Is autism the illness du jour ?

[jodifla]

I'm not comparing Autism to ADD as diseases. I am comparing the "epidemic" of Autism to the "epidemic" of ADD.

You MUST agree that every child that was diagnosed with ADD during the height of ADD awareness didn't have ADD.

And what I am (and I think some other posters are) saying is that the statement also holds true for Autism.

So, you take your child into your state's early intervention system because your child isn't talking at almost 2 years old , and they decide to assess him as autistic.

What do you do? Ignore their advice? Ignore their offers of services? For some parents it's the news they felt was right and expected. But many parents just accept it as gospel, and move on (often in a panic) from there.

You are COMPLETELY at the mercy of the evaluator.

 

[breezy1077]

What I am questioning based on what some people have posted is why it would take 20 hours of classroom examination, plus visit upon visit to specialists to get the diagnosis if it was so straight foward. Perhaps it is a child that is on the fringe of the disease. I don't know.

But to me it looks a lot like someone looking until they find what they wanted to find.
.

Again. No dejr 8. I believe the length of the testing is to also see WHERE they fall on the spectrum. AND to determine where the strengths and weaknesses are. This is done so that the appropriate therapies are met.

For instance, the testing was able to determine that my son has a higher IQ than most kids on the spectrum - to which the Dr. was able to reassure me that this might be a good predictor of DS's success in the future of finding a way to "cope" and get along in the real world - no guarantee, just a predictor. However, the testing also determined that DS had extreme issues with visual-spatial and fine motor skills.

This is one example of what the testing determined.

 

[KirstenB]

I do diagnose autism, and I do agree with much of what Todd&Copper is saying.

I also wonder what we are doing to these children in the long run. What will happen to the 4 year old that I label as autistic today? How will this affect him 10, 20, 40 years from now? Will it limit his employment chances? Ability to obtain insurance? Obtain an education? Will people have lower expectations of him because of his diagnosis, and thus, will this be a self-fulfililng prophesy?

As for Michael Savage, I find his comments reprehensible, but I find censorship more intolerable. So let him speak - but don't listen to him.

I want to make sure I understand...do you agree with Todd and Copper about parents going "shopping" for a diagnosis of autism? Or is there a different point you agree on? Our youngest, Zoe had to wait 3 mths to get into UVA Children's Hospital to be assessed by a team of developmental pediatricians. This was after her regular pediatrician referred us for a cognitive assessment there.

Do you truly have parents who are asking you to diagnose autism where it doesn't exist? I can't even wrap my mind around this. I argued with the doctors at UVA as to why I thought Zoe DIDN"T have autism. It's been such a painful diagnosis, I can't imagine anyone seeking it out. It's been a year since she was diagnosed and my hands are shaking as I'm typing. It was that traumatic.

 

[freckles and boo]

What I am questioning based on what some people have posted is why it would take 20 hours of classroom examination, plus visit upon visit to specialists to get the diagnosis if it was so straight foward. Perhaps it is a child that is on the fringe of the disease. I don't know.

But to me it looks a lot like someone looking until they find what they wanted to find.

Flame me for that statement if you like, but for me (and others that have posted) the Autism issue is a much like ADD was 10-15 years ago.

It may take twenty hours (or weeks or months) because this isn't cut and dry. There are no blood tests for autism. There are no scans or other scientific absolutes. Autism is a collection of "problems", not a "disease" per se. Every person with autism is unique, but almost every autistic person will be affected in the following areas -

Communication - some children, especially those with Aspergers, will talk early and clearly but obsessively and literally (no nuances). Others will learn to talk later than normal (my child couldn't answer yes or no questions until she was four). The speech may be echolalic (repeating movies, tv, books, etc.) which goes to show that speech isn't always communication. Some people will never speak and will only be able to communicate with written language or pictures. Some people will never be able to effectively communicate.

Sensory - nearly every autistic person will have sensory issues. Some will be hypersensitive. Lights are too bright. Sounds, even little things like the hum of a flourescent light, are painful. The feeling of clothing on the skin is brutally painful. Smells are overpowering. Other kids, like my child, are hyposensitive. It takes extra stimulation for her body to "feel" what other people feel. Deep pressure in a backrub, something that would feel painful to others, is required just to feel. She often feels like a balloon floating away and has to go to bed with a ten pound blanket on her so she will go to sleep.

Behaviors - many autistic people "stim". This is also called stereotypy. It is a collection of behaviors, usually movement oriented. Some people spin. Some move their hands or flap. Some roll. Some have facial movements. Some don't have any outward stims but they do other things that are repetitive. Stims aren't completely understood, but they are thought to be something that is soothing or calming. Behaviorally people with autism also may "melt down". Usually there are triggers that preceed these melt downs, and often they have to do with sensory overload. Melt downs can sometimes be avoided by either avoiding the triggers or by helping the person learn other strategies for coping.

Social - autistic people have to be taught things that the rest of us learn naturally or easily. Looking others in the eyes. Taking turns. Role playing (you be the mom, I'll be the baby). How to make friends and be sensitive to emotions. How to read a face. How to read between the lines. How to sooth someone who is crying. NONE of these things come easily or naturally and some of these things will never happen for many people with autism. The word autism comes from the Greek word autos (self). It is hard for people to relate to others. That doesn't mean they are selfish. They simply are wired very differently.

Other information

Intellect - it used to be thought that all people with autism were intellectually impaired. Some are. Most aren't. There are some with savant characteristics, but most aren't Rain Man. They are just people whose potential is locked away in brains that don't function normally.

Causes - nobody knows. There is the ugly debate over vaccines. There are genetic theories. There are environmental theories. There are diet theories. At this point, for my family anyway, our focus is on making sure our daughter gets the best education she possibly can so her contributions to this world exceed her needs.

There are about a thousand other things I could add but I have to take my daughter swimming. Please ask if you want to know something. You asked about dog poop, the least you can do is ask parents who are in the trenches what they are dealing with on a daily basis.

 

[disney-super-mom]

I'm not comparing Autism to ADD as diseases. I am comparing the "epidemic" of Autism to the "epidemic" of ADD.

You MUST agree that every child that was diagnosed with ADD during the height of ADD awareness didn't have ADD.

And what I am (and I think some other posters are) saying is that the statement also holds true for Autism.

It is not, nor will it ever hold true for Autism. If a child is diagnosed as autistic or on the spectrum, it is not based solely on behaviors. It is also based on variable learning/communication/social/language/physical disabilities. Some of those on the spectrum will outgrow some (not all) behavioral aspects of the disease, but the other varying disablities will remain to some degree for the rest of their lives.

 

[JESW]

I am the mother of a ds13 with asperger's, married to a guy with asperger's, and (most likely) the dil of a man with asperger's - come live my life for a while!

Years of school issues - IEP's, pull-outs, one-on-one aides, etc.

Psychiatrist visits, medication trials, psychologists visits, neurological testing (HOURS of it), brain scan, bio-feedback, etc.

Where we are now is that my son is in a school with other kids like him. (We were afraid for his mental health in the public school system). He is with people who know and understand the quirks of these kids - how triangle pizza really does taste different than square pizza - how tags on shirts, seams on socks or a tight collar can send these kids off into a meltdown.

My son is also diagnosed with auditory processing issues so the way they teach in the public school doesn't always work for him.

My son has an above average IQ but doesn't know how to tie his shoes. He can tell you the make & model of most cars by sight but can't recite his times tables.

The program he is in now incorporates pt, ot, counseling and many other things into a normal day. The classes go on "field trips" so the kids can learn social issues. Getting my son to pay for something at a store is a MAJOR issue.

Helping my son NOW will make a major difference in his future. He *will* be an productive member of society. At 9 years old (pre-diagnose and all the help) he wanted to die.

We go to Disney often as that is what works for our family - we have been going since ds was under 2 years of age. It is a familiar place to him. We have tried other places but they were disasterous. Pin trading has been a great way for my son to work on his social skills.

My son has been in his new program since 3/07 and it has made a WORLD of difference to/for him and the family. Life is far from perfect, but much better than years ago.

I understand that if you are just viewing things from the outside that many of these kids *do* just look like brats. But until you are living with it then you just don't know. I would LOVE it if my son woke up tomorrow and was "normal" and didn't have to go to a different school. I see the bus he would be riding go down our street every school day and I wish he was on it instead of the van that picks him up. But that is not our life. My son has FRIENDS now...something that was too hard for him to do in public school. He gets phone calls and has friends come over - wow!!

I could go on and on...threads like this always bother me when all of us "special ed" families get lumped together.

Jill

 

[ERMama]

We recently had the "ADD vs. autism" debate on our local moms board. And you know what, no matter what label your special needs child has, the parents still experience alot of the same things. Many of the behaviors that are so difficult to deal with are the same regardless of diagnosis.
Theres also wide ranges of behaviors within each diagnosis.
Its not a my kid is "worse" than your kid debate. I just think parents of any special needs children need to be supportive of each other no matter what diagnosis their child has.

 

[Kath2003]

And there was me thinking that all children are difficult to raise. Sure there are conditions which make it more difficult, but it's hardly like any parent has it 'easy'. All children have their issues; the difference is the severity.

 

[golfgal]

I want to make sure I understand...do you agree with Todd and Copper about parents going "shopping" for a diagnosis of autism? Or is there a different point you agree on? Our youngest, Zoe had to wait 3 mths to get into UVA Children's Hospital to be assessed by a team of developmental pediatricians. This was after her regular pediatrician referred us for a cognitive assessment there.

Do you truly have parents who are asking you to diagnose autism where it doesn't exist? I can't even wrap my mind around this. I argued with the doctors at UVA as to why I thought Zoe DIDN"T have autism. It's been such a painful diagnosis, I can't imagine anyone seeking it out. It's been a year since she was diagnosed and my hands are shaking as I'm typing. It was that traumatic.

Just wait until your child is older. You will run across this more and more. There are parents out there that do look for something to blame their child's failures or whatever on because it certainly can't be THEIR fault if their child isn't perfect. It is really sad.

It is not, nor will it ever hold true for Autism. If a child is diagnosed as autistic or on the spectrum, it is not based solely on behaviors. It is also based on variable learning/communication/social/language/physical disabilities. Some of those on the spectrum will outgrow some (not all) behavioral aspects of the disease, but the other varying disablities will remain to some degree for the rest of their lives.

Well ADD and ADHD are supposed to be chemical imbalances that cause processing disorders for people too. That doesn't stop people from getting diagnosed with those disorders based on behavior.

I think that might be the key to this argument too. When a child can't behave there has to be 'something' wrong with him/her so the schools or parents just keep trying to find something to diagnose them with. If the first one isn't it, the second one might be.

If you watch a child that REALLY has ADHD and how they try to do a worksheet, it makes you dizzy watching their eyes dart around the page trying to get it done. It isn't about the behavior, it is how they process information--the behavior can be a side effect of that.

 

[shortbun]

And there was me thinking that all children are difficult to raise. Sure there are conditions which make it more difficult, but it's hardly like any parent has it 'easy'. All children have their issues; the difference is the severity.

I have it easy. I am grateful. There is a world of difference in a child with no developmental/brain disorders and a child who has them or chemical imbalance or is otherwise handicapped. I recognize the differences very easily. I really don't understand why others do not.

 

[Deb in IA]

I want to make sure I understand...do you agree with Todd and Copper about parents going "shopping" for a diagnosis of autism? Or is there a different point you agree on?

This is what I was referring to:

I know I am going to get flamed for this but it seems like people are far more comfotrable saying they have an illness or a disorder than admitting they are just quirky and unwilling to conform to society's rule/conventions. Obviously there are real autistic children, but I have a feeling that a lot of kids who are identified as "on the spectrum" would have just been a little weird or quirky 20 - 30 years ago.

I certainly know people who I went to school with that were - different. Weird. Quirky. Back then, we just accepted them. Looking back now, I'm sure some of them were PDD or Asperger's, but they certainly had no official diagnosis at that time.

And yes, I have had parents who wanted the autism label, so that they could get respite services, special education, etc. Let me tell you, I have been doing this a long time, and you would not believe some of the parents I have run across . . . I could tell you stories, but I would be violating HIPPA . . .

 

[golfgal]

This is what I was referring to:




I certainly know people who I went to school with that were - different. Weird. Quirky. Back then, we just accepted them. Looking back now, I'm sure some of them were PDD or Asperger's, but they certainly had no official diagnosis at that time.

And yes, I have had parents who wanted the autism label, so that they could get respite services, special education, etc. Let me tell you, I have been doing this a long time, and you would not believe some of the parents I have run across . . . I could tell you stories, but I would be violating HIPPA . . .

Not if you didn't name names


I can tell you stories because I don't do testing and I am not bound by HIPPA laws .

How about one family that just couldn't figure out why their child couldn't function in school. They took her to 5 separate dr's to get her diagnosed. Finally found one that gave her an ADD diagnosis and a prescription. The parents were so happy because that was what was wrong with her. Then she magically was 'cured' of her ADD when they started making her go to bed by 10:00 instead of MIDNIGHT on school nights because she was getting 'crabby' at dinnertime. Oh, this was when she was in 3rd grade too. She is now going into 11th grade and is 'cured'.

 

[jack hannah bananah]

Jack
The problem is - this is his response to the controversy. You might want to Google what he actually said - it was mean and evil and the kind of speech that only inflames the issue.

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.

 

[TheZue]

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.

 

[talulabelle]

I agree to an extent. There is no acceptance for children who simply don't 'get' social rules - and yet it's one of the most difficult concepts a child must master! If a child didn't 'get' math, they probably would just be said to have difficulty mastering math, or possibly a special educational need in a severe case. If a child doesn't always 'get' how to interact with their peers (which is a far more difficult cognitive concept than math), they're often hauled off and said to be "on the spectrum".

I suppose it has a lot to do with our society's predisposition with achieving socially. Those who do not achieve at math are still accepted, because they still achieve socially. Those who do not achieve socially are seen as 'disabled' because of the importance we place upon social interaction. I suspect many parents - however many would admit it - would be able to cope with their child's difficulties in math, but would feel badly about their difficulties in social interaction - blame themselves, wonder what they did wrong etc.

I know a few kids that don't "get the social rules". I thought one of them had aspergers or slight autism. Then , after I was around him and his family longer, I just realized that his parents never say no to him. He is a whacked out freak because of it. Honestly to meet him, you would think he had a disorder. So, I sort of see where Savage was coming from (although, he was exaggerating and obtuse in his comments)

Of course there are the kids who truly have the disorder...but I'll bet more that 2% of diagnosed cases are truly kids with over -indulging and/or crazy parents.

 

[Cool-Beans]

Autism is the "cool" thing to have now. Well, not actual autism, but getting your kid labeled as "on the spectrum" is the "in" thing.

I actually prefer "on the spectrum" to its predecessor "ADD" and "ADHD."

The people who think their kids are "on the spectrum" are far less likely to drug their kids than the old "ADD" crowd was. I don't like having so many kids on drugs. It just rubs me the wrong way.

While my heart breaks for all the folks whose children actually are autistic (and my nephew is - really autistic, completely in his own strange world), I do not understand all the folks who seek out labels for kids with whom there is absolutely nothing wrong. But, whatever floats their boat.

 

[Sinderelli]

Autism is the "cool" thing to have now. Well, not actual autism, but getting your kid labeled as "on the spectrum" is the "in" thing.

I actually prefer "on the spectrum" to its predecessor "ADD" and "ADHD."

The people who think their kids are "on the spectrum" are far less likely to drug their kids than the old "ADD" crowd was. I don't like having so many kids on drugs. It just rubs me the wrong way.
While my heart breaks for all the folks whose children actually are autistic (and my nephew is - really autistic, completely in his own strange world), I do not understand all the folks who seek out labels for kids with whom there is absolutely nothing wrong. But, whatever floats their boat.

Coming from a parent who debated for YEARS before placing my son on meds for ADHD, this is an incredibly insensitive remark.

 

[Stella3]

Coming from a parent who debated for YEARS before placing my son on meds for ADHD, this is an incredibly insensitive remark.

Why? Was she talking about your kid - I think not.

I have seen many kids put on ADD, ADHD drugs just because the parents "thought" they needed them. Yes, with enough prodding and insistence that "little Joe or Betty Sue" just won't sit still, and won't pay attention -some doctors will write a prescription for drugs. I have seen it too many times.

I don't give a flying fig what drugs you (generic you) give your kids, but I wouldn't want those drugs in my kid's system. I don't know what the long term effects might be.

 

[JenM]

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.

I'm sorry, there is absolutely no acceptable excuse for what he said and the way he said it. If he needs to pull stunts like this to bring himself attention, then maybe he needs to re-evaluate the way he expresses himself. If he was any sort of an adult he would actually learn to speak like one.

The question whether or not autism is being diagnosed too easily is a valid argument, and the point can be made without resorting to calling 99% of them "brats who need to cut the act out."

And the idea that he thinks that by saying this more people are listening to him is inane. Everyone I know who's heard about this not only won't waste another second listening to another word he says, we were all wondering why he's so popular and who are these fools who listen to his bile?

Seriously, I would rather listen to static than listen to Michael Savage toss schoolyard insults in an attempt to make a point. The only thing he's proven so far is that he's a loudmouth idiot.

 

[breezy1077]

Autism is the "cool" thing to have now. Well, not actual autism, but getting your kid labeled as "on the spectrum" is the "in" thing.

I actually prefer "on the spectrum" to its predecessor "ADD" and "ADHD."
.

---> 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.