not need to be institutionalized. So, working with my hypotheses about your point of view, I groped for common ground. I said that it doesn’t matter what we call “it,” as long as we’re doing the right thing for “it.” You completely rejected that attempt by inflexibly stating that it does matter what it is called, and it is not called autism, and you implied that your judgment, after a few sessions with my child, is irrefutable.
Stunned, I just repeated back that you consider my child to have social deficits, language processing deficits and attentional issues. You tried to clarify that XXXXXX does not have autism because he does not have stereoytypies, and you gave hand-flapping as an example (which XXXXX does not do.) I guess some of what I call “stims,” you call “idiosyncracies.” But I think XXXXX does have a stereotypic behavior, and I suggested that XXXXXXX’s need to touch our skin, put his hands up shirts, and go for nipples might be a stereotypic behavior. You proceeded to say something unbelievably insensitive. You said, “You just need to be more firm with him.” Now, Dr. D., don’t you think that if being more firm with him would help, my husband and I would have discovered that by now? You know even less about our parenting than you do about XXXXX.
Then, you had the nerve to tell me that you were following the criteria in the DSM-IV, and you invited me to check it, as if I need your permission to read a book. And I wonder if you just assumed that I had no idea what was in it and would not check, or if you yourself are unfamiliar with the exact text, because one does not need to hand-flap to meet DSM-IV criteria for the diagnosis. One does not even need to have a tactile skin-touching thing like my son. You made the very arrogant remark, “Doctors…” (Who are apparently very different from the rest of us?) “Do not do that.” You were referring to contradicting the very book you either misread or have inflexibly interpreted. In addition, you incorrectly cited the DSM-IV as the reason that you could not diagnose a child as socially connected as XXXXXXX with Asperger’s; there are no such criteria even mentioned. That is your opinion and interpretation.
I am not saying at all that this changes how you should express your clinical impressions, or how you understand the DSM-IV criteria, and it certainly does not mean that you should use any ASD word to describe my son if that is not how you would describe “it.” I understand that you need so much training to do your job because you have to make judgment calls that are not straightforward. If being a “Doctor” were as simple you arrogantly described it, when what is right is right and what is wrong is wrong, anyone could be trained to do it. You are making sophisticated calls, and you should take credit for that with a few simple words like, “In my opinion…” rather than denying it with, “Doctors don’t do that.”
If you want the buy-in of the parents you meet, you should consider the fact that you are just a blip on a huge field of labels and diagnoses, most of which came before you and will come after you. You should consider that other reasonable people may look at the same child and use the same diagnostic guidelines, and come up with different diagnosis’s than you and be just as right as you are. And you should consider that the only people with the true longitudinal knowledge and long-term interest in children are the parents. If you want your “blip” to really stand out, I think that you should consider how your impressions fit in with the parents’ experience of where they are, and where they are going.
If you have read this far, I must say that that was very thoughtful of you. You have the opportunity to help so many children get appropriate interventions. I think that you will reach more of them if you do not alienate their longest term, most experienced, and most motivated advocates, their parents.
Sincerely,
Sidney
So, whadahyah think, board-people?
Sidney


WOW, Standing Ovation over hear. Really, that was great. Mind if I borrow parts of it to send to that idiot doc from Stanford???? LOL
I guess you had a similar situation as I did :(.
Sidney,
I am very impressed at the way you kept a respectful, intelligent tone throughout the letter.