Recently we took Stephen for a long-awaited, much anticipated appointment with the developmental pediatrician at the Sparks Clinic. I literally filled out the paperwork for this visit a year ago. As I'd told anyone who would listen from the time we first set foot in Sparks, we certainly had no doubts about Stephen's diagnosis, but we wanted an update about where he falls on the spectrum after 7 years. We've been to Sparks three times now, each time putting Stephen through tests and jumping through their hoops so that we could ultimately get to the autism clinic, and, hopefully, get more clarification about his autism and if there might be an identifiable genetic cause.The plan for the day was as follows: David and I would talk to the psychologist while another team did the ADOS (Autism Diagnostic Observation Schedule) with Stephen. Then, we'd meet with the nurse practitioner and the pediatrician. So after some cajoling from the diagnostic team, Stephen went with them (carrying his trains, books, and his bag) and David and I went with the psychologist to answer questions about Stephen's development for the umpteenth time. An hour later, we went back to the waiting area to see that Stephen had been left there with his books and trains, and the nurse practitioner was "keeping an eye" on him. The woman obviously had super-duper powers of observation and possibly x-ray vision, because she was seated behind a reception desk without a clear view of Stephen on the floor. The door to the hallway which led to several exit doors was wide open. As we were recovering from that bit of shock and were talking to Stephen as he sat on the floor, David discovered that he was wet and had leaked through his clothes. Lovely. Upon further investigation, I noticed a familiar odor. Stephen had pooped and was sitting there, soaking wet and, by that time, filthy. The "team" was in possession of his bag containing pull-ups and wipes the whole time.Burning with anger and humiliation for our little boy, left basically unattended and in his own filth, we managed to get him into an exam room (he is very leery of doctor's-office-type rooms). We struggled to get him to lie down on the floor and we undressed him. He had been sitting for so long that he was covered in poop. Luckily I'd brought another outfit for him. We were furious to see him in this position - he was wide-eyed with fear and clearly miserable to be in this unfamiliar situation. The clinic staff, including the pediatrician herself, watched from the doorway of the exam room as we worked to clean him up. All six of them stared, unable to look away, transfixed with some sort of fascination, like commuters passing a car accident. There were no offers of help, no apologies...one of them bleated, "Oh, gosh! We had no idea he needed changing! We didn't smell anything, really!" Uh-huh. With our son's BMs, you'd have to have a defective nose not to notice them. We asked for a plastic bag for his clothes and his dirty pull-up, and the staff scattered. We waited and waited, trying to keep Stephen calm, and finally someone shoved a garbage bag into David's hands. The pediatrician stood in the hall as I wiped Stephen off, trying to clean him as best I could. She watched as I finally got him presentable and dressed in clean clothes. Then, she suggested we move into another room that had a sofa, where Stephen might feel more comfortable.We moved across the hall and sat down. The doctor began to ask us the SAME questions we'd answered multiple times before - basic history that I'd spent hours filling in on forms a year prior to this appointment. There was a rather zombie-like student or assistant or observer who sat in a chair by the door, struggling to stay awake. She was never introduced to us, nor did she ever utter a word. David and I kept exchanging glances, both of us puzzled by "experts" acting like they'd never seen a child like Stephen before in their lives. I could hardly focus on her repetitive questions - my brain was swirling...HOW could they leave him that way? are they thinking at ALL? this IS the autism clinic?...Finally the doctor said, "Okay then. Let's get him undressed blah blah blah..." The rest of whatever she said trailed off into nothingness as David and I simultaneously thought, "Oh SHIT..." I made a move to take Stephen's shirt off, and he would have none of it. WHY didn't the doctor examine him earlier, when he was stark naked in the other room? She stood in the doorway watching, not saying a word, when she KNEW she was going to want him undressed later. We didn't know that or I guess we would've said something at the time. The point is, why didn't SHE say that? This experienced developmental pediatrician didn't take advantage of an obvious opportunity? After we struggled with Stephen, again, with no offers of help or suggestions from the staff, David finally said to the doctor: "What do you need? Tell me what you need to do with him so that we can prepare..."The doctor: "Well, I need to examine him."Finally David stated the obvious. "Why didn't you take a look at him in the room before, when he was already undressed?""Well...erm...we hadn't even started then. I hadn't done the history," and she came toward Stephen saying, "Okay, here...want to see the stethoscope? Just sit down."Oh, she's an expert all right.David asked her just how much experience she had with kids like Stephen. "Oh, lots..."Sure. Of course she does. Finally we asked the staff to leave so we could talk. Both of us agreed that this was an exercise in futility and that getting any meaningful results was a laughable prospect. We called the doctor back in and told her we were leaving.She smiled idiotically, "Well, okay then. But I can't order any tests when I haven't examined him." I said that we would have our own pediatrician look into ordering them. As the doctor and her silent assistant backed out the door, she continued to smile her empty smile, "Well, all right then...we'll see you later..."The "team" of psychologists came back in to discuss their findings, and told us things we've known for years. One of them took a long time telling us how we should focus on Stephen's need for visual supports and that someday he might well be able to work in a restaurant sorting silverware or some such thing. While we both want him to do as well as he can in his life, it's a bit of a stretch to go down that road right now. We don't want to be patted on the head and given "stories of hope and journeys toward healing" - we want to find out what caused his autism if we can, and we want real-world ways of dealing with problems. The time will come later to find out what he's capable of in the future. Finally, we asked the one psychologist that we've come to respect and trust to stay behind, and we told her plainly what a disappointment the day had been. We outlined the absurdities and humiliations our son was subjected to, and our anger about the mismanagement of our time. She admitted that the system had problems, and intimated that most children who come through the autism clinic are much younger than Stephen, and many of them aren't diagnosed yet. She also said that many parents they see aren't as "savvy" (read: they are ignorant) about autism and that the repeated asking of the same questions serves to pull information out of people who are unable to give a coherent and cogent history of their child. The fact that we ARE that involved should have made the jobs of these clinicians that much easier---we had an abundance of information about Stephen and were clearly educated and informed. Once the team saw that we were in fact not the uneducated parents they claim are the norm, they could and should have changed their approach so as to make the very most of our time and our knowledge of Stephen's autism. I told her that they needed to have a different set of protocols in place for kids like Stephen if they're going to agree to see them - mainly, building in flexibility, and knowing that you can't always follow the SOP. She agreed to pass on our complaints and seemed genuinely sorry we'd had such a dismal day. We decided to forego the meeting with the nutritionist who had already passed on her "helpful" suggestions of "getting Stephen to eat more nutritious foods," a bit of brilliance that had never occurred to me...The kind of blatant ignorance (for there can be no other description) of the staff at this "autism clinic" is disheartening at best and disgusting at worst. To have so little care and sympathy for a child like ours - to leave him alone in his own excrement, to put him through a series of unnecessary and redundant tests, to put US through endless and repetitive question/answer sessions and filling out of ridiculous questionnaires ("Does your child seem embarrassed when other children make fun of him?" Give me a BREAK) only serves to make families like ours feel more and more hopeless and isolated. I began writing this entry only a few days after the incident, and I was feeling very bitter and angry at the medical world in general - in fact, I titled this entry "The Blunders of Modern Medicine," and felt very clever and self-righteous indeed. After David read this, he rightly pointed out that this is OUR experience and (we hope) an extreme case of ignorance on the part of the staff at this clinic - ignorance in dealing with low-functioning kids and their families. Now, a couple of weeks later, I'm feeling decidedly less vitriolic and yet still fully aware of the disappointment of waiting a year for this appointment only to leave the building feeling that the whole thing was a colossal waste of time. I spoke with someone who did clinicals at Sparks and then actually worked there back in the late 70's, and he was shocked to hear of our experiences. He outlined that in his current role as an educator he teaches clinicians to gauge the family involvement, to check on how the parents are doing when a child is being tested, and to generally strive to put families at ease - actually making it a point to put the child's needs first. I only wish that was the philosophy of the Sparks clinic, as it seems to me that this kind of philosophy would be the only caring and sympathetic way to deal with kids and families affected by autism. I still plan to write a letter to the director of the clinic because this kind of neglect and wrongness can't go unmentioned. Whether it will do any good or bring about any changes, I have no idea.
David and I are beginning to suspect that our future as a family lies somewhere outside the geographical bounds of this state. While we couldn't be happier with Stephen's school year situation, as he grows and changes we need more in-depth involvement from medical professionals and therapists, and based on our experiences lately, we'd better expand our search if we want to find the help we need.
For now we will keep doing what we're doing - sending him to the best school we can, providing as much structure as we can, and working with our pediatrician to obtain some possible genetic testing. But we are still very much on our own. Doing the research, asking the questions that should be asked by the doctors themselves, and navigating through the labyrinth. For all the recent exposure autism has gotten, and the possibilities that research may uncover, many families are in the position of doing much of the work on their own. Life is tiring enough without this added burden, but unless we are willing to sacrifice our child and our sanity, there is no other choice.
