Anyone have an autistic child?

[ChadTower]

Interesting (I seem to be saying that a lot in this thread) ... there are studies that indicate that the divorce rate for couples with autistic children runs at 80-90%.

A larger than usual percetange of the kids I have worked with have divorced parents... often to the point that the father is MIA.  They just up and run off.  A couple had moms takes off but most of them were the men.  One was a stepfather who took off when the kid was diagnosed (but the kid wasn't his).

[Xam]

I don't have autistic children of my own, but my kids best friend is autistic as are the 4 children across the street from me.

My kids friend is "high functioning". He is for the most part "normal" but with a few clicks. I know when things aren't on pattern he tends to have more problems. He is also a great kid. He played on my kids basketball team and I was his coach. He was awesome in the fact that he tried harder than any other kid. He also showed more improvement than any of the others. He has since "graduated" from my team and made his schools basketball team.

The kids across the street vary from high to low "functioning". They are also great kids and are constantly at the house playing with my kids.

I guess my point is, autism is not a "death sentence". Many autistics lead productive and normal lives.

I hope this is the case with your child. I will keep your family in prayer.

Xam

[SirPeale]

They've said that our son Riley isn't autistic, but has many autistic tendencies. 

*shrug* whatever that means.  He's definitely got some issues.

[SirPeale]

I'm curious, has there been any link showing that autism is hereditary?

Even the slightest amount of research, as little as typing "autism" in over at Wikipedia, would show that autism is considered inherited by nearly all experts and theories.

There was an episode of Extreme Home Makeover where the parents had a child, and was diagnosed as autistic shortly thereafter.  They asked "is this hereditary" and were told absolutely not.  They had four more children.  Three of which are autistic.

[ChadTower]

There was an episode of Extreme Home Makeover where the parents had a child, and was diagnosed as autistic shortly thereafter.  They asked "is this hereditary" and were told absolutely not.  They had four more children.  Three of which are autistic.

That's practically malpractice right here.  If the doctor wants to give an opinion, that's fine, but they shouldn't be stating it as fact like that.  The doctor cannot possibly have the research behind him to state that as fact.

Then again, jim has a point about some parents... I've met more than a couple of them that wanted to blame anything other than their own genes.

[ChadTower]

Interesting bit of news

[CheffoJeffo]

Comments like those thrown by PBJ are the exact reason that I tell people to take all of the things you hear regarding autism with a grain of salt. If you buy a book solely because Oprah mentions it on her show, then perhaps his style of commentary is for you.

Me, I actually prefer some degree of rigour in the underlying science and I prefer that those who draw conclusions actually have some degree of expertise.

But what do I know ?

"Incurable after the fact" is the diagnosis that we receive from a guy who I probably wouldn't trust to fix the tilt sensor on my F2K ... and now he renders ridiculous assessments out of the air, based on his day job pushing other people's papers in academia ?

Done much research in neurological development, have we PBJ ?

Chad, who sometimes seems to be an expert in every field imaginable to man, even has to good sense to not draw any conclusions from the sounds bites in this one ..

BTW, Chad -- yep, I am 99% certain on him.

[ChadTower]

I'm not surprised.

That clip was really only "news" in that it appeared on a news website.  Still, anything that brings some positive looking progress, is worth trying.  You have to remember that in many ways the brain grows in the first couple of years according to the stimulation it receives.  This does have some small potential in that with the proper therapy, early enough, maybe the path can be altered in some kids.  Of course, early detection and intervention has been known to be a major key for a long time now.

[CheffoJeffo]

This does have some small potential in that with the proper therapy, early enough, maybe the path can be altered in some kids.  Of course, early detection and intervention has been known to be a major key for a long time now.

FWIW, I think this has HUGE potential ... where PBJ thinks that it is incurable (perhaps nobody mentioned to him what other class of people also exhibits abnormal brain growth in the same areas) ... that's why I didn't object so much to the story (IMPO, the science is still somewhat spotty given the age of the "big brain" revelation).

You are 190% right on with the early intervention ... I do hope that this can translate into that intervention (they don't mention in the story, but I believe that the "90%" number they quoted was not determined with a level of rigour that would be required ... hence the need for further study).

My objection is to the conclusion that PBJ draws with his normal scientific acumen ... based on no knowledge and tied to no thread of reason.

[CheffoJeffo]

You see, PBJ, you seem to be thinking along a specific line -- physically altering the brain.

You don't seem to have any concept of other ways of dealing with these, so you made a blanket statement that is, in a word, wrong.

You clearly don't have even the first clue that would be required to make such a statement, yet you do it anyway.

In your world, we would just have to write off autistic kids, stroke victims, etc ... however many excellent therapies exist AND WORK for these people.

Just because YOU don't know anything about them doesn't mean that they don't exist, so I once again observe that your statement is pretty much ---That which is odiferous and causeth plants to grow---.

[ChadTower]

The only way to get to early enough detection is to keep moving detection incrementally earlier.  We're not going to wake up one day and someone says "hey I figured it out - now we can tell in utero".  Not so many years ago you couldn't tell until a kid was way past the point where you could change his course.  Now we can tell at 2.  Soon we will be able to tell at 1.  That is substantial progress.

[ChadTower]

Yeah, but you're still going to be mainly looking at behavior therapy and such for the foreseeable future.

Research physical brain development in regard to reaction to stimuli in the first couple of years of life.  The solution here is not likely to be a drug or a surgery - it is going to be altering whatever stimuli may be causing this abnormal growth, or perhaps just adding additional stimuli to alter it.  Behaviour therapy is, at least with reasonably forseeable science, the way it will have to happen, and when it does it will be aimed at altering that brain growth, not just teaching the kids skills they would otherwise have trouble with.

[CheffoJeffo]

At this point, it should be pointed out that the research is still anecdotal and that this discussion is starting to veer off into the speculative.

There are a number of interesting theories out there (including ... oh heck, let's pick one ... linkage between Lyme Disease and Autism), some of which have associated and working therapies (aside from, or in addition to, Behaviour Therapy, of which I am a huge proponent).

[lanman31337]

Tag, I'm it.

I wanted to say to you fathers and mothers of autistic children that I am PROUD of each and every one of you for sticking around, not giving the child up for adoption because he or she is not "normal".  I've taught numerous autistic kids, and my wife was a TSS for numerous years with Autistic children.  They are some of the best kids, even during the times when they test your patience. 

If you guys/girls need info on services, don't hesitate to ask.

Peale - that Home Makeover edition had the play room that was a "stim" room.  Absolutely fantastic for that child.  I've found that stim can help in teaching new things.

[Jetson]

I have a 4 1/2 year old son who was formally diagnosed with PDD NOS in September.  As a parent the best thing you can do for your son is to get early intervention and get your mind past the grieving process as fast as you can.  You've got to realize that you have a chance to circumvent the problem with proper therapy.  As some of the other people have said on this thread, take advice with a grain of salt.  There is a lot of misinformation out there, and I have read more than you could ever imagaine about causes and treatments...but the import fact is...you must deal with it.  My son could barely answer a yes or no question at three years old, but now at 4 1/2 he is speaking and interacting and yes even reading.  We are very lucky that our school system has a progrem with speech and occupational therapy...it has made the world of difference in our lives.  The best thing you can do is see what kind of local and state support is in your area and get help.  So there is hope...you just have to committ yourself to do whatever it takes to get there.

Hang in there!

Justin

[ChadTower]

I've been thinking a bit on this... the Wii would make an absolutely fantastic occupational therapy tool for these kids if the right software were developed.  The Wiimote and Wii Fit balance board already encompass most of the hardware that would be needed for quite a bit of OT work.

[CheffoJeffo]

I've been thinking a bit on this... the Wii would make an absolutely fantastic occupational therapy tool for these kids if the right software were developed.  The Wiimote and Wii Fit balance board already encompass most of the hardware that would be needed for quite a bit of OT work.

While I'm not quite as enthusiastic as you are -- the Wii is indeed the console of choice for the kids I know with autism -- about 50% of the families I know with kids with autism have or are looking for them.

[ChadTower]

Where I'm coming from is cooperation and stamina.  It's really hard to get these kids to repeat OT tasks like jumping on one foot, balance games, basically remedial motor skills work.  Looking at how people react to Wii Sports, though, makes me think that if the exact same therapies were given in a true gaming setting... with a qualified OT there to keep the kid doing them cleanly... hell you could probably get the kid to do it for 3x as long with half the resistance.

[DaOld Man]

Anyone here that has an autistic child, or have a very young baby, need to read this:

http://www.cbsnews.com/stories/2008/05/12/cbsnews_investigates/main4086809.shtml?source=mostpop_story

[saint]

And then they should read this:

http://www.badastronomy.com/bablog/2008/05/12/vaccines-do-not-cause-autism/

particularly the Japanese study, and then the study from Denmark:

Now the first big epidemiological studies weigh in. One comes from Denmark, which eliminated thimerosal from childhood vaccines in 1992. A team led by Kreesten Madsen of the Danish Epidemiology Science Centre in Aarhus reasoned that if thimerosal were a major cause of autism, incidence of new cases should drop once it was removed. In the September issue of the journal Pediatrics, they report that, instead of declining, the incidence continued to skyrocket after 1992.

[ahofle]

And then they should read this:

http://www.badastronomy.com/bablog/2008/05/12/vaccines-do-not-cause-autism/

particularly the Japanese study, and then the study from Denmark:

Now the first big epidemiological studies weigh in. One comes from Denmark, which eliminated thimerosal from childhood vaccines in 1992. A team led by Kreesten Madsen of the Danish Epidemiology Science Centre in Aarhus reasoned that if thimerosal were a major cause of autism, incidence of new cases should drop once it was removed. In the September issue of the journal Pediatrics, they report that, instead of declining, the incidence continued to skyrocket after 1992.

I'm not sure how it's possible to 'prove' that the mercury in thimerosal doesn't have a link to autism with a study on autism rates.  There could be hundreds of other factors involved in those numbers.  We specifically requested thimerosal free shots for our kids.  They also have a flu-mist now that is mercury free.  Everyone says there is no connection to autism, but even if there is not I don't think avoiding the unnecessary injection of a toxic substance into my children is a bad idea.

[saint]

And then they should read this:

http://www.badastronomy.com/bablog/2008/05/12/vaccines-do-not-cause-autism/

particularly the Japanese study, and then the study from Denmark:

Now the first big epidemiological studies weigh in. One comes from Denmark, which eliminated thimerosal from childhood vaccines in 1992. A team led by Kreesten Madsen of the Danish Epidemiology Science Centre in Aarhus reasoned that if thimerosal were a major cause of autism, incidence of new cases should drop once it was removed. In the September issue of the journal Pediatrics, they report that, instead of declining, the incidence continued to skyrocket after 1992.

I'm not sure how it's possible to 'prove' that the mercury in thimerosal doesn't have a link to autism with a study on autism rates.  There could be hundreds of other factors involved in those numbers.  We specifically requested thimerosal free shots for our kids.  They also have a flu-mist now that is mercury free.  Everyone says there is no connection to autism, but even if there is not I don't think avoiding the unnecessary injection of a toxic substance into my children is a bad idea.

Neither do I - I think removing mercury/thimerosal is a good idea. I think avoiding vaccinations entirely out of fear of autism is a bad idea. I think the overall health of the country/world is better with vaccinations than without.

[CheffoJeffo]

FWIW, I have read the major studies and pretty much every one of them is flawed in some respect, regardless of which conclusion was reached. This is one reason why the controversy won't die -- people can't agree on any individual set of findings.

I fully believe that thimerisol causes bad things with some kids (and it ain't that good for adults either).

Absolutely -- it's hard to argue otherwise.

I used to be a believer in the "no linkage" theories right up until I sat down with a  prominent biochemist who has been studying the effects of mercury (in vaccines and dental work) ... now I am less certain.

And there is still thimerisol in some vaccines that are given to children today.

OTOH, I am not nearly convinced that vaccines had anything to do with autism in my children (I have 2 kids with autism) -- in theory (because I didn't know enough when they were 18MO to check the packaging), they were not been exposed to thimerisol in their childhood vaccinations.

OTOOH, my kids do exhibit very high levels of toxicity wrt heavy metals (as do many kids with autism). My wife had a Rhogam shot during the first pregnancy. My wife has old amalgam fillings in her teeth. Maybe there is something there ...

OTOOOH, if thimerisol in childhood vaccines was a primary cause, the overall numbers should be falling ... and they aren't.

And I TOTALLY agree with ahofle vis-a-vis shots for kids. 

[CheffoJeffo]

Neither do I - I think removing mercury/thimerosal is a good idea. I think avoiding vaccinations entirely out of fear of autism is a bad idea. I think the overall health of the country/world is better with vaccinations than without.

I would agree with this as well -- my kids are, and will continue to be, fully vaccinated.

For those who are concerned, there are steps you can take -- read the packaging for the vaccines (!) and choose to avoid the "cocktails" (there are some who believe that stress from multiple vaccinations is a potential cause) -- space them out, even though it may be more expensive in terms of money and time.

[CheffoJeffo]

Since this thread has already been bumped, there have been some developments in my younger son that may be relevant or of interest.

We had intended to put both kids on a strict GFCF (gluten-free, casein-free) diet at the start of the year, in addition to a regimen of dietary supplements, injections and whatnot. We ended up removing the casein (e.g. dairy) and going with the supplements and injections. We have not, as yet, removed gluten (e.g. wheat).

In that time, my son has come so very far in terms of his progress -- to the point where I am certain he would not be diagnosed with Autism today. Now, he isn't where he needs to be (he would likely be diagnosed with some other neurological disorder, although nobody seem to know what that might be), but he is conversational and interacts very well compared to where he was 6 months ago. It is almost night and day and none of the professionals who work with him can believe how far he has come.

At the same time, he has been undergoing IBI (Intensive Behavioural Intervention) every day for the last 10 months, which has no doubt contributed to his improvement.

And, since I saw it this morning and it may be of interest to folks in this thread, I'll add a link to an article describing the effects of Autism on the family:

http://www.citynews.ca/news/news_22671.aspx

OK, I'm done ... back to mourning the SubRoc cab that I couldn't take ...

[saint]

That's excellent news Cheffo, glad to hear it!

[ahofle]

Glad to hear of your progress! 

[DaOld Man]

I agree with everyone else that vaccines are indeed important. I just ran across that story and thought of this post.

I also agree that your news is excellent. Hang in there man, and love cures all.

[Ninten-doh]

In that time, my son has come so very far in terms of his progress -- to the point where I am certain he would not be diagnosed with Autism today.

Wonderful news Cheffo!   

[CheffoJeffo]

Thanks all!

Ninten-doh -- I am curious how things are going and if I can help in any way -- please PM me at your convenience.

 

[KDOG]

 To every one that has a son or daughter with this disorder keep your hopes up. I think some of the most important things for the children is a good family structure and knowledge of the disorder . I have a 7 yr old son who was diagnosed with pdd nos when he was 3. He has come a long way since then, most do-to working with at home, the school programs and teachers he has had. He finishing 2 grade this year and he made the honor roll. Now by no means is he a full functioning 7yr old or was doing second grade curriculum but he did the work they set out for him.

[Level42]

My son was born with three serious heart defects. He's been operated and he's doing fine now (6 already). Of course he will be a "patient" for his whole life, but he functions normally in every aspect. I know, a completely different story, but I can fully understand how you guys felt when you hear news like that.

Just wanted to show my support.


Oh, and quite incidentally, one of his best friends at school is a "mild" autistic boy.

[channelmaniac]

It took until my son was already in 2nd grade for the school to finally make the diagnosis that my wife and I knew for years - Asperger's.

He loved to hear the sound of his own voice... go to the mall and he'd want to sit in the entryway for what seemed like forever screeching to hear the echo. He has had some intense obsessions - like knowing where every water tower in a 5 mile radius was and wanting to see them repeatedly. He also used to collect broken road reflectors and at one time had over 100 of them.

The hardest parts are dealing with the way he sees everything in black and white. There's no middle ground or subtleties, but that's something we are always working on with him.

Overall he's a great kid, taller than almost everyone his age (he got a 26" adult mountain bike for his 9th birthday this year), and he likes to know the rules and boundaries to which he'll follow religiously.

Now if we could get him to feed his cat regularly...

RJ

[CheffoJeffo]

First off -- welcome channelmaniac.

To those who don't know who he is, he runs arcadecomponents.com, which sells rare components for vids, as well as classic computers and consoles. He also has an excellent set of repair logs (actually two, so I'll go update the wiki now).

Back to topic, we had an interesting experience last week. My youngest was sick and, when his fever crossed 105 and he was having difficulty peeing, we loaded him up and took him to the hospital. During the entire trip there, his behaviour was that of a totally normal, if a little talkative, child (e.g. improvements beyond what we have seen recently). We thought it might be our imagination, but a nurse told us that she had read about reports where high fevers coincided with "typical" behaviour in kids with Autism.

Something new for me to read up on ...

[EDIT: for typo]

[channelmaniac]

Thanks for the welcome!

We had a double whammy with our kiddo - He's about 2 years behind everyone emotionally and is taller than everyone his age. People think he's older than what he is which makes them look at him funny at times. He's been very self conscious about it. He knows he is different but still doesn't understand why.

How old is your kiddo with the fevers? My co-worker's son would spike fevers off & on for the first 2 1/2 years of his life but finally outgrew it this spring.

Raymond

[gourami]

I am technically autistic, but at 18, am not really a child any longer. I have the Aspergers form, but it is not considered to be that bad. I just generally don't have many friends, and most of those I do have are much older than I.

[vertygo]

My oldest also Aspergers, which is high functioning Autism. He does just fine, but we have had some rough times, to be sure. I highly recommend looking into special diets. For us, to get through some of the roughest times, we had to go completely gluton-free. It was a great improvement. Now he's 12, regular diet, emotionally stable, and is just a great kid. Chicks dig him, not that he picks up on it or cares, and close neighbours are asking about babysitting. The more you talk about it and accept it, the easier it gets (not that anyone believes that right away).

[pinballwizard79]

.

[Jdurg]

The human body is a remarkably complex machine and the true causes for certain conditions and diseases are completely unknown.  I came down with Type I Diabetes when I was 1.5 years old.  The disease has been known for centuries, but we still have no ---smurfing--- clue what causes it.  They have not been able to determine what causes the body to attack its own cells and destroy it.

Yet at the same time, I have also been remarkably healthy my whole life.  I got all my immunizations but also never came down with Chicken Pox.  I had no antibodies for it, so of course I was vaccinated prior to going to college to ensure I didn't catch it as an adult.  Still, it boggles my mind.

You and your child will be fine Ninten-doh.     You just need to ensure that you don't use the condition as a crutch, or as an excuse.  The problem that I see with a lot of people with children who have a condition or problem of some type is that they just remain in a constant state of denial bout the problem.  If the child misbehaves badly, they don't do anything to correct it.  They blame it on the disease or condition they have.  That's probably the worst thing you can do.  Having autism just means that you have to find different ways to interact.  You'll be fine.  Nothing like a good game of Donkey Kong or Zelda to put a smile on anyone's face.   

[Ninten-doh]

I can't believe it's been over 8 months since I posted about my son's autism diagnosis.  Time flies, and it has been the most difficult stretch of time in my life.  After feeling the sense of happiness and pride of dropping off my son for his very first day of school this morning, I wanted to post some thoughts that I have now that I’ve had time to accept his diagnosis and get the proper help for my son.

Here are the most important pieces of advice I received during that initial “shock” period last winter:

ChadTower – “One thing to burn into your brain right now:  You are his best and most effective advocate.”

Saint – “Being your child's advocate is one of the most important things you'll ever do.”

CheffoJeffo – “There is an absolute TON of mis- and incomplete information out there. For the most part, what you hear in the media is either incorrect or incomplete. The advice you get from professionals may be incomplete as well.”

I can’t stress enough how important it is to channel that initial sadness, anger, etc. into educating yourself as quickly as possible about the diagnosis, how it relates to your child’s behavior, and what options you have for assistance.  The problem for me, and I would imagine many others, is that you desperately want someone to say “This is what you need to do now.”  You want to find someone who has all the answers and can tell you exactly what to do.  Truth is, your most likely not going to find that person, and you can NOT blindly hope that the people you initially interact with in your county, school district, etc have your child’s best interest at heart.

We were so relieved in January when we found out that our school district had just pumped a ton of money into a new autism program for pre-schoolers.  Finally, at least we had some kind of luck!  However, through tons of research and speaking with other parents, we found that this program was ill-suited for our son as it was designed for kids on the more severe end of the autism spectrum.  We asked about how they planned to work on his social skills and if they had any “typical” pre-schoolers in the school for him to model after.  The response?  “Well, we have the 6th graders come and read to them every once in awhile.”  What?!?!  The rest of the conversation continued like that.  After months of investigating, calling, reading, we knew our rights and we took the school district to court and they settled with us the day before the court date.  He is now beginning an inclusion-oriented program at a school that is absolutely perfect for his needs.

Anyway, sorry for the long post.  I just wanted to express my gratitude to everyone who posted in the thread and sent me PM’s.  A special thanks to CheffoJeffo for taking the time to talk to me on the phone as well.  Nothing has helped more than speaking to parents who are in similar situations, so if there is anyone who wants to talk about there own situation, I would be more than happy to.  Just send me a PM.

I’ll end with a quote from an earlier post…

Ahofle – “These forums are truly amazing sometimes.”

Thanks guys.