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Author Topic: Anyone have an autistic child?  (Read 8315 times)

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Ninten-doh

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Anyone have an autistic child?
« on: December 04, 2007, 08:55:13 am »
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.

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Re: Anyone have an autistic child?
« Reply #1 on: December 04, 2007, 09:00:27 am »
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.
« Last Edit: December 04, 2007, 09:02:08 am by ChadTower »

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Re: Anyone have an autistic child?
« Reply #2 on: December 04, 2007, 09:06:02 am »
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.

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Re: Anyone have an autistic child?
« Reply #3 on: December 04, 2007, 09:14:07 am »
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.
« Last Edit: December 04, 2007, 09:17:34 am by ChadTower »

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Re: Anyone have an autistic child?
« Reply #4 on: December 04, 2007, 09:15:51 am »
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.

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Re: Anyone have an autistic child?
« Reply #5 on: December 04, 2007, 09:16:01 am »
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
« Last Edit: December 04, 2007, 09:18:06 am by shmokes »
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Re: Anyone have an autistic child?
« Reply #6 on: December 04, 2007, 09:20:26 am »
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.

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Re: Anyone have an autistic child?
« Reply #7 on: December 04, 2007, 09:26:31 am »
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.

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Re: Anyone have an autistic child?
« Reply #8 on: December 04, 2007, 09:31:17 am »
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?
« Last Edit: December 04, 2007, 09:37:52 am by ChadTower »

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Re: Anyone have an autistic child?
« Reply #9 on: December 04, 2007, 10:06:21 am »
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
« Last Edit: December 04, 2007, 10:09:06 am by SNAAKE »

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Re: Anyone have an autistic child?
« Reply #10 on: December 04, 2007, 10:11:01 am »
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. 

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Re: Anyone have an autistic child?
« Reply #11 on: December 04, 2007, 10:14:58 am »
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".

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Re: Anyone have an autistic child?
« Reply #12 on: December 04, 2007, 10:29:02 am »
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.


Quote
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.


Quote
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.


Quote
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.


Quote
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.

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Re: Anyone have an autistic child?
« Reply #13 on: December 04, 2007, 11:00:08 am »
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.

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Re: Anyone have an autistic child?
« Reply #14 on: December 04, 2007, 11:12:52 am »
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.

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« Last Edit: December 04, 2007, 11:18:39 am by saint »
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Re: Anyone have an autistic child?
« Reply #15 on: December 04, 2007, 11:17:54 am »
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.


Quote
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.


Quote
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.


Quote
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.


Quote
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).


Quote
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. 
« Last Edit: December 04, 2007, 11:21:03 am by ChadTower »

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Re: Anyone have an autistic child?
« Reply #16 on: December 04, 2007, 11:18:44 am »
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."

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Re: Anyone have an autistic child?
« Reply #17 on: December 04, 2007, 11:27:29 am »
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."

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Re: Anyone have an autistic child?
« Reply #18 on: December 04, 2007, 11:32:07 am »
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...

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Re: Anyone have an autistic child?
« Reply #19 on: December 04, 2007, 03:14:46 pm »
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
« Last Edit: December 04, 2007, 03:30:52 pm by CheffoJeffo »
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Re: Anyone have an autistic child?
« Reply #20 on: December 04, 2007, 03:19:37 pm »
These forums are truly amazing sometimes.  :applaud:

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Re: Anyone have an autistic child?
« Reply #21 on: December 04, 2007, 03:29:46 pm »
These forums are truly amazing sometimes.  :applaud:

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

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Re: Anyone have an autistic child?
« Reply #22 on: December 04, 2007, 03:31:34 pm »
These forums are truly amazing sometimes.  :applaud:
Don' tell McCoy that. This isn't arcade related you know. ::)

You owe me a new monitor!

 ;D
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Re: Anyone have an autistic child?
« Reply #23 on: December 04, 2007, 04:00:22 pm »
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.
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Re: Anyone have an autistic child?
« Reply #24 on: December 05, 2007, 09:52:51 am »
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.

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Re: Anyone have an autistic child?
« Reply #25 on: December 05, 2007, 09:53:46 am »
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.

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Re: Anyone have an autistic child?
« Reply #26 on: December 05, 2007, 10:01:39 am »
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.
« Last Edit: December 05, 2007, 10:03:17 am by ChadTower »

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Re: Anyone have an autistic child?
« Reply #27 on: December 05, 2007, 10:11:52 am »

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.


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Re: Anyone have an autistic child?
« Reply #28 on: December 05, 2007, 10:13:01 am »
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).

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Re: Anyone have an autistic child?
« Reply #29 on: December 05, 2007, 10:21:44 am »
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.
« Last Edit: December 05, 2007, 10:24:34 am by ChadTower »

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Re: Anyone have an autistic child?
« Reply #30 on: December 05, 2007, 10:35:35 am »
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.

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Re: Anyone have an autistic child?
« Reply #31 on: December 05, 2007, 10:43:35 am »
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.

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Re: Anyone have an autistic child?
« Reply #32 on: December 05, 2007, 10:54:58 am »
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!




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Re: Anyone have an autistic child?
« Reply #33 on: December 05, 2007, 11:12:41 am »
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)
« Last Edit: December 05, 2007, 11:14:26 am by CheffoJeffo »
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Re: Anyone have an autistic child?
« Reply #34 on: December 05, 2007, 11:13:09 am »
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.



Quote
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".


Quote
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.





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Re: Anyone have an autistic child?
« Reply #35 on: December 05, 2007, 11:18:42 am »
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 ...
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Re: Anyone have an autistic child?
« Reply #36 on: December 05, 2007, 11:21:12 am »
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.


Quote
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.


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Re: Anyone have an autistic child?
« Reply #37 on: December 05, 2007, 11:27:12 am »
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.

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Re: Anyone have an autistic child?
« Reply #38 on: December 05, 2007, 01:44:19 pm »
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.

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Re: Anyone have an autistic child?
« Reply #39 on: December 05, 2007, 01:55:10 pm »
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!
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