An autism thread that's not about vaccines

Parent Cafe
21

<p>The problem is, the pendulum has swung Waaaaaaaay too far in the wrong direction, and we pathologize everyone, for even behavior that was normal a decade ago.</p>

<p>There is nothing wrong with being quirky, or geeky, or even different. There is nothing wrong with being sad once in a while, or a little worried or anxious, or bouncy and occasionally inattentive, or even one who has to take time to do things. These are not necessarily “disorders”.</p>

<p>The problem with overlabeling and overpathologizing, is that all of these kids then think there is something very wrong with them that they need so much testing, therapies, extra help, extra time, extra everything. And sometimes there really are very real things wrong, and the overpathologized kids get mixed in with those with real issues, to everyone’s detriment.</p>

<p>And yes, in the midst of all this are millions and millions of dollars spent to educate these children, while the regular education students have their budgets slashed. No wonder there is the rush to diagnose…it’s the only way kids can get a proper education, I guess.</p>

22

<p>On the other hand, I’m almost sure I have an attention deficit. I never needed extra help from my school because I had it from my parents. They didn’t expect us to work and viewed our schoolwork as our childhood career. I could not possibly have worked and done ok in the classroom even though I’m bright. I can only handle so much as an adult. Understanding this has helped me, even without meds.</p>

23

<p>I have a son with ADD. I suspected this as early as second grade. Why? Because he could never accomplish anything on his own. If we hadn’t lived in this climate of hyperawareness that some here are decrying I would never have known because DS was extremely well behaved; he just could not do work at home or school on his own. He could read to me outloud perfectly, but he could not do this in a room by himself. After three years of tears over homework every night I finally took him to be diagnosed. Not decisive, but wonderful nurse practitioner said the amount of anxiety he had in completing the test was a good indication of a problem.</p>

<p>The first day on medication he said he felt like himself.</p>

<p>He could finally write a paragraph without my sitting there!</p>

<p>Bear in mind that he was a perfectly behaved child with a straight A average. </p>

<p>I think he would okay without medication. Yes, he’d be in college. He wouldn’t be at Williams, that’s for sure.</p>

<p>Why is that important? Because he wants reach his potential. Why not?</p>

<p>I think our expectations for what we can achieve have risen. My beautiful son would have been labeled an “underachiever” when we were young, just as my H and brother were. Instead, he is running A’s his freshman semester at Williams and is so happy with himself, his friends and his environment.</p>

<p>Cousin’s son has asperger’s. I know the diagnosis has helped them.</p>

<p>Actually, I think studies indicate that people are still underdiagosed.</p>

<p>Jessie: I understand your frustration, but I also understand people using this labels to try to understand themselves.</p>

<p>Medication, therapy, or let someone just be really depends on the comfort level of the person involved. If academic, social or work situations are not impaired then nothing is wrong. If they are, then we take the next step and consider options.</p>

<p>S has decisions to make everyday – wild, crazy, creative or quieter and focused. We all love the first person, but he can’t read (well he can, but can’t concentrate) or do math. I wish he didn’t have to confront these choices, but he does.</p>

24

<p>“The patient with basal cell carcinoma is also entitled to treatment for what ails him.”</p>

<p>This is true, but people struggling with life-threatening cancer will be annoyed if the patient who had basal cell carcinoma announces, “I beat cancer!” I think another problem with over-patholigizing is that some people will be skeptical (even more skeptical than they already are), and their skepticism may harm people who really do have serious disorders.</p>

25

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<p>There’s actually a disorder - I forget the name, but I’ve heard that it’s seen commonly, but not exclusively, in autistic people, and one of my good (definitely not autistic) friends has it - that causes skin to be extremely easily irritated. Reading this brought it to mind.</p>

26

<p>At our new teacher in-service, the District Asst. Superintendent spoke about Special Ed and the huge increase in mubers. One thing she said was, “They used to be called “nerds or geeks,” now it’s Asperger’s.” Believe it or not, there has been a great increase in parents who are looking for diagnoses for their less-than-perfect (in their eyes, anyway) children. And they demand through Section 504 or Special Ed, acommodations for these kids. I saw this the year a student of mine who had modifications for spelling - apparnetly she just couldn’t. But it isn’t spelling in Spanish - it’s phonics and writing what was heard. She worked hard and pulled all A’s on the quizzes. But the parents didn’t like it. We had a meeting, and I was told that she never had to work on this at all. I countered with “if she really couldn’t spell at all, then she couldn’t even write down any letters, so she really didn’t need the acommodation.” I also said there was a reason I wasn’t a neurosurgeon - that kind of stuff was too hard for me. Everyone has to learn something that is difficult for them. It didn’t matter. Next quiz and test, each word was sheer gibberish. I had to test her orally. And guess what? She didn’t expect that, so she failed them because she didn’t study at all, thinking I would have to take whatever she slapped on the paper. Instead of praising the child for working hard, the parents supported her using her “disability” as a crutch, instead of helping her work with it. Teachers have seen many parents who want whatever edge they can get for their children to help their GPA, etc. The days of Special Ed being a stigma are gone.</p>

27

<p>Agreed- there seems to be a new perspective on “disabilities”. I have actually had parents get upset, not relieved, when testing doesn’t support a diagnosis of, say Aspergers or ADHD or NLD. While areed too, that getting a diagnosis can open up doors to accomodations for services that can help a struggling child in this increasingly competitive world, I fully agree with allmusic… sometimes we need to legitimize, not pathologize.</p>

28

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<p>Left untreated basal cell carcinoma may invade bone and cartilage (5-10% of the time). My original point was that more minor ailments deserve treatment as well. More minor issues should not necessarily be swept under the rug just because someone else has a disease or disability that impacts their every day living to a much greater degree.</p>

29

<p>ej; I think you made an excellent observation. Just as our citizens have many times learned to blame “Society” for all of their problems and injustices, I think you have hit on a hot spot where parents want to blame a disease, condition, ADD, ADHD, or something for their children’s non-perfection or their substandard grades and academics. In many cases, it’s parents who did a lousy job at raising their kids. (At least in the educational forum).</p>

<p>Too many parents don’t get involved with their children’s education at all. They don’t do anything with them from birth to 5 years old. They think it’s the school’s job to make their children excel. They use schools as a baby sitter service. They don’t motivate or assist their children in anything academically other than to say; “Do your homework”. If you don’t work with your kids at 6 years old, then it’s too late when they are 16 years old. Many parents just don’t want to admit that THEY are probably at fault of their kid not being as exceptional as they may want them to be.</p>

<p>This is not to take away from the kids that truly have physical, emotional, chemical, mental, or biological issues affecting their learning capabilities.</p>

30

<p>From where I sit, one problem with pathologizing lables is it skews the allocation of limited resources,and often the “skew” is influenced by forces that people don’t realize, like the pharmaceutical industry, or managed care,. For most things there IS no " truly" defining line. Even things than can be objectively measured leave somewhat subjective thresholds. For lack of a better measure, I feel better about it when people put their money where their mouth is. It takes me out of the middle (which works only if the patient is my “customer”, not the insurance company). A good, though only loosly related example is when you can use pre-tax dollars to pay for uncovered medical expenses, or choose to spend more for name brand or move convenient formulations of medication. It’s been interesting to see the shift for people who had "allergies " to generic medicine resolve when they become financially at risk. I know there are many reasons this wouldn’t work, but everybody can’t have everything.</p>

<p>You may commence with the bashing.</p>

31

<p>No bash from me, because I completely concur.</p>

<p>Perhaps it is those of us in the trenches who see the most pathologizing. The time, effort and expense that goes into educating those with special ed plans is sometimes twice to ten times that what it is for a child without one. </p>

<p>Savvy parents have decided that the way to get an individualized education for their children, without the cost of private school, is to have their children diagnosed with some disorder or another. </p>

<p>What it really comes down to is modern parents’ inability to deal with the slightest discomfort in their children; anything less than A work means the child has a disability, anything less than exuberance means the child is depressed. And in a generation, we will find out the results of this generation’s millions of overmedicated children. I don’t expect it will be pretty.</p>

32

<p>There is also a flip side of that, Allmusic and Shrinkwrap. I wholly concur with you both (see my post #27) but I have also seen schools fighting for funding. The more kids that qualify for special services, the more funding and staff they get. Here, in some cases, if they had enough kids with certain diagnoses in their schools they got the programs (funding and staff) offered in their school.</p>

33

<p>We don’t have that problem here, with our decimated city and town budgets. We try to eke out the programs, based on revenue collected from property taxes, which draws money from library, arts, sports program, class sizes, electives, etcetcetc.</p>

<p>It’s the parents who push for these services, and the schools which must comply, under mandated federal law.</p>

34

<p>It has to come from somewhere. Usually taxes and/or insurance payments. I’m not opposed to spending money where “the people” feel it needs to be spent. People just need to understand it has to come from somewhere.</p>

<p>Here’s an example of what I was referring to above.
In California, Bipolar disoder and Autism are “parity” diagnosis, meaning they are paid for the same way as medical or “non mental health” diagnosis. “Personality disorders”, mental retardation, and sometimes ADHD are not covered by medical or mental health benefits. Mental health benefits agre generally carved out of other medical benefits in an attempt to contain cost as consumers have demanded coverage for them. If a private practice mental health provider wants to get paid, or a patient wants unlimited services and low co-pays, how hard is it to code for a parity diagnosis, especially if using softer “spectrtum” criteria? Not very. Mental health providers have long used the medications now called “mood stabilizers” for a varitey of symptoms. Now drug companies send reps who give primary care doctors quick “tests” to label those symptoms with diagnosis for which, guess what? their drugs are apporved, and no need for costly referrals to mental health providers or psychotherapy. Oila!(sp?) An epidemic of autism and bipolar disorder.</p>

35

<p>Ain’t it grand, Shrinkrap? </p>

<p>Sadly though,we are talking here about developing brains. We don’t know the long term ramifications of potent medications. We’ve done away with psychotherapy in lieu of adult medications, never tested on children, with no longitudinal studies. </p>

<p>I opine often about this because I am concerned by this epidemic overdiagnosis and medication overuse.</p>

36

<p>Well for what it’s worth, I still manage to get paid to do psychotherapy with kids, although not nearly at the rate I would if I agreed to do just “medication maintainance”.</p>

37

<p>IT’ll be interesting to see what happens now that the MH parity bill passed int he House and Senate. We all know thar arent going to give something for nothing. If MH services are no longer going to have higher coinsurances or lower caps on reimbursement, where will they take the money from? My guess is that they will make it harder to qualify for the services in the first place- they’ll exclude diagnoses, lower reimbursement and cover little if any testing. We win the battle and lose the war.</p>

38

<p>I wonder if any of you could provide some actual numbers; I am very curious to what degree this OVER-diagnosis is occurring? How many autistic or asperger’s kids are medicated? How many are medicated for other/co-morbid conditions? (by the way my S has mild Asperger’s; at his school he was the ONLY student in his grade (300 students) that was diagnosed with any form of autism. And he never received any medications. Or academic accommodations or services through the school either, for that matter. Of course, we also do not live in a very affluent neighborhood where I suspect much of the abuse occurs). </p>

<p>In this age of limited resources what do YOU suggest we do? Sweep it all under the rug and just do away completely with any type of diagnosis for autism/Asperger’s/ADD? Do as Christcorp suggests and blame it on refrigerator mothers and bad parenting?</p>

39

<p>As I said, I’m all for putting “the peoples” resources where the people want them. Hey! More money for me! ( just kidding). I didn’t say there was overdiagnosis. There are more kids not getting what they need than kids getting something they won’t benefit from, or something that will harm them. I am not a big fan of “diagnosis”, but I understand they are necessary. I am mostly concerned about allocation of resources, and I sure don’t have a solution. I just think people should be aware what influences how diagnosis are made.</p>

<p>I did have one kid with Aspergers come for a medication evaluation because she frequented a forum in which the other parents questioned why her kid wasn’t on medication ( apparently he was the only one) and offered a lot of medical advice.</p>

40

<p>With no physical explanation for ADHD no absolute diagnostic criteria can be established and no mechanism for treatment can be explained. I have seen children as young as six who already have been diagnosed with OCD, ADD, Asperger’s AND Bi-polar (because no one is quite sure what the problem really is), and have been placed on serious medication “cocktails”. </p>

<p>This is part of an article by a Duke pediatric psychologist about overdiagnosis of ADD, but the very same arguments can be made about Aspergers, etc. The point is that we need good multi-disciplinary evaluations of children, not a pedi in a 10 minute office visit writing a script. Sometimes figuring out what is really going on with a child takes many professionals, from different fields, to find the needle in the haystack (and sometimes, there is absolutely nothing pathological going on…nothing that needs treatment, medication, diagnosis or services…“normal” casts a wide net).</p>

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