Is autism the illness du jour ?

[summerrluvv]

I'm not even sure who this guy is, but I think what he said was out of line.
I don't think any parent *wants* their child to be labeled as having Autism and I don't think medical professionals will just throw that diagnosis at someone who doesn't fit the criteria.

Although we have no official diagnosis as of yet (finally going next month for an eval), my son has a lot of the characteristic behaviors of someone with Autism (hand flapping, spinning, rocking, social impairment, speech delay, etc.), but he is not a "brat." He's the most mild mannered nice boy you could meet! Just thought I would throw that in

 

[dejr_8]

No I cannot accept that people think that tests are not required or necessary before a Doctor makes a diagnosis.

How do you think the medical world should work here?

If you went to the Doctor with a pain in your side would you want him to just take an educated guess at what it may be from or would you prefer he run some tests to find out definitely what it is?? I don't know about you - but I want tests.

No but if I watch a child (or an adult for that matter) for 20 hours and "look" for signs of disease with as many manifestations as Autism, I bet every subject would exhibit some of the signs. If at the same time the Parent is "pushing" for something to be "wrong" I'm betting that the child gets the Autism diagnosis.

 

[KirstenB]

Normally, I would not reply to this thread because it absolutely makes my blood BOIL because I am sick and tired of the OPEN SEASON on autism. I am not directing this at the OP, but just in general, especially after the American Airlines incident. I did not hear the IGNORANT comments made by Michael Savage, but I do know that many autism groups and concerned parents have sent in letters of complaint. I live in the State of Illinois and I don't know where some of the posters live that have indicated that parents WANT their child to be diagnosed, but I haven't met ONE not ONE parent who would want that diagnosis. Why would you want a diagnosis? so that the insurance company can deny coverage for speech, occupational therapy, developmental therapy (NOT covered in the state of Illinois), physical therapy as my insurance company likes to do? Or, would you want a diagnosis so that you can fight with school systems just to get your child services or 30 extra minutes of speech per week? Or better yet, get a diagnosis so that you can try to get Early Intervention services through your state which end at age 3. Some parents can't even get into an early intervention program because the wait list is so long. I know, it must be money! The cost for out of pocket therapy is anywhere from $10,000 to over $100,000 per year usually straight out of the parents pockets and NOT COVERED BY INSURANCE.

On the flip side, I know MANY parents who don't want a diagnosis because that means that their child will be labeled with autism. Yes, the diagnosis rate was 1 in 10,000 children back in 1994 and the rates have skyrockted to 1 in 166. Why the rise in autism? One reason is that the austim spectrum includes more criteria and varying degrees. The debate about the cause will go on, but something is going on! Is it mercury in vaccines, is it genetic with an environmental trigger? Is it something in the environment - maybe?

I have a child with autism. He was diagnosed by a pediatric neurosurgeon (some people have a team with neurosurgeons and a hold host of speech therapist, psychologists, etc.) based upon a number of factors. Children with autism usually have significant language delays (unless it's aspergers; also note that 40% of children with autism are non verbal), difficulty relating to people/peers, sensory disorders, repetative behaviors (hand flapping, lining up objects in a straight line over and over and over, etc.), echolalia (repeating the same phrase over and over and over), scripting (talking, but not in a conversational way, just quoting lines from a commerical or movie). I have done Autism walks, gone to countless conferences and I have YET to meet one child with a diagnosis that didn't fit the criteria. And let me also add that autism doesn't affect two children the same. If I waited for the medical profession to devise a "test", my son would not be diagnosed and would not have made the progress that he has through early intervention and TONS of theraphy and he still has a LONG way to go. If I see a child hand flapping or toe walking I automatically think autism and I am NOT a medical professional.

If you point to the medical profession, I will answer that pediatricans have failed many parents (I feel as if I had the only pediatrican who actually told me that she thought my son had autism), told them that they were crazy when parents told them that they felt that their children were losing skills, told them that boys not speaking by age 2 was no big deal, they would come in later. When autism groups have come up with a list of warning signs, the American Academy of Pediatrics is quick to criticize, but they offered O in the way of solutions, resources, etc.

Uninformed and ignorant people like Michael Savage don't know what they are talking about and just run their mouth in order to make money. He couldn't and wouldn't survive one week of my day to day life dealing with this condition.

If people want to learn more about autism, stop listening to idiots like Michael Savage and visit some autism web sites. Here are a few, just to get started.

Austism Speaks (They have a host of videos of children with autism for all of the naysayers)
http://www.autismspeaks.org/

Floortime
http://www.floortime.org/

RDI
http://www.rdiconnect.com/

TACA
http://www.talkaboutcuringautism.org/index.htm

If you have a child that is neurotypical, then considered yourself very lucky.

If you haven't walked in the shoes of a parent that just wants to hear their child say "Mommy" or "Daddy" or dream that one day their child gets an invitation to a birthday party, or a child knocks on their door wanting their kid to play with them or have had to endure some judgemental angry stare from strangers when their child has a meltdown, or still isn't potty trained then don't assume anything. If you haven't driven your child to therapy after therapy, fought HARD for services in school, sat down at yet another IEP meeting to get your child therapy then don't be too quick to think any parent WANTS that for their child.

Clearly, the autism community as a whole needs to have more information out there in order to clear up all of the misconceptions about what autism is, treatment, etc.

My rant is done.

Regarding people who want an autism dx: Where we live there isn't any respite care for autism (or at least none I'm aware of). We're very grateful Zoe will go to special ed preschool fulltime, and we're hoping to see some big gains there. Obviously we wish like heck she didn't qualify for it in the first place. Maybe there are areas of the country where people can get a diagnosis and get away with some benefits, but not here. Our experience has been like Mel Anderson's: we get to pay out lots of cash for therapy because our insurance routinely denies even speech therapy. Zoe does get speech through EI, but they have a sliding income fee scale, so whatever insurance denies, our family picks up somewhere around 35% of the hourly rate.

 

[dejr_8]

Yes, the diagnosis rate was 1 in 10,000 children back in 1994 and the rates have skyrockted to 1 in 166.

So you are telling me that in 1994 there were 59 kids per 10,000 that had Autism but weren't diagnosed.

How did those kids survive?

This statistic alone is enough to show that there is a problem with inappropriate diagnosis.

 

[freckles and boo]

No but if I watch a child (or an adult for that matter) for 20 hours and "look" for signs of disease with as many manifestations as Autism, I bet every subject would exhibit some of the signs. If at the same time the Parent is "pushing" for something to be "wrong" I'm betting that the child gets the Autism diagnosis.

You might find signs of cancer, malaria, and athlete's foot if you look long enough, too. Fortunately there are actual criteria involved.

The following is from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM IV):
DIAGNOSTIC CRITERIA FOR 299.00 AUTISTIC DISORDER
A. A total of six (or more) items from (1), (2), and (3), with at
least two from (1), and one each from (2) and (3)
(1) qualitative impairment in social interaction, as manifested by at least two of the following:

a) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction

b) failure to develop peer relationships appropriate to
developmental level

c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing,
bringing, or pointing out objects of interest to other people)

d) lack of social or emotional reciprocity ( note: in the
description, it gives the following as examples: not actively
participating in simple social play or games, preferring solitary
activities, or involving others in activities only as tools or
"mechanical" aids )

(2) qualitative impairments in communication as manifested by at least one of the following:

a) delay in, or total lack of, the development of spoken language
(not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)

b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

c) stereotyped and repetitive use of language or idiosyncratic
language

d) lack of varied, spontaneous make-believe play or social
imitative play appropriate to developmental level

(3) restricted repetitive and stereotyped patterns of behavior,
interests and activities, as manifested by at least two of the
following:

a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in
intensity or focus

b) apparently inflexible adherence to specific, nonfunctional
routines or rituals

c) stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole body movements)

d) persistent preoccupation with parts of objects

B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:

(1) social interaction

(2) language as used in social communication

(3) symbolic or imaginative play

C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder

 

[sjaakie]

So you are telling me that in 1994 there were 59 kids per 10,000 that had Autism but weren't diagnosed.

How did those kids survive?

This statistic alone is enough to show that there is a problem with inappropriate diagnosis.

And maybe more important ,what future lies ahead when one out of 166 people is autistic?
How could a country build a stable society when so many people are not able to function ore work for there daily bread?

 

[KirstenB]

So you are telling me that in 1994 there were 59 kids per 10,000 that had Autism but weren't diagnosed.

How did those kids survive?

This statistic alone is enough to show that there is a problem with inappropriate diagnosis.

I'm betting many of these kids were dx'd with mental retardation. Until recently, IQ tests didn't account for non-verbal participants. With better IQ tests, you can gauge true cognitive ability much more clearly.

 

[MerryPoppins]

I can't believe what Michael Savage said. How sad that people would believe such a warped view of the world. I hope people boycott his show and his advertisers. That's all you can do...he has the right to say whatever he pleases. I'll just take my business elsewhere.

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

This was already answered, but I had something to add. My kids both have SPD. It's vastly different from Autism, but many autistic kids do have SPD issues. Some SPD kids do appear to be daydreamers. They are sensitive to sensory information and their brains sometimes sort of check out when the circuit overloads. This is different from choosing to daydream. My DD doesn't realize when she does it. She isn't thinking about the beach or her favorite book. Her brain just sort of takes a break and she blacks out for a few minutes...unaware of what is happening around her. Another common reaction is for the child to lash out when overloaded. We don't have that issue. Just the quiet, checked out one.

I am afraid not that the kids are "brats' or the parents are lazy, but that kids are being misdiagnosed with similar or overlapping conditions, and because of the misdiagnosis, are not getting the proper treatment... i know ADD and autism therapy would not help me, but knowing I was SID was a BIG help. however, right now drs are learning about autism, it is what they are trained to see, so that is what they look for, and i think that makes them miss some similar or overlapping conditions

I do agree with this. Many doctors, in my experience, have not heard of SPD (or as it used to be called SID). I think a lot of the reason that doctors are unfamiliar is that it's not something that's easy to spot. There are many reactions a child can have. They can crave sensory information and/or shy away from it. Each case is very different. Also, there is no easy fix. No magic medicine to make it all better. I do know that it's very real. I've seen amazing results with my own kids.

My DD is 17, very bright, makes good grades, but struggles with life. She was diagnosed by an Educational Psychologist when she was in 1st grade. She made a lot of progress and then in the last couple of years she had a setback. Our OT says this sometimes happens as these kids grow. It may be due to hormonal changes or something? DD does her homework, but can't remember to turn it in. Her OT says that her brain doesn't follow through. It says she's done with the project when it's finished and doesn't remember that it doesn't count unless it's turned in. She can't go to dances because the music is too loud and too disconcerting. She has to really psych herself up to go to a football game because of the noise, the smells and the confusion. She often has trouble concentrating in class because of the lack of movement she needs to attend, the noises, the hum of lights, the temperature, etc. She even has trouble with tags and seams in her clothing...they have to be just so or she can't concentrate. I could go on and on with examples. And yet all of these things are invisible to those around her. She looks like a normal kid, that keeps to herself, daydreams a bit, forgets to turn in work and doesn't like big, social activities much. She has to work much harder than her peers to stay on task and do simple things.

I'd give anything if she didn't have these issues. They make her angry with herself. She gets so frustrated when she forgets things and it makes her depressed. No way would I wish for this. But I'm thrilled it has a name and someone can help us make progress. And yet, I know how lucky we are. Things could be much worse.

 

[mickeysgal]

Trying to keep up here...what is SPD and/or SID?

 

[wide awake]

Absolutely unbelievable. That Michael Savage would spew his garbage, and that people would listen and agree. I can now see how the witchcraft trials at Salem found victims. Ignorance is alive and well in America.

 

[MerryPoppins]

Trying to keep up here...what is SPD and/or SID?

Sensory Processing Disorder which used to be called Sensory Integration Dysfunction

 

[freckles and boo]

Sensory Processing Disorder which used to be called Sensory Integration Dysfunction

The reason this is relevent is because almost all autistic people have sensory issues, too.

 

[Diswhiz]

Don't know why you all keep beating your heads against the wall. Everything you read in the latest research indicates autism is simply a case of BAD GENES. No one wants to admit that THEY are responsible for developing an inferior child.

 

[freckles and boo]

Don't know why you all keep beating your heads against the wall. Everything you read in the latest research indicates autism is simply a case of BAD GENES. No one wants to admit that THEY are responsible for developing an inferior child.

Nice second post. Anything else to add?

 

[Diswhiz]

Nice second post. Anything else to add?

Actually yes. I want to hear (sure others do too) about the stupid things your DH does wearing sandals.

 

[freckles and boo]

Actually yes. I want to hear (sure others do too) about the stupid things your DH does wearing sandals.

Chopping firewood comes to mind. He only did it once, but it was damn stupid.

 

[TheZue]

Don't know why you all keep beating your heads against the wall. Everything you read in the latest research indicates autism is simply a case of BAD GENES. No one wants to admit that THEY are responsible for developing an inferior child.

I just want to point out my autistic kid is in no way inferior. He's way smarter than me or my husband who are far from stupid. He's just got a lot of challenges to overcome and hopefully he'll be able to put it to good use. Seeing the world differently and needing more help doesn't make you inferior.

 

[golfgal]

You might find signs of cancer, malaria, and athlete's foot if you look long enough, too. Fortunately there are actual criteria involved.

The following is from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM IV):
DIAGNOSTIC CRITERIA FOR 299.00 AUTISTIC DISORDER
A. A total of six (or more) items from (1), (2), and (3), with at
least two from (1), and one each from (2) and (3)
(1) qualitative impairment in social interaction, as manifested by at least two of the following:

a) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction

b) failure to develop peer relationships appropriate to
developmental level

c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing,
bringing, or pointing out objects of interest to other people)

d) lack of social or emotional reciprocity ( note: in the
description, it gives the following as examples: not actively
participating in simple social play or games, preferring solitary
activities, or involving others in activities only as tools or
"mechanical" aids )

(2) qualitative impairments in communication as manifested by at least one of the following:

a) delay in, or total lack of, the development of spoken language
(not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)

b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

c) stereotyped and repetitive use of language or idiosyncratic
language

d) lack of varied, spontaneous make-believe play or social
imitative play appropriate to developmental level

(3) restricted repetitive and stereotyped patterns of behavior,
interests and activities, as manifested by at least two of the
following:

a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in
intensity or focus

b) apparently inflexible adherence to specific, nonfunctional
routines or rituals

c) stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole body movements)

d) persistent preoccupation with parts of objects

B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:

(1) social interaction

(2) language as used in social communication

(3) symbolic or imaginative play

C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder

Since autism is a 'spectrum' I bet there are PLENTY of people out here that can pick out 6 things on this list that their child is/does/has and this is where you run into problems. According to this list I could label our oldest as being on the autism spectrum. Is he autistic, no, but I could probably make a case for it with the 'right' doctor. I can pick out 9 things that I could attribute to autism that are really in our case a lazy 16 year old boy who thinks he knows everything .

 

[Diswhiz]

I just want to point out my autistic kid is in no way inferior. He's way smarter than me or my husband who are far from stupid. He's just got a lot of challenges to overcome and hopefully he'll be able to put it to good use. Seeing the world differently and needing more help doesn't make you inferior.

Know something - I like the way you put that. Austitic children are "challenged" children.

 

[sdarwkcabemanmy]

If you haven't walked in the shoes of a parent that just wants to hear their child say "Mommy" or "Daddy" or dream that one day their child gets an invitation to a birthday party, or a child knocks on their door wanting their kid to play with them or have had to endure some judgemental angry stare from strangers when their child has a meltdown, or still isn't potty trained then don't assume anything. If you haven't driven your child to therapy after therapy, fought HARD for services in school, sat down at yet another IEP meeting to get your child therapy then don't be too quick to think any parent WANTS that for their child.

AFREAKINGMEN!

DS didn't start really talking until he was nearly 2. I waited FOREVER to hear him say "mama" and "dada"..didn't ever think he'd say those words. He also did some pretty weird things as a toddler--like rubbing his face on the carpet or the wall (which is textured).
He started recieving services from the state at around his 2nd birthday and it continued until his 3rd birthday. I was AMAZED at the leaps and bounds he made in that one year, how he went from being pretty much nonverbal to having a vocab of about 100 or so words. Then when we enrolled him in Sp. Ed. preschool last year, he again grew by leaps and bounds. His vocab went from about 150 or so words to god knows how many. Now he tells stories, wants, needs, asks eleventyzillion questions and is starting to finally make some friends. He still has hurdles to cross (such as his constant need/desire to mouth objects whether they are appropriate to chew on or not) but I believe that one day he WILL get there. We just have to keep working and fighting for him because he deserves to be like everyone else. I never knew how hard it was to be the parent of a special needs child until I had a special needs child.