[Spidey's mom]

Originally Posted by rph3664

MTP, I can't think of anything off immediately that portrays autism as wonderful, but trust me, if I do I will post it. Like I said earlier, the link I first saw to that Salon.com article said, "Here is a story about autism that will never be in the mainstream press because it isn't all warm and fuzzy."

I heard about "Autism: The Musical." Don't think I want to see it either.

Okay, what about the media's portrayal of breast cancer? Gosh, sometimes it seems that you can't be a real woman unless you have had it. "Nickel and Dimed" author Barbara Ehrenreich addressed this in a recent interview; she is a BCS and when she was diagnosed, she was given what was basically a souvenir catalogue, and she thought the "Breast Cancer Bear" was pretty much the most demeaning thing she had ever seen. My mother is herself a BCS and while she didn't need chemo or radiation, there is NOTHING fashionable about it.

Ever seen a disease referred to as "popular"? I have, and that's where I'm coming from.

I've definitely seen that in reference to breast cancer. Good point.



steph

[janfrn]

Originally Posted by mercyteapot

You do what you have to do to get your child what they need, whether you agree with the rationale used to qualify your child for those services or not.

Ain't that the truth! When we were getting things in order for the transition from children's services to adult's for our son 8 years ago, one of the pieces of the puzzle was a neuropsych assessment. So the neuropsychologist interviewed me to get an idea of his level of function. Then she went to his school to assess him. She did the assessment in a room he'd never been in before, full of things to look at and new noises and smells. She didn't meet him before hand, and she didn't observe him in the clasroom or at home. So when the final document arrived, I was not surprised to read that he functioned about as well as a 2 year old... which was so far off the mark as to be a joke. But I realized that this little lie was going to mean I'd never have to fight for services for him ever again. (And that was true... until we moved to another province and have had to prove everything again... every year. But that's another story.)

[SoundofMusic]

I've been watching Jenny with much interest as I have a son with PDD-OS or high functioning autism. I am also a new grad RN.

We put our son on the diet, gave him tons of supplements, and did ABA therapy. We've also done some RDI therapy. He went from hardly verbal to now needing very little assistance in a general ed classroom. We continue to use digestive enzymes to break down the gluten and casein. People now have a hard time recognizing he has any disability at all.

He had several intestinal issues before the diet. He was constipated all the time. Now he has beautiful stools (sorry, autism moms talk poop a lot).

You can't blame parents for trying . . . sorry, but pediatricians have little to offer at this point, and if we didn't try something, we were going to die from lack of sleep and just continual stress from his awful behaviors. Peds would usually look at me like I was crazy ... and they dragged their feet on a diagnosis for him to begin with. for 2 years!

He used to bolt out the door and down the street . .now he sticks right by me. He could actually start sitting still for his therapies after the diet.

Seems to me many skeptics out there, docs included, should not discount the reports on the diet. There's a reason it works for some children.. .and should be encouraged as a trial, IMO.

There is also a Dr. Yasko who many parents like to follow. She's a bit out there, but was written up in Discover Magazine lately (April 2007). We have done her protocol with much more improvement as of late.

Expensive? Yes -- but worth it to see your child improve.

I truly feel there is an environmental cause for autism. . .has to be. That could include vaccines, or not, but it's there. I believe there is a genetic predisposition and there is something causing certain kids not to tolerate specific environmental assaults. Go ahead and flame me, but I "live it" everyday. We used to give 11 or so vaccines before the age of 2 ...now we have, what, 22+ vaccines, and more coming down the pike all the time.... really makes ME wonder.

[mercyteapot]

Originally Posted by SoundofMusic

I truly feel there is an environmental cause for autism. . .has to be. That could include vaccines, or not, but it's there. I believe there is a genetic predisposition and there is something causing certain kids not to tolerate specific environmental assaults. Go ahead and flame me, but I "live it" everyday. We used to give 11 or so vaccines before the age of 2 ...now we have, what, 22+ vaccines, and more coming down the pike all the time.... really makes ME wonder.

Genetics loads the gun and environment pulls the trigger.

[rph3664]

JMHO to Soundofmusic: I believe that most high functioning autistic people were not recognized as such until very recently. Not so long ago, parents of a child like yours would have tried to punish those behaviors out of the child and loaded them up with laxatives and enemas.

A woman I worked with a few years ago (I worked in a grocery store in the pharmacy, which was next to the floral department where she was department manager) said that when she was a child, she had a teacher who would smack her across the face for not making eye contact. Can you imagine doing that nowadays?

I have heard a lot of stories about adults of all ages seeing themselves in a diagnosed related child, and being evaluated and yes, they are on the spectrum. If I already said that on this thread, I apologize for repeating myself.

[SoundofMusic]

Rph, I know what you're saying, but I can't buy into the belief that we're just now diagnosing it better. Believe me, you WOULD HAVE NOTICED a child like mine, back then. Discpline does not end the behaviors . ..it only worsens them. He has or had, marked constipation, vitamin and immune defieciences, many tantrums, escaping behaviiors, and a severe speech and language delay. He's not just "weird" as many people think autistic people are.

I don't believe there are all that many high functioning autistic adults out there now. Where are they? Autism just doesn't go away . .we'd know it and they'd be everywhere if the rates were the same back then that they are now.

[rph3664]

Originally Posted by SoundofMusic

Rph, I know what you're saying, but I can't buy into the belief that we're just now diagnosing it better. Believe me, you WOULD HAVE NOTICED a child like mine, back then. Discpline does not end the behaviors . ..it only worsens them. He has or had, marked constipation, vitamin and immune defieciences, many tantrums, escaping behaviiors, and a severe speech and language delay. He's not just "weird" as many people think autistic people are.

I don't believe there are all that many high functioning autistic adults out there now. Where are they? Autism just doesn't go away . .we'd know it and they'd be everywhere if the rates were the same back then that they are now.

He would probably have been considered mentally retarded. JMHO. I would also not consider someone like your son to be high functioning before treatment. To me, "high functioning" is someone who can go to regular school WITHOUT aggressive intervention. THOSE are the people I grew up with, and the people I have known as an adult who could best have been described as "peculiar." One of my junior high friends has a son who was believed to have ADD until he was diagnosed with Asperger Syndrome at age 13. THIS is what I mean by high functioning.

Edit: There's a woman I converse with a lot on another site whose daughter's unusual behaviors were written off as the effects of having a severely handicapped sibling, but at age 14 she too finally got an AS diagnosis.

Across the street from that junior high was a residential care facility for the "emotionally disturbed child." Many of them were rejects from the foster care system (reactive attachment disorder, maybe?) but I'll never forget one girl who did go to school with us who I'm sure was on the spectrum. She also was mildly mentally retarded, which certainly complicated things.

From what I have heard, the highest functioning people often improve markedly at adolescence, and there's a simple explanation: it's nature's way of enabling them to reproduce.

I personally know two people who have autistic family members. One is a son who is now over 60 years old (yes, she's pushing 90) and the other is a brother who would now be about 50. The 60-year-old has the "classic" autism where the child appears to be normal until age 2 1/2, almost to the day, and then over a period of just days, he regressed and has not responded to any therapy. He lives in a care facility. The 50-year-old has a normal IQ (or possibly higher) but his sister says he's like "Rain Man." He cannot organize his knowledge in any useful way, and the last I heard was living with their aged parents and working in a sheltered workshop.

I have a book titled "Jan, My Brain Damaged Daughter" which was published in 1963. When I got Internet access, I was delighted to learn that the author, her psychiatrist mother, was still alive well into her 90s and wrote to her. The author's niece replied, and said in her letter, "Until a few years ago, [the author] would not admit that Jan was autistic but the people who work with her generally agree that she is." Bowel problems, seizures, social difficulties, hyperlexia - it all fit together. Jan is in her 60s now and her mother has since died. They had an extremely supportive extended family, and her father, who died shortly before the book's publication was very involved with her care, even by today's "father standards."

Plus, it wasn't so many years ago that having a child who was "different" in any way was considered a disgrace, and families were stigmatized for this.

[rph3664]

Originally Posted by SoundofMusic

I don't believe there are all that many high functioning autistic adults out there now. Where are they? Autism just doesn't go away . .we'd know it and they'd be everywhere if the rates were the same back then that they are now.

A member of the housekeeping staff where I work was hit by a car after work on Monday, and died the following morning. She had worked there for over 40 years, and she was the type of person that if you didn't like her, there was something wrong with you.

A lot of us believed she was on the autistic spectrum because she never really looked at people and often didn't follow conversations. She had still managed to have stable employment, and had even married and had a son.

One of my pharmacy school professors, now retired, never looked at people either. When you spoke to him, he would look off in the distance, over your head, in another direction. To our knowledge, he never married and the fact that he lived with his mother caused a lot of snickers until I pointed out that she was probably quite elderly (he was in his 50s at the time and would now be around 70) and needed to be looked after.

I have also heard from other people who have worked in special education and handicapped services for many years that the number of people diagnosed with mental retardation has decreased at the same rate that the autism diagnoses have increased. Once again, we have to address the embarrassment parents felt not so many years ago at having a "different" child and the denial, etc. that resulted. Good grief, I grew up with a girl whose sister was partially deaf and blind from prenatal rubella exposure and there were families who wouldn't let their kids play with her because of this.

[mercyteapot]

I'm going to respond to a couple of posts with one message. rph, here in CA, our rate of MR (now called "intellectual disability) has not declined in proportion to the rise in autism cases. I do agree that many adults with autism were probably either dxed with MR or schizophrenia when they were young, or just considered weird.

As for the dx of high functioning autism. That term makes me crazy. It means nothing. Some people use it to mean a person with Asperger's and a very high IQ, even if that person has such anxiety and social issues that they barely function. IMHO, my son who has a borderline IQ but has strong (relatively speaking) social skills is much higher functioning. He has a much easier time getting by in the world. Then there are all the people who either use the term themselves or have been told by a doctor that their child is "high functioning" and you look at the kid and wonder what in God's name they would consider to be lower functioning. I know a woman whose 7 year old daughter is non-verbal and non-potty trained and she was told her daughter is high functioning! Huh? I understand that autism is a spectrum disorder, but I think the professionals oversimplify things when they explain that to a parent of a newly dxed kid. My son would fall very low on the spectrum on certain tasks and yet, like I said, on a daily functioning level, has a fairly easy time of it. As opposed to a kid I know who is a genius, but only weighs 90 lbs because he can't stand the texture of most foods, has very few friends because surprisingly few people like to talk about what day of the week their birthday fell on in 1970 and whose mother has bought every single National Geographic video she can find because they are all this kid watches and oh yeah, he doesn't "like" DVDs, so she also has bought spare VCRs.

[rph3664]

Originally Posted by mercyteapot

Then there are all the people who either use the term themselves or have been told by a doctor that their child is "high functioning" and you look at the kid and wonder what in God's name they would consider to be lower functioning. I know a woman whose 7 year old daughter is non-verbal and non-potty trained and she was told her daughter is high functioning! Huh?

I wouldn't consider someone like that to be high functioning either.