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Living with Autism

Jesse and Ana Mojica had all the hopes of most parents when they had their first son, Adam, 8 years ago. Jesse expected he'd have conversations with his son, see him go to school, do well, get married -- the normal flow of life.

But when Adam was about 1 1/2, his language started to disappear. He became sensitive to foods. At his second birthday party, he wouldn't go into the party or play with the other children. At a doctor's appointment, he ran back and forth and couldn't focus. This was the beginning of the official diagnosis of autism.

With the Centers for Disease Control's latest report showing that 1 in 150 kids have autism spectrum disorder, the media has been providing more glimpses into the lives of people with autism. In today's Post, author Roy Richard Grinker writes that research on autism is growing and the mysteries are lessening. (Grinker's answering questions live at 11 a.m. today.) Last week, the New York Times magazine ran a touching piece about siblings of autistic children. Through YouTube, CNN found Amanda Baggs, an adult living with autism. Two weeks ago, the Today show featured Jason McElwain, an autistic teenager who scored 20 points in his first-ever high school basketball game.

So what's life like for Jesse, Ana, Adam and his 4-year-old brother Miguel? Having a child with autism means navigating a world of special needs, one that Jesse describes as lonely at first until you find advocacy groups, such as Autism Speaks and the Autism Society of America. Adam's reality is so different than normal children that their friends couldn't understand what they were going through. These are people that Jesse and Ana no longer socialize with. Instead, their world revolves around other families with autistic children.

Adam needs speech therapy, occupational therapy and applied behavior analysis, which involves repeating tasks until the child learns them. Adam has sometimes missed necessary therapy because therapists have been too overbooked to work with him. His parents have paid $35 per half hour for speech sessions themselves.

To save money for Adam's needs, Jesse and Ana gave up their apartment and moved in with Ana's mother. They keep decorations in the house simple. Noise and visual items can overwhelm Adam, who's been known to scream in new places.

Adam understands what's said to him, but can't talk back. If he wants something, he'll point to it in a book of images. If he wants to go outside, he'll grab Jesse's hand and point to the door. This kind of "talk" has taken years for Adam to develop.

Adam's a loving, smiling child who gives hugs and kisses. His favorite game is playing tag. But he has few play skills and few friends. Jesse describes Adam's best friend as his brother Miguel, most likely because Miguel is in his face all the time. Though Miguel is the younger brother, he acts like the older one. He talks for Adam and keeps an eye on him. When Adam needs help, Miguel is the one who finds his parents. Jesse and Ana worry about giving Miguel enough of themselves. They struggle to take time alone for their younger son.

Despite its challenges, Adam's autism has strengthened Jesse and Ana's marriage. They find time for each other by staying up late, talking. When they go out, their social life revolves around autism. "Going out to dinner, the movies, that's not really a possibility," Jesse says.

Jesse worries about what will happen when Adam grows up and becomes an autistic adult. "I can advocate for him as long as I'm alive," Jesse says. The thought of putting him in a group home haunts him every day. "That's not anything any parent wants, but it is a necessity. I worry about people treating him badly, misunderstanding him. I want him to be loved and happy."

Jesse believes autism is an epidemic on par with AIDS. Do you agree? What are your experiences with special needs children?

By Stacey Garfinkle |  February 27, 2007; 12:00 AM ET
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Comments


"Adam's reality is so different than normal children that their friends couldn't understand what they were going through. These are people that Jesse and Ana no longer socialize with. Instead, their world revolves around other families with autistic children."

Wow, that's great. They're really setting a good, healthy example for their normal child about how to have healthy, stable relationships with people. Drop all your "friends" who don't have the same issue you have, because OMG there's no *possible* way that someone could make an attempt to relate to you if they don't fit into the same narrow category as you do.

What a sad, narrow focus for their lives. I feel most sorry for that poor little Miguel. He's the one who will end up with the most problems...

Posted by: Janet12 | February 27, 2007 8:09 AM | Report abuse

Unfortunately, the "dropping" works both ways. When our son started exhibiting autistic behaviors, we had a number of family friends who suggested we just need to discipline him more. Ignorance? Yes. But it is still quite hurtful to get criticism of your parenting skills from someone who hasn't got a clue what it is like to stay up nights crying and stressing with your spouse. I suspect that Miguel will grow up, like most siblings of children with disabilities to be a compassionate, kind, human being.

Posted by: mead1 | February 27, 2007 9:15 AM | Report abuse

First, Jesse and Ana I applaud you for doing everything in your power to help your children achieve. Your children are blessed to have such a loving family. Second, you will always encounter people who wish to criticize your choices. Only you can determine the value of the criticsim. I hope that Miguel matures into a compassionate, responsible and valued individual.

Posted by: Cindy | February 27, 2007 9:15 AM | Report abuse

"What a sad, narrow focus for their lives. I feel most sorry for that poor little Miguel. He's the one who will end up with the most problems..."

I just don't even know what to say to your mean spirited comments. If you haven't lived with or spent time with an autistic child then you really don't know what its like. How a child with special needs can consume your life. How people look at the parents when the child gets upset in the store and throws a tantrum like a 3 year old, but he's 12. How other families can't understand why they need to keep the music off or make other accomodations when the child is over so as not to overwhelm them.

These people are doing the best they can and studies indicate that siblings of these children grow up just fine and actually have a much higher sense of responsibility and empathy than others. While you are at it why not submit a comment criticizing the crippled for not getting up and walking. If you don't have a child with a disability, thank your lucky stars and save your bile for your mother in law.

Posted by: moxiemom | February 27, 2007 9:16 AM | Report abuse

The recent studies cited in this article that 1 in 150 children are born with Autism (or a spectrum of) surprises me. I don't know how Autism is diagnosed - is there blood work?

Also, is it possible that people with an Autistic tendency (or spectrum) have always functioned in society and been referred to to as "quirky?" I am not belittling Autism, but the whole "spectrum" and "Austistic Tendencies" worries me. The medical and research community finds that 1 in 150 kids have Autism - is it vogue to be autistic? The labeling is troubling.

Maybe I am on the wrong track. I have a neighbor whose son was diagnosed with Ausberger (sp?) Syndrome - an offshoot of autism. He went to college - graduated, got a job, has a girlfriend. He is definetly odd but who cares, he has a full life. I think everyone has known someone in their life with autistic tendencies, and hopefully we treated them like neighbors and friends not "revealed medical mysteries."

Posted by: cmac | February 27, 2007 9:17 AM | Report abuse

cmac--The diagnosis for autism is made after observation, surveys of parents, teachers, and daycare providers (anyone having regular contact with the child), and standard developmental tests by a developmental pediatrician or psychologist. The diagnostic criteria are pretty clear ( http://www.autism-pdd.net/dsm4.html ) but where a person falls within these criteria varies dramatically. I have one child with an Aspergers diagnosis and another with a full autism diagnosis, and the differences between them are amazing--my daughter with Aspergers is, as you say, largely just "quirky." She has pretty serious problems with social interaction and speech, but I suspect those will get better as she gets older, and speech therapy and some social skills training were very helpful for her. I have no doubts that she'll be fine in life. My son is more classically autistic and you really can't miss the signs in him--at age six he has very little speech of his own, only comprehends about a quarter of what is spoken to him, has the developmental skills of a two year old (as far as things like self feeding, dressing, toileting, etc. are concerned), is extremely sensitive to textures and temperatures, has a very limited diet, spends much of his time "stimming" with objects, etc. Both of these kids are the 1 in 150, though. And it's probably true that 20 years ago my daughter would never have been diagnosed with anything. OTOH, the diagnosis has allowed her to get the help she needs so that maybe she *won't* be a complete loner as an adult, maybe she'll be able to compensate for her difficulties and be more successful in life. Sure, maybe people like her have always functioned in society to a degree, but the diagnosis and good treatment mean they don't have to just "function" but can really live. And by the same token, good treatment (which is VERY hard to find and is extremely expensive) might allow my son to "function" as an adult where in the past he would just have been institutionalized.

Posted by: Sarah | February 27, 2007 9:35 AM | Report abuse

Just realized I posted the link to the Aspergers diagnosis but not the autism diagnosis. That can be found here: http://www.autismlink.com/info/DSM4.php

Posted by: Sarah | February 27, 2007 9:38 AM | Report abuse

CMAC -

You're on the right track. For every parent with a child with Asperger's, we hope to have an outcome like your neighbor's son. To put this in perspective, our children (mostly boys) are "quirky" - for my son, those quirks include not recognizing emotions, being "face blind" to most other children (i.e. he often only knows the names of one or two other children in his class by the the end of the year", having very strange threat perception which causes him to have odd defensive aggression that is way out of proportion, etc. It is important to distinguish kids "on the spectrum" from kids with hard-core autism - they have a lot fewer impacts from their disabilities but probably get fewer breaks from society than someone who isn't verbal, etc.

Posted by: aspiedad | February 27, 2007 9:40 AM | Report abuse

My son with Asperger's/PDD was a whole lot more than "quirky" -- he had violent rages and wanted to kill himself (and other people) when he was 5 years old. He had no friends and was almost always miserable.

Thankfully I found online groups doing biomedical interventions (diet, enzymes, chelation, antiviral treatment) and my son lost his diagnosis last year at age 7 and is almost completely recovered.

Autism is an issue of toxicity that causes medical problems. It is absolutely treatable.

Posted by: Nell | February 27, 2007 9:42 AM | Report abuse

Nell, be careful about giving PDD and other spectrum disorders a blanket etiology and treatment because you had success with your son. While I congratulate you and yours on your finding a successful course of action, many families aren't so fortunate and only find moderate progress with even a collage of dietary, pharmacological, environmental, and behavioral approaches to treatment.

To simply imply that autism or PDD is an issue of toxicity and is entirely treatable, let alone curable, is an oversimplification. While as a speech-language pathologist I have come across what I believe are cases of toxicity, just as many have appeared hereditary or just plain random. Nobody knows what causes the variations or sensitivities.

Posted by: horathb | February 27, 2007 10:00 AM | Report abuse

I have a son who was diagnosed with Asperger's in second grade. He, too, is a little "quirky" , but also has moderate anxiety, mild to moderate sensory issues, and an increased intelligence. Once we plunged into the world of ASD (Autism Spectrum Disorders) we discovered it all over our family tree (full of "quirky" men for the past three generations). The label is neccessary in order to get services that will help these children be less isolated and more fully functional in adulthood.

As for friends, it is a sad reality that parents congregate with people whose children will keep theirs busy while they are visiting. When you have a child with limited social skills, limited athletic ability, and special needs - it takes a truly special set of parents and children to learn what needs to be learned. It also takes a special set of parents to accept (vs tolerate) your child's differences and do the extra work needed to help their children understand why your's can't do what all of his/her other friends can do. We don't isolate ourselves by choice or because it is the easy thing to do - we do it because we have a limited amount of time to protect our children from the cruelty of others in order for them to grow and develop without being judged. Those are precious years and we can't waste them on people who are too busy critiquing our parenting to understand our world.

Posted by: Circle Pines | February 27, 2007 10:01 AM | Report abuse

horathb, I think it's important to get the word out that ASD is treatable largely because 2 sets of doctors told me the condition was incurable, cause unknown, nothing to do but give meds to alleviate symptoms. In my son's case that advice was spectacularly wrong, and he is not in the minority.

I agree with you that biomed interventions do not guarantee a cure, but I would argue that they always bring some kind of improvement. It does take serious work sorting out what will help a particular child, because thanks to different rates of exposure, different toxins, different ages of exposure, and different individual biochemistries, no one treatment works for everyone.

If anyone is interested in pursuing biomed, I found this list to be very helpful:
http://health.groups.yahoo.com/group/Autism-Mercury/?yguid=140279175

Posted by: Nell | February 27, 2007 10:20 AM | Report abuse

Parents: has anyone tried the gluten/casein free diet for your autistic child? I provide ABA therapy for two boys at opposite ends of the spectrum, and both are on this diet. It really helps speech and stems and the ability to pay attention. If not, it is definitly something to look into, it doesn't work for all kids, and it must be done absolutely, but when it does work, it does wonders.

Posted by: ddarby23 | February 27, 2007 10:49 AM | Report abuse

sarah, aspiedad and circle pines- Your posts illustrated what I was trying to say on mine - only much better. The spectrum of Autism is broad, but the way the research has been presented in the press alters that. I can only imagine what the diagnosis and learning curve is for parents and I'm glad the treatment has become more readily (although expensive) available.

I also wanted to illustrate that regardless of the spectrum, like any disability (is that politically correct?) there shouldn't be such a stigma attached to Autism. But again, the general public probably has very limited knowledge.

Circle - the generational research was probably fascinating and revealing. People with Autism (mild) did function with disorders in previous generations, many probably did not reach their full potential, but they could live full lives.

Posted by: cmac | February 27, 2007 10:56 AM | Report abuse

I agree with Nell, ASD is a medical problem and totally treatable. My granddaughter, now just turned six was Pdd-nos/Asperger's at 3.5 years. Although she had language she had very limited reciprocal conversation abilities and huge auditory processing problems, as well as sensory integration issues and social problems.

With treatment (chelation, thyroid testing/treatment and antiviral therapy) outside psych testing yielded no diagnosis just 1.5 years later and she is now in a regular kindergarten class with no aide and per teacher report doing well both academically and socially.

ASD is a medical problem, we treated it medically, NO ABA or other behavioral interventions were used, and she is now a happy healthy child.

I am a psychologist and prior to her diagnosis believed only behavioral therapies were useful for ASD conditions. If I wouldn't have seen it happen, I wouldn't have believed it.

Rebecca

Posted by: Rebecca | February 27, 2007 10:57 AM | Report abuse

I'm in agreement with Rebecca. My son recovered through biomed six years ago when he was three.

While not everyone will recover through biomedical intervention, every child deserves to have his medical needs addressed and to have the testing and trials to see if a gf/cf diet or other aspects of biomed intervention will help improve the child's quality of life.

To do nothing is criminal.

Posted by: Avrild | February 27, 2007 11:25 AM | Report abuse

A great topic today! I applaud the parents and the Post for covering the autism issue. Here is my story:

My oldest child is 6. Before he was three, he was already displaying hyperactive behavior, some tantrums, a little aggression (he was in a daycare class with several aggressive children). But he had best friends in his class, the daycare teachers loved him, and he was a very sweet child. I attributed the more negative behaviors to the onset of ADHD symptoms, since this runs in my family. But when I became pregnant with my daughter, his behavior deteriorated sharply -- more tantrums, aggression, quirky facial expressions, decreased ability to read social cues and relate to other children. More than your average ADHD symptoms. That was over three years ago, and we're still not back to where my son used to be.

He later was diagnosed with ADHD. We started play therapy. We, after much angst, discussion, research and conflict (my ex-husband is very anti-med), started medications. None of the stimulants or Straterra worked; they got him more agitated or hyper. To date, no medications have really worked with him, and the side effects have been pretty bad. His behavior issues occur mostly in the daycare (and school) settings. At his first daycare, where he was so well-loved, the assistant director pulled his father and me into a conference with his teacher, described the well-documented accounts of his behavior and said that they could restrain him if he acted up. We decided to move our son to a smaller, Christian preschool, thinking more structure would help. It didn't.

My son, who used to like cars and trucks and videos and other things began an obsession with animals. He knows just about everything regarding just about any animal. His behavior was good one day, horrible another day. He began to make less eye contact with others. He began to prefer talking to adults as opposed to children, and he couldn't read other kids' facial expressions or social cues (for instance, if they clearly didn't want to talk about animals anymore, he persisted).

Daycare wasn't doing a darn thing for him; he was learning and was a very smart child, but we thought he was bored, and they were not trying to work with his behavior issues. They didn't have to. We decided, when the time came, to enroll him in kindergarten in our local public school. Talk about drama! That is a whole 'nuther story.

My son received a diagnosis of PDD-NOS a few months ago. So he has PDD-NOs and ADHD. Before then, I found a great psychiatrist for my son who suspected PDD but wanted to wait to see how his behavior developed. Also, I visited an ADHD message board where a poster repeatedly urged parents to test their children for autism because ADHD and autism symptons can be very similar, and a misdiagnosis is easy. This poster was sharply criticized, but in my son's case, she was correct. I had taken a computer assessment of his behavior at Childbrain.com, and the score put in him the mild PDD range. I didn't want to hear that. But I couldn't continue to deny what makes perfect sense.

My son is on the very high-functioning end; some may even say he really appears to be Asperger's. But he doesn't have all the Asperber's symptoms.

Today, my son attends a great private special-ed school that addresses social issues and behavior problems for children like him. He is adjusting well there. Aftercare is still needed, and that has been a disaster, as daycare almost always has been for him. He really needs an aftercare that is similar to his school, and there is nothing like that where I live. I could hire a special care nanny, but that is beyond my budget as a single mom. Now, we're trying another aftercare to see how it will work out. I'm keeping my fingers crossed.

Posted by: theoriginalmomof2 | February 27, 2007 11:34 AM | Report abuse

This statement is worrisome:

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The label is necessary in order to get services that will help these children be less isolated and more fully functional in adulthood.
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Could this explain why we're seeing such an increase in autism among children?

If it's now necessary to have a "diagnosis" to get help with being quirky, being restless, being uncommunicative, being slow to speak, being anti-social, being *whatever* ... then everyone is going to want a diagnosis.

Everyone wants their child to be SOMETHING because being clinically something gets you treatment and attention and special care and resources that "regular" kids don't get.

A quirky kid annoys the teacher/other students sometimes as he makes do in the classroom. A quirky kid with a diagnosis gets an IEP, an aide, extra time on tests, excuses for doing things or not doing things. And the more of that there is, the less there are resources are available for the kids who aren't clinically "something".

So we have a system where it's in everyone's individual best interest for their children to be *something*, and the "1 in 150" number starts to make sense.

Doesn't seem like a good way to run a railroad.

Posted by: worried | February 27, 2007 11:47 AM | Report abuse

I have a blog for fathers after 40, and I have mentioned autism a few times because of the Isreali study that showed an increased risk for autism with advanced paternal age. Yet, when I talk with people in our local autism community, they just don't see the connection. I'm just wondering what people's experiences here are. I should note I have an 10-month-old daughter, so I have been watching her development very carefully. She is starting to use simple words now (i.e. "daw" for dog.) but I know sometimes language can start to develop and then regress with autism.

Posted by: Paul | February 27, 2007 11:50 AM | Report abuse

I don't know too many parents who are so desperate for attention for their child that they would seek an Autism diagnosis. Again, I am a psychologist, you can't get a dx of Asperger's or Autism without having the behaviors. They don't just hand them out to every quirky kid out there.

This is the rationale used to explain the rise in Autism, it's purposely misleading to try to explain how something that was so rare none of us knew an Autistic child 30 years ago and to hide the fact that you now can't throw a stone and not hit one. The CDC said they goofed, the rise in Autism and the number of vaccines they kept piling on do correlate.

The CDC by it's own admission said they didn't think about adding up the amount of thimerosol that was cumulative in the vaccines...many more times the amount of mercury than they recommend from eating fish. A lot of kids just couldn't handle the increased amount of vaccines.

Rebecca

Posted by: Rebecca | February 27, 2007 12:22 PM | Report abuse

"If it's now necessary to have a "diagnosis" to get help with being quirky, being restless, being uncommunicative, being slow to speak, being anti-social, being *whatever* ... then everyone is going to want a diagnosis."

OK, so I took a few VERY deep breaths before hitting the button so here is my now calm response to your post:

No one WANTS a diagnosis. No one WANTS a special needs child. They happen. Why they happen in this particular arena is still up for debate though it is largely felt to be a combination of genetics/environment. "Quirky" is what is was called before we knew what it was. REGULAR kids dont need services. REGULAR kids aren't so anxious that the fire alarm is going to go off that they can't concentrate on their work. REGULAR kids don't get blinded by flourescent lights or headaches because they can hear the clock ticking from a room away.

As a parent it is my responsibility to help my child become a connected, capable, caring member of society. In order to do that he has to be able to learn. His brain doesn't learn the way all of the other REGULAR kids brains learn. Therefore he needs extra help. The quirky kid without a diagnosis may or may not need one. But yes, the cold hard fact is that without the diagnosis he will not get the help.

Your statement that those kids getting extra help are doing so at the expense of those that don't need it smacks of the 1950's mentality that "if you aren't average enough to be in the classroom you don't deserve an education". How sad that you believe that unless someone "fits in" they have no rights, deserve no help, and should be hidden in special schools and institutions. (My, let's start calculating the cost of housing everyone you don't want to educate properly).

You're right in that it may not be the best way to run a railroad but we aren't running railroad, we are educating future members of society.

Posted by: Circle Pines | February 27, 2007 12:26 PM | Report abuse

This is also VERY worrisome:

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The CDC by it's own admission said they didn't think about adding up the amount of thimerosol that was cumulative in the vaccines...many more times the amount of mercury than they recommend from eating fish.
-----------------------

Makes me very happy to be an old person who's "had all her shots" a long time ago.

Posted by: worried | February 27, 2007 12:38 PM | Report abuse

As I am the guest blogger on On balance today, I don't have a lot of time. But DD's teacher suspects that she may be on the autism spectrum. DD is in the camp of quirky. She is very shy and at age 3 still only parrallel plays. She is speeched delayed but now says over 100 words and combines words. So language is emerging. But the difference is the basic definition of autism has changed over time. That is the reason so many children fall into this category. I think DD is quirky and we have a long future of speech and other classes. She also has some mild sensory issues. She did not used to like paint and stuff. But she is much better now. But it is interesting and helpful to hear stories of kids in the mild area, making it in the world. It gives me a lot of hope for DD.

Posted by: foamgnome | February 27, 2007 12:38 PM | Report abuse

Worried--Are you serious? You think everyone would want their child to be *something* in order to get extra attention or services? I know I personally would love for my child to just be normal and not have to be pulled out of class for speech therapy (for the one who is mainstreamed) or in kindergarten but focusing on learning how to respond to his name when it is spoken instead of focusing on learning the ABCs. I don't know any parents who have sought out a diagnosis when they weren't pretty sure that something outside of the normal restlessness and boredom sometimes associated with childhood was going on. Believe me, when you have a child with an autism spectrum disorder, you may not be able to pinpoint exactly what's going on, but you know something is just not right.

FWIW, many, many children with high functioning autism/Aspergers are model students--teachers love them. They are quiet (because they aren't quite sure how to speak/what to say), they love rules and schedules, they wouldn't dream of fighting with another kid in the lunchroom, they are way smart and might talk the teacher's ear off about the life cycle of the ant. They aren't anti-social, they are asocial--kind of a nice thing in a classroom where some of the biggest problems are caused by children trying to interact inappropriately with other children. An autism classroom is remarkably silent--none of the constant chatter you hear in a class of normally developing kids.

But without assistance, a child with high functioning autism or Aspergers will get lost in the classroom--they may not understand what is being said by the teacher because the wording was complicated, their obsessive interest in electrical wiring (or whatever) means they spend their time drawing circuits instead of learning sentence structure and simply saying "pay attention and put that away or you'll have to stay in during recess" doesn't work. Circuit are more interesting than recess. If a person can't learn through verbal instruction and can't learn through imitation, of course they need assistance to learn and understand things that they are perfectly capable of grasping if it is taught the right way.

Posted by: Sarah | February 27, 2007 12:43 PM | Report abuse

to Circle Pines:

"How sad that you believe that unless someone "fits in" they have no rights, deserve no help, and should be hidden in special schools and institutions."

I have no idea how you took the mental leap from what I wrote to the statement above. I never said any such thing, and in fact I think that kind of attitude is abhorrent. Please don't put words in my mouth.

My point is that in a time when there seem to be fewer and fewer educational resources to go around (and I think that in itself is criminal) I'm not surprised when every parent does whatever it takes to get the maximum amount of those resources for his/her own children. I wouldn't expect any less from any parent.

If more parents are now realizing the value (in the form of more services) to having a child with a diagnosis vs. a child who's just quirky, then more of them will seek out a diagnosis for their children. I suggest that this could be one reason why, as one of the posters above put it, autistic kids used to be rare and now "you can't throw a stone and not hit one."

And before you say it ... no, I'm not suggesting throwing stones at autistic kids.

Posted by: worried | February 27, 2007 12:49 PM | Report abuse

Just about 20 years ago I spent two years as a full-time bus driver for severely autistic adults. During that time I developed many techniques for communicating and even teaching my passengers. I met with parents, social workers, and professionals at that time and continue to share my insights with those interested. Unfortunately without a PhD nobody takes my very seriously. All are welcome to read more at Teaching Those With Autism

Posted by: thw2006 | February 27, 2007 12:52 PM | Report abuse

Worried, when you say,

My point is that in a time when there seem to be fewer and fewer educational resources to go around (and I think that in itself is criminal) I'm not surprised when every parent does whatever it takes to get the maximum amount of those resources for his/her own children. I wouldn't expect any less from any parent.

My question is -- isn't such a phenomenon as you describe above what seems to be happening with the vast increase of children in gifted and talented programs, rather than in special education programs? I doubt that lots of parents are so desparate for resources that they willingly push to get their children special ed services. Being that special education (for some antiquated reason) carries a stigma and all.

Posted by: theoriginalmomof2 | February 27, 2007 12:54 PM | Report abuse

to worried:

You implied many hateful things in your first post, so I would suggest you re-read posts before putting them up for all to see. I don't think anyone put words in your mouth. As a mother of a child with autism, I felt very offended and upset by your post.

I do think, however, that you are not alone in your opinion, and that is what scares me about going out in public.

I have been told by strangers and family alike to 'put a leash on her,' 'all she needs is a good spanking,' I have even had a woman smack my child because she couldn't deal with her kicking a chair that was next to the woman on an airplane.

The lack of public knowledge of Autism is scary to a parent of an autistic child. I myself had no idea what was in store for me when everything seemed normal and she was an infant. My daughter looks beautiful and normal in every way, but she doesn't act the way people think that she should. It would be a lot easier for me to deal with if she was in a wheelchair, so that others might be a little more understanding.

Also, dear worried, I'd like to see any parent simply "ask" for special services for their child and actually receive them! I have been forewarned that if you want special aides for your child through the public schools in my area, you often have to sue the school district in order to get them. I have waited 7 months so far to get Occupational Therapy for my daughter at her preschool.

Unfortunately, for any special needs kid, the dollars are short and the services are often grossly absent and/or inappropriate.

Posted by: fairly isolated | February 27, 2007 1:29 PM | Report abuse

It's hard to miss the increasing number of kids being diagnosed with either Asperger's or PDD-NOS.

My theory is that teachers and administrators have much less tolerance for "quirkiness" - thanks to No Child Left Behind. There's unfortunately no leeway anymore for the child who develops on a different trajectory, at different time periods than the other kids in the class. (And the only way your child's scores can NOT be counted for standardized tests is for your child to have a diagnosis -- thus, the quirky kids are now being diagnosed.)

Our Fairfax County Public School PRESSURED us to have our child evaluated, diagnosed and medicated -- so that he would cease exhibiting 'disruptive behaviors' in the classroom. Parents who didn't comply with administrative policy frequently found themselves having to hire lawyers to keep FCPS from placing their children in emotionally disturbed (ED) classes.

Strangely enough, we've since moved away and our current principal refuses to believe that our son has Asperger's. SHe says he's just really smart and that the other adminstrators were just being lazy.

Here's a thought-provoking question: did you ever read those Beverly Cleary books about Ramona the Pest? TOday, she'd be diagnosed with sensory integration disorder, ADD, and a team of social workers would probably come to the house --Then she'd be put on Ritalin.

Posted by: Just Me | February 27, 2007 1:37 PM | Report abuse

I am wondering whether anybody has try the spectrum center in bethesda? Our son went there. When he was three 1/2 he was diagnosed with PDD-NOS. He could not answer questions that were put to him, he would just echo them back. and had arm flapping, sound sentivity, separted himself from other children, was fascinated with numbers and could count to 100 at that age. Also very routine oriented, change his routine and he would get very upset. He went to the spectrum center when he was 4 years old. He is now 6 years old and he is doing pretty well. He had speech and occupational training also for about two years. He is in mainstream school and can communicate and anwer questions well. He still does not have free flowing conversation with friends though. He can talk to himself and make noises still, but he has made tremdous strides, that I believe were do to the spectrum center, but I can not say absolutely that it was the answer.

Posted by: niceday971 | February 27, 2007 1:43 PM | Report abuse

Just me - you illustrated some of my reservations on diagnosing with the story of your son. Just like ADD and ADHD and then bi-polar disorder a couple years ago, the medical/research and educational communities go haywire, battle for funding and the kids get lost in the shuffle.

It is an under/over reaction conundrum. The kids with disorders/disabilities benefit from the frenzy and funding, while the kids that are just "different" have to get tested and analyzed ad nauseum to prove that they are "normal".

Posted by: CMAC | February 27, 2007 2:03 PM | Report abuse

Your story is a very accurate representation of the issues that many families face caring for a child with an autism spectrum disorder(ASD). "Spectrum" implies a range of subtypes. Caution must be taken by readers and commenters so that the experiences of one family aren't generalized to the whole community. Unfortunately, there are a lot of different "autisms".

Shared by all, though, are the crushing financial burdens that families and caregivers take on when they hear the diagnosis for the first time. The costs are staggering. By doing the recommended state of the art home program (to augment the limited resources available through most school systems), along with professional therapy, costs can easily fall in the $50,000 to $100,000 range per year. Few families can afford to pay this much and insurance policies generally define this medically necessary therapy (like ABA, speech therapy, physical therapy, etc.) as "educational" and not reimbursable. School budgets are strained everywhere and few districts can or wish to foot more than a small part of the cost of providing the necessary services. So most parents who want to maximize outcomes for their kids are forced to go it alone. Many quickly blow through savings trying to do what they can and marriages (I've read nearly 90%) fall apart under the strain. The testimony I've listened to in legislative hearings in my state is too often heartbreaking.

The costs for individuals who need lifetime support are estimated by advocacy groups at around $3,000,000, which I think may be on the low side. Given the incidence of 1 in 150, intervention and support for individuals with autism across the entire lifespan is going to cost a lot more than anyone dreamed of a decade ago when my son was diagnosed by a nationally recognized expert as one of the unfortunate 1 in 10,000. Services need to be funded in a way that doesn't cause families to shoulder nearly all of the burden. I suggest advocating legislators to craft a solution involving all involved parties: taxpayers, insurance companies, care providers, and affected families.
Until very recently, autism was largely absent from public policy discussion so I hope that more well written and researched articles like yours appear to focus attention on the need to address the issues.

Posted by: Gene | February 27, 2007 2:10 PM | Report abuse

to theoriginalmomof2:

I think you're onto something with the talented and gifted thing ... I can see how my theory could apply in both directions.

When everyone is competing for the same limited resources, being "regular" or "normal" is the least advantaged position to be in. Both "special ed" and "TAG" kids get extra resources, "regular" kids don't.

I'd be interested to know about the numbers surrounding TAG programs. We've been discussing the rapid increase in autism diagnoses over the past 10 or 15 years. I wonder if there is an equally sharp rise in the number of kids who are in TAG programs, or who officially "qualified" for them in some way. Offhand I don't know of a source for that data. Maybe the Dept of Ed or the National Association of School Boards?

It's not *exactly* apples-to-apples, because a child can't be clinically diagnosed "gifted" in the same way that s/he can be clinically diagnosed autistic. And there's not the same legal recourse that a parent can take ... if my child qualifies for special ed I can sue to force the school to provide services, but if my child is gifted I cannot legally force the school to provide accelerated learning opportunities. But I would still guess that we'd see a similarity between the two.

That would be a really interesting topic for further research ... thanks for bringing up that discussion point in a rational and non-reactive tone.

Posted by: worried | February 27, 2007 2:19 PM | Report abuse

I've never "blogged" before, but this subject caought my attention, as my adult son may fall somewhere on the autism spectrum. What strikes me is how people with mental/neurological disorders get labels, yet things like chicken pox or cancer are merely illnesses. In the interest of eliminating the stigma of autism, etc., I'd love to see the term "label" disappear. Today's bloggers who aren't affected by mental/neurological diseases, please keep an open mind.

Posted by: Newbie | February 27, 2007 2:44 PM | Report abuse

I've not heard that 'The CDC said they goofed, the rise in Autism and the number of vaccines they kept piling on do correlate'.

Can you provide a link?

Posted by: to Rebecca | February 27, 2007 3:11 PM | Report abuse

For 3 years I worked as a therapist for autistic children. It was one of the hardest, most gut-wrenching jobs I've ever had. It was also the most rewarding experience I've had.

I've had my suspicions about a reason for the huge influx of new autism cases, all of which were confirmed when I read this article. I'd post it, but it's a little long. The link follows. Go there, read it for yourself. It's a safe site- the article was originally published in Salon, but Salon is subscription based. Here you can read for free, please do!!

http://www.commondreams.org/views05/0616-31.htm

Why was this never covered in MSM?

Posted by: browncoat | February 27, 2007 3:29 PM | Report abuse

Correlation is not causation. Just remember that.

Also, in a chat here on WaPo.com, the host said that in Canada, in the decade since the mercury was removed from vaccines, there has been a similar rate of increase in autism diagnosis as in the US. So if there is a causation, it's not direct.

Posted by: MB | February 27, 2007 3:39 PM | Report abuse

It has been several years since vaccines even had thimerosol, even though CDC still maintains that there is no threat of autism from it. The autism diagnosis rate among children who received vaccines with thimerosol and that of children whose vaccines were thimerosol free is highly similar. I've heard and read this over and over, including within the last few days from a CDC researcher being interviewed on Washington Post radio.

Posted by: vaccines | February 27, 2007 3:54 PM | Report abuse

I never heard the CDC say they goofed either. Regardless because the makers of vaccines don't want bad press, thimerisol has been removed from all childhood vaccines except for the flu shot (which is available without preservative upon request).

http://www.cdc.gov/nip/vacsafe/concerns/thimerosal/researchQAs.htm#vsdres

------------------------
The CDC by it's own admission said they didn't think about adding up the amount of thimerosol that was cumulative in the vaccines...many more times the amount of mercury than they recommend from eating fish.
-----------------------

Posted by: cite your data | February 27, 2007 4:02 PM | Report abuse

We do not (yet) have a child with autism, but we have some close friends who do. I have a few thoughts I want to share.

Disabilities can come into our lives at any times. Those of us who are "able-bodied" or whose children are "typically developing" could have that change at any moment due to accident or illness. It behooves us all to acquaint ourselves with the world as it is encountered by people with any kind of disability, mental or physical: today we may think we don't care if a bathroom is wheelchair accessible, but tomorrow, we may care very deeply.

For people suffering from any kind of illness or condition for which there is no definitive "blood test" -- whether it's autism or chronic fatigue syndrome or fibromyalgia or depression -- it adds so much to the burden and the suffering when other people constantly ask you to justify the the existence of the condition. We may not yet know all we want to about these conditions, but we know more than we did a century ago, and a century from now, we will know still more.

I believe it enriches my child's life to be involved with her autistic friend. Since this girl is completely nonverbal, my daughter can't talk with her or play very interactively, but they can play chase, they can parallel play with toys, and they can just be there for each other.

Finally, I want to suggest that those of us who are friends with people who are struggling with very difficult illnesses or conditions need to cut them a lot of slack. Of course much of their social life is going to revolve around that condition, and that's good, because it will give them comfort and a community. We're the ones who need to take the extra steps to stay involved with these families and to offer them the support they need.

Posted by: Julia | February 27, 2007 4:12 PM | Report abuse

There are so many comments I would like to address but there's no time. I will say this: my 26 month old has high-functioning autism. There are few things worse than wondering if your child will be able to have a relationship, have friends, work at a job where he won't alienate everyone, care for himself and on and on. We also long for our child to call us mommy and daddy and give us a hug or a kiss. Unless you have a child with a disability, you simply have NO idea what daily life is like. (I also have a 4 year old who is fine and she is a wonderful child.) Our son has made leaps and bounds in the last 5 months since being on the gf/cf diet, has started yeast elimination treatment, allergy clearings and now is on anti-virals for problems related to the measels vaccine. Yes, it's true...no matter what people in high places with special interests have to say. We now have hope that our son will be close to typical by kindergarten. We anticipate spending around $20,000 this year alone in biomedical treatments and occupational therapy out of our own pocket in the hope of helping our child. We do get speech therapy from the state but that pales in comparison to what we are spending now so that our child does not have to depend on society later. Maybe some of you should think of the expenses in this way and you won't begrudge the amounts spent to help these children function. In regard to vaccines, I understand kids get 25 more vaccines than I did in the late 60s. Imagine overloading a child who has many allergies and immune system/gastro issues and it's not too big a leap to believe that some changes could be made in vaccine protocols. But that's another topic. At the least, please be aware that many parents are not "bad" parents who can't control their child, they are dealing with situations you can't possibly begin to understand. Having a child with autism causes you to become almost a "super" parent in the way you interact with your child, advocate for your child, watch your child and protect your child. Please have some compassion.

Posted by: Texas Mom | February 27, 2007 4:33 PM | Report abuse

I have heard Imus and his wife harping on the issue of mercury in the vaccines causing Autism for some time now. Then I heard the study, came out a few months ago, that there was no statistical correlation between the two.

While I appreciate the link to the article, Browncoat, remember that Kennedy, while a tireless crusader, isn't exactly a neutral and objective third party here.

Posted by: JD | February 27, 2007 4:42 PM | Report abuse

As a father, a couple of comments.

As much as I applaud the intent of this topic , this is an intensely personal subject that only parents of children on the spectrum can understand.

We have become isolated from all of our family and friends. I do not know whether it is us or them, us protecting our son, or just not wanting to see the way people treat him. I do know that it is not our imagination and only 'we parents' can understand.

My son has made tremendous progress and has amazing talents - including a pretty good ability to judge who is judging him!! He is not quirky and it is terms/comments like these that make us protective.

By the way, the comments about us searching out diagnosis is so out there that it is humorous. You have no idea the financial, physical, and emotional challenges that his presents. I suggest you think about how you communicate with people.

We travel twice a year from Florida to the Spectrum Center and we highly recommend it to all parents.

Posted by: Father | February 27, 2007 4:59 PM | Report abuse

Worried, now you've raised an even thicker issue -- kids who are 2E -- or twice exceptional. They can have ADHD, autism, bipolar, etc. and be gifted at the same time. Let's say they receive Spec. Ed. services. But their talents, in this case, their academic abilities, should be provided for too. So, if I feel my son is not getting the education in relation to his needs (for accommodations as well as academics in relation to his grade level), I can take legal action, using the claim that he is not receiving a free and appropriate education under the law.

This is just some lawyerspeak here, folks. I believe that special education students need and deserve every penny they get. And gifted kids, whose have special needs (although not legally) deserve their resources as well. The average kids deserve to be allowed to stretch their wings academically and extra-curricularly. I have one child with disabilities and one with none, and I must advocate for both based on their needs.

I think when you read Just me's story, you may agree that there is a definite need for a law to protect children with disabilities. My experience was similar, where I had to hire an advocate and fight a school system that wanted to put my son the emotional disturbance track. I'm ticked that he couldn't be accommodated without having to go into the special education system. But he is in a better setting; in his case, the "mainstream" alternative for him is no great shakes.

Good discussion today. Gotta run.

Posted by: theoriginalmomof2 | February 27, 2007 5:15 PM | Report abuse

Over 40 fathers and autism: My friend was 41 and her husband was 59 when their daughter was born. She is autistic and I think an example of an autistic child from older parents. It could be random, but yes, the age of both parents could have been an attributing factor.

Posted by: Jill | February 27, 2007 5:52 PM | Report abuse

As the parents of a 5-year-old who was diagnosed with autism at age 3, we have been on a steep learning curve over the past couple of years. He is our fifth child, so we saw the difference in development from our other children, and there was no question that he needed a "diagnosis", especially if that's what it took to get him the assistance he needed.

As many of the other folks posting here have said, we have learned to advocate for our son, with the assistance of an educational consultant, to help us work through the maze that is the special education system here in our county. I must say that so far, we have been very pleased with our son's progress, and hope to see him continue to progress and in the future, hopefully attend college and live an independent, productive life.

Many thanks to everyone here for sharing thoughts, ideas, and stories. It's comforting to know there are so many people out there lending moral support to the cause.

Posted by: Lori | February 27, 2007 6:17 PM | Report abuse

My oldest son, now almost 46, has Aspergers. When he was diagnosed at about age 3, back in 1964, we were advised to instutionalize him - he was barely verbal at that time and "face blind". Fortunately, in those days in Illinois and later Pennsylvania, those states provided full care for children with certain "psychological" diagnoses, and my son was diagnosed as "pre-autistic". I don't know if Aspergers was a diagnosis again - heck, I didn't know about Aspergers until another son mentioned it to me about 8 years ago. My son was in totally special ed schools through 8th grade - no mainstreaming then. In 9th grade he was accepted at Philadelphia's academic magnet school for boys, and did very well in fact-based classes. His chem teacher said he was a chemistry genius. He didn't do well at all in literature and less factual studies. He was accepted at Drexel Univ., and did fairly well there for the first year, but then found it entirely too much stress. He has a job - not a great job but one he likes and one that pays him enough to be self-supporting and have an IRA. He also has a consulting business which developed from a website he put up on specialized forms of lighting. He is by far the nicest person in our family - we all agree - and often the most boring conversationalist unless you want to talk about electronics, weather, biking, or a few other limited subjects. He is kind, thoughtful, definitely non-violent. He has a couple of close relationships, but only a couple.

Do I wish he were different or, rather, not "different". You bet! I am, however, eternally grateful that he was born in and diagnosed in a time when so many resources were available to us at no cost (because I did not own a car, the state even paid for a daily cab to take him to and from school in both Chicago and Philadelphia).

I am fascinated by the recent news of a study which may - may, only may - have identified a gene that has to do with autism. I know that when another son and his wife were struggling with in-vitro (4 tries before producing a granddaughter), that son told me he had done a lot of reading on autism. (A cousin by my brother's 1st marriage had learning disabilities at an early age, though he has pretty much overcome them; two cousins by my brother's 2nd marriage both had learning disabilities and personality disorders. And depression runs - gallops - in my family.) One thing this son told me was that he was glad when their child was born and they learned (they chose not to find out earlier) that they'd had a daughter, because the incidence of autism and similar disorders is significantly less in females. Which I also didn't know but, when I think back, most of my son's schoolmates in special ed were boys.

We were very lucky - my son and our family. And, one of the lawyers in the law firm where I work has Aspergers - more distinctly so than my son - and is considered a major asset to the firm because of his skills in research and brief-writing - but he almost never manages to keep his shirt tucked in and almost never looks you in the face when you greet him. Still, he has a very well-paying job which he enjoys, and is greatly valued for his skills.

But I know mothers whose husbands left them because the autistic child was severely autistic and the father couldn't cope - and families who, very very reluctantly, did have to institutionalize a severely autistic child. I have an e-mail friend who has had to place her autistic son in a boarding school 2 hours away because they live in a rural community that can't provide the learning resources her son needs.

As for autistic and other diagnosed children taking resources away from "average" or "normal" children - if you haven't lived with the difficulties of raising a learning disabled child and struggling to get the educational resources your child needs, consider yourself lucky to have an "average" or "normal" child. Our children are taking nothing away from your child - because you can so easily supplement or provide what your child might not get in school, and your child has every chance to do well. Those with learning disabled children are not so lucky. The problem is that the pie keeps getting smaller, and, appropriately, resources often go to the neediest children - that is, in affluent, educated (mostly white) communities where parents demand to be listened to and can, if necessary, afford private diagnostic tests and lawyer. Those who struggle with rural or big-city school systems have a constant struggle to get just to get on a waiting list for testing, and for an IEP meeting, and then have to battle almost daily to get what the IEP prescribes - doesn't matter what the law is if the resources aren't there.
The problem is that with No Child Left Behind and concurrent budget cuts for education (at least partly because of tax cuts, but that's another topic), the boat is getting smaller instead of larger, and all of us are struggling to get what our children need, not just parents of children with learning disabilities. Schools are more and more becoming a "sink or swim" mileau, and our children sink much more quickly.
Think about it - would you rather pay for more resources now to help learning disabled children - autistic and others - become able to be self-supporting adults who can function in our society, or pay the high dollar and social costs of having them in one institution or another (mental hospitals, group homes, or, sadly, prisons). That is pretty much the choice, especially with the numbers being 1 out of 150.

Posted by: vklip | February 27, 2007 7:15 PM | Report abuse

What a wonderful discussion.
One thing I haven't seen mentioned is the benefit to the mainstream population, of exposure to special needs children, especially those with some version of Autism. I have a 10 year old daughter with moderate Autism, a "normal" 15 year old son, and have worked in multi-handicapped programs in Maine for many years. I have seen other students blossom when exposed to children with significant difficulties. In my daughter's school, the kids in the autistic program have school wide jobs, just like like kids in other classrooms, are included in all school activities, and are intelligently mainstreamed. These children are no longer hidden from the mainstream population, and I think that the biggest benefit is the growth in understanding and compassion among the "normal" kids, their teachers, and their families.
My 15 year old has become a kindhearted, patient and caring young man through growing up with his little sister. They love each other fiercely.

Posted by: BD | February 27, 2007 8:42 PM | Report abuse

No one else has mentioned a new and controversial theory about autism and Asperger_s syndrome, and so I will.

The following treatise is not quite scientifically rigorous, and it rambles. But it cites many reputable references, and it raises profound questions:

www.rdos.net/eng/asperger.htm

Those of us with strong Celtic or Basque heredity need to give the possibilities raised in this treatise some thought. There is nothing that we can do to change our heredity, but understanding is the key first step in compensating and overcoming. I am old now, but I have come to realize that I am mildly Asperger_s, and I have plenty of Celtic ancestors. So, Neandertal genes, maybe?

I have three academic degrees, but have always considered myself to be a bit socially challenged. Anyway, Life Goes On.

Posted by: oldhonky | February 27, 2007 9:11 PM | Report abuse

As the mom of a 7 year old girl on the spectrum (with ADHD and anxiety too) that is facing the perils of trying to get her a public school education that works, I'd like to point out the misguided assumptions regarding educational opportunities that have been circulating on various posts. Under IDEA, children with disabilities are entitled to a Free and Appropriate Education. Sounds good huh? But, guess what? The education promised isn't the best education or even the most appropriate education for your children -- it is AN appropriate education. As the Supreme Court has noted, "whatever Congress meant by an "appropriate education", it is clear that it did not mean a potential maximizing education." And, here is my favorite from the cases out there. . ."the free and appropriate education must only confer SOME educational benefit on a disabled child." Isn't that what every person wants for their kid, SOME educational benefit? Our process has taken almost 2 years with no clear path in sight to date. So, please bear these cold hard facts in mind as you suggest good services are readily available courtesy of a lawsuit -- when the standard is "some" -- it is likely that what you will get is decidedly NOT "treatment and attention and special care and resources that "regular" kids don't get."

Posted by: new to the game | February 27, 2007 10:30 PM | Report abuse

I thought the Salon article was interesting but it did not provide a link to the papers published by Mark and David Geier that analyzed the CDC's raw data.

Personally, I tend to be suspicious of the vaccine hypothesis. I recall a paper that showed dramatically altered wiring of the brains of autistic kids, and it's hard for me to believe that vaccines administered postnatally could achieve these effects. Other studies showed subtle differences in the behavior of autistic kids as early as 10 months old, before many vaccines had been administered. Wasn't a specific gene linked to autism just this week? From a geneticist's point of view, I would hypothesize that this condition is at least partially genetic, possibly with several contributing genes. Perhaps thimerosol interacts with the genetic factors, but at this point I am not convinced that it is the key one.

Posted by: m | February 28, 2007 12:07 AM | Report abuse

OK, DD may be on the spectrum. We are taking her to the neurologist and a developmental pediatrician to find out. That being said, she has been in the public preschool intervention program since Octobor. She had about 15 words in October and now says over 100 words. And is combining words. She is also participating in painting, play dough etc... We are working on her social skills. Granted, she is displaying very mild traits of asperger's syndrome. So I think even with out treatment, she would have been quirky and socially awkward. Not a head banging plate spinning type. Not that is a bad thing. But she is in the mild camp. But I have to say I think Fairfax County schools and child find have been incredibly proactive with her diagnosis and treatment. They also emphasize that diagnosis is secondary to prevention. So maybe we are just lucky but I am hearing over and over again that people are having trouble getting services. But we have found the opposite. They are very willing to get involved and offer services. We have seen great improvement in our daughter in the 5 months of school. And look forward to more. On their own the school suggested bumping up to 5 1/2 days versus the 3 originally slated for DD. They also mentioned maybe full day next year and summer school. I have to say to the critics of the MMR. I think based on the socially awkward inclusion of the spectrum, I probably fell into the autism definition. And so do half my colleagues. None of us received the MMR. In fact, I was not even vaccinated for the Measels till I was an adult because I actually had the disease as an infant. Guys the definition has changed for autism.

Posted by: foamgnome | February 28, 2007 7:54 AM | Report abuse

My late best friend had 2 kids - a girl who is now 18, and her younger brother 15 who is severely autistic. While it has been rough on the girl, and now with the death of her mother they finally got the boy into a good residential home, she is a compassionate bright wonderful young woman. She is planning to become a veterinarian and cares deeply about others. It did give her compassion and understanding about human suffering.

So Miguel will probably turn out the same way.

Posted by: librarianmom | February 28, 2007 11:35 AM | Report abuse

I have skimmed through several of the posts with interest. I am 60 years old and have Asperger syndrome. I was never diagnosed until about 11 years ago. The first three mental health professionals that I visited as a boy all found different ways to blame my Mom for my difficulties. I'm a little surprised to read about a man (in one of the posts) who was diagnosed with AS in 1964, as so little was known about it back then.
I work as a software engineer (mainframe) for a major computer software company with an office in the area. In another month and a half, my wife and I will be celebrating our tenth anniversary. Between us we have five grown children and eleven grandchildren. I have a BS in math from Michigan State.
Sure, AS has limited me socially; but I've managed to get along in life. Of course, I've been fortunate in quite a few respects; that includes having terrific parents who believed in me and kept working with me to help me succeed.
All the same, I'm not sure all kids with AS can be expected to function independently as adults when they grow up. As for those with classic autism, that's a different story. Some of them manage to succeed (e.g., Dr. Temple Grandin), but they face much greater odds. Their parents, too, face much greater challenges.
As for the supposed epidemic of autism, I think a lot of that can be accounted for by a higher rate of diagnosis, particularly of high-functioning forms such as AS. It's possible that food additives or environmental pollution could be contributing factors, too. I discount the vaccine theory, which I think has been more than adequately disproven.

Posted by: Charlie Gies | February 28, 2007 12:11 PM | Report abuse

First, "Worried" is exactly right and it's sad that so many are offended by her comments. It's not that parents "want" their kids disagnosed as disabled; it's that it's hard to figure out what some children's behavioral and mental problems are due to and so they are misdiagnosed as disabled when they just need to learn self control and be disciplined. Second, gifted programs have been taking a beating in terms of funding, not just due to special education funding, which is double or triple what is spent on normal kids, but because of lack of funding period due to NCLB testing. Third, to Common Pines, we are not "educating" these children with disabilities - we are psychoanalyzing, providing therapy, rehabilitating, socializing, controlling, baby sitting, etc. children who will perhaps never be able to contribute to society in any way. Cruel as it may be, some, not all, children with autism and other behavioral disorders, cannot be treated and will never be able to care for themselves without hurting or harming themselves. Last, to Father, it may be true that only parents of the disabled, including autistic, children can "understand" what you're going through, everyone is paying for the enormous sums of money being spent for the "special needs" of children who need services that do not qualify as "education" in the traditional, academic sense. So we need to speak up and decide as a society where this limited amount of money that is called "education funding" - federal, stae and local - is going to be spent. Do we want to make sure all children get a piece of that pie or are we going to go overboard and spend all of it on those with "special needs" because we feel so sorry for them and their parents? Incidentally, there is NO connection between autism and mercury - none whatsoever. But there is a genetic causation of autism, so people who have one autistic child should do themselves and society a favor and not have any more children. This is the most maddening topic because no one is able to see any other children except their own when that child has "special needs" and it is so politically incorrect to tell these parents to open their eyes to the rest of society. I'm sorry you had a child with special needs, but there are so many children who need an education, not just yours.

Posted by: Margaret | February 28, 2007 1:24 PM | Report abuse

DD is not in the camp that your describing. She is in a special preschool and may have pull out speech services one day. Not much different then the $$ being spent on the so called Gifted and Talented. More then 2/3 of the TAG kids are not truly gifted or talented btw. Anyway, Marget, what do you suppose we should do with the seriously handicapped. Lock them in the cheapest padded room? I mean really. Sure there should be more money for TAG kids but if they are truly gifted and talented, they should have a bright future with or with out additional funding.

Posted by: foamgnome | February 28, 2007 2:33 PM | Report abuse

"we are not "educating" these children with disabilities - we are psychoanalyzing, providing therapy, rehabilitating, socializing, controlling, baby sitting, etc. children who will perhaps never be able to contribute to society in any way"

Wow - what a cruel and disgusting comment. How do you expect an autistic child (or a child with any other type of disability)to be able to reach their full potential w/out help and intervention? Should I, as the parent of an ASD child, just sit back and do nothing because my child may or may not grow up to be a productive member of society? What gives you the right to say that?

Posted by: To Margaret | February 28, 2007 4:01 PM | Report abuse

A matter of weeks before getting my Master's in 1996, the University had finished the psychological assessment I requested and said I had Asperger's syndrome.

My interviewer, another Master's candidate in the social sciences, carefully explained that there was no academic intelligence deficit involved (of course, we were academic equals), but that nonverbal communication would be problematic. I'm not sure, maybe the part of the nervous system that communicates nonverbal perception might not be working properly.

No one with the diagnosis has all symptoms. I almost never have a problem with outrage or outbursts.

I knew what ADHD and depression were. Yes,

Because my social research career never made it past the interviews, a state agency in 1999 paid for me to receive one semester's equivalent of computer programming on the grounds of a vocational rehabilitation facility.

Success on my second try. It seems that, true to Computerworld and Wired magazines, for me, Asperger is a perfect adaptation to the world of high technology. Indeed I had grown up with computers. The Wired article "The Geek Disease" is valuable reading. Maybe at this point and time in world history, we need people with math, science, engineering, and computer skills, Asperger or not.

Here's what I've learned about AS.

Most importantly, it is a disability so intrinsically social that the reactions of average people make it better or worse. It is a heck of a lot easier for neurotypicals (people with the most common kind of neurological system, that is, no Asperger, no autism, no biolar, no dyslexia, no ADD or ADHD, and so on) to deal with one another. It requires more effort for an average person to provide "accommodation". Buildings have to be redesigned, or in our case, average people need to use more patience, more explicit verbal communication, and less socially complicated employment situations. However, from the number of interviews I have had over three years, I'd have to conclude that is asking too much from the majority of average people.

Of course we regard the Nazi solution or the Spartan solution to disability, outright homicide, as unacceptable. Would housing a college graduate in a comfortable facility for life be acceptable? Not if we need the technology professionals.

It would certainly be costly. I estimated that two states and one Federal government lost $25,000 in lost taxes and student loans, Food Stamps, and after a cancer diagnosis, Medicaid too, while losing $45,000 personally between 1996 and 1999. I'd have to add $2,000 to $3,000 for the cost of one on-campus semester's worth of career re-training at state expense.

What would the psychological cost be? I applied for SSDI at the same time I applied for vocational rehabilitation in 1997. I had come to wonder if I was functional at all.

The primary thing one can do having AS is to study the neurotypical world as best as one can: sociology. Emile Durkheim's Rules of Sociological Method is directly applicable to our lives. AS is much like anomie, can lead to emotional disturbances, results in a lot of negative responses, and as a result of social reaction, the possibility of suicide. The theories of George Herbert Mead (symbolic interactionism), Erving Goffman (dramaturgical analysis), Julian Rotter (attribution theory) are also very applicable.

Terrific parents are also very important. My mom rode the backs of special education instructors and officials in our MD county between 1977 and 1983. Yes, we had an overwhelming proportion of boys, we had one rare girl in the grade ahead of me and another two grades behind. Parental tolerance is going to be important especially if the job search with a degree has to take longer.

The less an AS teenager can be in the presence of immature classmates, the better. It could be helpful to tell him or her why some classmates are immature, possibly jealousy, "if you can't beat them, beat them up emotionally"

Age-appropriate social contact is crucial. I had forgotten what friends were for between the tenth grade and the second year of college. I have them now, and I am working on related matters. Nice to see one man married for 10 years.

Finally, I think one needs to try to emotionally work out one's self concept. Would the job or the relationship be a "cure" for Asperger? Of course not. Asperger is hard-wired into the human nervous system. One needs to accept that one may learn to mimic neurotypicals, and may well be accepted by some, but not by all, and will never become one. I understand that is hard for family members too, but it may only be a matter of good things in adult life delayed, not ruled out.

Posted by: Christopher | February 28, 2007 4:57 PM | Report abuse

to Margaret, (or should I say, worried, since you seem to be one and the same person)

In the spirit of your eloquently quoted post, please do us all a favor and don't have any children, because apparently you are a neanderthal and your children will be neanderthals as well.

I think in the past the disabled were thrown in institutions. I suppose you yearn for those days.

Heaven forbid should you be in an accident and become paralyzed or disabled in some way. I suppose you won't ask for a handicapped plaque and you won't collect any sort of assistance offered by the government for your needs!

Sorry to say, Karma is going to come back and bite you a big one!

Please leave this forum to those who want to look forward to the day that autistic children will heal and/or autism can be prevented.

Posted by: fairly isolated | March 2, 2007 4:34 PM | Report abuse

After reflecting on my earlier post, Monday morning quarterbacking is twenty-twenty hindsight, and leads me to offer one important lesson about the potential contributions of people with so-called disabilities.

Example of 20-20 hindsight: U.S. World War II propaganda film, shown to troops and the public: (paraphrase) we should have entered the war with Japan in 1931 in Manchuria instead of 1941 in Pearl Harbor. Very moving words, "the course of future events ...are why millions of you are in uniform today."

The more and more I think about it, judging from my career in computers, I feel the least bit sorry now for the thirty-odd places that did NOT hire me. It is reasonable to suggest that I would have contributed weightedly to the career of social research, just as I have in Web design, database design, and computer programming. Both utilize similar parts of the brain.

For me, not working in Career A meant working in Career B, probably for more money.

For them, this is a lesson worth repeating, repeating, and then repeating again, especially if you have to read resumes or interview people as part of your living. Maybe a candidate's people skills glass is a couple of ounces less than full.

But if you disregard the other contributions a candidate has, you've done him or her a disservice today. But you've done yourself and your company a disservice today and possibly forever. People seldom forget and seldom forgive. And some of your hard-earned tax dollars, instead of addressing an important problem, are going to the best-educated Food Stamp recipient your state's human service office may have ever seen. To address a problem that never should have existed. A problem that would not have existed if you and other people did the right thing.

What will tomorrow say about YOU today? Think about that today.

Posted by: Christopher | March 21, 2007 1:50 PM | Report abuse

Another critical subject is zero tolerance and it isn't just for the victims and their parents. It's for everyone.

After a Master's in sociology I've had about enough theoretical underpinning in the looking glass self, attachment theory, and a lifetime of Asperger to conclude that we have to silence verbal and physical bullying before the victims learn to victimize themselves - mentally.

And socially withdraw or God forbid, commit suicide, which happens rather too much. I had taken a vacation from the human social world between the tenth grade and the second year of college because of grade nine. Fortunately, suicide was not an option, or you wouldn't be reading this.

Zipping the lip is not the same as mind control. You still get to think and feel what you like. But you don't get to express if it can do someone harm.

Some eight years ago I entered the work force for good, as a Web developer and database designer in Arlington. And that is why zero tolerance benefits all the other children, too.

Schools are intended to prepare children for adult life.

Here is adult life for the next generation. You say the wrong thing to someone at my place of work or any other office, you hurt the productivity of a smooth running social system, you've got a problem that will follow you for the rest of your life. Whether or not you get fired.

But you say you are human.

Good managers in good companies disagree. Sometimes you have to be better than that. Self-control.

We know why students get bullied. Asperger, disability. Sometimes homosexuality or something else entirely. But bullying is not OK. The adult world is wising up. So young people, now it is your turn to wise up.

And this will only become more critical as we dig deeper and deeper to find talented people to fill our jobs. Some with disabilities. Some gay. Whatever.

The adult world expects employees to either believe in equality, and I do, or not indicate that they think otherwise. Or else.

Many parents would scream over their children's zero tolerance punishment. But better that than deal with a termination twenty years later. We already knew that teaching prejudice was child abuse. That is why we are teaching equality. Or at least self-control. For the good of others and one's self.

Posted by: Christopher - again | March 28, 2007 6:56 PM | Report abuse

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