Anyone have an autistic child?

[Ninten-doh]

I posted this over at KLOV after first getting the news and the positive posts and PM's really helped my spirits, so I thought I would ask here as well.

My wife and I got the news the Tuesday before Thanksgiving that our 2 1/2 year old son is autistic. I felt like someone punched me in the gut. I was pretty much in denial until Thanksgiving day, when I saw him with his similar aged cousins. What I saw just broke my heart. Anyway, didn't come here to be a downer or seek pity. I was just hoping that any of you who have been in this situation could PM me and let me know how you learned to cope with the news and how you proceeded. Thanks.

[ChadTower]

Do they know yet roughly where on the spectrum he falls?  By now you may have a good idea at least if he's going to be high or low functioning.  I have worked with autistic kids in the past but mostly boys on the high half of the spectrum.  Used to coach them in baseball and have done some work with parents on trying to understand how their child may be seeing the world and how they can adapt to it.

[shardian]

All is not lost. There are now treatment plans for autistic children when it is found this early. Thru lots of hard work, you child could actually pull out of it.

One of my coworker's sons works with an autistic child in one such program. Basically, someone interacts with the child at all times. IIRC, he is paid by a government program and several others also work with the child in shifts. Definitely something you should look into.

So I guess my advice is, keep your head up, stay positive, be proactive in your child's treatment, and don't take any ---steaming pile of meadow muffin--- from your doctor if he/she isn't supportive.

[ChadTower]

The key now is to get him evaluated by good professionals ASAP.  They'll identify where he likely falls on the spectrum right now and they'll set you up with all the referrals you need to start various therapies.  You'll be looking at speech/communications therapy, occupational therapy, more broad physical therapy, and a couple others possibly.  Right now you're going to have to cope on the fly - it's a cold, blindsiding kick in the nuts but you don't have time to be depressed about it.  The quicker you get him into the appropriate therapies the faster and more effective the long term results will be.

One thing to burn into your brain right now:  You are his best and most effective advocate.  School systems are hard to navigate for autistic kids.  It's hard to get them placed, it's hard to get them their appropriate services, and the school will often take months of runarounds and cancelled meetings before you get in where you need to be.  Don't tolerate that.  Be respectful but as aggressive as you need to be to get their attention when you need it and not on their schedule.  They want to help you but they are so overwhelmed and undertrained that if you're not your son's biggest advocate he is not going to get what he needs.

You didn't give much for detail but I'm hoping he is on the high end of the curve in the Asperger's area.  In the past decade or so there have been massive advances in identification and education on Asperger's Syndrome.

EDIT:  added a bit more info, two other posts popped up in the mean time.

[Ninten-doh]

Chad - we don't have an official diagnosis yet of where on the spectrum he is.  We have a meeting on the 12th to discuss his Early Intervention plan.  The people from the town who evaluated him intimated that he's on the mild end of the spectrum.  We have a very well-respected developmental pediatrician evaluating him on the 21st as well, since we want to have both public and private evals done.  While I was thrilled we were able to get an appointment before the end of the year, I know that the evaluation will put a dark cloud over Christmas just like the first evaluation caused a heart breaking Thanksgiving.  That said, I just want what's best for my son as soon as possible, so I'll just have to stop being a selfish ---tallywhacker--- and stop worrying about the holidays.

Shardian - thanks for the positive words.  Believe me, it will be my mission in life to help him be the best person he can be.

[shmokes]

Pick up the book The Curious Incident of the Dog in the Nighttime.  It's a wonderful novel and the main character is a 15-year-old autistic boy.  I have a good friend whose autistic son was 15 when I read the book and she said the book nailed it perfectly.  And the book is hilarious.  It might help put a smile on your face while simultaneously giving you an idea of what you're in for -- it's funny, but not sugarcoated.

Good luck.  I've got a 1.5 year old now and I've worried non-stop since my wife was first pregnant that I would get news like this or worse.  So far so good, but obviously I'm still not out of the woods.  She just got her 15-month imms and a part of me can't help but think, "---Cleveland steamer---, is this increasing her odds of autism?"  The evidence of a causal relationship is scant, and imms are so important that I think it's the right thing to do, but I can't help but worry.


edit: spelling

[ChadTower]

Chad - we don't have an official diagnosis yet of where on the spectrum he is.  We have a meeting on the 12th to discuss his Early Intervention plan.  The people from the town who evaluated him intimated that he's on the mild end of the spectrum. 

How is his language now?  Single words or full sentences?

Find your local autism support groups.  They are out there if you look, your pediatrician may be able to point them out.  They will be invaluable in sharing experiences on what local programs are best, which are overbooked, which are nonresponsive, which are not covered by your insurance but are worth paying (often through the nose) for, which sound nice but aren't worth your time, etc etc.  Also look up some internet communities.  Those people aren't local but they are tightly knit - like this one, and they will be a huge emotional help to you and your wife.

[Ninten-doh]

Chad, his language right now is one or two words.  Simple things like "Want milk", "help please", "juice", "crackers", "come out", etc.  These are things that we taught him.  He does have delayed echolalia, where he sometimes walks around reciting whole childrens books or the ABC song.  That's one of the things I'm so confused about.  Is the echolalia a good or bad thing?  Is it helping him learn language or should I be discouraging it?  I haven't been able to find any info on that.

[ChadTower]

Is the echolalia voluntary or involuntary?  Does he know he's doing it?  What happens when you interrupt him?

Is it communicative?  This would be if you ask him a question, he repeats it, and then answers it.


EDIT:  forgot to ask:  any echopraxia, tics, or sensory sensitivities?

[SNAAKE]

sorry to hear that man..hope things workout for the best.


here is a random idea..get him to play video games..its the ghetto diagnosis and fixes ANY problem

[ChadTower]

here is a random idea..get him to play video games..its the ghetto diagnosis and fixes ANY problem

Pinball!  Pinball seems to speak to autistic kids.  Many will open up in front of a pinball machine in ways they never have before.  The flashing lights, the physics of the ball, the simple interface to the game, it's perfect for them.  I've seen it a few times now. 

[Ninten-doh]

Chad, not sure what voluntary vs involuntary means in this context.  Seems like certain things "trigger" specific echos.  If he sees a block with a letter for example,. that might make him do the ABC song.  If we talk about the Christmas tree, he might start reciting a children's book about Christmas.  It's pretty hard to interrupt him, as he seems to just want to complete whatever it is he's scripting, but honestly, we haven't tried too hard to stop him because we're not sure if it's a bad thing to force him out of it.  He doesn't do the "ask him a question, he repeats it, and then answers it" thing.  Most times he comes up to us and we know he wants something, so we ask "What do you want?", and he'll respond "Want juice", or "Want crackers", etc. 

Haven't noticed any echopraxia or tics (unless jumping up and down with excitement when we turn on his fake fish bowl is considered a tic).  The OT that came to evaluate him said he was a "sensory seeker".

[ChadTower]

Chad, not sure what voluntary vs involuntary means in this context. 

It would be whether or not he has control of what he is doing.  It may be too early for an untrained eye to determine.

It's pretty hard to interrupt him, as he seems to just want to complete whatever it is he's scripting, but honestly, we haven't tried too hard to stop him because we're not sure if it's a bad thing to force him out of it.

For some kids, interrupting them isn't a problem.  With others it can cause a meltdown.  This sort of thing is why autism is so hard on the others around the kid - every kid's capabilities are different, every kid is an individual with a unique personality underneath, and they are constantly changing as they grow up.  The problem is that as the parent you can't see it in order to adjust smoothly.  Where a typical kid is basically a transparent window - you can see what is going on in there if you know them - the autistic child has to be seen through a fog of unknown depth and thickness.  He's in there but you don't know exactly where or how to get in and find him.

He doesn't do the "ask him a question, he repeats it, and then answers it" thing.  Most times he comes up to us and we know he wants something, so we ask "What do you want?", and he'll respond "Want juice", or "Want crackers", etc. 

Do you read to him?  Read him stories - a lot.  Engage him fully and directly at his level.  Read a page, ask him questions about the illustrations, see what he retains and what his recognitions are.  Have him point to the red pig - when he does, you know he can recognize the pig, the color, and that he understood the words pig, red, and what the request was asking of him.  Don't dumb down your language for him.  Speak in a regular manner - the more 1-1 direct verbal communication you can have with him the better.  Strengthen his verbal abilities now.

Haven't noticed any echopraxia or tics (unless jumping up and down with excitement when we turn on his fake fish bowl is considered a tic).

Doesn't sound like a tic.  A tic is more like rocking back and forth or a repetitive hand movement.  Jumping up and down is good - full large motor skill.  He is probably going to have to do a good amount of fine motor therapy.  A good occupational therapist will do wonders with that.

The OT that came to evaluate him said he was a "sensory seeker".

Is it limited to certain senses?  Does he display sensitivity or discomfort in the face of sensory input you would consider reasonable?  Sounds, lights, touch?  Something to consider - some autistic kids can hear things you probably can't.  Sometimes those things are painful.  Things like fluorescent lights and television scan chatter.

[Ninten-doh]

Chad, we do read to him a lot.  We're worried that it's too much.  We're fearful that it was all that reading that has now caused the echolalia where he repeats them.  And we have a variety of books, so it's not like we just read one over and over and he has it memorized. 

He's very good at labeling.  He knows his colors, shapes, alphabet, and numbers up to 20. 

Things we are working on while we wait for the meeting next week are his fine motor skills and his play.  For fine motor, my wife fills a bowl with rice and hides little toys in it for him to find.  He loves it, and it works on his fine motor and his sense of touch.  He's not a big fan of getting his hands dirty, but has really started to enjoy this and playing with Play Doh.

For his play, we're working on doing things that require taking turns and sharing.  We have also tried to spur some imaginary play by getting him to treat his Elmo like we treat our 6 month old daughter ("give Elmo some milk". etc.) 

So far, he doesn't really have tantrums or meltdowns.  He'll cry when he's not happy ("okay, time to put the train tracks away"), but the crying is short-lived.

In terms of senses, he doesn't appear (to my untrained eye) to be sensitive to lights or sounds and such.  He walks up to the Christmas tree and likes looking at the lights and ornaments.  We're just bummed that he doesn't show more emotion like a normal 2 1/2 year old.  We took him outside for the first snow of the year over the weekend, and he didn't crack a smile.  I know there was a lot for him to digest (what is all this white stuff?  Why am I stuffed into a snowsuit like some kind of sausage?  Why is it so friggin cold?), so maybe I was expecting too much.

[saint]

One thing to burn into your brain right now:  You are his best and most effective advocate.  School systems are hard to navigate for autistic kids.  It's hard to get them placed, it's hard to get them their appropriate services, and the school will often take months of runarounds and cancelled meetings before you get in where you need to be.  Don't tolerate that.  Be respectful but as aggressive as you need to be to get their attention when you need it and not on their schedule.  They want to help you but they are so overwhelmed and undertrained that if you're not your son's biggest advocate he is not going to get what he needs.

This is the best advice you could possibly listen to. There are no systems that are on your side. There are many wonderful people in any particular system, but any particular system (schools, therapists, hospitals) has many many clients and you are just one of them. You'll probably get their best effort when they're focused on you, but when you're not directly on their radar they're working on someone else. It's just human nature coupled with bureaucracy inefficiencies. Being your child's advocate is one of the most important things you'll ever do.

editI don't mean this to sound depressing and that there's no one out there to help you -- on the contrary a good hospital/doctor/therapist/school will be a good partner for you with your child. You just need to be extremely proactive.

--- saint

[ChadTower]

Chad, we do read to him a lot.  We're worried that it's too much.  We're fearful that it was all that reading that has now caused the echolalia where he repeats them. 

Nah.  I don't think there is a "too much" here.  1-1 time and communication is always positive.  Just make sure you're not the only one communicating.  Getting info back from him is very important here.  Keep him exercising that skill as much as you can, even if you have to stop every page to pull feedback from him.  Can't stress enough how much better it is to keep it two way communication rather than daddy reading and kid listening.

Sounds like you're on the right track.  It's also good that you have another kid as social skills and peer interaction are going to be a challenge for him.  That is one of the ironies of the autistic child - they really need a sibling to practice their social skills but many parents are so afraid of a second autistic child that they never have any more kids.

He's not a big fan of getting his hands dirty, but has really started to enjoy this and playing with Play Doh.

That's common.  He doesn't like the sensory input he can't remove.

For his play, we're working on doing things that require taking turns and sharing.  We have also tried to spur some imaginary play by getting him to treat his Elmo like we treat our 6 month old daughter ("give Elmo some milk". etc.) 

Role playing is good.  Some kids respond well to rote repetition of social situations.  You may end up having to do it again with the baby as he may not transfer that knowledge from Elmo to the baby.  It will help him learn how to interact with the baby faster since it is not new material, though.

So far, he doesn't really have tantrums or meltdowns.  He'll cry when he's not happy ("okay, time to put the train tracks away"), but the crying is short-lived.

Reasonable at that age for any kid.  One thing I've noticed in dealing with many parents of autistic kids is that if anything happens they immediately assume it is the autism and don't understand it.  They miss the forest for the trees - don't miss the age appropriate actions for what they are - age appropriate.  It's not easy to draw that line, and sometimes you'll be wrong, but when a 5 year old kid runs and falls down it's NOT always a motor skills problem.  Sometimes he's just a 5 year old that tripped.

In terms of senses, he doesn't appear (to my untrained eye) to be sensitive to lights or sounds and such.  He walks up to the Christmas tree and likes looking at the lights and ornaments. 

A consistent fascination with lights could be a light sensitivity.  It doesn't appear to be causing discomfort, which is the real issue, so that's good.  Some autistic kids will seek out and be drawn to light sources, especially colored flashing ones (pinball).  Of course, the tree is pretty and big and right in his face, too, so he could just think it's pretty and cool (which it is).

We're just bummed that he doesn't show more emotion like a normal 2 1/2 year old.  We took him outside for the first snow of the year over the weekend, and he didn't crack a smile.  I know there was a lot for him to digest (what is all this white stuff?  Why am I stuffed into a snowsuit like some kind of sausage?  Why is it so friggin cold?), so maybe I was expecting too much.

That's a difficult thing.  I truly believe that they feel the emotion.  I just think they don't feel exactly what you would expect because they view the world differently.  They also don't express it.  Don't ever stop going to the effort to expose him to positive things like that - you may not get the feedback you are looking for but he is getting the benefit you wanted him to have.  Consider this - for the dozens of times that will happen, it will all be worth it the day you hit the right stimuli at the right moment and he opens up and lets you see.  I've seen large men break down and cry at that moment.  I've done it myself a couple of times when weeks of frustrating skills work leads to a sudden ability to consistently hit a baseball and the kid smiles and won't put the bat down.


EDIT:  BTW, sorry for the especially long wordy posts (even for me)... if it's too much, email me and we can talk there. 

[Ninten-doh]

This is the best advice you could possibly listen to.

Agreed.  And we are fortunate to have my boss' wife as our advocate as well.  She is an administrator for a special needs program in NY (I'm in NJ) and she is helping us to, as she puts it, "cut through any BS they tell you."

[Ninten-doh]

EDIT:  BTW, sorry for the especially long wordy posts (even for me)... if it's too much, email me and we can talk there. 

This has been terrific for me, so no worries on the wordy posts.  Like you mentioned, I'm in an "analyze every movement" mode right now.  My wife has to stop me at times and say "He's not doing XYZ because he's autistic, he's doing it because he's a 2 1/2 year old boy."

[XyloSesame]

My wife and I know two autistic boys; one severe and advanced, the other mild, yet advanced. One of the kids has a single dad as a parent; he is dedicated to massage therapy/touch therapy as a means to mitigate his son's autism and has gone into the field of professional massage therapy for this reason. He swears by it, but YMMV.

I agree with Chad and Saint; the best thing you can do is be an advocate and ask questions of every source you encounter, be it online, from a therapist or doctor, or from friends and family. Our single dad friend has been the best father and offspring-advocate I've ever met, is 100% committed to his son, and is always (at least outwardly) positive, even during the hard times. Don't let any of this get you down, particularly this early on...

[CheffoJeffo]

I have two children with autism. I also also work (well, not really work, but I volunteer as a scout leader so that kids with autism could attend) with a half dozen kids with autism.

First -- take any advice you get with a grain of salt. 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.

EDIT2: I should say that, in addition to the mis/incomplete information out there, there are lots of 'solutions' that work for some kids and don't work for others. You need to keep an open mind but maintain perspective.

The only singularly true advice has been given by saint/chad (why did I want to type that combination as 'sad' ?) -- you are your child's best advocate (actually, Mom is a better advocate than Dad, but ...).

The problem with the 'best advocate' advice is that you're probably still in shock and have no idea what to advocate for (I've been doing this for nearly 5 years and I still don't know).

This is one of those health-related situations where you can feel good about living in the USA -- the ADA is a powerful piece of legislation and you have more opportunities than folks in other countries to get things done early (which is exceedingly helpful in dealing with autism). Also, cluing at 2 1/2 is valuable and highly actionable.

I have PMd you with my email addy and phone number so that we can talk some more about the issues and options -- it isn't a matter conducive to group discussion.

Hang in there ... there is lots that you can do at that age with dramatic effect ... I know people whose children were identified much later than your son and who, within a few years, would not receive a diagnosis.

Give me a call.

EDIT: for spelling

[ahofle]

These forums are truly amazing sometimes. 

[shardian]

These forums are truly amazing sometimes. 

Don' tell McCoy that. This isn't arcade related you know.

[CheffoJeffo]

These forums are truly amazing sometimes. 

Don' tell McCoy that. This isn't arcade related you know.

You owe me a new monitor!

 

[CheffoJeffo]

I was going to tell you this by email, but in case it helps someone else or shows up in a search, there are a couple of MUST (and I do mean MUST ... I have a much longer list of SHOULD) read books (links are to the first hits I got when searching):

Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery

The Autism Sourcebook: Everything You Need to Know about Diagnosis, Treatment, Coping, and Healing

There are tons of other resources and lots that has been discovered since these were written, but I think that every parent receiving an identification or diagnosis should read both of these books immediately.

I don't agree 100% with everything in these books, but they provide some potential avenues that should be explored as early as possible.

[ChadTower]

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.

[shardian]

At risk of taking this off-topic...

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

As politely as I can put this, I'm seldom surprised when someone tells me they have an autistic child I haven't met yet.  It leads me to wonder whether this is something that is passed on, or if the parents are going through such a series of battles that they put up this odd defensive-mode 24/7?

There is no concrete study on a hereditary cause of autism. Of course, there isn't a concrete study on anything being a cause of autism. I also doubt there will ever be a sure cause of autism diagnosed. It's more like a "perfect storm" condition. There are genetic, development, stimulatory, environmental, and chemical factors that can possibly have a role in causing autism. This also explains why the severity and "symptoms" of autism vary so greatly.

Having said that, looking at a person, judging them, and saying because they are stupid their kid has autism is pretty crappy.

Autism is not a "stupid person/imbred person having babies" condition. You can toss that theory right out the window.

[ChadTower]

Autism is not a "stupid person/imbred person having babies" condition. You can toss that theory right out the window.

There are quite a few top experts at the moment talking about selective breeding being a leading cause of the "sudden surge" of autism in certain areas of the US.  Others are saying there is less of a surge as much as there is an increase in recognition and diagnosis while still acknowledging that there has been a noticeable increase in certain locations... locations which all happen to be technology hotbeds like San Diego, Massachusetts, and Dallas.  "Engineering types" with either latent genes or perhaps light autistic tendencies matching up with each other and the child inheriting either a matching set of autism genes or perhaps simply an evolution style "more" of the trait.

[ChadTower]

I'm not sure where sharidan is coming from on that, really.  Every autism professional I've dealt with says all leading theories call it inherited.  Every book I've read says the same thing.  Every family I've worked with demonstrates it to one degree or another.  There are some background conjectures about things like exposure to lead/mercury from vaccines, paint, public water sources, etc but they are all seen as possible contributory factors at best in terms of autism itself from everything I've ever seen.

[CheffoJeffo]

There is almost definitely a genetic component (or two or three), but it is certainly not entirely hereditary. At most, there is a genetic trigger set off by environemental issues.

We've been part of an ongoing genetic study on autism (we're an excellent family to study -- we have girl/boy twins ... the girl has autism, the boy doesn't ... and a younger son with autism who presents VERY differently than our daughter ... has been a very valuable process and provided us with access to professionals that we wouldn't otherwise get to see). and there have been some interesting correlations uncovered (so much so that the extended families have all submitted DNA samples to the study).

But the truth is that nobody really knows yet.

My personal belief is that there is a genetic component that is "unleashed" due to environmental issues. We do know  how to treat many of the environmental issues (although we don't really know 'why' and the studies so far are not anywhere near as rigourous as we need them to be).

There was a study in the UK a few years back that showed a strong correlation between the occurence of autism within a family and technically-minded professions (which accurately describes my half of our family tree ... we're all scientists, mathematicians or technical folks). IIRC, the study showed that families with folks with technically-minded jobs (accountant, physicist, statistician, mathematician) experienced 4x the occurences of autism that typical families did.

As far as "seldom surprised" ... I dunno ... I see shades of the spectrum in everybody ... I definitely see it in some posters here.

It is very important to understand that what most people think of as autism is almost certainly not an accurate or inclusive representation of autism (we've all seen Rainman and that ain't it), so drawing any conclusions is problematic at best.

Autism can, and does, present VERY differently in different children (my youngest is completely social and the exact opposite of Rainman).

[ChadTower]

I'm right there with you on people just not "getting" autism.  It is a heavy, heavy word that makes people think the kid should be sitting in a corner rocking back and forth wearing a helmet and yelling random sounds at the wall.  Even with very high functioning Asperger's kids I have worked with, the second someone hears that they are "autistic", the adult's perception of that child is forever altered and suddenly that "slightly different but good and normal" kid is "handicapped".

I think there are a lot of families out there hiding the fact that they have high functioning Apserger's (and similar) kids because of the monster stigma attached to the word autistic and the lack of knowledge of the general population.  That revelation is just too heavy on the kid and you can't put that back in the jar.

Cheffo, BTW, you're right - your family layout is like a geneticist's perfect case study.

[shardian]

My personal belief is that there is a genetic component that is "unleashed" due to environmental issues. We do know  how to treat many of the environmental issues (although we don't really know 'why' and the studies so far are not anywhere near as rigourous as we need them to be).

That is what I believe too - for a type of autism. I think that the current surge in autism is related to more developmental aspects than genetic though. There are a ridiculous amount of environmental and chemical stimuli that influence children in the current world. I guess you could say that there are not just different levels of autism, but more like completely different forms of autism.

And about my comment to jim: I guess I was thinking of "old Jim" and jumped to where you were going with that. You might as well have went ahead and explained yourself. Sorry.

[ChadTower]

I guess you could say that there are not just different levels of autism, but more like completely different forms of autism.

You don't have to guess... that's called the Autism Spectrum.  It's already out there.  Autism is a broad term for many traits, conditions, attributes, etc that manifest themselves under a spectrum of abilities and behaviours.  They also have different causes (though most of them are unknown or unproven).

It's the near complete ignorange of the Autism Spectrum that makes it so difficult for families with an autistic child to navigate society.  The kids don't look different.  From the high functioning kid that is disrupting a little league game to a lower functioning kid smashing spaghetti sauce jars in a grocery store - people don't see the cause and just assume that the kid is a bad kid because the parents are bad parents.  Dealing with that day in and day out is exhausting on top of all of the needs of the kid.  That's where the defensiveness comes in that Jim mentioned.  There is only so much energy in a day for these parents and they can't afford to spend much of it constantly explaining and defending themselves and their child.

[CheffoJeffo]

Dealing with that day in and day out is exhausting on top of all of the needs of the kid.  That's where the defensiveness comes in that Jim mentioned.  There is only so much energy in a day for these parents and they can't afford to spend much of it constantly explaining and defending themselves and their child.

The good news is that there are therapies to help manage the stress ... I, for one, like posting in response to tommy when I have had a particularly long or frustrating day.

Works like a charm and every so often I get a new custom title!

[CheffoJeffo]

Since we're on the "what does autism look like" train ... I would say that, based on my experience, at least two high-post members here fall on the autism spectrum.

Nope, I'm not going to say who.

The point is that autism looks very different from person to person -- there may be a 'look' that someone would associate with autism (the blank stare is the classic), but I guarantee that at least one (and probably both) of my 'autistic' children wouldn't meet those criteria. Same situation with the majority of autism-afflicted children that I deal with (OTOH, I see a bunch of kids regularly who could be identified by the blank stare).

PBJ -- I'm not taking your comments as insensitive. In fact, your beliefs appear to be typical. That is the reason, however, that my first piece of advice to Ninten-doh was to take everything he hears with a grain of salt --most people have some beliefs/conceptions about autism.

Almost all of them are either incomplete or wrong.

To be clear, I don't blame people for what I perceive as incomplete/incorrect information -- it sure as heck ain't your duty to know everything about autism and I find some solace in the fact that 'normal' people actually spend time thinking about it.

EDIT: for grammar (or lack thereof)

[ChadTower]

Just in my experience, it's usually a lack of an 'inside voice', laughing inappropriately and demonstrated 'single mindedness' at some tasks.  I'm sure there's others but that's what a person without an autistic person in the family has seen.

These can be from a high functioning autism but are by no means limited to them.  People who are completely typical can have poor social skills too.

I wouldn't say that.  We're used to a wide variety of appearances but something that's 'abnormal' sticks out quickly.  I think there's an overall 'autistic-look'.  It may be the lack of facial expressions and unfocused stares.

I know kids who are autistic that people walk up and complement the parents on "such a good looking child".  There isn't an "autistic look" in most of these kids.  It may be somewhat obvious on a heavily autistic kids but that's a behaviour, not a physical appearance.  If you saw a retarded child doing something seriously inappropriate you would immediately know why... not so with an autistic kid.  I've seen people walk right up to parents of autistic kids and tell them off for having such "ill behaved children".

Again, I apologize if any of this is coming off as insensitive.  Not my intention.  It's a bewildering condition.

It's coming off as if you don't have any experience with autistic kids.  I'm not seeing disrespect so far.

[CheffoJeffo]

I know kids who are autistic that people walk up and complement the parents on "such a good looking child".

Interesting ... there have been studies (and I do not have citations handy, so you'll have to take my word for it) that have reported that, on the whole, children with autism are more physically attractive than typical children.

Just another autism study with anecdotal evidence that frustrates the bejeebers out of me for the lack of useful or actionable conclusions.

The sad thing is that somebody paid for those studies ...

[ChadTower]

Interesting ... there have been studies (and I do not have citations handy, so you'll have to take my word for it) that have reported that, on the whole, children with autism are more physically attractive than typical children.

I have no idea how they'd even do that, considering that attraction is so abstract and variable a thing.  What is attractive to one person is uninteresting to another.

Just another autism study with anecdotal evidence that frustrates the bejeebers out of me for the lack of useful or actionable conclusions.

And one that really doesn't quantify anything, sounds like.  Not the best use of research funds.

[shardian]

I would venture to guess that if an autistic person "looked funny" then odds are they have another condition too. Alot of uneducated (on the subject) people probably associate down syndrome kids as being autistic.

There was a severe autistic boy at my High School. He always had to have a large Wendy's cup to sip from in his right hand, and he would whistle then snap his right fingers two times. In that case, he "looked" autistic, but he didn't have any actual physically distinguishing traits.

[Dartful Dodger]

My mom's cousin has an autistic child.  She's my mom's cousin but her and my mom are so close that I call her aunt.  He turned 30 a couple of months ago and they had a big party for him.  I've never seen my aunt or her husband anything but happy and full of life, but my mom and dad have told me stories about how they were alcoholics when they were younger.  The husband was a horrible man always getting into fights all the time and always in trouble with the law.   When the family found out about the youngest having autism everyone figured my uncle would leave her, instead the two of them changed almost overnight.  Even now I can’t imagine them being anything but kind and caring.

I can’t pretend to know what you’re going through or how you’re feeling right now, but you’re starting out with your heart in the right place.

[CheffoJeffo]

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%.

In my own experience, however, almost every autism-affected couple I know (about 30 couples) are 100% committed to their marriages and family ... sometimes it's too bad 'coz some of those momz is teh hot!

[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.

[ChadTower]

It sucks that you had to take them to court but major kudos for doing what you had to do.  Autism programs in public schools are still a long way from being great but they're also way better than they were even 5 years ago.

[Ninten-doh]

Autism programs in public schools are still a long way from being great but they're also way better than they were even 5 years ago.

Agreed.  And for some kids on the spectrum, the program our school disctrict has will be great for them.  Just wasn't right for our son.

[ChadTower]

I think a lot of the milder keeps really need to spend the majority of their time in the typical classrooms anyway.  They need the social development.  It may not go as smoothly as we'd like but the trend I keep seeing now is people taking mildly affected kids and trying to get them placed into the special classes without consideration that being placed with more severely affected kids is actually going to hinder their development more than it helps.  Maybe that's just a function of a lot of parents being lazy and expecting the schools to take care of everything for them, I'm not sure yet.

[CheffoJeffo]

I've rewritten this post a half dozen times, but what I really want to say is "Well Done" -- it's a highly stressful situation that too often is accompanied by a lack of suitable support (as you say, nobody has the definitive answers that we all crave), but every victory builds on the last and changes the course of their lives.

 

[CheffoJeffo]

I think a lot of the milder keeps really need to spend the majority of their time in the typical classrooms anyway.  They need the social development.  It may not go as smoothly as we'd like but the trend I keep seeing now is people taking mildly affected kids and trying to get them placed into the special classes without consideration that being placed with more severely affected kids is actually going to hinder their development more than it helps.

A good point and a tough call -- we've been struggling with this for a while. Initially we fought tooth and nail for inclusion in a normal classroom, because we wanted our daughter to have normal peers to model from. At the same time, however, without significant classroom support (which is unavailable due to a perverse combination of political, funding, legal and even union issues) her academic development wasn't adequate. Now she is in a special ed class and doing better academically. But, she is lacking the in socialization with normal peers.

My son is in a normal class with no academic support and I fear for his academic development (although we are targetting this with intensive ABA for half of each day). His social skills are better than his sister's, so I am less worried there.

But, all in all, it's still making your best guess and taking a chance.

[CheffoJeffo]

Not meaning to reopen the discussion, but I was at a conference on Autism yesterday (there are lots of those) and there were some of the best presentations that I have seen in a while. Some of the findings are preliminary and won't be published for another year or more, but they are interesting.

But, to open, I've reread the thread and found that I was unnecessarily harsh with PBJ through the course of the thread and am sorry for that -- it didn't help things.

Sorry PBJ.

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

This particular conference was sponsored by the folks running the genetic study that we are involved in (and we are now involved with two more studies as a result). They have identified a number of interesting genetic anomolies that they will be pursuing. One of the interesting findings was their estimate of Etiologic risk factors and the proportion of cases where they find "Autism in other genetic disorders" (of interest to me, because Mrs. Cheffo is a carrier of FragileX and FragileX is one of those genetic disorders).

Long story short, they are seeing data that suggest known, identifiable (but not specific) genetic causes (6 different ones) in 18% of Autism Spectrum Disorders. I think that is the first time that anybody has actually quantified the belief that Autism Spectrum Disorders are inherited. There isn't anything actionable in this, but it is good to see some data supporting conclusions.

I know kids who are autistic that people walk up and complement the parents on "such a good looking child".

Interesting ... there have been studies (and I do not have citations handy, so you'll have to take my word for it) that have reported that, on the whole, children with autism are more physically attractive than typical children.

Just another autism study with anecdotal evidence that frustrates the bejeebers out of me for the lack of useful or actionable conclusions.

The sad thing is that somebody paid for those studies ...

I now understand why they do this, although it's application to Autism Spectrum Disorders is still questionable in my book.

The idea is to create easily-administered and quantifiable screening for known genetic disorders -- so that a pediatrician can take some simple measurements and determine if a child (who may be too young to exhibit symptoms) should undergo genetic testing. There was a good presentation on this, although I didn't see a universal application to Autism right now, if we can link quantifiable physical traits to underlying genetic issues related to Autism, then we can identify kids much earlier. I'm not convinced, but know I understand why the studies were done.

We also heard what is, by far, the best presentation on Vaccines and Autism that I have ever seen. It refuted the specific evidence of linkage that I discussed with the biochemist at yet another conference (and talked about earlier in this thread). It was interesting that a gentleman stood up and questioned the mathematical methods and evidence and was openly hostile to the presenter -- I am all for questioning, but the gentleman in question was out of his depth (my training is in statistics and actuarial science, so I knows me my stats and, while this guy was making a reasonable point, he failed to understand that the point he was making had nothing to do with the testing done, the metholology used or the conclusions reached) and plain wrong.

The hostility (an example of which I displayed earlier in the thread for PBJ) seems to be a trait associated with being a parent of a kid with Autism. Another lesson learned.

And there was the usual application of politically correct terminology -- "neurotypical" and "neurodiverse" were the buzzwords for the day and there were t-shirts to that effect  -- bewildering science and reckless emotion (at some point in the day, nearly *everybody*, researchers included, breaks into tears at these things).

I came out of the day with a new book to read (I haven't read it, so this isn't a plug):

http://www.amazon.com/Autisms-False-Prophets-Science-Medicine/dp/0231146361

And that's what I did on my mid-autumn vacation!

Where's that damned :tommy icon ?

[ChadTower]

Just curious... do these studies have a tendency to show separation between high and low functioning or are the usually spread across the whole spectrum?  My experiences are almost all with kids that are on the higher end - the type that could easily be mistaken for an unmanageable pain in the ass rather than a kid with a diagnosed condition.  Physically functional enough to play good 7 year old baseball with enough extra remedial work and some socially functional enough to be in regular school classes while others are in special ed of one type or another.

[CheffoJeffo]

Great question -- and one of the biggest problems that parents and researchers face.

The question of diagnosis -- what is Autism or what is an Autism Spectrum Disorder ? To what degree ? What is an appropriate intervention ? How much funding ?

There are a number of criteria that have been used to diagnose Autism over the years, the most common of which I believe is still the DSM-IV definition (under which my youngest wouldn't be diagnosed as having Autism). Without doubt, the change of criteria over the past several decades has contributed to what has been labelled as an "epidemic" (along with general awareness of Autism). Is that the only reason ? I don't know -- both DSM-IV and IDEA (US legislation for education for kids with disabilities) are cited as reasons for the increase in reported cases, but both happened a decade and a half ago and IDEA applies only in the US.

One problem that I have faced is receiving reports from leading professionals who say that my child has an Autism Spectrum Disorder, then being rejected from receiving funding because my child doesn't meet the DSM-IV criteria for Autism, only for Pervasive Development Disorder - No Obvious Cause.

So, to answer your question, nope

We can't even find common ground as to the definition of what constitutes Autism or an Autism Spectrum Disorder or NeuroDiversity (tm?) or whatever, let alone classify how the affected children fall along that spectrum. That will continue to be the biggest hurdle in terms of getting an accurate portrayal of Autism in the media and the reason why that majority of folks like me think that people like Jenny McCarthy are half-informed, very fortunate half-wits who are not helping the majority of kids with Autism.

I definitely don't begrudge her the success that she has enjoyed wrt her son, but her blind arrogance and willingness to shoot her mouth off is harmful. My son saw benefit from the removal of casein from his diet (while my daughter didn't), but he certainly isn't "cured". I personally know families (we attended the conference with two of them) who have done everything that Jenny has done, and FAR more, and their kids haven't improved.  If we still can't define the condition, there is no possible way that anybody can claim that it can be cured and anybody who does, should be regarded with skepticism ... but also with hope, because sometimes things DO work for your kid, even if they don't work for everybody.

In terms of specifics, the still-pending DSM-V is looking to redefine the classification and diagnoses, although the direction that they will take is still not known (to me anyway). As an example, Rett's Syndrome, which has previously been classified as a form of Autism (or, more properly, a Pervasive Developmental Disorder) affecting girls, has now been identified as a specific genetic disorder and may be removed from the Autism/PDD classification, although similar things may be said about FragileX (my daughter is neither Rett's nor FragileX, although my wife is a FragileX carrier). It will be interesting to see what happens to eligibility of kids for programs/interventions based on those changes.

All told, this quagmire is a key reason why parents are the best advocates -- they know their children best and, while overwhelmed, emotional and not fully understanding what the hell is going on, are the best positioned to determine the appropriateness of various programs and interventions.

The story of Lil' Nintendoh, and his parents' awareness as to what his needs are, is a good illustration of this.

[Ninten-doh]

Jeffo,
Thanks for sharing what you heard at the conference.  I really want to go to one (or two or three) of these, but I just don't have the time.  I think the thing I'm most curious about is whether this is truly an epidemic or the results of shifting diagnostic guidelines.  I have nothing to back this up -- it's just my opinion -- but I think that genetics play a part, and we're seeing this dramatic increase because something environmental is "triggering" it more and more. 

Let me know what you think of the Offit book.  I'll reserve judgement until I read the book, but I can't help but be wary of a guy who made millons from developing a vaccine telling me that the vaccine-autism link is a crock.  Not saying he's wrong, but he's not exactly an unbiased expert either.

Thanks again for sharing!   

[CheffoJeffo]

De Nada -- if my attendance at these things can spare just one other parent having to attend to hear the same stuff, then it is worth it. Realistically, there are probably 12-20 of these these that we *could* attend in a year relatively local. They are all pretty boring and often depressing and, if your kids are doing better than most, you ended up feeling guilty. They suck. We have been picking ones that are convenient or have people that we want to see. Most of the ones I have been to aren't worth going to on an annual basis.

This was my first time at this particular conference and I will definitely go back every year that they let me (the fact that it was free for families who participated in the study was nice, but it is also the "sharp point of the spear" in terms of genetic and epigenetic research into Autism).

One thing that might not have been clear is that Dr. Offit was not at this conference and that the vaccines presentation was made by a French Dr. who also worked in England and now works in Montreal at McGill. It really did break down the arguments and addressed every issue that I have ever seen on the topic, including the mostly overlooked fact that there are actually multiple theories -- Thimerisol is only one of the suspects. He also addressed the findings about Autistic kids not excreting mercury, which really annoyed me because the answer was so simple. And he pointed out that the phenomenon of first noticing signs of Autism at 18 mos (when the MMR booster is given in North America) is also experienced elsewhere in the world ... in places where the MMR booster is given months earlier or not at all.

But, as I say ... some of these things that aren't scientifically valid, do work for some kids. My kids (neurotypical included) are off today for a week of "listening therapy" (aka Tomatis therapy). Scientifically, there is no evidence to support it and it surely isn't a cure, but my kids do better because of it. It lowers their stress levels, improves their focus and behaviour and, as a result, lowers my stress levels and those of Mrs. Cheffo. I tried to listen to the sounds once and it drove me over the edge, but it works wonders on them.

 

EDIT: For typo ...

[ChadTower]

Those "non scientifically valid" things could easily be solving a different problem and the people just don't know what.  When you have someone up in a news conference saying "I took X out of my kid's diet and now he's fine" no one ever asks them "so what is the science behind that result".  They just know they did something and now their kid has improved.  They rarely have any idea why.

[CheffoJeffo]

In an interesting twist of timing and small worldisms ... I just received an email from one of Mrs. Cheffo's sisters and it turns out that the economist who has most recently proposed that precipitation is linked to Autism (I had previously jokingly dubbed him 'RainMan') is one of her professors (she's doing her Executive MBA at Cornell).

http://www.johnson.cornell.edu/news/WaldmanAutism.html

He has also previously tested occurences of Autism against cable TV subscription rates and reported that it was a causative factor in 18% of cases, so I am a little suspect of his methods and conclusions.

As others pointed out back in 2006, "He's found it -- umbrellas cause Autism!".

Having said all of that, I would be interested to see the underlying data and methodology because, to my mind, there are several issues that would need to be accounted for and none of the press coverage, either now or in 2006, seems to talk about it.

 

[Ummon]

I've recently encountered someone who has an autistic son. As an infant, and on the doctor's insistence, he was subjected to an 'accelerated immunization schedule'. Apparently he didn't have any serious reactions, though she thinks the incident is what caused his autism. She skipped it on her daughter, who is normal.

On the diet thing, she's noticed that a gluten-free diet has helped in his overall development. Beyond that, though, she doesn't know much about diet and food quality in general, so I'm helping her with that, and I bet it will do even more for him.

On the 'questions' thing, I'd just tell 'em straight up. They may not understand all the words and meanings of things, but kids in general are receptive to intelligent answers.

[CheffoJeffo]

This morning I received a PM from a kindly BYOACer (Thanks again -- and I agree that Kaylee rocks!) pointing me to an article entitled New Theory Of Autism Suggests Symptoms Or Disorder May Be Reversible.

It is interesting that just this week Mrs. Cheffo and I were discussing the anecdotal observations behind the core premise of the study -- that our Autistic kids appear normal when they are feverish. We first noticed this a year ago when my youngest was running a fever of 105 -- he was almost completely "typical" in his behaviour. This past week has seen the stomach flu tear through Casa Cheffo and we noticed the same thing with both Autistic kids when they were running fevers.

And now this paper has been released. There may be something to it.

I had intended to refrain from posting until I had reviewed the paper behind the article, but I am finding myself out of my depth and it will take me some time to bring myself up to speed. Some of the potential therapies suggested are things that were discussed at that last big conference that I went to.

[shmokes]

I didn't reread this whole thread, so I might already have mentioned this, but has anyone here read The Curious Incident of the Dog in the Nighttime?  It is a lovely book, and the protagonist is an autistic 15-year-old boy.  I have a very good friend who coincidentally had an autistic 14-year-old boy when I read the book.  I had her read it and she was floored at how well the author nailed it.  Obviously there is a wide range of symptoms based on the severity of any given case, but apparently the kid in the book was a virtual mirror-image of her son.  At any rate it's a wonderful book which I suggest to anybody, but especially to parents of an autistic child because I think it would make them smile about things that usually don't.