An autism thread that's not about vaccines

Parent Cafe
1

<p>…though I admit, it was the vaccine threads pushing some of my buttons that inspired me to post this.</p>

<p>My twin brother (we’re 22) is autistic. And when I say autistic, I mean that he resembles Rain Man in many ways, not that he’s moderately socially inept. When I was a kid, most people didn’t know what autism was, but those who did knew that it was a serious disorder.</p>

<p>Now, everyone “knows” what autism is. But increasingly, I see people claiming to be, or being claimed to be, autistic (or having Asperger’s), who strike me as simply geeky. The standards for diagnosis have shifted up the spectrum. </p>

<p>This bothers me for two reasons. One, it trivializes autism, makes people think that it’s a less serious, if more widespread, disorder. Two, it pathologizes geekiness, by labeling any deviation from the social norm as a disorder. And then, once it’s pathologized, people medicate…I am not anti-psychiatric medication; I know people who would not be able to function without it, but medicating people for moderate social ineptness strikes me as inappropriate. My brother wasn’t medicated, and managed to graduate from high school in a regular ed program and get a job.</p>

<p>I understand that autism/Asperger’s is a spectrum, and that there are more and less severe ends of that spectrum. But the spectrum isn’t just of autistic disorders, it’s a chunk of a line that also includes normalcy. I think the line is increasingly being drawn to encompass anything that’s below average. It would be like considering anyone with an IQ below about 95, where 100 is average, “mentally ■■■■■■■■” (currently, you have to be below 80 to even be considered borderline).</p>

<p>I’m certainly not saying that everyone who has been diagnosed in the last decade doesn’t really have autism, but I think it’s now overhyped and overdiagnosed.</p>

2

<p>It’s an interesting point, and I can see how you’d feel your brother’s diagnosis feels trivialized by some of the autistic claims around you. There is a tendency to jump on diagnosic bandwagons in this country, rather than just see wide variations of normal. In my own case I’m one of those who has been rather enlightened by the writing about low level autism in the media in recent years. I can see tendencies in numerous family members, an old boyfriend. Unless they self identified, I’d not label them. They’ll probably never be formally diagnosed. But it has brought me a certain peace in terms of understanding a variety of behaviors that previously just seemed irritating and insensitive. </p>

<p>Perhaps you’ve seen a certain silliness in your peers claiming autism, when it has been a more serious topic in your life? As people my age joke about dementia when we loose car keys and such. We feel like numbskulls, and try to joke it away.</p>

3

<p>It’s an interesting point and I think similar things happened with ADD/ADHD. I think great lakes mom makes a good point that there are some advantages to the current trend of over identifying. I’d put my oldest son on the normal side of the autisim/Asperger’s spectrum. He’s quirky and geeky, but can function in the world without support. </p>

<p>I think as a society we are overapt to think everyone should be perfect. My son also has very mild Tourette’s (almost non-existent now). He never needed to medicated though we did occassionally alert people who might need to know about the tics so that they wouldn’t worry. (They weren’t too distracting.)</p>

4

<p>I know that i will get flak for this, but medicine is a business. Pathologizing makes money for docs, other medical specialists (speech ther. OT, PT, organizational coaches, psychologists, pharmacies, hospitals, and others). That said, one cannot trivialize someone else’s pain because your bother may have more symptoms. An anology might be that one should not have a basal cell carcinoma taken care of, because malignant melanoma is more likely to kill you if left untreated. The patient with basal cell carcinoma is also entitled to treatment for what ails him.</p>

5

<p>

</p>

<p>I wouldn’t equate geekiness with basal cell carcinoma. And a lot of the people that I’ve met who have been diagnosed with Asperger’s, or even some with autism, basically seem to be geeks. There’s a difference between something that could kill you and being a bit outside social norms. Given my shyness, geekiness, and relatively delayed social development, I probably would have been diagnosed as having an autism spectrum disorder if the threshold now had been in place when I was a little kid.</p>

<p>

</p>

<p>I actually think “can function in the world without support” is a decent threshold for diagnosis, though I’m not sure how you determine it with a two year-old.</p>

6

<p>mathmom, your son sounds like mine. He also has mild Tourette’s, which did need to be medicated when he was around 8-11, but not since. My son decided he would rather put up with the tics than the drowsiness from the meds. And now, at 24, he still has some symptoms, but they are mild and don’t hinder him from doing what he wants to do. I have also suspected mild Asperger’s in him, but it was, as you say, probably right there on the normal side of the line, so never enough to even consider having him diagnosed.</p>

<p>I do agree that there may be both benefits and disadvantages to the current trend to overlabel. It is good to be able to get help when needed and to have a label for something when you know there is something wrong, but don’t know what it is. (It was a relief for us when we finally got our son diagnosed with Tourette’s, because then we knew what we were dealing with and that he couldn’t help some things he did.) On the other hand, not all quirks are pathological, and it is good to be able to accept a range of behavior without having to define what is “normal” and what is not, and to recognize that minor “quirks” or whatever are not the same as full-blown autism. Making every minor deviation into a disease makes it so we don’t appreciate what those with true autism are dealing with.</p>

7

<p>If you met my Aspie son, you’d probably think “geeky and socially awkward but no need for a label.” However, the label was valuable in 4th-6th grades, where he really needed some academic support. He doesn’t receive special services in high school, but still has lots of academic challenges.</p>

<p>I will say that my son gets angry when he hears about people wanting a “cure” for autism. He doesn’t think he needs to be “cured” and doesn’t think Rain Man needed to be cured either. I’ve explained to him that there are people with autism who never speak, and others who have emotional meltdowns on a regular basis, and if I was their mother, I might be seeking a cure, too.</p>

8

<p>I am so glad to see people recognise this. The ADD/ADHD/Autism lable has been spit out way too freely. Growing up in the 50’s/60’s ADD and such was not so recognized. If a student had an attention problem, they were dealt with on a more one on one approach. Granted, many times they were put into “Special Ed” type classes, but I firmly believe that was better than all the drugs that are given now. </p>

<p>Not to say that some people don’t benefit from drugs, just that many times it isn’t necessary. Plus, many times they don’t even have ADD/ADHD/Autism. Doctors have gotten lazy because of too many patients. They go for the easy answer. And drug companies are way to eager to sell drugs for a patient which is also the easy way out.</p>

9

<p>I don’t really think the “old fashioned way” was best. I was a Special Ed major in the 70s, and there was a major called “LD/BD.” Learning disabled/behavior disordered. At the time, it was often the same thing, because the kids with learning differences (almost always boys) would act out, out of sheer frustration. All of them were sent to one self-contained classroom. And if they weren’t “bad” enough for the special ed classroom, they were just paddled a lot. I’ll take today’s system any day.</p>

10

<p>missypie, I got my masters in Special Ed in the late 70s, during the mainstreaming heyday. I still support mainstreaming but only if there is a lot of support for the teachers. We had that in the 70s where I taught. I had a full time aide and the school had a reading teacher, a math resource specialist, special arts and music support, a school psychologist and plenty of money for pretty much any curriculum I wanted to use. Things, money-wise, have changed dramatically since then. This was when ADD and ADHD were still called hyeractive and ritalin was getting a foothold. It wasn’t the doctors who were pushing it so much as the parents were demanding it. I was amazed at how many parents sat through my conferences chomping at the bit to ask if their child was a candidate for medication. I fought parents all the time about medicating. That seemed to be the beginning of expecting a pill for everything and it only got worse.</p>

11

<p>I find this heartening ( there is such a word? I am usually using disheartening…)</p>

12

<p>Well, jessiehl, I was trying to say that a more minor behavior, social delay, or minor problems in learning deserve attention too. That student’s issues should not be swept under the rug because someone else has a bigger learning difference.</p>

13

<p>when I was in school- ADD/ADHD and milder / severe learning differences- even dyslexia were not recognized. NOt to say that perhaps they weren’t addressed in other areas, but I always had problems in school, despite my parents being told I was bright, " I just wasn’t working hard enough".
If you were severely disabled, whether physically or mentally, its possible that you could be put in a “home”.
Some parents had to home school their kids because the district wouldn’t accept them, other kids simply dropped out ( like me)</p>

<p>Im sorry that some people who are affected more severely feel their troubles have been exacerbated by the recognition that others also have overlapping symptoms on the spectrum.</p>

<p>I feel the opposite. I feel that by recognizing that there are differences in atypical or neurotypical behavior will lead us to greater acceptances of those differences</p>

<p>[now if they can just get funding](<a href=“http://isnt.autistics.org/”>http://isnt.autistics.org/&lt;/a&gt;)</p>

14

<p>When I was a kid (early 60’s -early 70’s) there was a population of kids who simply never went to school. These were “■■■■■■■■” kids and “poorly behaved” kids. Some kids were simply deemed uneducable. Now every kids is entitled to an education, by law. (I had a friend growing up who never went to school. She was diagnosed hypothyroid in adulthood and “cured.”)</p>

<p>Also, with no child left behind and all the state testing, schools are held accountable for any student who is doing poorly. No student is allowed to sit back, pull D’s, graduate and move on. I think this environment pushes towards increased diagnosis. If a child is not talking at 3yo, services are made available. Presumably that child does better than they would have without those services. If a kid is pulling D’s, they are tested for learning issues, and presumably, the help they receive allows them to do better than they would have without those services.</p>

<p>Are some kids hurt by the “labeling?” Probably. Are some helped by the services? Goodness, I hope so.</p>

15

<p>EK we cross posted. Your link is a crack up=). I’m gonna print it out and post it on BB at school.</p>

16

<p>Yeah, the good old days were not so good. Late 60s-a girl at the local high school dove into shallow water and thereafter used a wheelchair. She was never able to come back to school because the school had stairs.</p>

17

<p>

</p>

<p>That’s a hard issue. When I was a little kid, I wanted to “cure” autism (which I put in quotes because I didn’t yet understand the nuances of neuroscience, psychology, and mental/developmental health treatment at the time) - that was what got me interested in studying the brain, though at that age I naively thought it was neurosurgeons that did the curing. :slight_smile: I saw how hard it was for my brother and his special ed classmates (he did not get “mainstreamed” until he was in high school) and their families, how truly impaired it can make people, even those who are verbal.</p>

<p>I got to see close-up how the families of those with severe cases are affected during the facilitated communication era. My mom was one of the first in our then-home state in the autism community to start calling facilitated communication a fraud in public, and put a great deal of effort into speaking out against it and trying to debunk it. This angered some of the other parents. One of them approached my mom one night, and said that whether or not it was a fraud, his wife was smiling for the first time in six years, and why couldn’t she let them have that, why was the truth more important than that? This was the early '90s, so I was maybe seven or eight, and I remember thinking very hard about it, trying to understand it…the idea that parents would be happier to be able to communicate with a false child of sorts, an illusion created by a fraudulent “treatment”, and to feel some sense of normalcy, than to deal with the true, but nonverbal, nonfunctional child.</p>

18

<p>

</p>

<p>Believe me, I’m not pining for a return to the “good old days” - remember, I grew up in the late 80s and early 90s, not the 60s. And even then, there were a lot of problems that are gone now, that were simply caused by lack of awareness and standards, like special-ed students, including 5 year-olds, being put in the “alternative” school, which also included high schoolers with violence problems. The good old days were not so good.</p>

<p>That doesn’t mean that every kid with some sort of problem or delay needs to be diagnosed with a disorder…or, for that matter, that only kids with diagnosed disorders should be treated as something other than educational assembly line products who sometimes fall through the cracks.</p>

<p>I would love to see society figure out how to treat individuals according to their needs, and with compassion (as is done more and more often now), without having to pathologize the entire population in order to legitimize the individual and compassionate treatment (as also seems to be done now).</p>

19

<p>Here is some exciting news on efforts to diagnose and treat autism as early as possible. Earlier this week the American Academy of Pediatricians came out with 2 reports for pediatricians which recommend that all children be screened for autism twice by the age of 2. Some excerpts from the AAP press release and a few articles that covered their announcement:</p>

<p>

</p>

<p>

</p>

<p><a href=“Error | AAP”>Error | AAP;

<p>

</p>

<p><a href=“http://www.webmd.com/brain/autism/news/20071029/routine-autism-screening-recommended[/url]”>What Is Autism?;

<p>

</p>

<p><a href=“http://www.foxnews.com/story/0,2933,305842,00.html[/url]”>http://www.foxnews.com/story/0,2933,305842,00.html&lt;/a&gt;&lt;/p&gt;

20

<p>I saw that scansmom- I think it is good for more info to be out there.</p>

<p>My daughter was beyond quirky- she would scream for literally hours, she wouldn’t allow me to hold her while I nursed her, she wouldn’t wear clothing or tolerate cloth diapers and she was overall so irritable, that when she had ear infections I totally missed them because I didn’t see any difference in her behavior.
But the pediatrician totally blew me off “nicely” by dismissing my concerns as " every child has different personality".
She was even seen at the Child development center ( but not the autism clinic) at the UW, and they said that since she looked at you while you spoke, she wasn’t autistic.
Well- fine- I wasn’t looking for a label, but I knew that a 4 year old tearing strips of skin off her feet and seemingly impervious to pain, yet would jump through the ceiling if you touched her, wasn’t typical.
I could have used a little more :eek: ! ohmygod lets find out what is going on & less of " oh it will be OK"</p>