Is autism the illness du jour ?

[KirstenB]

Yep, Breezy's post pretty much nailed it.

 

[dejr_8]

---> this is the closest thing to a "jaw dropping on the floor" smiley.

I can see what Cool-beans is saying. When we lived in MA, it seemed that many parents wanted to have their kids labeled special. It seems bizarre but I've seen it.

Based on some of things I've read here I should push to have my 9 year old labeled as special (or on the spectrum). He has never been able to tell us about his day at school, he still forgets the name of everyday items (salt, pepper for example), he can't tell the difference between chicken and steak, he still has trouble using a knife and fork together, he freaks out when we take him to the dentist or the doctor. In fact, today at baseball he freaked out so much that they called 911 and had the EMTs check him out. He was taken out of his first grade class and put into a special class (of 12) because he couldn't read. I could go on and on with examples.

Does that make us bad parents because we haven't looked for a "solution"?

But ya know what, he got all A's and B's in school and passed the EOG tests. Does he have issues, yes. Are we looking for an excuse, no.

Again... These statements in no way imply that I don't admit or understand that Autism exists. But I do believe that some parents and "clinicians" push the diagnosis.

 

[disneyfan67]

---> this is the closest thing to a "jaw dropping on the floor" smiley.

Sorry, just a minute while I pick up my jaw.....ah, there. Whew. Shocked doesn't even describe how I feel about this statement. Autism and ASD is the farthest thing from "cool"!!!!

Trust me - you don't get to run with the "cool" crowd because your child is autistic. In fact it's quite the opposite.

You don't get invited to picnics - because they don't want the disruption.

Your child does not get invited to any B-day parties unless it's someone else who's child is also dx'd and understands.

It is not cool to not be able to hear your child say they love you - or even call you mommy. (I was actually lucky - and was able to hear him say these things at age 4 ish - some never get this "perk")

It is not cool to deal with an autistic meltdown (soooo different than a normal toddler meltdown - b4 anyone tries to make that comparison) - where the only thing you can do is prevent them from hurting themselves ad not interfere more than that or it will go longer - for 2 1/2 hrs!

It is not cool to send your child to school and not have the luxery of them telling you about their day.

It is not cool to see your child in aguish because he is constantly shunned by his peers (especially if he's like my son, who's a social seeker - not avoider).

It is not cool to see the frustration he goes through on a daily basis over things most kids and their parents take for granted - like holding a hand of cards, or not being able to cut his meat, or open a wrapper on a granola bar.

Soooo not cool to see him build in his manic behavior due to sensory issues - just from going to the grocery store (it took me 1 hr. to buy 4 items from the store yesterday)

I could go on and on about how not cool this thing is - and my child is considered for the most part "higher functioning"

Wow. It is so not the "cool" thing.

Good job Breezy and I have to say you put this in better words than I could. Everything you wrote is what I go through on a daily basis and I know all too well what you, me, and other parents of Autistic kids go through.


If what I have been through with my son who's been diagnosed with this terrible curse for over 9 years now, is considered cool, then I never knew what the word cool really meant.

 

[Barbossa]

Yikes, Savage is a mindless nut job. He doesn't deserve the publicity he's getting for this.

 

[jack hannah bananah]

The thing I find bizarre about his argument is the idea the DRUG companies are profiting from this. Drugs generally aren't used to treat autism. On all the boards I've been on there has been one mom talking about prescription drugs and she's incredibly torn on the subject. If anything from what I've seen parents of autistic kids distrust the big pharm companies to avoid prescription drugs more than they did before the diagnosis, not get vaccinated (not only the autistic child but subsequent kids), and think deeply about what is in any over the counter drug. If anything this diagnosis is probably a money LOSER for the drug companies when looking how most families respond.

This is interesting. I would be curious to know how many of the responders on this board use some drug to help with the disorder. Please don't take this question the wrong way. I would never judge if you are. I am heart sick listening to all of your stories and am sorry that people can be so cruel. I actually think that this whole controversy can be a positive thing for the autistic community out there. This is a perfect way to expose the truths of the disorder and help bring some compassion to people.
At the same time, this exposes the real problem of the over drugging of our children that is going on today. I think the poster is right by suggesting that most parents of truly autistic children are skeptical of drugs. Are we right?

 

[shortbun]

I can see what Cool-beans is saying. When we lived in MA, it seemed that many parents wanted to have their kids labeled special. It seems bizarre but I've seen it.

Based on some of things I've read here I should push to have my 9 year old labeled as special (or on the spectrum). He has never been able to tell us about his day at school, he still forgets the name of everyday items (salt, pepper for example), he can't tell the difference between chicken and steak, he still has trouble using a knife and fork together, he freaks out when we take him to the dentist or the doctor. In fact, today at baseball he freaked out so much that they called 911 and had the EMTs check him out. He was taken out of his first grade class and put into a special class (of 12) because he couldn't read. I could go on and on with examples.

Does that make us bad parents because we haven't looked for a "solution"?

But ya know what, he got all A's and B's in school and passed the EOG tests. Does he have issues, yes. Are we looking for an excuse, no.

Again... These statements in no way imply that I don't admit or understand that Autism exists. But I do believe that some parents and "clinicians" push the diagnosis.

So as long as a child gets good grades, all that other stuff doesn't matter? Is 'sink or swim' your philosophy? What do you mean 'an excuse?' There COULD be a reason. Is it ok with you that your son needed 911 called for him? I just don't understand what you are trying to say here.

 

[KirstenB]

This is interesting. I would be curious to know how many of the responders on this board use some drug to help with the disorder. Please don't take this question the wrong way. I would never judge if you are. I am heart sick listening to all of your stories and am sorry that people can be so cruel. I actually think that this whole controversy can be a positive thing for the autistic community out there. This is a perfect way to expose the truths of the disorder and help bring some compassion to people.
At the same time, this exposes the real problem of the over drugging of our children that is going on today. I think the poster is right by suggesting that most parents of truly autistic children are skeptical of drugs. Are we right?

No drugs here, but in the interest of full disclosure, Zoe is still very young, almost 3. She's always had a hard time sleeping, and I wouldn't rule out some type of sleep aid when she's older. I know an Aspie, who's the most anxious child I've ever met. He's 9, and I believe he takes some type of anxiety med.

I view it in the same light if my child had a physical disorder like diabetes. I'd make sure she got insulin, so if we need meds in the future to help Zoe function, I'm open-minded on the topic.

 

[freckles and boo]

Does that make us bad parents because we haven't looked for a "solution"?

I don't know what kind of parent you are. I am going to assume that you deeply love your child and want him to reach his full potential, just like any other parent. The only "solution" to autism is therapy, and if your child was autistic, searching out therapy would definitely make you a good parent.

 

[disney-super-mom]

I don't know of one parent who wasn't devastated to the core of their being when their child was diagnosed with an autism spectrum disorder.

To say it's the "cool thing to have now" or the "in thing to have your child labeled on the spectrum" or the "illness du jour" or an "excuse" is a horrible, ignorant thing to say. All it does is trivialize a terrible, very real, lifelong disorder.

And just for some in-your-face reality, many of those even on the higher functioning end of the spectrum will very likely end up needing lifelong care and supervision.

For those who question the authenticity of the spectrum......spend a few weeks with a group of kids who are on the higher end of the spectrum. You'll quickly find out it's WAY more than quirkiness and behavorial problems. It'll be a great education for you.

 

[KirstenB]

I don't know of one parent who wasn't devastated to the core of their being when their child was diagnosed with an autism spectrum disorder.

To say it's the "cool thing to have now" or the "in thing to have your child labeled on the spectrum" or the "illness du jour" or an "excuse" is a horrible, ignorant thing to say. All it does is trivialize a terrible, very real, lifelong disorder.

And just for some in-your-face reality, many of those even on the higher functioning end of the spectrum will very likely end up needing lifelong care and supervision.

For those who question the authenticity of the spectrum......spend a few weeks with a group of kids who are on the higher end of the spectrum. You'll quickly find out it's WAY more than quirkiness and behavorial problems. It'll be a great education for you.

You're exactly right. DH and I even don't have the same viewpoint about Zoe's future. He's convinced she'll need lifelong care, and live with us. I think he's hoping we live to be 120!! I envision her as living independently, with some type of technical job with minimal social interaction. As I posted earlier, Zoe was dx'd last May at UVA, and I'll relive that day for the rest of my life. I went in expecting them to find a child who was mildly mentally retarded, and left with a devastating diagnosis. She seemed slow and dreamy, but not autistic. I had the stereotypical view of autism, someone who was normal until they were 18 mths, then vaccines, or whatever, permanantly altered their future. I actually told the doctors Zoe couldn't possibly have autism, because she'd never regressed after a shot. They said regressive autism only occurs 17% of the time. That was my wake up call as to how little I knew about a disorder that would turn our family upside down.

 

[creativeamanda]

I have been teaching children with autism for 15 years. I also have 3 nephews who are autistic. Currently, I am my school district's low incidence disabilities coordinator, which of course includes autism. Autism is very hard to diagnose, even harder to determine the best therapy formula for each child. It takes countless hours of work and often leads to high burnout rates. Autism is not an excuse for misbehavior. A lack of ability to communicate is the basis for what we deem as misbehavior and what children with autism deem as either an attempt to communicate or frustration that things are not just right.

I have tested 5 children to determine diagnosis for autism and placed 1. (In SC, where I teach, an autism diagnosis is dependent on a team of three making the diagnosis with one being an autism specialist, 1 a speech therapist, and 1 a licensed practioner of the healing arts) The second hardest thing I ever had to do is tell this one parent their child was indeed "on the spectrum". The hardest was right after my sister in law called and said, "the doctor says he's autistic but I don't agree" telling her that I was sorry, but I did agree.

Stating autism is the "illness du jour" just shows a great deal of ignorance on Michael Savage's part. I would love for him to spend thirty minutes with the one student I have who bit me the week before last because get this: he was sleepy and wanted to sleep, could not communicate it even with Picture Exchange, and knew that would get my attention. I would love for him to sit and watch my nephew sign "more candy" and help himself (with no one watching) because no one has ever explained to him in social situations that he has to make sure that someone acknowledges he is asking for something. I'd like for him to be sitting next to a parent when they are told that their child has autism, the only proven method is hours and hours of therapy which is expensive, but insurance won't cover it. Sure, autism seems like the illness du jour to me.

 

[loco4dis]

She judged this other woman. People are screaming on this thread about being judged. While there are degrees of difference, it's still the same thing.

Pot stirring? Whatever. Doesn't change the fact that I cannot stand when people say or imply that someone else is not entitled to their own feelings because they don't have it bad enough.

Wow, I sure didn't mean to cause a controversy. I wasn't judging the mom, I was trying to help her feel better because she sounded like she was starting to feel something was "wrong" with her son because he got a couple of C's. That was the point I was trying to make in my comment to this thread. Of course we want our children to reach their highest potential, but they won't do that all the time in every circumstance, and when they don't it doesn't always require an explanation or a diagnosis. All of our children will fall short of perfection from time to time. I just meant that I see more and more of a rush to assign an affliction to this when it happens, which is kind of silly and reflects a problem on the parent's part much more than on the child's.

 

[isyne4u]

Wow! I'm one of the cool kids! I'll have to tell my 8 year old that thanks to his dx he has put me with the cool kids!

If this is the case...I would prefer not to be one of the cool kids. I would prefer to have an 8 year old who doesn't hide under furniture when he is upset, who doesn't bark at strangers, who can hold a conversation with an age equivalent peer, who can participate with his cub scout pack and not look like the group fool. I would love for him to be able to join a sporting team but his coordination makes jumping jacks impossible.

He worries about things that are years in the future. He worries about anything he can't control. There is no springing a surprise on him because it causes him to freak out.

I would trade all the times I've had to sit in the middle of a store, restaurant, park, etc holding him with his arms wrapped around his own body, my arms holding him as tightly as I could, my legs wrapped around him, and praying he didn't break my tooth or my nose as he was thrashing around. The whole time I sat there rocking him, crying and whispering in his ear how everything was going to be okay and that mommy loved him. Oh and the whole time people would stare at me wondering why I couldn't control my kid any better and why I was being so mean to him by holding him so tightly. It makes me cry just thinking about it.

Yep I'm one of the cool kids! This is one club I would give my right arm to get out of!

tara

 

[JenM]

You don't get invited to picnics - because they don't want the disruption.

Your child does not get invited to any B-day parties unless it's someone else who's child is also dx'd and understands.

Or your child is asked not to participate in song he practiced so hard to learn at his first holy communion because the church is afraid his loud singing will cause a distraction for the other parents trying to enjoy their "normal" kids' performances.

Happened to a classmate of my friend's kids. Just an awful thing for them to do to this little boy.

Here in NY we have a news anchor who has been responding to Savage's nonsense on his blog because he has a 10-year-old son with autism. Very classy response (it's beneath the story about the MTA fare hike): http://weblogs.cw11.com/news/jimwatkins/

 

[Tink&SquirtsMom]

But ya know what, he got all A's and B's in school and passed the EOG tests. Does he have issues, yes. Are we looking for an excuse, no.

But that's just the thing. It's not about having an excuse, it's about having an explanation. With an explanation one can find a way to best work with whatever it is.

My dd is dyslexic. Sure she can get by without a diagnosis and do alright, but with a diagnosis we found a way to teach her to read that made more sense to her so she can excel. She is still doing the same level of work as her peers, she is still working hard and independently like her peers, she meets the same expectations as all the other kids... but shes no longer working 4x as hard for half the results. For example, she has the same spelling words as other kids but she writes certain letters that are harder for her to process in a bright color. Simple techniques, that don't take away from anyone else that make her better able to work at her peers level. She also has poor fine motor skills. Again simple exercises she can do at home while watching tv, make a huge impact and also focus on her responsibility to help herself. We have seen such an improvement in her self esteem, because she feels like she "gets it" and she likes having tools to be able to help herself.

My dh grew up without a diagnosis because his parents refused to have their child labeled (they are highly image conscious people). He always felt he was just dumb. He was finally diagnosed ADHD and dyslexic when he was in his mid-20's and it has made a dramatic difference in him. He was given some tools to improve his reading comprehension and writing skills and it improved his self confidence dramatically, because he realized he wasn't dumb he just needed to work at it differently. He literally went from being a low paid temp to a succesful professional in a matter of one year (His employers have no idea at all about his diagnosis, because he does not and never has asked for any accomdation for it). He used to sweat sending out a simple email to his boss for fear of saying something wrong. 10 years later and I look at the old emails I saved from the beginning of our relationship and I can't even believe how almost child like the writing is. Now he writes huge technical documents on a daily basis.

Now I agree SOME (certainly not all) parents utilize a diagnosis as an excuse, but to prevent a child from getting tools that can help them become more independant is not helping them either. As far as if not seeking solution to your child's difficulties makes you a bad parent, I will withold judgment, but you would not want to hear my husbands answer. He still has issues with his parents for ignoring many years of teachers trying to get him tested.

 

[CPT Tripss]

Let me clarify. Savage's initial comment was obnoxious, rude, and insensitive. But he does this to create the controversy that brings attention. Then when he has the attention, he can clarify his position and make the point he really want to make - now that more are listening. If you have ever actually listened to him (I know it is hard because he is sooo negative and obnoxious), you would know that he has a real passion about the amount of drugs this society is taking and he is concerned about its effect on our society.

To be clear about my feelings. I think he went over the line and should not have been so insensitive in his initial statement, but his response was perfectly logical.

Also, I think he should have not attacked autism specifically. There are few missed diagnosed autistic children (and if they are they usually find there is another serious issue.). The missed diagnosis are on the spectrum.
NO ONE should even think of criticizing a parent of an autistic children.

Well that's a swell way to make a point. Be obnoxious and then say what you wanted to say? I think I'll keep him on my ignore list, except maybe to find out who his major sponsors are and take my business elsewhere.

 

[IDoDis]

There's a wonderful book called "Rules" by Cynthia Lord which was a Newberry honor book this year. The book was written for middle school-aged child to read, but DH and I both read it anyway (we're teachers). It's about a 12 year old girl who has a brother with Autism. Great book. I highly recommend it. It's now available in soft back.

http://www.amazon.com/Rules-Newbery-Honor-Book-Cynthia/dp/0439443822

 

[dejr_8]

I think this debate comes down to one issue.

Some of us believe that SOME children diagnosed with Autism (or on the spectrum) probably do not have a real issue.

Those with an Autistic child can't believe that anyone would want to have their child labeled as Austistic if they weren't.

 

[shannonh]

One thing that I do want to say is..I'm sure there are parents that want to find something wrong with their kids. I mean there are people (rare, but there are) that try to make their kids sick for attention. I don't know why? Maybe they are looking for an excuse for their B average child? Who knows? It's so sad and shocking to me. I can't imagine wanting something to be wrong with my children.
What I'm surprised about is the fact that these people could possibly get a diagnosis with nothing being wrong with their child. It took us so long, with lots of appointments and referrals to get to where we are, it's just hard to believe that they'd get a diagnosis. Amazing?!?!
Again, what's hard about Autism is that one minute the child you see may be "normal", but the next they are in a rage. Someone who doesn't know, may think that the child is just unruly. Just remember, you really don't know. So, don't assume, don't judge, don't point or make rude comments..
to us that are dealing with it.

 

[freckles and boo]

There's a wonderful book called "Rules" by Cynthia Lord which was a Newberry honor book this year. The book was written for middle school-aged child to read, but DH and I both read it anyway (we're teachers). It's about a 12 year old girl who has a brother with Autism. Great book. I highly recommend it. It's now available in soft back.

http://www.amazon.com/Rules-Newbery-Honor-Book-Cynthia/dp/0439443822

Rules is a really terrific book.