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    The Checkup:

Questions Unanswered

By Mike Snyder

[Author's note: When I approached Stacey about guest blogging about my son's development, my thought had been to construct a chronological narrative of my experiences. I'd like to continue with the narrative (though I'll try to condense it). It might seem tedious and overwrought for people who've been dealing with similar -- or much more challenging -- issues, but I'm hoping your comments might help those of us who are still in the early stages of dealing with the special needs of our children.

I really appreciated all of the experiences, insights and information shared last week, especially the personal stories and links to resources. They were extremely helpful and uplifting, just what I'd hoped for. My wife and I also heard from several friends who shared stories about the special needs of their children and the challenges they faced. In most cases, we had no idea.

Because this isn't a Harry Potter book, I want to share that my son has an IEP for educational delays in expressive language and gross and fine motor skills and is enjoying himself in a half-day program addressing them. We're still pursuing a medical diagnosis, but we're doing fine. Thanks for all the kind words.]

Initial Screening

On May 1, I took my son for an initial screening with Fairfax County's Child Find program at their center in Lorton. I had prepped him for the visit, putting it in the most positive light -- telling him he would get to go to a school and play games, which was fairly accurate. I had prepared myself emotionally, too, telling myself not to worry needlessly. It would be all right, my wife reassured me. Our son was okay. He/we just might need some help working on a few things. That's why the program existed, after all.

But as the screening progressed, my heart began sinking. I watched for an hour and a half as my son seemed unable -- or unwilling -- to follow the screener's instructions and answer her questions in several areas. I say unwilling because I knew he knew the answers to some of the questions, but when she asked, he seemed fixated on a toy fire engine and avoided her attempts to engage him.

Afterwards, she asked for permission for an observation visit at his daycare and said she would write up her review and recommend him for a full screening.

Okay, fine. But then I mentioned the elephant in the room: "You haven't mentioned autism. That's not what we're talking about here, is it?" Her reply was chilling. It went something like: "Well, there are a lot of different areas on the spectrum." I'd heard of the spectrum, but it seemed like there were a lot of grey areas. She offered a cursory explanation, touching briefly on high-functioning autism. That put a lump in my throat.

I had promised my son pancakes for lunch. I could barely eat. In fact, I nearly broke down. I kept thinking: What would his life be like?

At home, I realized I had gone into this almost totally uninformed. I checked -- again -- the Web sites of the Centers for Disease Control and the National Institute of Mental Health about autism spectrum disorders. Reading about different symptoms only fed my fears as I tried to think back to how my son behaved between one and two years of age. Was his eye contact poor then? How about now? What about repetitive behaviors? He liked to run back and forth between the couch and a chair while babbling something incoherent. Was that repetitive behavior? Or was I being hypersensitive?

I shut down the computer feeling truly overwhelmed, a natural reaction for many, I'm sure.

My question this week is: Where else should I have gone at this juncture? Last week, NYMOM posted a link to autismspeaks.org, which has a very nice section on coping. A friend passed along that she had adopted the Son-Rise philosophy when her son, now in 11th grade, was a toddler. Another friend highly recommended a book called "Quirky Kids" (See a recent On Parenting post -- "What's Wrong With Quirky?" -- and a Newsweek article that cites the book's author.) Does anyone else have any helpful recommendations?

Next Week: Reaching Out for Support

By Mike Snyder |  October 30, 2007; 7:40 AM ET  | Category:  Child Development
Previous: Cough, Cough ... Now What? | Next: Family Planning Gone Too Far?

Comments


I'm the parent of a autistic, non-verbal son whose 19 now. My son currently lives in a residential program run by Stepping Stone and attends the National Children's Center in Washington, DC. Right now, his mother and I are preparing to transition him from the current program he's in to an adult program since he'll be 21 in two years.

In terms of initial screening and diagnosis, might I suggest John Hopkins' Children Center in Baltimore. That's where we took our son after it was suggested he might be autistic. We did this around this third birthday and were quite impressed because they did a completely comprehensive examination of him. In addition to examining him, they asked his mother questions concerning her pregnancy (eg. complications, health issues, etc) that might have shed any light in determining his autism.

Once it was determined our son was autistic, we were able to position ourselves in determining what type of program would meet his needs.

If you have the money or the insurance and haven't done it already, check out Hopkins' Children Center. I think they may be able to provide some of the answers you're looking for.

Posted by: Michael | October 30, 2007 8:13 AM | Report abuse

I have found reading blog written by people with autism is very enlightening. Its changed my whole view on autism. I think the one that has influenced me the most is http://ballastexistenz.autistics.org/

She has some videos on you-tube that demonstrait what he life is like. Here is one of them: http://ballastexistenz.autistics.org/?p=220

That all said, I don't have a child with autism or anything. I grew up with a family active in my local ARC (motivated by a mentally retarded uncle), so I have a little awareness of the difficulties families go through. What facinated me about that blog is how there are people out there that think a cure is not the way to go. Me? I don't have enough personal expierence with autism to know have an opinion. I just thought it was worth a mention as a counterpoint to Autism Speaks.

Posted by: RT | October 30, 2007 8:31 AM | Report abuse

"Quirky Kids" is a great book with many fabulous resources listed inside. There are several great books on Sensory Integration Dysfunction that I will look up.

Our initial screening was tough because our daughter was having a great day. She was cooperative and responded appropriately to all of the doctor's questions. She did not exhibit any of the behaviors we see at home or her teachers se at school. The dr. kept looking at my husband and I like we were crazy to have brought her there! We ended up with a completely off-base diagnosis based only on our and her teachers questionaires. We are able to recieve some therapies based on it and I am hoping that after we meet with some of those people we will be able to change/update her file to be more accurate.

Posted by: Momof5 | October 30, 2007 9:01 AM | Report abuse

Can someone tell me, why is autism such a hot topic now? Why is everyone in this country obsessed with it? Not a day goes by without some new headline or story. What's going on here?

Posted by: ESB | October 30, 2007 9:05 AM | Report abuse

Can someone tell me, why is autism such a hot topic now?

Posted by: ESB | October 30, 2007 09:05 AM

The number of people with autism has increased dramatically over the past 20 years. They don't know if this is just because of better diagnostic techniques or if autism is actually more prevalent than it used to be.

Posted by: Katie | October 30, 2007 9:12 AM | Report abuse

Again, I want to just reassure you that autism is a spectrum disorder and your son sounds very mildly on the spectrum. If he is talking and communicating his needs that is a huge first step. My daughter is mildly on the spectrum too. Although she will have a lifelong disability, I do think the early intervention is a huge help. Also, it is important to note when they are in the high functioning side, autism can be more of a difference then an actual disability.

Posted by: foamgnome | October 30, 2007 9:46 AM | Report abuse

I just wanted to say I am following this series with interest and thank you very much for being willing to share your story!

Posted by: Shandra | October 30, 2007 9:50 AM | Report abuse

My son will be 3 next month. He has autism which we started treating with biomedical interventions in 9/06. Since that time, he has made so many advances it is almost unbelievable. There have been steps back of course, but we are moving forward very well. We have been fortunate to have found the right treatments for our son. Others are not so lucky as the things they try do not produce significant results. My advice to a parent dealing with an autism diagnosis, is to find a support group or just someone to talk to and cry with (your spouse may not be able to deal with the grief/diagnosis yet). Start reading/researching autism treatments immediately and find a DAN! (Defeat Autism Now!) doctor who can help your child. Find this info and more at www.autism.com. Start treatments as quickly as you can, because young children respond much more effectively to treatments.

For me, being able to do something for our son and seeing him emerge from the autism "shell" has been what has kept me from breaking down. At this time, we have chosen to spend our money on biomedical treatments instead of ABA. We have relied on our Early Childhood Intervention specialists to teach us Floortime methods and help us with speech and OT.

In 9/06, our son didn't speak, had no gestures, screamed and cried when people (including his sister) were around, made only initial eye contact, didn't have a clue that his parents could help him with anything, rarely smiled or laughed, lined toys up obsessively. A very classic case of high-functioning autism. He did like to be held by me tho. Today, he speaks in phrases, can request what he wants, follows his sister around, calls us mommy and daddy and has said "I love you". We also get hugs. Yesterday at his regular (!) preschool, he gave his version of a kiss (he ducks his forehead at you) to a little girl who was crying. No one told him to "comfort" her! We think this is his best thing yet.

Sorry for the long winded post, but I would like to stress that progress can be made. You must start quickly, start early and treat your child's medical conditions that are causing the autism symptoms. God bless all of you who are struggling with this. Our little ones do bring us so much joy along with the pain.

Posted by: texasmom | October 30, 2007 9:58 AM | Report abuse

There was an article in Time magazine awhile ago that suggested that autism (along with bipolar disorder) is the new ADD. In other words, it's the most widely diagnosed, widely medicated disorder out there.

I'm worried that a lot of kids who are simply quirky are now being medicated and IEP'd for what in our generation was simply considered a learning difference of a personality difference. Children learn at different rates and they're not all alike. I'm afraid that overdiagnoses of many of these disorders is one of the unfortunate side effects of No Child Left Behind.

BTW, when we lived in Fairfax County, we were urged to medicate our six year old son with antipsychotic drugs for his supposed asperger's so that he would be a cooperative little student and not bother the teachers in his classroom. We were told that if we did not do so, he would likely be labelled emotionally disturbed and removed from a regular classroom.

He is now a bright happy honor student in another school district where his gifts and unique viewpoint are prized and honored. Could the fact that the classes are HALF the size of Fairfax County's have anything to do with this? Maybe it's the fact that he now has experienced teachers with years in the classroom who have the perspective to appreciate unique kids (versus the alarmingly high rate of teacher turnover in Fairfax County). My suggestion to the poster: seriously consider moving before you medicate your child.

Posted by: Anonymous | October 30, 2007 10:00 AM | Report abuse

"In other words, it's the most widely diagnosed, widely medicated disorder out there. "

Do they medicate kids for autism? I had never heard this before. My understanding is that autism is sometimes accompanied by other problems (like ADD) and THOSE are medicated, but I have never heard of a medication for autism.

Posted by: va | October 30, 2007 10:05 AM | Report abuse

"My understanding is that autism is sometimes accompanied by other problems (like ADD) and THOSE are medicated, but I have never heard of a medication for autism.

Posted by: va | October 30, 2007 10:05 AM"

That's correct to the best of my knowledge. Medication is used to treat associated conditions such as seizures or ADHD. I don't know of any meds for autism.


Posted by: Anonymous | October 30, 2007 10:26 AM | Report abuse

Just wanted to put a good word in for the Child Find center in Lorton, which the author mentions. We took my child there for some speech problems about two years ago. Fortunately for us, the problems were only temporary. I just wanted to mention how impressed I was with the center, the staff, and the examination they gave my daughter. They did a great job. I highly recommend them to any Fairfax parent who is looking for insights into their child's issues.

Posted by: Jen | October 30, 2007 10:27 AM | Report abuse

Can anybody give me some advice? There's a 5-year old on my son's soccer team that I'm coaching who I'm having problems with and every gut instinct tells me that he needs help of some kind. Here's the symptoms as I can describe them:

1. Whenever I'm trying to talk to the team or set up a drill, he's moving around and not listening and frequently tries to take the ball away from me (could be ADHD?)

2. But if I give him a specific task ("can you line all of the balls in the center circle?") he's extremely focused and will do it flawlessly (this is what made me think Autism/Aspergers, although his language skills seem OK)

3. He's bigger than most of the other kids, and he has a tendancy to foul a lot. The worst part is when somebody on the other team scores a goal, on more than one occasion he has crashed into them from behind after the ball goes in. Maybe just overcompetitive?

4. Whenever I call a foul on him or try to talk to him after he knocks somebody down, he'll get upset and usually runs to the sideline (even during a play) and he won't leave his mom's lap for 5 minutes


I can live with 1, 2, and even 4, but it's the third one that I really have to deal with. I can't get through to him when I try talking to him after a foul and if I can't get him to stop I can't let him play because I'm afraid he'll hurt somebody. I'd really like to be able to talk to his mom and say "I've done some research and I think you might need to get him tested for ___?___" Does any of this sound like Autism, or is there anything else anybody can suggest I research? Thank you

Posted by: Atlanta coach | October 30, 2007 10:30 AM | Report abuse

I don't think from what I have read they medicate kids for autism. Some autistic kids have medication for other types of problems like ADD/ADHD, sleep disorders but not autism in itself. Especially since they really don't know what causes autism and the general theory there is a variety of reasons that may cause the symptoms that they are labeling as autism. One thing to keep in mind that autism is not really a disease as we know it now. It is a series of symptoms that can be caused by many different things. Ie more then one source producing similar symptoms. Autism, statistically speaking, is not really on the rise. This a common misconception. Basically prior to the 90s, the actual definition of autism was different then one it is today. Today many more kids fall under the umbrella of autism spectrum disorder because the definition was widen to include many more types of developmental delays/ behavioral symptoms. So while the numbers are increasing, we have no comparable measure prior to 90s. To be honest, as a mother of a child labeled on the spectrum, the label is not what is important. It is getting your child the help they need. I do agree this new found observational diagnosis at age 1 is really premature. Because there is not enough data to show that the number of positive indentifications based on that criteria will lead to truly autistic person later on, is not shown yet. But getting kids in early and starting services early is a positive. In the false positive world, the kid would have grown out of the problem and no harm was done. Although I say that lightely because the misdiagnosis leads to all sorts of undue trauma for the family. But my guess as autism research increases, they will find several genetic or biomedical causes and the autism spectrum definition will be refined to included several different disorders. But I think people hear the word autism and immediately think the worse case scenario. I know when my kid was first suspected of being on the spectrum, my first question was "is she some sort of group home candidate or are you talking about some run of the mill learning disability that won't be any real problem outside the academic enviroment." Of course the so called professionals couldn't tell you squat. But from what I observe, my daughter may have some academic problems but overall she will be a normal functioning human being who is a little quirky. I don't want the blogger to get soo upset because it may be the same outlook as my daughter. I can tell you that the kids in her autism class at preschool seem just a little different. Only a few were really very serious forms of the disorder. It is a diagnosis that scares the life out of people. But mostly I wish people who take the diagnosis as it is too early to get scared. Concerned yes, scared silly -too early to tell.

Posted by: foamgnome | October 30, 2007 10:43 AM | Report abuse

From the info you post, it's hard to say. He may just be immature for his age- I think a lot of kids really aren't ready for competitive sports at 5. I would agree that you can't let him hurt the other kids though, so I would definitely talk to his mom about that. Does he do this at practice or only during games?

Posted by: to atlanta | October 30, 2007 10:44 AM | Report abuse

Atlanta coach-Again, talk about needless worry. Simply lining up the balls and being focused is not what autism or aspergers is like. Most kids do line up things and find it interesting. It is a problem when it is the only thing they do. They do it constantly or don't understand what the other function of the ball is. This kid clearly understands what a normal function of a ball is. He is probably just focused because it is a task he has complete control. I don't know as much about ADD/ADHD but from what little you wrote, I don't think this a clear sign of it. Again, I think if the kid clearly had ADD the school system would have informed the parents to begin an evaluation. I think with your limited exposure if you mention autism, your likely to freak the parents out needless. Now this kid may have autism but I don't think that would be true based on what you wrote.

Posted by: foamgnome | October 30, 2007 10:50 AM | Report abuse

whenever I take my baby in for potential surgery consultation, I lose the rest of the day in a PTSD haze. I go on about my day, but everything is numb.

Posted by: DCer | October 30, 2007 10:53 AM | Report abuse

Risperdal has been approved as a medication for some of the behaviors associated with autism (severe aggression and self-injury) but it is usually used as a last resort when the child doesn't respond to behavioral interventions and is at risk of hurting himself or others. I've only met one child on this medication. As far as I know, this is the only medication that has been approved specifically for autism. And the vast majority of kids with autism that I have met are completely unmedicated. If anything, they are the opposite--parents try to avoid medications because of negative side effects and concerns about neurological damage.

The only "medication" (and it's not really a medication at all) that I know parents give to autistic children regularly is melatonin. Children with autism are notoriously bad sleepers--not ever settling into a regular sleep schedule, waking often at night, taking hours to fall asleep and fighting it the whole time. The melatonin helps trigger their body to know when to sleep.

Posted by: Sarah | October 30, 2007 11:02 AM | Report abuse

As a speech/language pathologist, I see a lot of children on the autism spectrum. Certainly early diagnosis and early intervention are important keys to improvement - even if you are only looking at language delays and not autism.

Once you have a firm diagnosis, I would encourage you to look into RDI - Relationship Development Intervention as a possible therapy route. It is not the ONLY appropriate therapy by any means, but our clinic has seen some very positive effects.

Posted by: Lnfitzp | October 30, 2007 11:04 AM | Report abuse

Thanks to "to atlanta" and "foamgnome". As I say, I have no idea if Autism would explain his behavior (seems like probably not), but he's the only one out of 11 kids where my gut screams "something wrong". It's been saying that since the first practice, but I just don't know what it could be. ADD/ADHD seems more likely. I just don't want to kick him out until I've tried to get him more help. Thanks again for responding

Posted by: Atlanta coach | October 30, 2007 11:05 AM | Report abuse

Atlanta coach-I think if your gut says there is something wrong, your probably right. But it may not be autism (doesn't sound likely) or ADD/ADHD. There are host of other developmental delays, learning disabilities, and behavioral disorders. I would leave it up to the professionals. If you know the teacher, you could casually mention it. Because the school system is in a better position to recommend an evaluation.

Posted by: foamgnome | October 30, 2007 11:20 AM | Report abuse

If this research center has not already been mentioned, take a look at California's UC Davis M.I.N.D. Institute.

http://www.ucdmc.ucdavis.edu/mindinstitute/

It was started with state funds.

Posted by: gottabeanon | October 30, 2007 11:29 AM | Report abuse

John's Hopkins children's center is called:

Kennedy-Kreiger Institute

I'd go there after Child Find. I had a friend who was told her daughter was autistic (by Child Find in Lorton). She did a follow-up at Kennedy Krieger. They said the child had a speech/language deficit, but was NOT autistic. Get a second opinion.

Posted by: Amelia | October 30, 2007 11:32 AM | Report abuse

Are you friends with the parents? Do you know anything about how he is doing in school? It doesn't sounds like it. This kid could very well be getting special help, and soccer may be something he is trying - for fun or as part of a plan. My friend has a son with developmental delays. He has been in Fairfax's early intravention program pratically since birth. He is 5 now and will be in regular kindergarten next year. They have him in soccer now, and they like that its the only time he is not seperated from "normal" kids, and he is treated like everyone else. Does the coach know about his problems? I don't know if they told the coach, but I'm sure the coach knows "something" is up. OTOH, does the coach need to know? I doubt it. And how would they feel if the coach came up and said something was wrong, when they have worked for 5 years to catch him up and get him ready to be in groups with all the "normal" kids? I think it would be a little off putting.

In short, perhaps a conversation about the behaviors the boy does that are disruptive might be in order, but do not go down the road of trying to diagnose something!

Posted by: To Atlanta coach | October 30, 2007 11:44 AM | Report abuse

Posted by Amelia @ October 30, 2007 11:32 AM:

"I'd go there after Child Find. I had a friend who was told her daughter was autistic (by Child Find in Lorton). She did a follow-up at Kennedy Krieger. They said the child had a speech/language deficit, but was NOT autistic. Get a second opinion."

I cannot second this enough. A diagnosis of this kind is life changing. That, coupled with the breadth of the symptoms covered by the autism spectrum, means that getting a second opinion is well worth your time and money.

Posted by: David S | October 30, 2007 11:55 AM | Report abuse

After following the string of comments on today's post, I wanted to add that when I brought up my concerns again about the possibility of autism after a subsequent testing appointment, a Child Find psychologist was very explicit about the staff there not being qualified to make medical diagnoses. Their main concern is identifying education delays and coming up with educational plans to address them. Unfortunately, it can take months of waiting to get an appointment with pediatricians specializing in the diagnosis and treatment of autism spectrum disorders. That's a separate track. However, Child Find does work with children who have been diagnosed.

Posted by: Mike | October 30, 2007 11:59 AM | Report abuse

A book that really helped me deal with my emotions when my son was diagnosed with autism: _A Healing Family_ by Kenzaburo Oe. He won a Nobel for literature, and this book is the story of his family and oldest son who has autism. He talks of the frustrations, challenges, and human failings of the family members, but also finds the joy, rewards, and humanity in the situation of raising a child with multiple disabilities.

After reading the book, I began to appreciate all the good people who came into my family and my son's life. People we would never had met without my son's disability. Having the child I have is an incredible gift, and brings so much richness to the lives of everyone around him.

Please don't misunderstand, it is also hard and frustrating. Yet, I'm a better, more humane person than I would have been without this child, and it was OE's book that let me see that in myself, and in others who've been affected by having my boy in their lives.

I think I need to go reread that book. We're struggling with a discrimination situation right now, and I need some comforting. If you're curious about our son's situation: http://www.insidebayarea.com/oaklandtribune/ci_7311289

Posted by: Sue | October 30, 2007 12:24 PM | Report abuse

Unfortunately, it can take months of waiting to get an appointment with pediatricians specializing in the diagnosis and treatment of autism spectrum disorders. That's a separate track. However, Child Find does work with children who have been diagnosed.

Posted by: Mike | October 30, 2007 11:59 AM

Free advice from someone who's been there - my son is 15 now. Call back on a regular basis for that appointment. Call up every week, and politely ask if there have been any cancellations, and if your child can get an appointment sooner. Be polite. When you don't get a new appointment, say, "Thank you for checking. I'll call again next week to see if you have any openings."

Then call again the next week, and repeat. If you are speaking to one person every time, learn the name of that person. Say: " Hi [name], it's Mike again. Could you please check..." and "Thanks, for checking, [name]. I'll talk to you again next week."

I promise, after 3 or 4, maybe 5 calls, the receptionist/scheduler will get you in. S/he will get tired of the weekly call, not in a bad way if you are always polite and friendly, and will get you that appointment just so you stop calling.

This works.

Posted by: Sue | October 30, 2007 12:36 PM | Report abuse

"Are you friends with the parents? Do you know anything about how he is doing in school? It doesn't sounds like it. This kid could very well be getting special help, and soccer may be something he is trying - for fun or as part of a plan. My friend has a son with developmental delays. He has been in Fairfax's early intravention program pratically since birth. He is 5 now and will be in regular kindergarten next year. They have him in soccer now, and they like that its the only time he is not seperated from "normal" kids, and he is treated like everyone else. Does the coach know about his problems? I don't know if they told the coach, but I'm sure the coach knows "something" is up. OTOH, does the coach need to know? I doubt it. And how would they feel if the coach came up and said something was wrong, when they have worked for 5 years to catch him up and get him ready to be in groups with all the "normal" kids? I think it would be a little off putting."

First, sorry for the huge quote. Second, as someone who has worked with children extensively during "out of school" time through gymnastics, swimming, and general summer camp, believe me, we (as in those of us who work with kids in non-school settings) WANT to know if something isn't quite 'right' with your child. It allows us to appropriately address situations as they arise. We absolutely are not going to announce that Johnny B. has such and such problem to everyone else. But those of us who work with kids in a no school environment often find ourselves lacking the critical information to make life a little bit easier on the child and ourselves.

Back when I first started in the late '90s, it was a height of "Let's take our child off Ritalin for the summer and not tell the camp!" Oh boy. One, if you want to take your kid of medication, that's your decision, but PLEASE PLEASE PLEASE let the staff know that your child has a medical condition-how we handle an ADD kid is different than a "normal" kid, particularly when they act up. Letting ALL the people who work with your child in on something like that has better results for everyone involved. Otherwise, its a terribly frustrating time for the people who work with your kid, your kid, and yourself.

So, I guess my little public service announcement is over. 99.9% of us who work with kids do it because we like/love kids and want to share a particular passion with them, regardless if they're "normal," "handicapped" in some way, or from Mars. And we want to make it as much as a positive experience for your child as possible. So please don't be afraid to pull your child's soccer coach/swim instructor/dance teach aside and say "Hey, Susie has XYZ, and she's a good kid, but sometimes ABC happens." Believe me, it is deeply, deeply appreciated.

Posted by: Birdie | October 30, 2007 2:30 PM | Report abuse

Atlanta Coach- it could also be more simply shy/unease with social environments mixed with some anxiety issues/OCD.

But you touch on some of the good stuff! Austistic kids often have very focused very brilliant sides to their behavior. I have to say I think if the world didn't push that everyone needs to be a "team player" and sincerely taught that being a loner or being friends with someone different from you is just fine, some of the downsides of autism wouldn't be quite so bad.

But, from what I see, bullying, teasing, outcasting, taunting, and all that still goes on just as much as ever.

Posted by: Liz D | October 30, 2007 2:57 PM | Report abuse

Coach,

As the brother of one with functioning autism, I see enough in your description to give pause - although I wouldn't go with an autism label at this point. I'd be stunned if the parents aren't aware their child is at least "acting differently" but understand that they haven't spoken about it with you. After all, if there is an issue, they could be working towards mainstreaming - and sometimes that works best if you don't mention the child's condition to everyone you are associated with. Especially if they are worried that you might not treat him like everyone else if your suspicions were confirmed.

I'd talk with the parents and mention the fouling issue. Address specific issues and not general concerns. If they indicate a willingness to discuss the fouling issue with their child, then proceed with helping them teach the child about the rules of the game. This is one area where you may actually be able to make significant progress, because its more intelligence based than socially based.

Posted by: Another post for atlanta coach | October 30, 2007 2:59 PM | Report abuse

I have a son who is now nearly 3 years old, and he is autistic. To the author of today's "On Parenting" piece - I have found that worrying about what your son's life as an adult will be like at this point is premature. There is a lot of development that can happen in the next several years. The most significant thing you can do for your child is get him in an early intervention program - every state is mandated to have one. There are several good books ("1001 Things you can Do about Autism," "The Out-of-Sync Child," "The Out-of-Sync Child Has Fun", among others.) I can't believe I'm recommending it, but I read Jenny McCarthy's new book, "Louder Than Words", and did so originally with great skepticism. What does a former Playmate of the Year have to say to a "normal" autism mom, right? Well, I was wrong - she may come from a world with different values and larger pocketbooks, but our sons had similiar stories, and more importantly, she also encountered limited knowledge of autism treatment on the part of many of her physicians. There wasn't a "Now that your child has been diagnosed with autism" pamphlet handed to her at the pediatrician's office, and she had to learn about resources and treatements by word of mouth. What she learned, and eventually I did, too, was that some physicians believe that there are biomedical interventions for autism that can work alongside the behavioral interventions. I am well aware that some charlatans and quacks have offered expensive alternative therapies with no known benefit to desperate parents. At the same time, there are reputable physicians, some of whom are involved in the Defeat Autism Now! (DAN!) network, who have found that dietary restrictions, nutritional supplementation, and treatment of allegies and infections can have a strongly positive outcome with some autistic kids.

If I were to write that doctor's office pamphet on autism, I'd suggest to parents of newly diagnosed kids to find a DAN! doctor, work with a nutritionist to determine if there are food allergies to consider (and particularly, evaluate casein and gluten free diets), check out the Autism Speaks website, look into the local early intervention program in your county or school district, find a provider of behavioral intervention such as Applied Behavioral Analysis - ABA (many local universities have programs and clinics), and read everything you can on speech and language promotion, Floor Time and ABA, as well as Relationship Development Intervention and social skills training. I'd advise you to notice and build on your son's strengths - most kids "on the spectrum" are visual learners, so using flashcards and picture cards to label objects and to map out your planned activities for an afternoon are all useful.

Finally, I'd like to address the people who ask why is everyone talking about autism. When I went to medical school nearly 15 years ago, I was told it was a rare disorder that occures in maybe 1 in 10,000 children. Five years later, as I was pregnant with my daughter, my copy of "What to Expect When You're Expecting" stated that the incidence was 1 in 7,000 kids. Today, the CDC reports that autism occurs in 1 in 150 kids. In California, the number is 1 in 130. Since the disorder is more prevalent in boys, that works out to 1 in 94 boys. Several studies have looked at whether the increase is really just a perceived phenomenon, and that perhaps better diagnostic techniques have lead to a greater number of diagnoises, not an actual increase in the number of cases. All the epidemiology shows that there is a real increase in the incidence of autism - it is a serious epidemic with no identified cause or cure. This is frightening and frankly unacceptable. Consider the resources that we as a nation spend on prevention and control of other diseases of childhood that have nowhere near the magnitude of incidence. Consider also that it is estimated that the cost of an autistic person to society over the course of a lifetime is 3 million dollars. If for every 94 boys born, we can expect not a healthy worker to contribute to our economy, but someone who will consume 3 million dollars in extra care costs, then we have a significant public health and economic situtation on our hands.

Posted by: C.J.'s Mom | October 30, 2007 4:03 PM | Report abuse

Why *isn't* there a "now what?" pamphlet for parents of children newly diagnosed with a developmental delay? That was the worst part of the experience for me--getting this diagnosis but not being given any really good guidance for what to do next. Sure, there was the IFSP through the school system (very minimal and inadequate in our case) but that didn't come until weeks after the diagnosis. I think we got some scribbled titles of books to look into and articles to read from the doctor at Kennedy Krieger, and a recommendation to get on a waiting list for their preschool (we finally got called for an open spot two years later, when our son was too old for the program). What would really be nice is to be assigned a local mentor--a parent of an older child who has been through the system and can help you navigate until you find your footing and can move on.

That was four years ago. Maybe things are better now. I know the websites are better, and there's a MUCH better selection of books at major bookstores (and too many at Amazon--it's hard to know where to start). But I think parents still have to go looking themselves, and parents with few resources don't necessarily have the means or the knowledge to go looking.

And once you do start looking--watch out! There are so many conflicting opinions on the "right" way to treat things that you can easily be paralyzed with indecision. Dietary intervention? Floortime? ABA? Chelation? Speech therapy, occupational therapy, music therapy, sensory integration therapy, equine therapy, auditory integration training, vitamin supplements. And then once you DO make up your mind, you second guess yourself constantly. I still wonder if we should have mortgaged the house and spent the money on a year or two of ABA for our son.

Posted by: Sarah | October 30, 2007 4:40 PM | Report abuse

There is some special-ed data from the Department of Education showing that while diagnoses of autism have been on the rise, diagnoses of mental retardation have been on the decline in essentially an equal amount. In other words, the total of children with autism plus children with mental retardation hasn't really changed in the last 15 years. This data is not fully representative autism diagnoses and probably undershoots a bit, but it suggests that some portion of the autism epidemic may be attributable to children now being diagnosed with autism who would formerly have been diagnosed with mental retardation. Increases in the diagnoses of autism in recent years also correlate in time to changess in the DSM diagnostic criteria and the amendment of the Individuals with Disabilities Education Act to include autism as an eligibility category. These changes are likely to have raised awareness of autism among doctors.

As for "what to do next," I think a big part of that frustrating lack of information reflects the fact that there really isn't much consensus on what to do next. Unfortunately, none of the currently prominent biomedical treatments for autism has been shown to be consistently effective. No one treatment or group of treatments has been shown to work for even half of the autistic children treated. Chelation is dangerous even for approved uses (like lead poisoning). ABA can reduce the automatic behaviors symptomatic of autism, but thre's no evidence that it's actually treating the disorder rather than just the symptoms.

Posted by: Tom T. | October 31, 2007 12:36 PM | Report abuse

Read "Children with Starving Brains" by Jaquelyn McCandless, M.D. She points out that many of these kids have medical problems associated with their autism, and when you heal the child, the child can make cognitive gains. This is what we have done with our son, now four, for the past two years. He is so much better. Dr. McCandless is a DAN! doctor, please find one of these near you and go soon.

The Autism Research Institute website is great, www.autism.com. There are lots of resources on approaches to help your son get better. You don't have to take this diagnosis and live with it. Turn over every rock, we have spent our son's college fund getting him better, in hopes that he will actually need one when we get there. Good news, I think he is going to need it and there is still time to save up...

Posted by: LeslieinAR | October 31, 2007 3:19 PM | Report abuse

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