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Autism: You Might Outgrow It. Or Die Before Your Time.

Happy pillsBy Kim Stagliano Blue Coffin - Cut-480

This has been quite a week for news in autism. For starters, David Kirby reported that there are at least two new cases in Vaccine Court whereby there have been awards for vaccine injury in children with autism. The silence from the MSM was deafening - as expected.  After all, they were very busy getting flu shots live on air.  Then there was the IOM report on vaccine safety that got some attention although the  media has been focused primarily on the gun safety issue - shots of another kind as it were.   Oh yes, there has also been hoopla about Miss Montana, a beautiful young woman who was diagnosed with autism at age 11 and is an example of having a wonderful life with a form of autism that frankly I can't imagine in my household - although my three girls are certainly beautiful - especially my 18 year old for whom we just filed guardianship papers.


Oh! And did you hear some kids "outgrow" their autism. Yuppers.  In the Catholic Church we call that a miracle. When Jenny McCarthy told the media her son had lost his diagnosis she was called a liar. Turns out that the only way to lose the diagnosis is by doing nothing.  Jeez, I'm always the last to know...  I could be driving that Camaro I'm constantly talking about on Facebook with the money we'd have saved.
 
Then there's this sobering study reported in the Simons Foundation Newsletter: People with autism DIE. A LOT.

Of the 305 people diagnosed with autism in Utah in the 1980s, 29 have died. This is about ten times higher than the death rate in the general population during the same time period, according to a study published 25 September in the Journal of Autism and Developmental Disorders1.
 

If that's not bad enough, the study added, Because women in the general population live longer than men do, the elevated risk of death for women with autism is more than twice that of men with the disorder. This may be because women with autism tend to have more severe symptoms than men do, including more intellectual disability and epilepsy, the researchers say.

Houes of Cards 160Kim Stagliano is Managing Editor of Age of Autism. Her novel,  House of Cards; A All I Can Handle 50 pixel Kat Cavicchio romantic suspense is available from Amazon in all e-formats now. Her memoir, All I Can Handle I'm No Mother Teresa is available in hardcover, paperback and e-book.

 


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What do they die of? Illnesses? Injuries? I'd like to know.

Geeze Kim;
How many of these little snarky blogs do you guys have to put up with?

Shemena, you might want to rethink the "rational" thing.... Honestly, Merry Christmas to you too and your child. Feel free to never read us again. We'll get by.

Kim

Seriously, fuck you people. - a rational mom of a kid with autism who is sick of your paranoia and bullshit.

As the parent of an 18 year old son with Autism, we too never give up the hope that treatments will continue to move forward- medical, dietary, education, communication, technology, etc.. What I think is difficult for many parents, families over the years is the "line that is drawn in the sand" that you come to realize later. When our children are diagnosed with Autism we grieve for the loss of what life was suppose to be, you build strength, and move forward to help them improve, learn, grow, etc. What is heartbreaking is I know many families who work tirelessly, do many of the medical, educational, dietary, behavioral interventions and while their children/adults improve, they still have Autism and that line in the sand is "What kind of Autism do they have?" Oh, they are not HF?, Aspergers?, non-verbal?, frustration? Bite Hands? etc. Oh, that kind! Even in our Autism community- That kind of Autism. These are hard working children/adults/families and they do all the interventions too and YES they still have "that kind of Autism" and to be honest we know more of those kind of families then the recovered ones. It makes families feel bad when they are working just as hard, doing the same things per ARI, Gen Rescue, etc and at the end of the day they are improving, but they are not recovered, will never be independent and you need to remember that those are the children/adults/families of Autism and lets not draw lines in the sand because they are not the recovered ones.....

Carolyn, re: "Not giving us actual invention results that will assist, and for more than 34 individuals"

The actual data on individual interventions received is being analysed at the moment and will be published in near future.

As for "more than 34 individuals' - you have to start from somewhere don't you? Studies cost lots of money, and the hope and expectation is that this study will lead to more, and bigger ones, by different teams ...

I am frankly stunned that this study is getting such negative reactions from biomed community. Yes it is small scale, and yes it includes (not by design, mind you!!!) a subset of children, but it could well be the turning point for the long awaited change of paradigm from autism as genetic-ingrained-lifelong-untreatable to autism-as-a-set-of-symptoms-caused-by-something-and-potentially-treatable.

Isn't this what we want?


When you look at those that were involved in the NIH study you have to know that this was a very, very controlled group. Additionally we don't have a follow up to see if indeed that dx did not return like it does in some children who regress in puberty. These are also children who may have never had true Kanner autism, but were medically ill.

I'm tired of this type of thing, hand picking 34 children above a certain IQ to fine tune research to show a positive. One that is not even devulged how that success was achieved other than to acknowledge intense parental involvement and therapy.

The mortality study too is unusual. It denotes 29 individuals with ASD died in their 30s-40s, but only indicates the manner in which 15 died of natural cases. What about the other 14? Also it then adds that some of the individuals added to the study were not originally diagnosed. What is that about?

I personally would also like to know what contributed to the overall illnesses in these individuals? Where they institutionalized or in group homes, heavily medicated, and how do individuals in this age group die of heart failure or a heart attack? Most deaths are listed on death certificates as heart failure without autopsy, so what happened really within those deaths and what contributed to them.

In all of this, as usual, individuals with autism are numbers utilized in a way to express what is needed for the purpose of that specific effort or research. Not giving us actual invention results that will assist, and for more than 34 individuals, or what caused the deaths of 29, does not help us to help individuals with ASD. What it does do is complicate an already complicated life of questions unanswered and perhaps give false hope or cause one to consider themselves to have failed their child. Additionally it also further proves one more thing to fear for those we love more than life itself.

I'm tired of this and I know I am not the only one.

Speaking of outgrowing autism, Babble.com published the piece, Optimal Outcome: I Don’t Want My Kids to ‘Outgrow’ Their Autism on Jan 17.

http://www.babble.com/mom/optimal-outcome-i-dont-want-my-kids-to-outgrow-their-autism/

We were told:

“All four of my kids are absolutely awesome. For two of them, Asperger Syndrome is part of who they are. While I want to help them with the issues that may come with that, like anxiety, I have no interest in changing the way their minds work. Their minds are amazing. They are both incredibly smart and thoughtful. My 11-year-old daughter burns with curiosity about the world around her. My 6-year-old son has an attention to detail that will most certainly benefit him in the work world.

“Why would I want them to lose that?”

Joslyn Gray’s piece on Babble leaves me too dumbfounded to comment. First of all, her two children with Asperger’s are 11 and 6. I’d like to hear from her in about 8 years with they’re struggling with adolescent and adult issues and mom isn’t there to help with things. Autism isn’t an asset---it’s a deficit. Something separates this child from his/her peers. That’s a disconnect that makes life a struggle. We’re being told here that autism is a new normal….another way of being. And it’s always HF and Asperger’s parents who talk like this. Yet, notice the title, “Their Autism.” Asperger’s kids shouldn’t be the poster children for autism---that’s part of the cover-up and it’s done on purpose.


would it were true! my child was not the 'normal development then regress' type. from the first dpt and subsequent seizures and developmental delays (which were severe at first) she has progressed, but definitely isn't anywhere near neuro-typical! will she someday be able to go to a regular schoo?, work a job? fend for herself? i'll remain hopeful, but skeptical about a fully 'cured' autism.

I bet some have "grown out" of the condition without visible intervention (though I think some mothers and fathers have quietly intervened as much as they could all along), but with today's vaccine schedule and perhaps other environmental changes the chance of "spontaneous recovery" is less.

I personally believe my daughter may never have received a diagnosis if I had just stopped vaccinating, though an earlier diet change, supplementation, etc., may have particularly reversed delays and improved her overall health.

Great Benedetta,as we all know to well they are all diffrent...not one the same.. and we all know what caused it..the one thing we can all be sure of...

Regards

Angus

The article says completely?
Completely?
Well mine recovered a lot, to the point that I feel like we came out of this smelling like a rose - but I would not say completely.

My son is 15 years old now and STILL has his school assesed age of two years old at best...hast grown out of a day of autism ..never mind 15 years OFFIT..SHAME ON THEM..

I think that they can get better.
Look at the Ketogenic diets and epilepsy.

If they don't just settle on behavioral modification but look at it as the disease that it is - then we will come to understand this disease for what it is and better treatments.

A few get better.
Someday all will get better - I so very much hope!

The ND are going nuts because an IAMS commercial dared to feature a kid with severe autism coming out of his shell because of a cat, though the regular-Joe bloggers seem to be moved by it: http://greencarnations.tumblr.com/post/40774405205/was-that-an-iams-commercial-featuring-an-autistic

I skimmed the study, and it does sound like the kids who recovered were NOT kids who were developing normally, then severely regressed and became sick. It does sound like these were kids in the gray area of the spectrum. I have a child (age 19) who never received an autism label, but I bet she would have if she were born five years later (and maybe she wouldn't again with the DSM-V. We played the game - first an OHI label and now an LD label that really is a stretch. We consider her spectrumish - not quite enough from each section to qualify, but very obviously with issues. Regardless of whether she is or isn't, we did everything we could, including diet, traditional therapy (except ABA - we did floortime, spending as many hours), alternative therapy and education. She certainly has her issues now, probably more so than the "optimal outcome" kids in the study, but she also graduated from HS, held a part-time job and is a full-time out-of-state student at a state university. It's not a miracle that has anything to say about autism. It's a lot of luck - I know plenty of parents who work just as hard and don't get the same result. The real problem is that the term "autism" does no one any good because it doesn't speak to the cause or the solution. It's like saying everyone whose leg hurts has "leg pain" without discovering if it's from a scrape, a broken bone or cancer. Autism is a label for a collection of symptoms. Vaccine injury is a diagnosis. Mercury poisoning is a diagnosis. Chronically mistreated ear infections that destroy the vestibular system (part of what we dealt with) is a diagnosis. Leg pain is not a diagnosis, and neither is autism.

You know I don't get it. Kids have been recovering or loosing their label since the Lovaas studies. Why do people forget about ABA in all of this? I have two children with autism, and I can tell you I know they will never loose that label. But, there ARE children that do. I have met them, their families, and it s real and thank god for that.

Did she really mention Gen Rescue? That's huge! Neighbour mentioned seeing this & I said she either must have had mild adpergers or done biomed. Also in the news its very exciting that they mentioned NPH at Huffpo and ABC newsDick Wagner, guitarist from Kiss, Aerosmith & Alice Cooper had dementia symptoms and motor problems and was found to have NPH (normal pressure hydrocephalus) which is also being looked at for MS suffers in some cases. It's very interesting brain research/treatment, again pointing away from genetic bullcrap theories. I'm heartened. Was

We aren't ignoring the study - I'm pointing out its portrayal. Max Wiznitzer has been saying "Kids can just grow out of it" for a lot of years - and this media slant is more of the same. Kim

I am disappointed that Age Of Autism isn't taking a closer look at this new study on autism recovery, instead of just forwarding the junk reported by other media outlets.

For the first time, there is scientific proof that recovery is possible for some. This is extremely important and has potential to shift paradigms in the scientific community.

Until now, the scientific community did not believe recovery from autism was possible, since it does not fit with the pre-determined brain-wiring genetic dogma.

Now that it is scientifically proved that recovery is possible, it opens the door to the possibility that for some:

- autism might be a biological disease affecting the brain, as opposed to genetically pre-determined, life-long, fixed brain issues.

- autism might be treatable with biological interventions.

"This may be because women with autism tend to have more severe symptoms than men do, including more intellectual disability and epilepsy, the researchers say."


This is a little upsetting to read for me and for my daughter ......

And it makes me more determined to seek RETRIBUTION for this effin CRIME .
AND make the perpetraitors (sp.)PAY .

I stumbled upon an article from CBS news dated April 2012 regarding kids "blooming" out of autism....and claimed that it was mostly white weathy people whose children grew out of autism! I loved one of the comments so I pasted it below:

CanadaMom says:Ironically, the boy pictured in this stock photo is the son of a friend of mine. This boy had early onset autism, although he also regressed even further as a toddler and was diagnosed by a team of specialists at 3.5 years as autistic (not PDD-NOS, not Aspergers, but full blown autism). Now however, five years later, he is a chatty, calm boy with friends. Even a best friend. Why? Well, his mom is white, but certainly not wealthy. She may have pursued, but did not receiveany traditional therapies. No ABA, no speech therapy. What this child got was the benefit of his mom's certainty that her son's autism was nothing more than severe symptoms of underlying complex medical problems. She has spent the last few years researching how to identify and then treat these medical problems. Her relentless efforts, the support of a few medical professionals willing and able to help, and the research being done by people who know for a fact that autism is not necessarily a life-long diagnosis, changed her son's life completely. Or, perhaps more accurately, gave him back the life he was supposed to have in the first place. She did this. This boy did not magically bloom out of autism. Without his mom's hard work his trajectory would have been very different. I suspect the same is true for those Californian children in this study who made such great progress. I doubt it is a coincidence that California is home to Autism Research Institute, Generation Rescue, and Talk About Curing Autism. If there is a place on the planet with a high population of parents who know that biomedical treatments can improve the quality of life of a child with autism, even recover a child completely, it's California. Autism is treatable. In choosing a random stock photo, the writer of this article proved it.

http://www.cbsnews.com/8301-204_162-57408226/some-kids-with-severe-autism-may-bloom-out-of-disorder/

This new study was not about 'growing out of autism' AT ALL. Media is simply misreporting it.

The study reports on children who recovered through heavy interventions. Future publication from the team will give details on which interventions were used in each case.

It is an excellent study and could/should be a game-changer!! It could start shifting the paradigm from autism as ingrained, psychological and lifelong, to autism as a collection of symptoms that are merely a result of something (environmental), and potentially treatable.

The media is misreporting, as usual...

For how important this study could be in terms of how autism is seen and treated in future read this editorial in JCPP http://onlinelibrary.wiley.com/doi/10.1111/jcpp.12045/pdf

BBC radio interview (starts at 47 minutes in) http://www.bbc.co.uk/programmes/b01pnctb

As a Catholic and a Mom I DO believe in miracles, but not in an article that says my 32-year-old son will "outgrow" autism, lol

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