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Embracing an Epidemic

By Mike Snyder

So, a couple of weeks ago I finally got my son, who just turned 5 years old (Happy Birthday, buddy!), to a pediatric development and behavioral specialist affiliated with Children's National Medical Center.

The hour-long appointment went well. My son was fired up and fully engaged, which definitely helped. The doctor had copies of my son's education evaluations and Individual Education Plan and agreed with the psychologists and educators who had found delays in expressive language and fine and gross motor skills. She wrote a prescription for occupational therapy, and otherwise recommended continuing the speech/language therapy and working toward the goals in his IEP.

The doctor said she thought my son's development would progress to be age-appropriate for kindergarten next year and we scheduled a follow-up appointment six months hence. To my relief, she saw no signs of autism. At this point in my son's evaluation process, it was what I expected her to find. Six or nine months ago, I would have been a bundle of nerves going into the appointment. But my knowledge base has grown. So has my son.

For the most part, I took the appointment to ease my mind. Is that wrong? I'll admit that I'm a worrier, but I know that about myself, so I'm hypersensitive to it. I've questioned myself all along on whether or not my concerns were justified or if I was falling prey to hype about an "Autism Epidemic" -- a sort of quasi-Munchhausen Syndrome by proxy. (Is it the autism spectrum or spectre, I've wondered?)

My rationale for my actions: As my son's advocate, it's my responsibility to be diligent and consult medical experts, especially after psychologists and early childhood education experts found delays. I'll defend my actions for that reason alone, with poor marks for not having gotten on the ball earlier.

Another issue I'll raise in self-defense is access to medical specialists. Not one of the half-dozen specialists I called could schedule an appointment in less than three months. Most said it would be six months, some weren't even accepting new patients and only one within 25 miles accepted our health insurance. What if our needs were dire? What if we were uninsured? I shudder to think. It's all fine now, but last spring and summer, when my son was communicating poorly, it was a major concern.

I should add that I'm no expert on autism nor am I a statistician, though I suspect that there's a correlation between expanding and redefining the criteria for related disorders on the spectrum and the spike in the number of reported cases as researchers and the medical community work to understand the disease. The byproduct, heightened awareness, is helping to fund research, treatment and early intervention. It pushed me to address my son's needs. Thirty years ago, he might have been labeled a "late bloomer." He might have done fine in grade school. Or he might have become a "problem child." Today, he's getting the help he deserves.

How do you feel about the autism "epidemic"? Is it being overhyped, or is acknowledgment of the disease's pervasiveness long overdue? Also, doesn't lack of access to diagnostic specialists fuel parental fear?

By Mike Snyder |  January 29, 2008; 7:00 AM ET  | Category:  Child Development
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Comments


When my wife was pregnant we met a single mother who told us her friend got her in touch with a doctor who would diagnose her son on the Austism spectrum so he could qualify for special tutors in the DC education system. He was now older and when she moved to Virginia she wanted that classification removed, but it was on his record and she was panicking that her son would be classified in special ed forever. I don't have any more details than that, can't prove anything 6 years later, and her son was definitely normal acting to us. So I know of at least one story of a parent gaming the system. I've never met another kid whose parents said he was on the autism spectrum, but I knew a few kids who were ham radio and scouting experts in the 1970s who I am now sure had Aspergers.

Posted by: DCer | January 29, 2008 7:13 AM | Report abuse

Mike, I think I have mentioned this but I will say it again. They have indeed widen the definition of autism. So more kids would fall under the new definition. Therefore from a statistical point of view (I am a statistician), they don't have comparable data from 15 years ago to say if autism is more or less prevelant. My daughter is mildly on the autism spectrum. Again, I also wish people would not have dead fear about autism. Mild forms of autism (under the current definition) is no worse than any other normal developmental delays. Really, my daughter and most of her class do not have any cognitive delays. There are kids in the noncategorical class with noteable cognitive delays. Again the vast majority of the kids in these early preschool intervention class, will catch up by the end of elementary or their high school years. I don't think people should panic as much as you are doing. I don't think it is a bad thing to widen the spectrum of autism if it gets kids the services they need. In time, I think they will refine the definition to tell the different disorders that kids have that currently fall under a default "autism spectrum disorder." But the label isn't what is important. The point is to get your kids the services they need to maximize their potential, whatever that may be. Relax, your son and most of these kids will be fine. To be honest, the very high functioning autistic kids are just quirky. More of a difference then a true life long disabilbility.

Posted by: foamgnome | January 29, 2008 7:33 AM | Report abuse

Mike, I think I have mentioned this but I will say it again. They have indeed widen the definition of autism. So more kids would fall under the new definition. Therefore from a statistical point of view (I am a statistician), they don't have comparable data from 15 years ago to say if autism is more or less prevelant. My daughter is mildly on the autism spectrum. Again, I also wish people would not have dead fear about autism. Mild forms of autism (under the current definition) is no worse than any other normal developmental delays. Really, my daughter and most of her class do not have any cognitive delays. There are kids in the noncategorical class with noteable cognitive delays. Again the vast majority of the kids in these early preschool intervention class, will catch up by the end of elementary or their high school years. I don't think people should panic as much as you are doing. I don't think it is a bad thing to widen the spectrum of autism if it gets kids the services they need. In time, I think they will refine the definition to tell the different disorders that kids have that currently fall under a default "autism spectrum disorder." But the label isn't what is important. The point is to get your kids the services they need to maximize their potential, whatever that may be. Relax, your son and most of these kids will be fine. To be honest, the very high functioning autistic kids are just quirky. More of a difference then a true life long disabilbility.

Posted by: foamgnome | January 29, 2008 7:34 AM | Report abuse

sorry for the double post.

Posted by: foamgnome | January 29, 2008 7:41 AM | Report abuse

Thanks for the triple post, foamgnome. And I'd like to say that I'm in agreement with you about panic being unnecessary, although I think trepidation is a natural reaction.

Posted by: Mike | January 29, 2008 8:00 AM | Report abuse

Autism is definitely overhyped. There is not that much autism. Children's behavior comes in a wide range. We are too quick to diagnose and give IEPs to school-aged children. I truly believe we are giving excuses that allow parents (either allowing them to not make their kids behave or to not require them to interact more with their children.)

Posted by: wisconsin | January 29, 2008 8:03 AM | Report abuse

I agree with Wisconsin. I think it's a symptom of a larger problem of wanting to classify any behavior that isn't perfectly "normal" (however normal is defined) as some kind of disorder. It's the same thing that happened with ADD.

Posted by: Dennis | January 29, 2008 8:31 AM | Report abuse

Mike, I think you're handling your son's ordeal very gracefully. Some parents (mothers more than dads) are so confused, exhausted and literally terrified from trying to get help for their autistic child that they become ill. Some get so weak that they can barely make it out of bed, and in extreme cases require hospitalization themselves.

Autism is real. It has nothing to do with pparents making excuses for their kids' misbehavior. The parents see that there is something abnormal with how their child reacts to his or her environment. After discovering how powerless they are over correcting the problem, the parents become desperate and seek advice from the experts.

Show me a person that ignores his sick child, and I'll show you another sick parent!

Posted by: DandyLion | January 29, 2008 8:50 AM | Report abuse

Considering one does not die from autism like they could from asthma and diabetes (and where's the outrage there?), I think it is definitely over-hyped. Along with ADD and ADHD (I worked in a pharmacy for 13 years, too many kids on legal drugs!).

I saw a TV commercial the other day mentioning carseats and comparing carseat safety to autism because of the "1 in 166" statistic! I wish I had paid more attention to it, but I don't have kids. The ending just struck me as a little odd.

Posted by: 21113 | January 29, 2008 8:58 AM | Report abuse

The problem with the disease being over-diagnosed is that children who truly do have special needs are not being helped to the full extent possible in their schools, especially in lower income areas. I saw this when I was teaching in NYC. One semester I taught a self-contained special education class of twelve students. This was a travesty firstly because I am licensed to teach math, not special ed. Further, within the class there were two types of students; 6 who truly had learning disabilities and needed the small class size and special attention to reach even modest goals, and 6 who were labeled as "emotionally disturbed". As far as I could tell, the emotionally disturbed kids were sent to this class because other teachers could no longer deal with their misbehavior. There was a lot of cursing, fighting, and blatant disrespect, but nothing that screamed to me of an emotional disturbance, but rather a lack of boundries and limitations and lack of a supportive home environment. The result was that I was unable to give the 6 learning disbaled children the help they needed and I was unable to give the 6 other children the boundaries they needed. This is as much a problem with the school system as it is a problem of overdiagnoses, but I forsee situations like this arising from the sudden influx of autistic children into the special ed arena, where there simply are not enough classrooms and teachers to help everyone.

Posted by: jsscuban | January 29, 2008 8:58 AM | Report abuse

I agree that the wait to get an appointment with a qualified specialist is daunting. We called the child development unit at our local children's hospital in September of 2006. They called me back in November and we were given their first available diagnostic appointment the following August. During this process a friend gave me the book "the Out of Sync Child" and I had never read anything that more accurately described what we were dealing with. I mentioned this at our evaluation and was given a look like I had just said I thought my daughter had 3 heads. Instead I was told she needed to recieve therapy to help her deal with her emotions. I did not agree with this, but I did take my daughter to the refered psychologist who thankfully thought that the first evaluation was way off base. In fact, she asked if I had ever considered a sensory disorder and suggested I call an OT. It took us until a few weeks ago to get the OT evaluation, but the office has been wonderful to work with. They took care of obtaiining the necessary paperwork from our docotor's office and even contacting our insurance company after it was determined that therapy would be beneficial. We are still in the process of getting the appointments scheduled, but I am feeling much better about everything and the few helpful suggestions the OT gave us at the evaluation have made a huge difference in her behavior at home.

Because our daughter's issues are not severe and there are no accompanying developmental delays I was tempted to give up and see if she progressed on her own. Now at least I feel like we are getting closer to getting her the help she needs. I think 18 months is a long time to wait, but hopefully it proves to be worth it for us.

I think that people are more aware of autism and other disorders now, but I do not think it is a bad thing. The earlier we step in to help our children succeed, the better it will be for them. And most people I know who have been concerned about their children have been with good reason.

Posted by: Momof5 | January 29, 2008 9:34 AM | Report abuse

Sorry-I didn't realize I was writing a novel... :)

Posted by: Momof5 | January 29, 2008 9:36 AM | Report abuse

I think it's fairly well-established that most, if not all, of the surge in autism cases, are the result of more lenient diagnostic criteria. I don't think it's necessarily bad. Even though Asperger's kids may do fine academically, I wonder how they do socially. Even twenty years ago, long before the broadened definition, I wondered if one of my highschool classmates was mildly autistic. You know people like this: their gaze bores into you like gimlets, and when they ask about your day you feel like they're grilling you. They just don't process social cues quite the way others do. But if you can get past that, they're fundamentally just as nice and caring as everyone else. So if structures can be in place, early on, to help them relate better to others, then I see it as win-win for everyone.

On the other side, one of my young relatives was diagnosed as Asperger's and ADHD and he has always seemed perfectly normal to me, from birth onwards. So I sometimes wonder whether the new diagnostic criteria are a little too "fuzzy". Asperger, ADHD etc diagnoses and interventions should be aimed towards leveling the playing field, not towards re-tilting it to give such kids a competitive advantage over their "neurotypical" peers. Soemtimes I wonder if this re-distributing of academic help through IEPs, teacher's aides, OT, etc, is really giving the kids a disproportionate advantage. Shouldn't ALL kids who are performing under the mean get an IEP and a teacher's aide?

Posted by: m | January 29, 2008 9:43 AM | Report abuse

Our best friends have a 25 year old daughter with Aspergers. Unfortunately she was not diagnosed until high school, and so she did not receive as much assistance had she been diagnosed at a lot younger age (yes, they thought she was just "quirky" growing up).

It isn't as simple as some have made it out to be. Although she has a strong drive to be independent, she has had trouble staying in school (college), holding down a job and living on her own (she spent a year at college and another year living in a co-op, but she is now back home and unemployed).

Posted by: CJB | January 29, 2008 9:57 AM | Report abuse

Mike,

Here is some scientific analysis that supports your intuition that the epidemic is a phenomenon that can be ascribed to expanded diagnosis.

http://photoninthedarkness.com/?p=117

Posted by: tomtildrum | January 29, 2008 10:05 AM | Report abuse

Momof5 - What's OT?

BB

Posted by: Fairlington Blade | January 29, 2008 10:08 AM | Report abuse

Occupational Therapy

Posted by: Anonymous | January 29, 2008 10:10 AM | Report abuse

tomtildrum - I'm not doubting the idea of expanded diagnosis as reason for an increase. But that being strictly a statistical exercise, it shouldn't be discounted that increases in medical knowledge may have contributed to a better understanding, and therefore (ideally) a more accurate framework for diagnosis. My understanding is that for many years, the medical community did not understand what autism was.

One of my kids has a peanut allergy, and talk about tidal waves. But - and this is a big one - there is no widely accepted study that suggests there are more children with peanut allergies than ever, despite the rampant idea that there are. There is, essentially, a bit of wildfire marketing going on in both cases.

Posted by: glenbrook | January 29, 2008 10:28 AM | Report abuse

Thanks you Mr. Snyder. I have been on my soap box about the new fangled 1994 Autism Spectrum since the media hyped it up to be an epidemic.

There needs to be more coverage of the FACT the autsim spectrum is NEW - and this is all relative.

Also, more coverage should address that long list of ancillary warning signs we see everywhere and the fact that this is all SECONDARY symptoms and mean nothing.

If the chld is "related" and has a range of emotions - the autism spectrum was not meant for that kid.

From one worrier to another.

Posted by: Julie B. | January 29, 2008 10:33 AM | Report abuse

It's not that autism is overhyped so much as the media are full of idiots who push a storyline that doesn't match reality. The reason for the increase in autism rates is simply a definitional one: the definition (i.e. the criteria for diagnosis) has changed. Therefore, the number of kids with autism has increased.

I read a study in Psychological Science that went through the data and dispelled the myth about the explosion of autism. In large part, what has happened is that kids who were once labeled as being "retarded", particularly mild forms of retardation, have been re-categorized. In fact, the increase in autism rates nearly perfectly matches the decrease in diagnoses of mental retardation.

Thus, the whole "Cure Autism Now" thing is just stupid, as if autism were some recent epidemic with a single cause. Autism most likely covers a spectrum of disorders with different etiologies and overlap in the changes in the brain that produce the behavioral symptoms.

Posted by: Ryan | January 29, 2008 10:42 AM | Report abuse

Very helpful and reassuring to read the stories of other parents. I'm the Mom of 2, including a 9 year old son who has a lot of energy. He does well academically, and is not on any type of medication. I'm not only his Mom, but I'm also a Social Worker, and learning how to care for him has been an enlightening journey. At age 5 he had a seizure at school that ultimately turned out to be a diagnosis of Acute Confusional Migraine. (He's had about a half dozen other episodes and I've had to come up with a protocal for his caregivers that educates them about the signs that foretell an episode, and how to treat them (Rest in a quiet room!) The first few episodes occurred at school and definitely freaked the staff out! He also has displayed a self-stimulating behavior over the years that my husband and I refer to as his "Happy Dance". When he is excited, he will stand up and jump up and down, as if to release his excess energy. The seizures and curiosity about the Happy Dance (was it a sign of something else, or just a bit of a eccentricity?) It also started my husband and I on a quest to get the right diagnosis and to learn how to deal with it. We learned that thankfully he did NOT have a brain tumor, epilepsy or any specific learning disorder. I have to add that there were some definite differences in the way my husband and I handled the issue. I was drawn to get as much information on our son as I could, so I could be a better parent and advocate for him. My husband, on the other hand, was afraid that he would be labeled and medicated. As it turns out, our son came out in a 'gray area' when he was evaluated for ADHD. We provided his school with a copy of the evaluation, which his teachers seemed to appreciate. Here in this area, we are blessed to have Children's Hospital and Johns Hopkins/Kennedy Krieger close by. Getting an appointment at Kennedy Krieger in Baltimore took over 9 months, and didn't turn out to be as helpful as I thought it would be. I found that there were some physicians who treated me as if I was fishing for a diagnosis. And I saw so many profoundly disabled children that I felt guilty for seeking out a professional consultation for my son at all. In the end, he was given a diagnosis of ADHD. There have been some therapists and teachers who have taken a gentler approach and made some great suggestions about techniques for discipline and the best learning environment. For example, I ordered a weighted lap blanket that some Occupational Therapists use to help him focus on school work at home. He loves it, and says it helps him with his "Restless Body Syndrome". (Yes, he did identify and self-diagnose this condition after watching the commercial on TV for the Restless Leg Syndrome medication!) The lap blanket costs less than $30.00, and has NO side effects! A great tool to help active kids relax and stay on task.

I think that sometimes doctors and specialists get burned out by parents who do demand a diagnosis, especially if they want the county/state to foot the bill for special services or even private school education. My friend who is a principal in PG county has many stories of parents who played this game. Funny thing is, the more profound the handicap, the more difficult it is for a private school to handle it, as their pockets aren't as deep as the public school system!

I would like to hear from other parents who observed behaviors or tendencies like my son's self-stimulating 'Happy Dance'. I never for a moment thought he was on the Autism spectrum (and he does fine in school), but when I read about 'stimming' behavior among Autistic children, it got me to wondering.

There is truly so much more we have yet to discover about the BRAIN!

Posted by: Huckleberry Friend | January 29, 2008 10:44 AM | Report abuse

While I am sensitive to the struggles that autistic children and their families experience, I just have to ask why this blog spends 1 in 5 days talking about something that affects 1 in 150 children. If you do the math, that means you should be talking about it twice a year, not once a week.

Posted by: fake99 | January 29, 2008 10:46 AM | Report abuse

"Considering one does not die from autism like they could from asthma and diabetes (and where's the outrage there?), I think it is definitely over-hyped. Along with ADD and ADHD (I worked in a pharmacy for 13 years, too many kids on legal drugs!).

. . . I wish I had paid more attention to it, but I don't have kids."

Posted by: 21113 | January 29, 2008 08:58 AM
"

Note to self: to determine whether a disorder is over-hyped, don't apply objective standard, "is it a disorder recognized by the AMA," but instead ask, "do people die from it?" Under this rigorous new objective criteria, all of the following disorders are overhyped: high cholesterol, high blood pressure, restless leg syndrome, depression, bipolar disorder, scoliosis, arrhythmia, musculoskeletal disorders, and Marfan syndrome.

Did you conclude from the high volume of cholesterol-lowering medication that too many adults were on legal drugs? Or did you conclude that maybe the patients' physicians might know a little bit more than you about each patient's needs?

The fact that you have no personal experience with a medical condition doesn't mean it isn't real. It means you've identified an area of ignorance -- in you.

Posted by: Grammar Police's Friend | January 29, 2008 10:52 AM | Report abuse

The truth upsets people because it could negatively impact funding for well needed research....

Dr. Stephen Goodman, an epidemiologist at Johns Hopkins University in Baltimore, has reviewed autism statistics for the past 30 years. He says, "The explosive increase that has been claimed is almost certainly not true."

"The numbers, if they're rising, are not rising very quickly, if it's going up at all," he says.

There's no question more children are being diagnosed with autism than ever before. But Goodman, other respected epidemiologists and autism researchers says that's because of something that happened in 1994, when the definition of autism was greatly widened. Since then, Asperger's syndrome and other brain disorders that were not included before have become part of the autism spectrum. On top of that, Goodman says there are no reliable numbers from the past to support claims of an exponential rise.

"Have you ever seen a 60-fold increase in any disease?" Stahl asks Goodman.

"Not that didn't have a recognizable agent, like an infectious disease...like AIDS," Goodman says.

Asked if there could be a hidden source, that has yet to be identified, Goodman tells Stahl, "Many people have looked very hard, and they haven't found one."

The truth is the truth. Whether you like it or not.

Posted by: The Truth to the Epidemic | January 29, 2008 10:54 AM | Report abuse

When I was growing up it was more common that adults would just help a kid -- talk to him or her, get a kid involved into sports, club or other social group, provide some extra tutoring -- without a formal referral or IEP. When I was having a hard time in 5th grade, my homeroom teacher (it was a combined 5th-10th grade school, Old World stuff) would just take me with her to all her classes and let me sit in the back of the classroom, because she was the only teacher whom I would listen to. I doubt my parents ever heard about this arrangement, which did not last long, maybe just a few days, but enough time to get me adjusted to a new school. We also had a coach later, in 8th grade, who let a girl move in with his family for a month, because she got so attached to him in summer camp that he became a designated father figure. The guy's wife was a saint, obviously; so was the girl's mother.

I think most people don't realized how transient kid's problems sometimes are. We don't have to rush to change things instantly, it might be possible to let the child work it out holding his hand and actualy listening, and even (oh horror!) letting him have it his way.

I'm watching my grandchildren growing now and I'm reasonably optimistic: one still can see teachers who are brave enough to fight the system, who will invite a kid to hang out with them or their family just for fun, who will give you an honest advice off the record, and do what they can to make the kid's passage through school part of his growing experince, not just a lesson in obedience.

Posted by: Loretta | January 29, 2008 10:56 AM | Report abuse

fake99,
Statistics aren't the end all.

I know far fewer than 150 children, yet I know at least 6 children with rather severe Autism. Neither of my children have Autism, and I'm not in Special Ed.

Posted by: DadofTwo | January 29, 2008 10:58 AM | Report abuse

I absolutely think that the biggest factors driving the "epidemic" of autism are the broader diagnostic criteria combined with greater awareness, parental paranoia, and lack of access to good specialists. All of these things tie together--the broader diagnostic criteria to include Asperger's Syndrome and PDD-NOS means that the clear dividing line between "autistic" and "not-autistic" isn't there anymore. Greater awareness means that people who never would have considered having their quirky children evaluated before are now very concerned that their child is autistic. Parental paranoia means that parents really, really want their child to be "perfect" and if they can't have perfect then they want whatever it takes in the way of special classes and lessons and attention to get the child at least to "normal." And lack of access to good specialists means that kids are getting diagnosed by people who aren't necessarily the best qualified to make these diagnoses, or who are more concerned about just getting an IEP in place than in making the right decisions about a child's behavior and abilities.

Except for the lack of access to good specialists, and maybe the parental paranoia, I don't necessarily think these are bad things. A child who would have been called a late-bloomer or just very shy in the past may well benefit greatly from some help in the early years learning how to deal with verbal instructions and negotiate social settings. Some attention early on could lead to better success in school, fewer social problems later in life, better job retention, and all kinds of long-term benefits that you don't really think of when you're looking at a four year old who can't seem to talk to other children. Definitely not a bad thing.

On the other hand, I think a lot of parents go way too far. I participate in an autism messageboard and it seems as if every day there's a mother coming on with questions about autism--her baby likes to watch the fan or the light through the venetian blinds. Could it be autism? Her three week old newborn isn't smiling yet--is he autistic? Her 18 month old likes to play with cars and isn't speaking in three word sentences yet. Is it autism? People are looking for signs of autism everywhere and are worrying unnecessarily in most cases.

That said, autism is very real (even the milder forms) with a huge negative impact on a person's life, on the family, and eventually on society. My son is almost seven and barring a miraculous leap in progress I don't see how his future will hold anything other than a group home once my husband and I aren't physically capable of caring for him anymore. I'm thrilled that greater awareness is leading to more funding for research, and I hope that along with this we find more people entering the field and able to provide well informed diagnoses and treatment so that parents with concerns don't have to wait six months to see a specialist and three years on a waiting list for treatment!

Posted by: Sarah | January 29, 2008 11:05 AM | Report abuse

OT -- Occupational therapy. They help to work with fine moter, sensory and feeding issues.

Delays in scheduling appointments are a travesty because, depending on the diagnosis, they can impact long-term prognosis. Although intervention at any age can be beneficial; the younger a child is when they get the needed services, the more effective the services will be. For example, a special needs preschool environment may dramatically improve a child's ability to perform in kindergarten.

Posted by: Momof3 | January 29, 2008 11:26 AM | Report abuse

I have worked with children with autism and with children with special needs in general. What I have found is we're getting better at diagnosing autism. I can point to any number of patients confined to mental hospitals in the fifties and sixties who fit the criteria for severe autism, they were not diagnosed because autism was not as well known then as it is now. When I first started college and began the teaching track I worked with a number of children who were diagnosed as "Special Needs" who fit the criteria for autism, but again, autism was not well known by even the experts at the time.

What we need now is to recognise that autism is not the blanket diagnosis that ADD and ADHD have become. I too have seen far too many normal children on some very strong (scary) medications because they don't fit in. The trouble with our society today is the all encompassing need to put a label on each and every person and forcing them to fit into the form that is expected instead of accepting our children for what they are and finding out what they need from us to become their best selves.

Posted by: A Teacher | January 29, 2008 11:27 AM | Report abuse

To A Teacher: That's a problem with human society generally, not just ours. At least we've made some progress in getting rid of labels like "noble" and "peasant". We'll never get rid of the urge to classify and simplify the bewildering range of human variation, but we need to continue to resist the temptation.

Posted by: lurkette | January 29, 2008 11:52 AM | Report abuse

Sarah,

You made some very thoughtful and helpful observations about autism and the surge in awareness of the condition. I appreciated your thoughtful comments and observations.

I think that message boards and the internet community can draw in a lot of concerned parents who need answers, reassurance and sage advice. I hope that there are more folks out there like you that can provide it. It is also important for us to hear from you so that we as a society can better plan to address your children and their needs- into adulthood and beyond. I also hope that you can draw on support from other families.

There is so much disinformation and fear mongering out there(Jenny McCarthy?) that can make normal parents feel even more stress. In the end, we just want to do what's right for our children.

Posted by: Huckleberry Friend | January 29, 2008 11:55 AM | Report abuse

DadofTwo: A large-scale statistical analysis is much more meaningful than a limited sample size.

Using your logic, I know a lot of kids, maybe 100 including the ones at my kids' school that I know in passing, and none of them have autism, so therefore the 1 in 150 number is grossly overstating the incidence of it.

Not to mention that you totally missed fake99's point. What is the reason to have 20% of the topics on a general parenting blog about a disorder that affects relatively few children?

Posted by: Dennis | January 29, 2008 11:58 AM | Report abuse

"Her 18 month old likes to play with cars and isn't speaking in three word sentences yet. Is it autism?"

This cracks me up, because it coulda been me. My first data point was Ms. Chatterbox; so when my second data point only had a handful of words at a year, and much preferred cars and balls to people, I didn't know whether I should be worried. So I asked the doc, who told me he was within the normal range of development. Now, a year later, we can't freaking shut him up. :-)

The problem is that we get all the fear from the headlines, but none of the knowledge to understand the fine line between normal development and a problem, or to know what to do if our kid is on the wrong side of that line. Put that together with all the recent info on the importance of early intervention, and the dearth of doctors available, and it puts a lot of pressure on parents to judge quickly and correctly without having the knowledge necessary to make a good judgment.

Posted by: Laura | January 29, 2008 12:04 PM | Report abuse

"What is the reason to have 20% of the topics on a general parenting blog about a disorder that affects relatively few children?"

The reason is we are following an on-going series written by Mike Snyder about his experiences in this area...maybe you should just skip the days the series appears.

Posted by: CJB | January 29, 2008 12:23 PM | Report abuse

You should be applauded for being proactive in getting your child assessed. When our son turned 3 in 2007 we noticed he was increasingly having mini "panic attacks" and becoming highly anxious and hyper-sensitive to loud noises and other sensory situations. We chose to have him evaluated and he was diagnosed with Sensory Processing Disorder (SPD) and clinical childhood anxiety. The psychologist ruled out autism, Asperger's, ADD, and ADHD based on the tests performed. He sees a psychologist now every other week and a childhood occupational therapist every week and has progressed dramatically. We also now have a better understanding what to watch for that might trigger a reaction from him. If we had not taken these steps now, he could easily have developed low self-esteem and been shunned by peers for "freaking out" during fire drills or not wanting to use the potty or whatever it was that was scaring him. The evaluation also tested his IQ and he is in the highly superior range, thus reinforcing our believe that working with his teachers and theraptists together will help him reach his full potential. I know I would still be feeling like a failure as a parent had my spouse and I not taken these steps to help our child. Much of the expense has come out of our pockets, but the investment is worth every penny.

Posted by: Debra | January 29, 2008 12:24 PM | Report abuse

I think the piece should have opened with "I don't believe there is an autism epidemic" -- that would be a lot more straightforward than hinting around about "quasi-Munchausen by proxy syndrome" and putting the word "epidemic" in quotes each time you use it. These are ways of disparaging ideas without actually having to prove your case. And then you close asking whether the rise in autism is either hype, or an acknowledgment of a level that has been steady over the years. You put your own conclusions into the question -- how about the possibility of a real increase despite diagnostic criteria remaining unchanged, as many professionals believe?

As I read it, your child has developmental delays that are unrelated to autism -- hence you can relax and idly speculate that actually, that there is no increase in autism spectrum disorders. Other posters had a scare about delayed development in their own children, but things resolved over time -- hence they conclude there is no increase in autism spectrum disorders.

The problem is not "we get all the fear from the headlines", or "parental paranoia": it's that there are a lot of kids with neurological problems who need help. I'm glad your son is fine and getting the help he needs. For a lot of people, they leave that doctor's appointment not with reassurance, but with the new knowledge that their child has a serious, permanent neurological disability that is just beginning to make itself known. Please don't label awareness of actual autism spectrum disorders as "hype", so that those kids can get the help they need, as well.

Posted by: DC Parent | January 29, 2008 12:24 PM | Report abuse

Keep telling him he's sick in the head, and eventually he'll act it. People, and especially children, respond to expectations, especially those of their parents.

Posted by: Philautos | January 29, 2008 12:34 PM | Report abuse

Autism Spectrum is Hype.

80's hype was dyslexia, 90's hype was ADD, 00's hype is Autism

What will our DSM IV Makers come up with next?

This is ALL because our wonderful health system requires labels to get services and then the Insurance Companies STILL don't want to cover treatment.

Posted by: bloglady | January 29, 2008 12:42 PM | Report abuse

Huckleberry Friend wrote:
"I would like to hear from other parents who observed behaviors or tendencies like my son's self-stimulating 'Happy Dance'. I never for a moment thought he was on the Autism spectrum (and he does fine in school), but when I read about 'stimming' behavior among Autistic children, it got me to wondering."

My 6-year old son has a funny-looking "stimming-type" behavior too, and he's not on the Autism spectrum at all. (Unless an excessive fondness for poop jokes is a sign of a social problem- har har!) His particular behavior, which is rather unusual, actually had us running to a lot of specialists to rule out that it was a symptom of something else.
Anyway, long story short, we finally found a doctor who could definitively tell us that he's a normal boy with a funny behavior.

And I was relieved. I certainly didn't _want_ to get a diagnosis of a real problem. And I don't think that other parents do either.

Posted by: Anonymous | January 29, 2008 12:44 PM | Report abuse

Mr. Snyder,
You may not know it but you were robbed of something - and it's not the $300 you paid for the Developmental Pediatrician.

You were robbed of not only peace of mind -but opportunities to appreciate those differences in your child that make us all unique. (I am not saying you don't appreciate that, I am just saying you should have been free to enjoy them w/o any underlying fear of a serious lifelong disability such as Autism).

All of the media stories on Autism Spectrum Disorders and the Warning Sign Check Lists on every baby site and in every baby book, place fears in every parent - especially when your child is atypical or a little different.

We as a society should be ashamed of ourselves for robbing all those parents of the joys of children with difference and those little quirks that make them so cute.

Posted by: ParentBloggin | January 29, 2008 1:03 PM | Report abuse

"I know far fewer than 150 children, yet I know at least 6 children with rather severe Autism. Neither of my children have Autism, and I'm not in Special Ed."

Hurray for you. Anecdotal evidence is just SO important. Leave us alone and go back to your minimum wage job at Friendly's.

Posted by: Anonymous | January 29, 2008 1:06 PM | Report abuse

"How do you feel about the autism "epidemic"?"

No opinion, and minimal or no interest.

I'm here on Tuesdays because I have a 15-y-o son who has autism. I'm a bit further down this road that Mike (and others here) are traveling. Ten to twelve years ago, my family didn't have a resourse like this - we were making the journey alone. Now, we have a network of other families through our school system's Spec Ed program for our son. I just want to share what I've learned, and encourage other families with special needs kids to talk to each other, share strategies and successes, and help each other help our kids. And for whatever handy tidbits of info I'll pick up too, of course.

"Is it being overhyped, or is acknowledgment of the disease's pervasiveness long overdue?"

Again, I don't know, and don't have a strong opinion.

I remember the first time I read the DSM-IV criteria for Aspergers, and *knew* that if the diagnosis had existed 40-plus years ago, that I would have been diagnosed, and might have benefited from some sort of services. It was a revelation - I wasn't just a "weird" kid. Once or twice a year I wonder where that life could have taken me instead. Who would I be today, and where would my life and career be? But an anecdote like mine doesn't demonstrate historical under-recognition or under-diagnosis. It's just an anecdote.

"Also, doesn't lack of access to diagnostic specialists fuel parental fear?"

That's a definite yes in my experience.

It took until older son was 6 1/2 to get that autism diagnosis. During the 4 1/2 years between our first questions at his 2-year well-child check-up, and finally getting a real, meaningful diagnosis, we didn't know what we were dealing with, we didn't know how to help him, and we didn't know where life might take him. There were a lot of fears and stresses from not knowing. With the diagnosis came some grieving for what-might-have-been, but *finally* we had a useful tool to understand him and help him. We had a roadmap for getting from where we were to opening up the whole world for him.

To summarize, the rates of autism-spectrum disorders appear to be increasing for whatever reasons, and amateur speculation about why isn't useful to anyone. Recognizing the increases, and dealing effectively with those affected - my son being my first priority - is all that matters to me.

Posted by: Sue | January 29, 2008 1:25 PM | Report abuse

I don't think 30 years of experience at the leading medical institute in the world is an amateur.

He says, "The explosive increase that has been claimed is almost certainly not true." "The numbers, if they're rising, are not rising very quickly, if it's going up at all," he says.


Get the facts regarding the autism epidemic. It's not fair to place fear unnecessarily.

Posted by: The Facts | January 29, 2008 1:34 PM | Report abuse

My 2.5 year old has a slight movement disorder- nothing major, and no other symptoms. But the first neurologist we took her to see (at 1.5) basically told us it was autism, even when I pointed out to her that our daughter was totally normally developmentally and had no other symptoms. Later, this dr sent us a copy of her report for my DD's files, and it was entirely full of lies about my DD's behavior and condition (ie, that I had told her she had frequent, uncontrollable tantrums). Needless to say, we never went back to see her again. The next neurologist looked my DD over, ran an EEG to make sure there wasn't some kind of electrical problem in her brain, and told me he sees this all the time and she'll probably outgrow it by the time she's 4.

The first dr was obviously trying to force an autism diagnosis on a developmentally normal child. The whole experience was very disturbing, and left me even more skeptical of the medical profession than I already was.

Posted by: va | January 29, 2008 1:57 PM | Report abuse

When Mike wrote his first article, I chimed in saying that this "epidemic" is overblown. Everyone jumped on me, saying I didn't know what I was talking about. I, too, have a 3 1/2 year old who was labeled by the county as being speech delayed. To make a long story short... he is just about talking how he should. It is a different world today; kids are not allowed to develop at their own pace. I don't know why this has happened. Could it be because "super" parents want "super" kids. Let's leave them alone!

Posted by: annapolis mom | January 29, 2008 2:12 PM | Report abuse

No, I DONT think that autism is as common as reported. Additionally of the five children in my life who I know actually are autistic, there was serious drug abuse among the parents in their teens. That ALL FIVE had former druggie parents is surely more than an anomaly. Why is no one looking at the relationship between parental drug use and autism and so quick to blame everything from aluminum foil to measels vaccines? Maybe because it galls parents to get a big cosmic I-told-you-so and maybe take away all the other things they can blame besides themselves?

Posted by: Tunatofu | January 29, 2008 2:14 PM | Report abuse

I do think that we are detecting more of an already existing problem. I know a family, who like Sue, realized that a parent had Aspergers (and hence reasons for social issues that plagued his childhood) only after a child was diagnosed. I have more personal experience with ADHD and do wonder about how some friends I grew up with who were 'behavior problems' would do now.

Without that ADHD diagnosis my child would have been one of the wild uncontrolable kids that no one wants in their child's class, but the whole answer was much more complicated. While preschool and K teachers were recommending anger management, we found that ADHD medicine along with counseling eliminated the tantrums. You see he, at 5, was already experiencing self-esteem issues. Well, what do we know now that he is in 4th grade (and better behavior than many in his class)? The ADHD diagnosis was real, he is intellectually very bright but has a learning disability that affects writing. The attempt to be good in school with all of his discrepant good and bad issues was leading to the tantrums.

Is all good now? Well, we still struggle with the school because in our school, the smart kids don't get help. No he doesn't need special ed, per se, but just help with the writing tasks (he has real difficulty copying from the board, for example). We are told he just doesn't want to write. while yes, he isn't failing it still is a source of stress that will only get worse with time because he is not learning the writing skills he needs to keep up with his intellect. He has learned to control himself but now goes to the health office 'sick' if he is overstressed.

I think all the 'overdiagnosis' makes it a better era for him than for the kids that I grew up with, but we still have a way to go.

Posted by: danak | January 29, 2008 2:21 PM | Report abuse

"I think it's fairly well-established that most, if not all, of the surge in autism cases, are the result of more lenient diagnostic criteria." I hate to even repeat it in reference.

This quote is absolutely infuriating because when you when you look at the OVERALL rate it is SOMEWHAT true, but not at all true when you look at the incidences of the more severe cases (which you can't miss and parents don't even need a doctor to confirm to us the changes we can clearly recognized in our formerly healthy children ).
PLEASE HERE THIS FACT: While some of the milder cases might have gone unnoticed/diagnosed in the past, there is a very real rise in REGRESSIVE autism rates, where the child develops normally, babbles has words, even sentences and then LOSES words, loses eyecontact, starts behaving differently, loses interest in toys/books/people, starts having seizures, etc.
There are many so facts about the autism NO QUOTES! epedemic that you are ignoring. Autism affects boys at a rate 4 times that of girls...the exact same rate that mercury poisoning affects boys over girls (NOTE TO SCIENTISTS WORKING ON THE MYSTERY OF AUTISM: estrogen protects against the toxic effects of mercury and testosterone makes its ill-effects even worse at a ratio of 4:1 for severity of symptoms).

Readers, please understand that there are "clusters" of autism (and ADD and other illnesses affecting the nervous system/brain) in zip codes near coalburning power plants. Surely you've heard the warnings: our waters are now so polluted that fish contain more mercury than it is safe for children,pregnant women to eat on a regular basis.
Please wake up from your safe perch now that you think your kid is spared. Don't feed him pesticides on his fruits/vegs, give him only organic milk, filter the mercury and lead out of his water.

When polio was an epidemic no one tried to say it was not "real." They did everything possible to prevent it, including keeping their kids out of the way of public germs, public swimming pools.
There is no denying that the individual SYMPTOMS of autism ARE epidemic (synsory problems, OT problems, speech/language delays, cognitive impairment, lack of social skills/interest, fine &/or gross motor problems, executive planning problems).
While you're thanking God that your son's system was healthy enough to recover from whatever assualt initally created his symptoms, remember those of us whose kids were not that hardy. (There, but for the grace of God go you.)
And remember, THERE ARE NO SYMPTOMS WITHOUT A CAUSE. Just because YOU don't happen to know that 1 in 150 child that has autism does not mean that he and his symptoms do not exist...they might be clustered near a powerplant or polluted water source.
Come join me in my world, I can introduce you to far more than 150 kids with autistic symptoms that range from mild (ADD-like) to so severe you will leave the room sobbing.
Stop blogging about autism until you do just a little bit of research. As the saying goes if you're not going to help solve the problem (i.e., the "mystery" of autism...which is no mystery, it is due to genetic predisposed inability to handle toxins in our environment that make it into the brain via contaminated water, air, food, vaccines) ...then get the hell out of the way of those who want to devote appropriate resources to prevent it from happening to others: your child, your grandchildren, your parents (in the form of Altzheimers).
Do you have ANY idea how frustrating it is to deal with my son's severe symptoms (and he's considered relatively high functioning) and to hear this copout argument mentioned in EVERY story in the media. It is simply false that the epidemic isn't real...(it's just hyper/worried/scared parents looking for symptoms).
I feel like I am just one lone voice in a sea of those who celebrate that they are personally "safe" from this epidemic...Well, I celebrate your freedom too! I used to be free of autism too. My nephew has ADD..we thought that was "bad" but I can tell you it absolutely does not compare to the kind of autism that IS growing and that is the kind that is alarming.
My "normal" daughter at age 10 knows far more than ANY of the posts I've read above. She has some symptoms of ADD (don't we all? We all live in a polluted world where toxins assault our systems) but these mild symptoms donot compare with the symptoms that come together to create a diagnosis of autism in a child. It is NOT given lightly by physicians or heartbroken parents.
I wish I could say I feel better getting these comments down in the same column as your misleading ones...but I don't. The issue is complicated, my post is long and I am certain few people who are blessed with healthy children had the patience to read it.

Posted by: Sgoewey | January 29, 2008 2:50 PM | Report abuse

I keep thinking that on the one hand we have gotten obsessed with normalcy. A quirky kid isn't necessarily disordered.

But on the other, we might in past just have let people drop out of school or suffer and simply labelled those kids "bad". And now perhaps a lot of them are suffering or in jail or unable to work, where some intervention might have helped.

Posted by: Shandra | January 29, 2008 3:13 PM | Report abuse

The inability to get diagnosed or get in with any specialists in this area is crippling. We moved here from another state where the wait was bad, but here it is obscene. We are talking about children who need to be started on a regimen of therapies as soon as possible: 18 to 24 months from first call to getting an appointment is just completely ridiculous.

As for the "overdiagnosis," I think if we were to take anything in the DSM that doesn't involve a positive genetic or blood test and ask 3 professionals whether any particular kid qualified for the diagnosis, we'd get three wildly different answers in all but the most severe cases. One doctor said that my son, who is mildly autistic, was just oppositional and had low attention. This is the most obedient child I've ever met. He just bit anybody who touched him because he was terrified of being touched. 5 years of occupational therapy later, he's doing so well he probably wouldn't qualify for a diagnosis now. Oh, and heaps of speech therapy later, he's very close to on level (except for some pragmatic things). He's such a wonderful child, always has been.

To the person who says that children who relate or display a range of emotions aren't meant to be diagnosed on the spectrum, I say POPPYCOCK. Every parent of an autistic child I know sees a range of emotions from their child. They just don't express them the way that normal kids do. If my son is jumping up and down on his toes, flapping his hands like crazy and screeching -- that's one VERY happy kid! He loves me, which he shows by butting his head into me while humming. He gets scared and angry, which he shows by chewing through his clothes and/or lashing out. But as he gets better at speaking, we're getting him more and more to TELL us what he is feeling rather than having to treasure hunt for clues.

People, these are children. Each of them is different. Even the ones who have the same diagnosis will have different strengths and weaknesses, different personalities, different triggers. The label does a disservice in that we expect similar things out of people with the same label, when the predictive value of that is not universal.

I don't know a lot of parents who would go looking to label their kid to get some "advantage." I wish that I didn't have to label my kid in order to get services that he needs. But the truth of the matter is that if you don't know a little about him, and don't have the protection of a label, when he head-butts his "friends" at school, he'd be down in the principal's office. Or when he gets extremely agitated because he has to be in the middle of the line of children, rather than at the end? Or cries because something in his lunch is different than he expects, flies into a rage, and can't eat any of it? Has to be watched constantly because he will walk into traffic or take any stranger's hand and follow them?

Anecdotally, Sensory Integration Disorder is definitely increasingly prevalent. I don't know why. Also I know so, so many boys in speech therapy. But I would like to know why it is that, even now, the fact that my kid has an autism diagnosis arouses such fear and loathing on the one hand, and a suspicion that it is just something wrong with me on the other.

Posted by: bad mommy | January 29, 2008 3:21 PM | Report abuse

Hmmmm.......I must have just imagined that at 15 months my son started crying and screaming when his 3 year old sister came within his sight (and other people who were not Mom), I must have imagined that my kid didn't point to anything, stopped waving "bye", never wanted to interact, only wanted to line up his toys, was silent except for an odd humming sound at times until being placed on a GF/CF diet and starting biomedical interventions at 21 months. All this despite 5 months with early intervention specialists (I'm fortunate - there was no wait for EI in the Houston area I live in.) Even with great strides, my now 3 year old son still can't participate in a typical two-way conversation with anyone, and altho he is finally happy playing with his sister, he still has no interest in other little kids. He understands laughter, but doesn't understand when someone is sad or angry (altho he does understand the word "no" when applied to him.) But all that could be just a typical delay, right? Nothing to be worried about. I personally know several other moms whose children have similar stories and have also now been labled as having autism, like my son. There is NO WAY I or these moms would lobby to have our children labled autistic. Do those of you out there who think that autism is exploding simply because of an expanded definition really think that parents are just now hyper-sensitive to developmental delays or is it just POSSIBLE that life at home with your child is so out of the range of normal that you can't help but notice it - even when trying desparately to deny the facts. Prior to around 1937, doctors are on record as NEVER having run across a child with autism. Yet, as time went on, they began seeing a few children with the same characteristics. Since the 80s, more and more children have the same issues - HOW was this not noticed to the same extent before? Again, is it POSSIBLE that something in the environment, what we have put into our bodies and our kids bodies has changed? Is it POSSIBLE that the 30 year expert is WRONG?!?!?!

Let me say that I love and accept my son - he has been a true blessing to our family. However, I hope and pray he will conquer his communication and social issues so he can move forward in life. I am aware of two men in their 40s who I would classify based on what I know about autism and their lives as having Asperger's. One man is very well employed, but has a limited social life and has never had a relationship. The other man is employed in a minimum wage job (altho he's highly intelligent) and has never had a date, and probably never will. Both men's social skills are severely lacking. Does this mean their lives are without meaning? No. Do I want to avoid their situations for my son? Yes. Am I irritated by people who think there is not a problem and that parents are just worriers? YES. Walk a mile in our family's shoes before you criticize.

Posted by: texasmom | January 29, 2008 3:48 PM | Report abuse

Oh thank you texasmom!
Yes, you said it all so well.

I wanted to add a P.S. to my earlier post about fingering Mercury as the prime suspect/culprit for epidemic... you can google the research compiled by Sally Rimland...fully 80 (eighty!) of the symptoms of mercury poisoning are virtually identical to those of autism. Let me repeat: 80 symptoms of autism are the same as mercury poisoning. I don't believe in that kind of coincidence.

Mercury pollution has reached the critical threshold that is triggering this epidemic (and it didn't help that mercury was placed in infant vaccines and they got a shot of it on day 1 of their lives w/ the hepB vaccine. It was only recently "removed" (not really, just allowed to phase out) and replaced w/ OTHER contaminants to preserve the virus agents..and actually mercury is STILL in flu vaccines, so don't give them to your toddlers, no matter what your doc "recommends".

And yes, I adore my son, he's so cute and he's our hero, he has to work harder than the rest of us at absolutely everything. His problems put so many other parental, social, job complaints (including my own) into perspective. He's God's gift to us, has forced us to grow so much in trying to help him, understand him, get help for him...life overwhelmed by autism is so difficult (so expensive too!), but it is not without its blessings.

Posted by: sgoewey | January 29, 2008 4:14 PM | Report abuse

Parental Drug abuse problems? Are you KIDDING? No, I do not have drug abuse problems and never have, neither do the women at my church who have autistic kids...why don't you go read up on the fridge mom theory and blame it on mom some more. Geeezzz.

Posted by: sgoewey | January 29, 2008 4:24 PM | Report abuse


tunatofu why the mean spiritedness towards parents who are already looking for ANY and EVERY possible cause, including our own diets/meds/dental work/conditions?: ("Maybe because it galls parents to get a big cosmic I-told-you-so and maybe take away all the other things they can blame besides themselves?" )
with your logic if you abuse drugs in your teens, you get autism when you have a child 10, 20 years later and you can blame only yourself. uh maybe you haven't noticed all the ppl who abused drugs (like practically the entire population of teens during the 1960s) ... who DID NOT have kids w/ autism...and remember, those of us with a child (4x more often, a boy) also have another child who doesn't have it. Explain that with your "blame everything and everyone but yourself" attitude.

(I think I know you, aren't you the one I've seen in the grocery store, you're the one with the judgmental look when I'm trying to put the groceries on the checkout belt and my son is behaving "inappropriately" due to my bad parenting.

Posted by: sgoewey | January 29, 2008 4:42 PM | Report abuse

Autism Spectrum is Hype.

80's hype was dyslexia, 90's hype was ADD, 00's hype is Autism


Posted by: bloglady | January 29, 2008 12:42 PM

I remember when the ignorant and uninformed thought that Agent Orange syndrome and post-partum depression were myths, too.

Posted by: Not a Druggie | January 29, 2008 7:03 PM | Report abuse

How come it is that so many parents of supposedly "disordered" children believe that corporal punishment doesn't help and are adamantly against it... even though they'll admit they've never even **tried** it?

How come it is that so many parents of supposedly "disordered" apparently can't find the happy medium when it comes to age-appropriate parental involvement in the child's life? They either ignore the child completely, or they are perpetually "hovering", reminding, and doing tasks for the child that the child is more than capable of doing for him/herself?

How come it is that so many parents of supposedly "disordered" children can't tell the difference between discipline and abuse? How come they either consider all effective discipline methods "abuse" and refuse to use them, or routinely beat the living hell out of the kid and call it discipline?

If it has nothing to do with parenting skills, how come it is that one of the most successful methods for 'normalizing' Aspergers and HFA children (applied behavioral analysis) is basically a very formalized version of traditional parenting, complete with rules, expectations on the child's behavior, consistent discipline, and rewards? If you were to put the methods of ABA in layman's terms and described it to any elderly grandmother, she would blink in surprise and say, "Honey, I could have told you that. We knew about all that years ago."

Aren't these things interesting?

I've always thought so. Heh.

Posted by: Hazel | January 29, 2008 7:25 PM | Report abuse

"That ALL FIVE had former druggie parents is surely more than an anomaly."

Oh, Lord, your sample size is five kids? Honey, the plural of anecdote is not data.

Posted by: reston, va | January 29, 2008 7:49 PM | Report abuse

Please forgive me for putting "autism" into quotes once in my post. The "epidemic" is arguable. The disease is certainly not. I apologize if I've offended. Also, I'm very grateful for all of the wonderful comments.

Posted by: Mike | January 29, 2008 7:50 PM | Report abuse

Hazel, you obviously have not the first clue about ABA. ABA is mostly discrete trials and rewards for the child finally completing the task. Trust me, your grandmother would be appalled at how many times she had to repeat herself to try to get her child to do what is a simple request for the typical child.

I'm not even going to speak to the remainder of your insulting post, except to say that a special needs child is not a "disordered" child as you refer to them.

Posted by: texasmom | January 29, 2008 8:12 PM | Report abuse

Thanks again texasmom. You may have taken the highroad, but I'm so stunned at her comments, I can't.
"Heh," Hazel, clearly you do not know the first thing about neurological disabilities or disorders and have no business weighing in with your insulting, ignorant post that manages to denigrate both parents and innocent, struggling children who have very real special needs (why don't you just ask for a copy of their brain scans to make SURE they have a disability and are not merely misbehaving?) We parents are working night and day, quitting our jobs, refinancing our houses, fighting with insurance companies that won't pay (you sound just like them actually) We are overwhelmed and (surprise!) imperfect human beings who out of love for our kids are struggling with something so big that we will try ANYthing and spend HUNDREDS of THOUSANDS of dollars on ABA, speech, etc. Do you think we would waste our money, mortgage our future this way if we could just go ask grandma for her suggestions?
Good God, your comment was so toxic that I will quit reading/responding to these blogs(no matter how much I want to raise autism awareness/understanding) because it makes me realize just how futile it is to beat my head against the wall trying to educate people like you...

Apparently you are like many people who do not actually have a special needs child but know exactly how much better they'd handle such a child if they did.

Well FYI, add my anecdotal info to your research: spanking my son only excites him all the more, repeating the behavior to get the same big, exciting reaction. So yes we, like many, have "tried" corporal punishment, if you can all it that and we know that it is counter productive. In fact, we have to jump in when his 82 year old grandfather "knowingly" tries to "discipline" him in this (ignorant) manner to "show him a thing or to."
Hazel, you need to go take a compassion class. Please. Obviously whoever disciplined you, failed to instill life's most importantlessons in empathy, compassion, understanding and the ability to give people the benefit of the doubt.
Go back and read your toxic comments and ask see if you don't feel just a little ashamed ... maybe you were just having a bad day, but I hope I never meet you.

Posted by: sgoewey | January 29, 2008 9:15 PM | Report abuse

ep·i·dem·ic (ěp'ĭ-děm'ĭk)
Spreading rapidly and extensively by infection and affecting many individuals in an area or a population at the same time: an epidemic outbreak of influenza

Autism is Very Real. The new Autism Spectrum is VERY BROAD. New Diagnositc Criteria account for increased diagnosis.

Not an epidemic.

Posted by: Anonymous | January 29, 2008 10:48 PM | Report abuse

Sgoewey,
Good luck and best wishes to you and your family. Like you, I was drawn into today's "discussions" because I want to help increase understanding. Lately, it HAS been toxic reading the comments on this blog and I don't understand the vitriol directed at parents and their kids. I told myself last time I would not look again, but obviously have found myself drawn in. (Nice reply to Hazel btw!)

Until the next time, maybe :>)

Posted by: texasmom | January 29, 2008 11:08 PM | Report abuse

2 years ago, my youngest son was diagnosed with autism (he had all the signs: extremely limited vocabulary, poor social skills, poor developmental skills). Even though he was barely 2 years old, he qualified for intensive therapy and schooling. My wife and I attended classes on how to "parent" a child with autism and have put these practices to work. We have 3 other children but have learned that we cannot treat all 4 the same way.

It is a simple fact that our youngest child's brain does not act/process/react the same way as the other 3 kids or like those of other "typical" kids.

As a result of 2 years (and counting) of intense therapy and schooling, my son has made massive strides. Even though he still goes to PEP (pre-school education program for special needs kids...he's not even 4 yet), they've actually started putting him part-time in a "typical" pre-school program to help spur him along.

2 years ago I knew nothing about Autism 2 years ago (other than I had seen Rain Man), but now my life is consumed by it. And it is fantastic to see the awareness grow, via Cure Autism Now or any other entity.

The bottom line is that I'm sure there are people gaming the system, people who "technically" qualify that might drain the system resources away from those who really really need it. But that is a minor side effect in the face of the tremendous increase in awareness and fund raising and discussion of such a potentially devastating disability. Obviously there are so many who suffer "mild" conditions but so many suffer through the severe symptoms that they deserve our utmost attention.

Children with autism are trapped inside a body that struggles to process things the same way others do. It is my duty as a parent of a child with autism to help raise awareness so that more and more people (and my son) will have a better chance of being let out of their trap.

some of the postings on here are really disturbing in the criticism/cynicism/negativity of their approach. I hope it is simply a vocal minority.

Posted by: Dream Out Loud | January 30, 2008 8:47 AM | Report abuse

Let me repeat: 80 symptoms of autism are the same as mercury poisoning. I don't believe in that kind of coincidence.

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Then you haven't gone to med school. Itching, coughing, runny nose, hives, and related symptomic reactions can represent hundreds of different diseases because our body only reacts in so many ways. The idea that there is a relationship of 80 or 100 symptoms between multiple diseases, syndromes or conditions is not uncommon in medicine.

Posted by: Anonymous | January 30, 2008 2:08 PM | Report abuse

Upon reading the many comments on this list, I am saddened that so many who want to believe that autism rates have not increased over the past 20 years have such certainty in the views they express. While the diagnostic criteria may have been changed, the numbers of children with
autism are simply too great to ignore. Does this mean that we should ignore the increase? Does this increase give us license to ignore the problem?

Why are we not asking why so many of our children are sick? Autism rates up, juvenile diabetes rates up, ashtma rates up, bi-polar rates up, and the list goes on.

The increases in autism are real. Unfortunately, the medical community has only been able to find behavioral markers for autism. That is to say that more children are exhibiting behaviors that indicate the child is autistic. Too little is done to look at the autistic persons biological status. Hence, there is so very little able to be done to help these people.

While we argue or discuss whether or not there really is an "epidemic" of autism, our researchers, doctors, our politicians and leaders in the fieled of medicine should be ashamed of their lack of interest and lack of action.

For those of you who have been bleesed with healthy children that think there really is no increase, can you at least see the struggle that families with an autistic child face? The rate of increase in autism in that family is huge.

My child was meeting or exceeding developental milestones until about 20 months. His vocabulary was extensive for someone of his age. And then he started losing language, and having GI issues, unexplained rashes, and after about 90 days, lost all of his developemental gains. Regressive autism is real. And the autism rate in my house went up to 1 in 3. Until recently, the "experts" refused to aknowledge that there was such a type of autism. So the "experts" are sometimes mistaken.

Posted by: Scott | January 30, 2008 6:22 PM | Report abuse

Autism is real. Nobody doubts that.

However, You simply can't ignore the fact that the Autism Spectrum was CREATED in 1994 and comparing data regarding diagonsis statistics prior to that is irrelevant.

You also, can not assume that because one does not buy into the idea of autism being an epidemic, means that they do not have a child with autism or have a special needs child. That is simply not the case. Caring for a child with developmental delays and difference is an extraordinary amount of work. I can attest to that - but it doesn't mean that there is an epidemic nor does it mean that autism doesn't warrant attention. As many other conditions that children experience do also need attention.

Think about ALL the people with high functioning autism that didn't get the label because they were born prior to 1994. Just think about it.

Posted by: Anonymous | January 30, 2008 7:56 PM | Report abuse

Our health care system is seriously flawed, which is why we need labels for little children. How sad is that nowadays we will quickly give a child a label of autism when they have a non-specific pervasive developmental disorder. Kids with PDD - NOS are mainstrained and functioning just like any other kid - thanks to early intervention. Yet they will carry with them the Autism label the rest of their life. Suppose they want to be a surgeon, or miliatry officer or police officer. What will those hiring do should they find out they were labeled autistic?

I think the DSM IV makers didn't think it through when they created the dumping ground. Why couldn't they have called the autism spectrum something different other than autism - which conjurs up the most extreme situation.

Posted by: Anonymous | January 30, 2008 8:12 PM | Report abuse

I am quite shocked to see all the misinformation presented in these comments. I'm surprised no one has mentioned one of the biggest reasons for the increase in diagnoses, the fact that until recently a diagnosis for Austism didn't exist. These people were just seen as weird, or in more severe cases, institutionalized. Now there is a label, and better yet, the opportunity for therapy to help people with Autism lead more normal lives.

I think research should focus more on therapy techniques to improve the lives of people with Autism instead of searcing for a "cure".

And for the author--if your son was not speaking as he should at that age, why did you not seek out a Speech-Language Pathologist for an evaluation? Most have extensive training in Autism and other developmental disorders.

Posted by: Anonymous | January 30, 2008 8:12 PM | Report abuse

Autism Epidemic a Myth?

http://www.time.com/time/magazine/article/0,9171,1576829-2,00.html

Grinker, whose 15-year-old daughter is autistic, concedes that there's something reassuring about the idea of an epidemic: "Thinking about any disorder as an epidemic is easier than thinking about it in terms of multiple causes, shifting definitions and a scientific reality we are only just beginning to understand." Besides, if a disease suddenly spikes, it seems more plausible that the increase could be reversed--if only we could find the mysterious environmental trigger. With autism, though, that hopeful scenario seems just too simple.

Posted by: a myth | January 30, 2008 8:38 PM | Report abuse

The *appearance* of empathy, compassion, etc. are necessary, in order to better manage people in a social situation. The *actuality* is not. This is a mercy, considering that displays of empathy, compassion, etc. tends to vanish like the morning mist the second it stops directly or indirectly benefitting the one who would otherwise be making that display.

On Applied Behavioral Analysis, it really makes me wonder just how ill-informed some of you people are, if you think it's really all that different.

Parent: Why, what's that? What's that, Jenny?
Jenny:
Parent: Yeah, it's fun! What is it?
Jenny:
Parent: Tell me what it is, and we'll play!
Jenny: Ball!
Parent: Yay! You're such a smart girl!

A few months from now, it'll be making Jenny point out that it's a RED ball. A few months after that, Jenny will be prompted to distinguish between the RED ball and the BLUE ball, and that the red ball and an apple are the same color, i.e. red. After that, it's green crayons and green grass and green towels, blue balls and blue sky and blue cups, red apples and red balls and red pot holders, and so on. Thus, Jenny learns. Most parents do this sort of thing with their children naturally.

ABA is basically doing this same sort of thing with various behaviors while keeping a spreadsheet. How is this much different from making a child look you in the eyes, rewarding him for successfully doing so, and next month making him look in your eyes AND say "Hi." before you'll reward him for it? Both are successive approximations of behavior... the first aimed towards teaching colors, the second aimed towards teaching the most basic of social skills. The only real difference is in what it is designed to teach.

If there's one thing that people with Aspergers and HFA seem to instinctively understand, it is ordered, systemized patterns. They observe items of interest, sometimes doing little else for hours on end. They frantically seek the predictability of an ordered system, and become really upset if they can't figure out the pattern it is operating upon.

At base, you've got a kid who has two strengths: s/he's capable of displaying a nearly superhuman attention span, and s/he has an innate love of order.

Why do many parents of such children seem unable to capitalize on these traits, when it comes to teaching the rules of appropriate behavior?

Posted by: Anonymous | January 30, 2008 10:56 PM | Report abuse

thank god you deniers aren't standing in the way of my son getting therapy. You may be vocal but you are certainly in the minority.

Posted by: Dream Out Loud | January 31, 2008 10:06 AM | Report abuse

"Why do many parents of such children seem unable to capitalize on these traits, when it comes to teaching the rules of appropriate behavior?"

When you have walked a mile in my mocassins, you would know the answer, and not need to ask the question. Since you haven't walked in my shoes, I doubt that you could understand the answer.

Posted by: sue | January 31, 2008 5:38 PM | Report abuse

I have a friend that I met online that has an autistic child, she had sought me out because of my activism with autism awareness. Anyways, as I was writing to her, I encouraged her to try and see the wonder in autism. She was puzzled by this, she wondered what wonder? It occurred to me that this a very common statement, wonderful pictures are abundant making this statement a sort of slogan for the autism awareness movement. It also occured to me that it not always easy to see the wonder when your child is having meltdown after meltdown about seams on socks and and noise. It is hard to see the awe in autism when your child bangs their head against the wall and bathtime is like world war III. Is this a cliche or wishful thought?

I will say that I know it is hard, and I am blessed that Ryan is so high-functioning. I marvel at those of you that love without limits and patience so in abundance. I think that if I never heard the words Mama, or I love you, I don't know how I would handle it. I would like to think I would still be as good of a mother or better for him but my soul would die just a little.

My son is my best friend, my soul mate and the light of my life. I know that he is the funniest person I have ever met. He is so witty and charming at the same time he is so obvious with his manner and delivery that I know he is full of baloney. I marvel at the genuis while laughing at the genuinely funny delivery. He has a sweet, little voice that sounds musical to my ears. He talks alot! Too much but I love it. He is funny, and interesting and so sweet. He tells me he loves me about a million times a day and lives to make me laugh. I live to make him laugh. He is a gift from God as all children are but God picked him out especially for me. He knew I was just the mum for him and he was just the baby for me.

And I was silently grateful as my online friend asked me did I have any advice on head banging. I don't want to make anyone feel bad for feeling some resentment towards their child. I am not saying that my friend does but it is real and human. Autism is a gift but it is a puzzle, an extremely tricky, million piece puzzle. No two are alike and something that may work for one child will send another into sensory overload. I would offer this advice to her and anyone else. This is not easy. It is damn hard and you need to cut yourself an enormous amount of slack. You are doing a great job! Don't feel guilty about your feelings and thoughts that may not be so nice, acknowledge them, accept and learn from them. I have honestly learned more from those moments when I didn't particularly like this little person who I love with all my heart. I learned patience, consistency and they have made me a better mother.

I would then say, as hard as it may appear try to get inside their heads, poke around in there and find out what makes them tick. What does he think about? What are his views on Dora or the Backyardigans? What makes him smile and light up at, with the very mention of it? I try very hard to see things as he would see them and marvel at how his mind works. I also let him know how much I love him and adore him. How proud I am of him and somtimes it makes me cry. My love and pride overwhelm me. He asked me once why I was crying? I told him that I was crying because I was happy. He said, "That's nice, Mom". Later, he was upset about something and I asked him what was wrong and he said; "I'M NOT CRYING BECAUSE I AM HAPPY!!!!!!!!!!!!!!!!!"

Posted by: Anonymous | April 10, 2008 2:07 PM | Report abuse

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