Is autism the illness du jour ?

[creativeamanda]

You know, Savage does have a tiny point, though. In the 5 children I tested for autism, 2 were turn overs of doctors' diagnoses. In those cases, a psychologist gave the parents a Childhood Autism Rating Scale, told them to fill it out, and given the autism diagnosis based on that one test the parent filled out. The problem is, you cannot make the judgement based on that professionally. When I gave them the test, I was there along with a school psychologist, and a speech therapist. We each observe and complete the Childhood Autism Rating Scale, and then I administer the Autism Diagnostic Observation Scale (ADOS) and then call the parent for the Autism Diagnostic Interview (ADI-R).

In two cases, the doctor (which I have professional concerns about, anyway) gave the diagnosis to children who were already in a class for mental disabilities because the parents wanted their children to have a 1:1 aide in the classroom because of behaviors. In both of the cases, the child was retested by the school psychologist and given a dx of emotional disability.

What I'm saying is, there are a few kids out there diagnosed as Aspergers to explain behaviors. Savage did not get that autism is an educational, not a medical diagnosis. Health insurance does not cover it, so we treat it as an educational diagnosis and we will not take a diagnosis that involves one test filled out by a parent, especially when the parent has been pushing for a 1:1 in the classroom. You don't diagnose a child as having mental retardation with one test and you certainly should not diagnose a child as having autism by one test. I'm seeing doctors do it that way. That is a problem that the medical community needs to fix. Unfortunately, they are still behind the times in diagnosing autism. Parents are the best advocates, but I have had one parent yell at me for overturning a doctor's dx. I'm sorry, but if he were autistic, she would have known something was wrong long before the age of 9.

 

[Cool-Beans]

---> 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"!!!!

As I said, my heart breaks for the parents with a child who is truly autistic. My nephew is autistic. He doesn't love anyone. He can't carry on a conversation. He's wigged out in public more than once. But, still, he's very sweet in his own way and we all love him. I've watched his parents deal with it and listened to them talk about it since Day 1.

Everyone knew by the time he was a toddler that there was something wrong with him, the way he held his hands, the way he didn't respond to his name or talk to anyone or care about anyone, etc.

When, at four years, they finally diagnosed him as autistic, it was no big surprise.

His parents never had another baby due to the chance of having another autistic kid. And they worry themselves to death about who will take care of him when they die.

His older sis loved and took care of him when she was younger. Then she went through her pre-teen and teen years, where she wanted him locked in his room so her friends wouldn't see him. I'm not kidding. She actually suggested that several times. But she got over it and now loves and protects him again. My guess is she'll take care of him, somehow.

His mom was upset over his public fits, worrying what others thought. "They think he's just spoiled." I never much cared what anyone thought. Maybe it is because I'm like that or maybe it is because he isn't my child - I dunno, probably because I just don't give a hoot.

Anyway, I know very well what people whose kids don't "connect" go through. And, like I said, my heart breaks for all of them.

But, believe it or not, there are a whole bunch of people who actually do want their kids labeled as "on the spectrum." Just like there were a whole bunch of parents who wanted the kids labeled as "ADD" or "ADHD" when the child didn't actually have it. There aren't too many people pushing for the ADD diagnosis any longer, but a big percentage of folks pushing for autism diagnoses. And that is why I say it is "the cool" thing for which to get a label. It really is. I don't know why.

There are tons of kids with labels for things they don't actually have. Doesn't mean that NO kid has it or that I think it doesn't exist.

As the ADD craze began to taper off, everyone admitted that tons of kids who weren't ADD were taking drugs for it. Before the autism craze is over, people will admit that a bunch of kids who weren't autistic (or even "on the spectrum") were so labeled. I think so, anyway.

 

[breezy1077]

I guess I'm trying to figure out why anyone would want this dx.

There's a negative stigma to it

There's tons of therapy that as PP mentioned is NOT covered by ins. and is very expensive.

Meds are not normally given as PP also mentioned. In fact, I've had off-the-record recommendation by DS's last teacher and IEP team that he would possibly benefit from some meds for attention purposes next school year (I observed his behavior in class numerous times throughout the year and I believe his attention problems stem from SID from all the stimuli in the class). Trust me, after a couple months - he still is not on meds. It's not an easy thing to get for autism IMO.

The reason I mention the meds - is that there's no "quick fix" for this disorder. Instead, it's a ton of hard work!!!

So I can't imagine anyone seeking this out on purpose, just to: justify weird behavior - cover for poor parenting - or be "cool" to have the "in thing".

Seriously I'm very confused by all this. Maybe it's happening - but I can't for the life of me understand the reasoning or motivation behind it.

 

[freckles and boo]

Meds are not normally given as PP also mentioned. In fact, I've had off-the-record recommendation by DS's last teacher and IEP team that he would possibly benefit from some meds for attention purposes next school year (I observed his behavior in class numerous times throughout the year and I believe his attention problems stem from SID from all the stimuli in the class). Trust me, after a couple months - he still is not on meds. It's not an easy thing to get for autism IMO.

The reason I mention the meds - is that there's no "quick fix" for this disorder.

My child is on the Daytrana patch for attention. She has classic ADHD - hyperactivity, impulsiveness, and inattention. For years we didn't realize these weren't necessarily part of the autism. We just assumed all autistic kids were like her. The difference it has made in her quality of life is enormous. She is able to benefit from her therapies like never before now that her brain can put on the brakes long enough to learn (both academics and behaviors). We hope that by fourth or fifth grade she will be able to function well enough to move to regular ed. I don't give a rat's behind what people think about the "overmedication of our children" because they aren't here to deal with my child.

 

[Cool-Beans]

I guess I'm trying to figure out why anyone would want this dx.

There's a negative stigma to it

There's tons of therapy that as PP mentioned is NOT covered by ins. and is very expensive.

Meds are not normally given as PP also mentioned. In fact, I've had off-the-record recommendation by DS's last teacher and IEP team that he would possibly benefit from some meds for attention purposes next school year (I observed his behavior in class numerous times throughout the year and I believe his attention problems stem from SID from all the stimuli in the class). Trust me, after a couple months - he still is not on meds. It's not an easy thing to get for autism IMO.

The reason I mention the meds - is that there's no "quick fix" for this disorder. Instead, it's a ton of hard work!!!

So I can't imagine anyone seeking this out on purpose, just to: justify weird behavior - cover for poor parenting - or be "cool" to have the "in thing".

Seriously I'm very confused by all this. Maybe it's happening - but I can't for the life of me understand the reasoning or motivation behind it.

I don't understand it, said so before (I think, too lazy to read my own posts.)

But there were tons of kids who were not ADD who were diagnosed as such and put on meds to keep them calm. I knew several of them.

I have a good friend whose kid is 14 and she's just now (after YEARS of meds) bringing up the ADD thing and asking me again (after all these years) what my opinion is. She knew damn well what my opinion was - she knew before she started him on the drugs and has known all along, even though it wasn't discussed. She just wants someone to agree now that he should be pulled off the meds and can't very well ask all the folks who agreed he should be on them.

She thinks maybe she was wrong and he didn't have ADD. Maybe he's got "some kind of autism problem" or maybe he has "outgrown" his ADD and maybe she should talk to the doc about reducing or eliminating his meds. And there is absolutely nothing wrong with her son. At all. Even a little.

But if she pushes for it, she'll get an "on the spectrum" diagnosis, just like she got an ADD one. Or maybe, God willing, she'll just stop labeling him.

Some people hear about this stuff and think, "Yeah, me, too!" I don't know why, they just do. I don't think it makes them bad people. It just makes sense in their heads.

And there are tons of people - I've already met two of them - whose kids are fine, but the moms think they are "on the spectrum." They don't want actual autism, they want "on the spectrum." I don't know why.

 

[creativeamanda]

I guess I'm trying to figure out why anyone would want this dx.

There's a negative stigma to it

There's tons of therapy that as PP mentioned is NOT covered by ins. and is very expensive.

Meds are not normally given as PP also mentioned. In fact, I've had off-the-record recommendation by DS's last teacher and IEP team that he would possibly benefit from some meds for attention purposes next school year (I observed his behavior in class numerous times throughout the year and I believe his attention problems stem from SID from all the stimuli in the class). Trust me, after a couple months - he still is not on meds. It's not an easy thing to get for autism IMO.

The reason I mention the meds - is that there's no "quick fix" for this disorder. Instead, it's a ton of hard work!!!

So I can't imagine anyone seeking this out on purpose, just to: justify weird behavior - cover for poor parenting - or be "cool" to have the "in thing".

Seriously I'm very confused by all this. Maybe it's happening - but I can't for the life of me understand the reasoning or motivation behind it.

They can't make that reccommendation on or off the record. They are educators, not physicians. They need to leave their expertise in the education realm. Since autism is a communication disorder, I can't possibly see how medication could help unless your child is extremely aggressive. If they are aggressive, I tell parents that they need to go to their physician to discuss options because I don't know if they are being aggressive because they need medication or if they are in pain and need medical care. That isn't my call--it's the physician's. The major problem I have is physicians need to be involved in the IEP process when there is a dx such as autism or multiple disabilities. My personal pediatrician cares for many children I work with and therefore is happy to do a conference call for an IEP meeting. Not many doctors will do that.

 

[isyne4u]

My DS is on meds to control the different aspects of the Autsim.
He is on Concerta for the attention issues (this was his first dx). He is on Zoloft for his anxiety and compulsions and Risperdal for his anger/violence/anxiety. His meds run me, with insurance, close to $100.

So there are some kids that are on meds just to help control symptoms. And I have to say they have made a difference. This is the first year at VBS that he didn't cower when the music started. I'm thrilled!

tara

 

[breezy1077]

My child is on the Daytrana patch for attention. She has classic ADHD - hyperactivity, impulsiveness, and inattention. For years we didn't realize these weren't necessarily part of the autism. We just assumed all autistic kids were like her. The difference it has made in her quality of life is enormous. She is able to benefit from her therapies like never before now that her brain can put on the brakes long enough to learn (both academics and behaviors). We hope that by fourth or fifth grade she will be able to function well enough to move to regular ed. I don't give a rat's behind what people think about the "overmedication of our children" because they aren't here to deal with my child.

I've been anti-meds for my son - up til now. No judgement for others for their decisions, I just wanted to exhaust all other options b4 meds. But, I think we've finally come to a point that meds might help him. When I observed him in the classroom - my heart ached for him. He definately was not learning. In circle - he'd be fixated on a hood from a shirt on the kid in front of him - and couldn't redirect or focus on the teacher. This is the first year that he actually regressed instead of progressed.

I'm so grateful for your personal story because I'm still at war with myself over this decision. It's nice to hear a positive outcome.

I'm still waiting on the Dr.s decision - she won't prescribe anything without DS's re-evaluation, and the Psych's backed up so much - they're not even scheduling for a few weeks and then it'll be a few weeks after that for a rushed appt.

Thank you again for sharing - you have no idea what that means to me.

 

[mickeysgal]

I am trying to learn here. My heart goes out to all of you and your children. You all seem to be great advocates for your children.

Question...can a child be an old-fashioned daydreamer or is that what is considered autistic or "on the spectrum" by today's definition?

 

[breezy1077]

I am trying to learn here. My heart goes out to all of you and your children. You all seem to be great advocates for your children.

Question...can a child be an old-fashioned daydreamer or is that what is considered autistic or "on the spectrum" by today's definition?

An old-fashioned daydreamer could never be confused with an autistic child.

 

[freckles and boo]

I've been anti-meds for my son - up til now. No judgement for others for their decisions, I just wanted to exhaust all other options b4 meds. But, I think we've finally come to a point that meds might help him. When I observed him in the classroom - my heart ached for him. He definately was not learning. In circle - he'd be fixated on a hood from a shirt on the kid in front of him - and couldn't redirect or focus on the teacher. This is the first year that he actually regressed instead of progressed.

I'm so grateful for your personal story because I'm still at war with myself over this decision. It's nice to hear a positive outcome.

I'm still waiting on the Dr.s decision - she won't prescribe anything without DS's re-evaluation, and the Psych's backed up so much - they're not even scheduling for a few weeks and then it'll be a few weeks after that for a rushed appt.

Thank you again for sharing - you have no idea what that means to me.

You are welcome.

The decision to medicate her was very, very difficult for us, too. As with the autism, we also had a medical diagnosis of ADHD from her neurologist. She had to get a sleep deprived EEG to rule out any seizure disorders (ADHD meds can aggravate seizures and a percentage of autistic kids have seizures) and bloodwork to make sure there weren't other potential problems. She has no heart problems and that was ruled out as well because of the potential for rapid heartbeat. In fact, I requested that the nurse assigned to her class check her heartrate several times in the first week she was on the medication. I now regret that we didn't address this sooner, but we simply didn't know. And yes, it was our special ed coordinator who gently suggested that we discuss this with her neurologist. It may not have been her place to do so, but I am very grateful she did. She is doing very, very well. She will never be "normal" but she is an awesome kid and I am very proud of her. I firmly believe she has a bright future.

 

[creativeamanda]

I am trying to learn here. My heart goes out to all of you and your children. You all seem to be great advocates for your children.

Question...can a child be an old-fashioned daydreamer or is that what is considered autistic or "on the spectrum" by today's definition?

No. They can't. The testing is not as subjective as Michael Savage woould have you believe. That's why the most effective testing comes from a team using specifically the Autism Diagnostic Rating Scale (ADOS) and Autism Diagnostic Interview-Revised (ADI-R) along with at least 3 observations at 3 different times during the day with three different people doint the observation.

 

[mickeysgal]

An old-fashioned daydreamer could never be confused with an autistic child.

Again, I'm just trying to learn. Upthread someone posted that their child was dreamy and ended up with a diagnosis. That's what made me question whether a daydreamer could be considered "on the spectrum".

 

[creativeamanda]

Double post---I've never had that happen

 

[Camicar]

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?!?!

I'm not surprised based upon my experiences with pediatricians. For just one example, recently my 14 year old dd went to see the pediatrician for stomach pain she was having. Doctor appropriately asked about her eating habits. Dd mentioned she doesn't always have dessert bec she watches what she eats bec she doesn't want to get overweight. Seems reasonable, right? Apparently not.

Next words out of the pediatrician's mouth? "You have a serious eating disorder and need counseling."

Huh?

My dh was with our dd and he protested the 'diagnosis' and was told he was being willfully blind and that our dd needed immediate counseling. ALL based on one statement, that should have been considered a reasonable behavioral choice. But no, she was having 'body image problems' and needed intense counseling to save her life. What a bunch of crap. We protested and saw another doctor who after talking to dd said that she was fine emotionally, that the first pediatrician thinks ALL teen girls have eating disorders/body image problems and need therapy, and that he was glad we had enough education and self-confidence to question the first doctor. And can we now move on to figuring out why she's having stomach pains? Thank you!

So imagine you go to the doctor with concerns about your child's behavior and the doctor makes a 'diagnosis'. Imagine that you are someone who has a tendency to automatically believe a doctor's diagnosis, esp if that diagnosis 'seems' to make sense. Imagine further that the doctor tells you that there is medication to 'handle' the problem. Guess what happens? You get a misdiagnosis and overmedication.

So, yeah, I believe that there are probably quite a few kids out there who have been misdiagnosed.

 

[shannonh]

I guess I'm trying to figure out why anyone would want this dx.

There's a negative stigma to it

There's tons of therapy that as PP mentioned is NOT covered by ins. and is very expensive.

Meds are not normally given as PP also mentioned. In fact, I've had off-the-record recommendation by DS's last teacher and IEP team that he would possibly benefit from some meds for attention purposes next school year (I observed his behavior in class numerous times throughout the year and I believe his attention problems stem from SID from all the stimuli in the class). Trust me, after a couple months - he still is not on meds. It's not an easy thing to get for autism IMO.

The reason I mention the meds - is that there's no "quick fix" for this disorder. Instead, it's a ton of hard work!!!

So I can't imagine anyone seeking this out on purpose, just to: justify weird behavior - cover for poor parenting - or be "cool" to have the "in thing".

Seriously I'm very confused by all this. Maybe it's happening - but I can't for the life of me understand the reasoning or motivation behind it.

I agree with you, like I posted before. But, after thinking about all of this, here's what I think...
If someone really wants the diagnosis (which is a story in it's own right) and they get it..they don't really have to go through all of the therapies and such. I mean, yes they have a so called diagnosis, but if there's really nothing wrong, that child doesn't need speech, ot, behavioral and any other type of therapies that we do. Therefore, all they did was get an excuse.
See what I mean?
Again, I have no clue why anyone wants to do this.

Speaking of meds, mine is on the lowest dose of Risperdal for her anger..and what a difference it makes! It's so amazing. I wasn't sure at first. We waivered for a little, but decided to try.
It doesn't changer her at all, except you can see when a fit starts that it's not near as bad. She seems to be able to handle it better.

 

[dejr_8]

Therefore, all they did was get an excuse.
See what I mean?
Again, I have no clue why anyone wants to do this.

Because

A) They now have an excuse as to why little Johnny isn't doing as well as his friends. They can say he has Autism as opposed to admitting that maybe Johnny isn't all that brite. This fits in great with the current victim mentality in the US.

B) They can get sympathy from friends and relatives.

 

[KirstenB]

Again, I'm just trying to learn. Upthread someone posted that their child was dreamy and ended up with a diagnosis. That's what made me question whether a daydreamer could be considered "on the spectrum".

That may have been me. If you met Zoe for teh first time, you would immediately see how "daydreamy" and sleepy she appears. The majority of time, she will not answer to her own name (apparently this is a red flag in very young children), will not engage in play with other children. I'm a SAHM and I spend virtually all day trying to get her to focus, and keep her in the "now". It's hard to understand if you've never been around a kid like this, but she's under-responsive to sensory input. If I want to try to coax any speech or interaction whatsoever out of her, first we'll either play wrestle together, or I'll bring her outside to her swingset. She needs a lot more activity and input than your normal kid does.

Okay, I've gotten more wordy than I intended! If her daydreaminess was the only issue, she wouldn't have received an autism dx. She doesn't understand emotion at all. She gets a very blank look on her face whether you're happy with her, or angry. She has no concept of safety. I pray she never gets away from me in a parking lot, because if you yell "stop", again, it just confuses her, and she won't stop. She's not defiant or rebellious, she truly has no clue of the emotion in different voice intonations. This is why I thought she might be mildly retarded when I brought her in to the developmental peds who saw her.

They explained that many kids with autism are over-reactive to sensory input. My limited experience with autism at that point was the kid who put their hands over their ears and had a complete meltdown for 3 hours. But then they explained that autism is characterized by either over- or under- response to stimuli. Obviously, Zoe is the latter. She doesn't understand social interaction at all. I've literally had to teach her how to play with a doll, blocks, etc. Yes, all children learn how to play, but she learns at a MUCH slower rate.
All things considered, she's mild by comparison to most kids effected by autism.

 

[freckles and boo]

Because

A) They now have an excuse as to why little Johnny isn't doing as well as his friends. They can say he has Autism as opposed to admitting that maybe Johnny isn't all that brite. This fits in great with the current victim mentality in the US.

B) They can get sympathy from friends and relatives.

I am not going to deny people like this exist. I just have never encountered someone who would be satisfied with simply having an excuse. It defies logic. Having the diagnosis is only the start of the journey. NOTHING changes for the child unless you act on the information.

 

[TheZue]

I am trying to learn here. My heart goes out to all of you and your children. You all seem to be great advocates for your children.

Question...can a child be an old-fashioned daydreamer or is that what is considered autistic or "on the spectrum" by today's definition?

Nope...in fact studies are starting to come in that kids with Autism don't daydream at all.

http://news.bbc.co.uk/1/hi/health/4751075.stm