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The Autism (Seems-Like-Nobody-Really) CARES Act

Sugar coatedBy Julie Obradovic

I came across a blog post not that long ago by a mother who was arguing that autism is nothing to be afraid of. Her point, if I remember, was that she had been incorrectly conditioned to believe that autism was a scary diagnosis, and that the people who put forth that idea were not only irresponsible, but also dangerous and misleading thousands of parents. In her view, autism had turned out to be an unexpected gift, and there was nothing she would do to change it. Or something like that.

The comments were all very supportive. These parents were angry with folks like me who had spent years sounding the warning bell, sharing our heartbreak, and calling for action. What were we so upset about? They wondered. And how in the world could we possibly contemplate changing anything about our kids?

By the time I read it, I was fully aware of this perspective. It’s the group of people who want to convince the world of a number of things: autism has always been around; it’s a natural state of the human condition; it’s a gift; there’s nothing that can be done; and there’s nothing that should be done. (Wrong, wrong, wrong, wrong and wrong.)

Rejoice in the diagnosis, turn on some Big Bang Theory, and raise awareness, they proclaim…their awareness, they really mean, which actually just translates as acceptance. Just accept it. Adapt to it. Accommodate it. That’s it.

I try to respect other people’s experiences with autism to the greatest extent possible. Just as no one can tell me what I did or did not live, or how I should feel about it, I do my best to honor the same for others.

It’s just that I don’t know how we’re living such different experiences. And I don’t know how they don’t see the profound difficulty, disability, and danger that so many families experience. Worse, I don’t understand why they don’t want to help those children and families.

I wonder, what do they think when a child wanders and drowns? Do they still seriously believe autism is nothing to fear? That it’s a diagnosis full of joy and wonderment and possibility?

Just recently, another little boy with autism was found dead in a pond not far from his home. I have stopped keeping track, but this is over the tenth child with autism to die from wandering just this year.

He died from his autism. Yes, technically he died from drowning. I get it. But you and I both know his autism killed him. It drew him to water, impaired his judgment and communication skills, and killed him.

Autism killed him. And Avonte Oquendo. And Owen Black. And Mikaela Lynch. And Jeremiah Conn. And so many, many more.

On my newsfeed several more disturbing stories pop up.

The one where a 16-year-old boy was beat up for fun at a party.

The one where teenagers took a young boy with autism, beat him and stole his clothes, leaving him alone in a park.

And the one where a new study finds adults with autism are more likely to be sexually abused.

Only a few months ago there was also the story of young boy being kept in a dog cage by his parents because they couldn’t control him.

Another story about a child being starved and locked in a closet.

And of course, the now infamous story of the ice bucket challenge, where a group of teens decided it would be funny to dump feces and urine on an unsuspecting boy with autism.

These are the stories just in the last several months.

As the president signs the repackaged “Autism CARES Act”, a more politically correct and palatable version of the “Combating Autism Act”, I wonder how much he and the architects and champions of this legislation actually “care” about autism.

Do they care that children are wandering off and drowning? Do they care that 2% of American boys have an autism diagnosis? Do they care this population of people are extremely vulnerable to heinous attacks, sexually and physically?

Do they care that the autism population is vastly under or unemployed and likely will never contribute to the economy, but may rather actually drain tax funds by relying on the government for housing and living expenses?

Do they care that autism is a painful, seriously physically debilitating disorder for many? That it is bankrupting families? Bringing marriages and parents to the brink? Stealing life potential, siblings, self-esteem, and friendships by the second?

Do they care that there is a tsunami of children aging out of the school system right now, this very moment, who will need somewhere to live, services, jobs, and more as their parents age…and that those things currently don’t exist?

Do they care close to one million people with autism can’t speak or have very limited speech? Can they imagine that for a second?

I just don’t get it. I don’t see how these very real parts of the autism experience can be so blatantly ignored…no, more like denied. Dismissed. Ridiculed. Even reviled.

And I don’t see how those of us who call for action, who want to put a stop to the epidemic, who want to save these lives, provide these services, and stop this suffering are being shut down by those who are offended at the mere suggestion another person or parent’s experience is vastly, vastly different and more dangerous than their own.

And there’s more.

Death. Drowning. Violence. Abuse. These are the worst of the worst when it comes to the pain autism can bring. They are also the most visual. But there is even more to it than that, an underbelly of pain that is far more prevalent and far more chronically shared that rarely gets discussed. And it certainly wasn’t addressed in the “Autism Cares Act” either.

The scream of a child who can’t tell you where it hurts or what is wrong.

Signing court papers to take legal guardianship of an 18 year old.

Watching the light go out of your healthy baby’s eyes and being told you imagined they were ever fine.

Attending an adversarial IEP where you and the people who are supposed to be educating your child are at odds over services and money.

Sleeping in front of your child’s bedroom door because they might wander in the middle of the night.

Seeing the neighborhood kids laugh and play and hang out while they pass your house, not even remotely interested in having anything to do with your child who is immersed in her I-pad.

The sound of the “thud” on the floor when your child has dropped from a seizure.

The baseball games they didn’t play. The dance recitals they didn’t do. The sleepovers they didn’t get invited to. The honor student they’ll never be. The giggles and friends they’ll never make. The posters of heartthrobs they’ll never post on their walls. The driver’s license they won’t get.

The list is endless. Absolutely endless.

It is a kick in the gut every second of every day. It is wearing a shield of armor everywhere you go, because just when you least expect it, just as you go to put it down for a moment, a child your child’s age walks in front of you and does something or says something that your child can’t…and you are reminded all over again of this fact.

It is the non-stop heartbreak, the never-ending pain of the loss of the dreams for them you once had, coupled with never knowing what their dreams actually were and if they know what they have lost. No matter how much they recover, how much they go on to achieve, it’s the constant wondering at what could have been and what will be.

And it never stops. Ever. At best you can learn to live with it, accept it, and find the joy in the alternative. And eventually, you do. But it will never, ever, ever replace what could have been. And deep down inside you know that and carry that wherever you go for the rest of your life. And to make matters worse, you are now afraid to admit it because insensitive people judge you and accuse you of not loving your child as they are.

It’s all bull, this “Autism CARES” nonsense. Because the truth of the matter is, from what I can tell, it seems nobody actually cares. Outside of those who live this and fight every day to make it matter and make a difference, nobody in any position of power to really do something about it actually cares based on their actions. Not the President. Not Autism Speaks. Not the IACC. Not the self-advocates.

They don’t seem to care about someone like my daughter who probably won’t ever be able to get a license or live on her own, even though she has a wicked sense of humor, a caring loving heart, and a sensitive soul. She is the antithesis of Sheldon Cooper, but the powers that be don’t consider her. Just accept her. Just accommodate her, they say.

Nor do they seem to care about the kids who wander off into the night to be found in the pond the next day. They just don’t want to be offended by the suggestion there’s a problem. That at its core autism is anything but a gift for far too many.

But the pain that hurts the most is this: That we are living in a twilight zone of vastly different experiences with the same diagnosis, and the one with all the money and influence to make a difference for us is the one who is offended by or uninterested in ours.

So where does that leave us? And where does that leave many of our children?

Based on the evidence thus far, we know where.

Dead in a pond. Friendless. Vulnerable to sexual predators. Abused and stripped naked in parks. Crashing on the floor in seizures. Doused in feces. Stuck in dog cages. Living at home until their parents die. At school until they’re 21, and then unemployed and potentially eventually homeless.

That’s where.

Now tell me again how much we actually care about autism?  

Julie Obradovic is a Contributing Editor to Age of Autism.

 

Comments

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Alex Borrino

We found a young autistic man homeless and nearly dead 6 years ago. We have been brutalised by a system that promises support but fails to give it. He is severely autistic ,with adhd bi polar a d brain damage from iolent abuse. Has had his feet broken a d kicked into a 5 month coma and shot by gangs in the uk.We have battled for over 6 years to get help for him,but the system is useless. He has had o benefits for nearly 2 years lives in a flat he could e evicted from anytime has no money for food etc. We pay all his bills and expenses and feed him because the system is evil and only destroys these poor people. We have come to a dead end, now ourselves penniless have badgered social services etc but get no where, WORLD will help , legally , or support us...NO ONE , ! We have stopped him trying to commit suicide more times than we can recall..We are at the end of our endurance.

Jim Moody

“Autism” needs to be separated into the “bad” [disease, disorder, brain damage] that needs to be “combated,” treated and prevented and the “good” [gift, neuro-diverse evolution, new normal]. One of the most diabolical and insidious strategies implemented by Dr. Insel, many of the other feds on IACC, and, sadly, many “leaders” in the community has been to subtly repeal the “prevention” goal of the original CAA. Congress was crystal clear in the original Combating Autism Act of 2006 specifically stating that the goals of expanded autism research were to focus on prevention and treatment. 42 USC 284g(a)(1): “Such research shall investigate the cause (including possible environmental causes), diagnosis or rule out, early detection, prevention, services, supports, intervention, and treatment of autism spectrum disorder.” The Senate Report explained that “the committee expects the NIH to retain a separate, distinct focus on environmental health factors as they potentially relate to autism spectrum disorder.” The original strategic plan, Jan. 25, 2009, explicitly focused on the goal of prevention: “ if one views ASD as a biological disorder triggered in genetically susceptible people by environmental factors, then prevention can include prevention of new cases of ASD through the identification and elimination of environmental causes. . . . Having sound research on the risk factors and the environmental triggers for ASD ultimately may allow us to achieve the goal of prevention: preventing the development of the disorder in some people at risk or reducing the degree of severity in those affected. . . . The systemic component of autism supports the possibility that both the core behaviors and medical issues have a convergent mechanistic basis that if identified, could provide new insights into treatment targets, candidate genes, and strategies for prevention.” Although Congress required a 2011 report on to contain in part “[a] description of the progress made in implementing the provisions of the Combating Autism Act of 2006,” i.e. prevention, the report was completely devoid of any progress toward the goal of prevention. But the Congressional mandate to prevent autism has been quietly repealed. By the 2013 strategic plan update, question 3 stated: “Causes of ASD will be discovered that inform prognosis and treatments and lead to prevention/preemption of the challenges and disabilities of ASD.” And there is no mention of research on vaccines as an environmental cause, the focus of floor colloquies in the original Act. Thus, the focus of research has been watered down to preventing only the “challenges and disabilities” of autism, whatever that is supposed to mean, and not the autism itself. That’s like trying to prevent the pain of cancer, but not the cancer itself, or failin memory but not the Alzheimer’s, and hopelessly confuses symptoms with the underlying disorder. Dr. Insel and IACC have betrayed Congress and have simply decided that autism is here to stay, perfectly “normal,” and something we all must just get used to. To "CARE" [as in the title of the new Act] is NOT to COMBAT or PREVENT it!

Eileen Nicole Simon

The first IACC meeting I attended was in November 2003. For me this was also an emotional visit to NIMH, source of funding for my graduate education, dissertation, and post-doctoral research. I am sorry I did not push harder for funding for research on auditory and language dysfunction in autism. I returned to my previous career in software engineering. I continued to read research papers on autism, the auditory system, and language, as well as computer systems design. I submitted papers for publication, which mostly had to be resubmitted as brief letters-to-the-editor. I wish I had John Elder Robison's genius for drawing attention to his view of autism.

Why did congress establish the IACC? Wasn’t it to get a group of experts together to investigate reasons for the horrific increase in cases of children disabled by autism? Why are members of congress not excited by the ho-hum discussions at IACC meetings? Where is the science? Why isn’t the discussion focused on the neurological signs of language disorder, repetitive movements, and diminished level of social consciousness? Why are “autistic trait” associations to “gene loci” considered more important than neurology?

The BRAIN should be the focus of research on autism, and the particular pattern of damage that results from all of autism's known causes: Prenatal rubella infection, prenatal exposure to valproic acid, premature birth, oxygen insufficiency at birth, PKU, postnatal pan-encephalitic infections. What systems (circuits) in the brain are vulnerable to all of these insults? What pattern of ENCEPHALOPATHY might be caused by vaccines and their components?

In PubMed submit: 2-deoxyglucose "inferior colliculus" and lookup some of the substances on the last page of the 138 citations listed. Read some of the abstracts for EVIDENCE of how metabolism in the brain is affected by pharmaceutical substances.

What is the evidence that autism is only a matter of neurodiversity?

Sharie

Exquisite illumination of the "gift" of autism, Julie! Thank you for describing the special "joy" of raising a child severely affected by autism. If I see another kid with autism singing with Katy Perry or writing books of poetry I'll scream. It's time for the world to see the dark side that you spoke of so honestly. Your life is my life and oh so many others. There is nothing sweet and magical in my daughter when she hits herself in the face 500 times an hour for a period of two years resulting in cataracts and vision loss. Truer words were never spoken: the underbelly of pain is indeed endless. When I see simple acts of kindness towards a kitten in distress, it drives me crazy with anger: why isn't the world as affected by the suffering of millions of children? Where is the compassion? the humanity? Thank you for telling it like it is.

Downward spin

I recall a conversation with a health practitioner/official c.1995-6 (before the Wakefield controvesry blew up) saying to me we are finding cases of autism in families in which there were developmental kinks in earlier generations. I suspect I have only just cottoned onto the fact that what they were hinting was that the new generation were reeling form the vaccines: no chance to be come a successful "geek" like John Elder (he uses the term on video).

ATSC

John Elder Robison

Please watch this short video of a child's lights going out:

http://ireport.cnn.com/docs/DOC-1172112

It could be a before and after vaccination video of my son twenty-one years ago, and it breaks my heart knowing that it's still happening to little children everywhere, and absolutely nothing is being done about it.

Having read your article, My Life with Asperger's What is Neurodiversity in Psychology Today (October 7, 2013), I'm trying hard to understand why someone who believes that autism is naturally occurring and doesn't need to be cured would be appointed to the IACC, because it makes just as much sense to me as it would if Augusten Burroughs, your brother, joined a committee set up to combat or cure homosexuality. But then, we have totally different views on what autism is.

Apparently you believe that children like Drew, Hannah Poling, Baylie Banks and other brain-injured children don't have true autism but symptoms of brain damage that mimic autism, like the VICP, so I'm wondering if you've made it clear to the IACC that you yourself do not represent the sub-group of children with regression and autism-like symptoms because their condition is vastly different from yours and so much worse, but, and I'm sure you'd agree, they do need attention. Temple Grandin has said that children with regression need to be studied separately, and they do, regardless of the psychiatric label they've been given, and whether or not you and others in the Neurodiversity Movement think they have been mislabelled.

Regression like this in infancy or early childhood is very damaging and these children will never achieve what you have achieved because, as you so rightly say, their brains have been injured. Please stand up for them.

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Julie

What are parents to believe when they hear experts comparing autism to left-handedness and associating it with giftedness; when they read books written by successful and married autistics and watch interviews like this one? Listening to Scott Michael Robinson's views, that all autistic people can pursue their hopes and dreams with accommodations and assistive technology, why would anyone really care about it?

http://www.youtube.com/watch?v=ZSF54TPef8s


(19.33) "I think that autistic people in particular can really benefit the workplace in terms of how we have different views in our thinking processes, because our neurology is so different to the non autistic people and it can be an enhancement to the world. But I think it really depends on individual interests in terms of what careers individuals should go into with supports, what they're passionate about.... so people can pursue their passions and dreams and I think that autistic people are particularly often good at niche things where they can do them really well, whether it's writing or art or technology or journalism.... "

Either autism has had a complete make-over in the last decade or so, or our children don't have true autism but brain damage that mimics autism, as John Elder Robison states here:

http://www.psychologytoday.com/blog/my-life-aspergers/201310/what-is-neurodiversity

What is now clear to me is that we're not talking about the same condition, and that parents who say autism is a gift either have mildly-affected children or, as Greg says, they're in denial.

Barry

One fundamental problem is that we fund research without ever tracking what - if anything - is ultimately delivered to the population who lives with autism.

*****************

And who's fault is that John?? And if you're so clear on what the "fundamental" problem is, then why the hell is it still the fundamental problem?

A fundamental problems for me John is that I just read seven, near perfectly written paragraphs from you. And the ability to do THAT, has nothing whatsoever to do with with my son, or what his abilities have been reduced to by vaccines that poisoned him when he was still just a baby.

I didn't ask you to advocate for my son, and to be honest I much prefer that you didn't . Because the autism that you supposedly have, does not represent the life long issues that my son will have to face.

But if you insist on doing it, and doing it so poorly, then my advice to you is either do it better. Or grow a thicker skin!

cia parker

Thank you, Denise. I had thought the same thing, that when societies everywhere are crippled with millions of severely impaired, adult autists, we may well see a horrible final solution that now seems unimaginable. It's too depressing to dwell on for more than a few seconds, but I think you're right.

Cynthia Cournoyer

The evolution of a word. First Autism=mystery. Then autism=something to combat. Then autism=a gift. Then autism=a variation in child development. Then autism=normal state for some children.

This is how a problem is combated. This is how a problem is changed from a challenge into a non-problem. This is how we are conditioned into accepting the state of autism and cajoled into standing down on our battle. How can you fight something that isn't really there?

It's a battle of words, not action, not results, and certainly not compassion.

Pecking order

I fear that parents of able autistic/Asperger children often like to be able to hold it over the parents of the less able and more infirm.

Greg

Guys, those parents in the neuro-diversity camp that see their kids' autism as a 'gift' are simply using denialism as a coping mechanism. For example, one of my parents of a severely affected autisic son (30ish) invited me to this presentation that she organized for academics and fellow special needs professionals to demonstrate how her son was a gifted poet. The entire ordeal was in full tilt theorizing mode in which she sought to explain that autistics individuals were specially evolved and here to teach us new and better ways of being. And, of course, her sons' poetic gifts (which she was so proud of) were obtained through facilitated communication. I knew her son well though, and also knew that she was spouting hogwash. Interestingly, a few days later she started complaining how hopeless her son was, and how frustrated she was caring for him that at times she felt like just ending it all. Funny, but my other families that are not so apt to see things through rose-coloured glasses, and are realistic about their kids' challenges are less likely to have these desperation bouts.

Denise Anderstrom Douglass

I just spent probably two hours trying to write something that would help you younger people who are parents of severely affected autistic children. I was timed out while just finishing that last comma and word.

I'm a grandmother of a severely autistic 13 year old. He is stunningly beautiful, sweet, and very low verbal skills, though he has made some progress. I want to VALIDATE what you wrote, Julie. Always go with your parental instinct. I learned that at the age of 23 when a specialist told me that "you are a very sick young woman. Children this age (4, in 1972) do not have headaches. It's all in your head."

Well, no. It was a malignant brain tumor in my child's head. He survived and is 46 now. But Julie, what you wrote about wondering if your child ever knows or thinks about what he or she lost... well, that strikes right to the heart of it.

I have been following this since 2003. My grandson regressed; he followed the now familiar pattern: MMR vaccine with loss of former normal development, loss of speech, bowel disease, stereotypical play, arm flapping...

What you wrote about I have been observing for quite a while: the drownings. My grandchild was taught to swim by his father, so, despite his heavy winter attire, he survived going in to the pond and the police were there, etc.

I want to sound a loud alarm to the autism community, as an elder who lived through the "children after the bomb" years in the US. When I was 13 (early 60's) all the shows and movies were about the scary unknown effects of the radiation from the bomb: giant spiders, giant ants, the birds, etc. Not to mention "the incredible giant woman" a foreshadowing of woman's lib.

Hey, what do you suppose all these Zombie shows are about? What is the fear lurking in our society's dark side collective unconscious??? What do you think? I think it is rather blatantly the fear of millions of 45 and 50 year old nonverbal, arm flapping, naked, autistic adults flapping their arms and doing "The Wiggles" dance songs.

And they are going to have to be paid for -- or killed. I am here to raise an alarm. Remember the Holocaust -- what do you thing pouring urine and feces on an autistic boy means? I am wanting to raise an alarm as an elder who remembers the tattooed numbers on my friend's mother's arm, and all the children I knew who did not have aunts, uncles, or grandparents. Learn about it. Because it can happen again,to your children and my grandchildren. Fight back!

Roger Kulp

AutismGoAway,you may not realize that,before the DSM-V,a person who had no problem with speech or language,but was still very low functioning in every other area,and unable to care for themselves on the most basic level,was still considered as having Aspergers.I did not realize this until I read my autism rediagnosis from 2008 for the first time before I sent it off to ACH a couple of months ago.This may be a type of autism only seen in mitochondrial disease.It just shows how flawed the DSM was,and still is,

I have only learned in the last couple of days how difficult it is to get accepted to be a candidate for the IACC.It seems to be like applying for a regular government job.Public members have to have a resume with a long work history.A parent of a severely disabled child,who has spent years caring for that child,would have just as hard a time as I would getting accepted as a candidate.The fact I have spent the last few years learning about all the underlying medical problems I have,in addition to autism,seeking out just the right tests to get the correct medical diagnoses,spending thousands of hours reading medical journals and textbooks,and have come so far in improvement from such a low level of functioning.None of that seems to matter a whole lot.To be fair,though,I don't think this may be the fault of anybody on the IACC,more than likely it's a policy decision that comes from the top levels at NIH.It just proves the whole system is flawed at NIH,even though those on the IACC get it,as John Elder Robison points out.Perhaps if IACC gets reauthorized,the rules can be better written next time.

Nancy

AMEN! So glad you wrote this and so glad you are getting messages of support. (with an exception) You'd think that everyone that encounters autism has the rainbows and unicorns perspective. I'm glad I'm not alone!

Katie

Thank you. Thank you for this...though honestly, I would have devoted more space to the HOURS of relentless screaming and attacks against family members (and household items) as they get older, in severe cases. They become a danger to themselves and others.

I was informed by a friend in an anti-vaccine group who has one child with autism, maybe another slightly affected (?), that there is a group of those with Asperger's who are pro-vaccine and who will vehemently attack anything that details the troubles of autism. (By no means is EVERYONE with Asperger's like this. I have met a young woman online with it who stopped vaccinating her baby after horrific reactions including blacking out.)

In the past I would've assumed it was naive people from around the web who happened to find these. Knowing that it seems to be a group focused on harassing anyone with our values and goals may help us in knowing when to ignore.

The idea that we shouldn't try to heal these children (and adults) is utterly preposterous. That they enjoy hours of screaming. They enjoy violence and being given a wide berth. They enjoy being removed from their homes. We try to heal people who've been in terrible auto accidents or who seem to have lost brain capacities in other ways...what's the difference??

If someone with a diagnosis on the "spectrum" has a great quality of life, great. But there is nothing that will convince me you are a SICK person like standing in the way of others who want to get well.

cia parker

The vaccine companies are searching desperately for groups to help them combat those of us who have seen vaccine damage in our children result in autism or many other conditions. Strength in numbers. So they curry all the autism moms who would rather believe that the damage is not from anything they did, like permit vaccines, and find inner peace by looking through the rainbows and unicorns lens at their children's autism. Gray Falcon put up a link on Shot of Prevention last week to a blog by an autism mom who described her daughter's autism and excruciatingly painful GI disorder: she tried the gluten-free diet, and it helped, but since the girl refused to eat anything on it, to the point that she had to be fed through a feeding tube, she had to give up the diet. She said the condition improved over the years. And she said that people should not try to treat their children's autism with all the wacky things we do (meaning all of them), but just accept autism for the gift (sic) that it is. She had just given up. She wasn't going to do anything, and the sight of others working desperately hard to do something and sometimes succeeding, apparently makes her uneasy, and so she blasts us, with the support of BP. I have a feeling GF hadn't even read the blog, he just saw the word "accept autism as a gift" and ran with it.

So Big Vaccinia is doling out the dollars to such moms, and also to the neurotypical groups so intent on saying that any attempt to heal autism is a ghastly insult to THEM, that they are just GREAT just the way they are, thank you very much. Self-centered, shallow, cruel, yes, but that's just the way God made them, what an insult to suggest that they were vaccine-damaged as well, and no one has any right to try to change them (all of them Asperger's who can type and communicate) or their more severely afflicted autistic brethren.

So the push is on to paint us as intolerant, unaccepting of our "less than perfect" children, unrealistic in demanding studies on vaccines and autism therapies, which just waste money which would be better spent on Rainbow Rallies. And the vaccine companies are liberal in their pouring out funds for these groups as well as those like Voices for Vaccines and Vaccinate your Baby, composed mostly of moms of typical children paid to post on the dangers of the vaccine-preventable diseases, and if even one child anywhere has ever died of a new VPD, then that's certainly reason enough to force all children everywhere to be vaxed for it, because they will deny to their dying breath that any vaccine EVER causes all the damage we have seen that they do.

So it's just another example of money making the world go round. Who cares about the damaged?

Benedetta

John Elder Robison, as a member of IACC - I am glad you are blogging to us -- communication is useful.

But how many times has Tom Insel called for a vote - that is really to vote down any thing that would lead to knowledge about the immune system or the environment that would or could eventually lead back to vaccine injuires -- and you held up your hand?
I have not really paid attention to you --- but I have a few others.

I guess I could go back in the archives and watch and see.

Jenny Allan

John Elder Robison says:-"if you want to fix the problem, it starts there. At the level above IACC."

I totally agree, but this begs the question. What use is the IACC if they have no money and no influence with the politicians? We have had enough of 'talking shops'.

Kristine

Excellent article once again Julie! I was just thinking this morning about that child who was in a cage (if we are talking about the situation where the children were well cared for and had no other signs of trouble other than the cage. I understand those people because there is no respite or services in some places and having a "child" that requires constant (24/7) supervision is not humanly possible to maintain for years and years. This is something that the public does not understand and I'm not really sure they can, especially when they are being fed the message that autism is some sort of beautiful gift. I used to describe my son as a 6 year old physically but with the judgment and cognition of a 1 year old. Then the self-advocates get all offended by that. But I think in general this helped people understand because if they have any experience with 1 year olds, then they know how poor their judgment is about danger- but fortunately for them and their parents they do not have the physical skills to put themselves and others in constant danger. If my son wasn't 4 years old and instead was 10 or 16 and was 200lbs and was aggressive or eloped, I'm not going to say we would never have thought of some sort of containment system to keep him from... I don't know... dying or killing one of us. We had no respite and we could not afford anything extra. Due to this my son eloped from our house over 16 times in the period of 18 mos (we called PL and the police 5 times) and he eloped from school (out of the school bldg) 2 times as well. We ended up moving to another n'hood because of this problem. He was 4, he had NO NONE zilch, nada receptive language, he was totally disconnected from the world and everyone in it. He had NO sense of danger or order- he largely spent his days screaming or walking in circles or dumping things out or ripping stuff. How am I supposed to accept this? Why would I be judged for 1. wanting a cure for this unimaginable pain or 2. wanting this to never happen to another child?
Honestly I really try to understand the neurodiversity position but I cannot. I know plenty of HF- kids and a couple adults. It's not that they don't have issues. It is that their issues are DIFFERENT than that of the more severely affected. That is okay for us to admit. I have worked my ass off with biomed interventions and even moved my family to another state so my son could get ABA and I'm happy to say that my child is much much higher functioning than I could have hoped during those dark days. And you know what? Having a higher functioning child (higher, not high yet) who can talk and read and participate in life- well, I'm just gonna say it... it's a lot easier than having that low-functioning, severely disabled child. I'm not sure I would know this if I didn't have the severe child because what we are dealing with right now is still very difficult but back then I wasn't even sure we were gonna make it!!! I don't know any parents of severely disabled autistic children that are promoting acceptance. Even the totally mainstream parents who have a severe child- they want the friggin cure.
I take issue with JER's statements at IACC about not needing to know the cause. We do need to know the cause because we need to stop this from happening. My child will need services for the rest of his life- a fact that literally keeps me awake at night with worry. I just keep putting away money for him and praying that his siblings will watch over him when I am gone. So don't think I don't understand the need for services. My child got NO early intervention and he's only 9 so even though there is a misperception that early intervention is "all good" and the only people needing services are adults is a myth. But, John, services will never be in the abundance needed to cover the epidemic, increasing numbers of people who will need them. We need to stop the epidemic and stem the tide of people needing these services. Just focusing our efforts on services is akin to trying to bale out a sinking boat that is taking on more and more water without paying any attention the huge hole (that is getting larger) in the bottom of the boat! We are sinking!! I will ring the warning bells about autism, and I will continue to let people know that autism is a nightmare and that it is increasing and if they don't take heed then it will happen to their children or their grandchildren.

JSBmama

Dealing with our injured children and being denied our Truth is a catastrophic failure. Thank you Julie for always writing so elequently what bounces around my head. Much love in this journey.

John Stone

John Elder Robison

When I hear the flannel delivered by Chairman Insel - subjected to a certain amount of scrutiny in these columns - I am sorry I do not believe in his sincerity. If you are saying that he's spouting rubbish because that's what the polticians are paying him to do, I supppose that is probably true as well, but speaking truth unto power it isn't.

The most disgusting thing is the shrugging indifference when people tell him their baby was normal until they received a vaccine. Even the the 2004 IOM report recognised that this was a possibility - and actually you would have to have many thousands of such cases before it would necessarily register as statistically significant. In 2004 Chairman Insel used the language of investigating sub-groups (later advocateded by Bernardine Healy) but nothing was done, and the committee took no initiative. Now he is even puzzled how you would do it. I can tell you how you would do it - you would actively monitor and and investigate vaccine reactions and the sequelae, but public policy would be in shreds. Otherwise it isn't difficult at all.

Zed

I'm not an autism parent. But this quote is the one that tears at my heart strings the most. Not only is it insulting, it cuts to the bone and minimizes the truth experienced by those who love this child more than life itself.

"Watching the light go out of your healthy baby’s eyes and being told you imagined they were ever fine."

Linda1

John,
When people want to give the appearance that they care and that something is being done, but they don't really want to understand a problem or change anything that they are doing, what they do is they set up a committee that meets periodically, that has no actual power to effect change, but that can be pointed to as the action that the people are taking to address the problem.

IACC is a lie born out of government malfeasance.

I have a Dream

I have a dream
that one day
the people of the world
will see
those with autism
with severe autism
and have mercy
on them
and their parents.

That dream
includes industry
and government
coming together
to help.

Help in the form
of facilities
for residing
and for
educational and
occupational
opportunities.

My dream
is that one day
enough people
will embrace
non-toxic living
and non-toxic paths
to health and wellness
such that
the buildings
that house hospitals
and medical offices
are no longer needed
as they are today.

My dream is
that all who
contributed to
the poisoning of
people and the planet
will work together
to convert
the sterile
the steely
the standing
brick and mortar
into warm
living spaces
loving places
to help
those in need.

To help those
with autism
and their families
have a more serene
and peaceful
existence
for all the days
they shall walk
on this earth.

This is my dream.

#hearthiswell
#CDCWhistleblower

BoB Moffitt

Julie writes:

"As the president signs the repackaged “Autism CARES Act”, a more politically correct and palatable version of the “Combating Autism Act”, I wonder how much he and the architects and champions of this legislation actually “care” about autism."

John Elder Robison responds:

"Posts like yours also trouble me because they remind me how little we can really do with committees like IACC. Sure, we can make recommendations. Sure, I can write in here and say I share your concerns. But do I have the power to actually initiate research to solve these problems? Can I do something about wandering? No, I can't. We are just an advisory body."

I suspect many .. if not most .. would agree the IACC as presently enacted .. has proven itself more or less "useless" .. and .. just as the courageous Dr. Rimland observed so long ago regarding the "PRETEND TO COMBAT AUTISM ACT" .. we can assume the "PRETEND TO CARE ABOUT AUTISM ACT" will do absolutely nothing to improve the usefulness of the IACC in the forseeable future.

Unfortunately, in my humble opinion .. the only "usefulness" of the IACC is to allow CONGRESS to continue the "sham" of "combatting or caring about autism".


Eileen Nicole Simon

Julie and AutismGoAway, thank you for describing your distress. John Elder Robison, thank you for reading and commenting on AoA.

Form letter responses are all I get from my legislators and from President Obama. I’m not wasting anymore time trying to contact these creeps.

Also, my new Medicare physician tried to cheerfully tell me, “But autism is treatable. Look at Temple Grandin.” I suppose I need a doctor at my age, but protocol-driven medical “care” has me as turned off as politicians, which is why I fully support parents who question and reject the protocol of vaccination for everyone. I object even more to the protocol of clamping off circulation to the placenta immediately after birth...

My high-functioning autistic son is now 52 years old, and lives in a group home for schizophrenic men whose needs are entirely different from his. Yesterday, I was negotiating trading in my old Prius car for a new one, when the new director of the group home called on my cell phone and asked me if I knew where my son might be. Once more he had run away from this house. Fortunately he is able to communicate via phone, and I called his cell phone. No answer, but later he called from the police station in a town about 30 miles from his house...

The IACC should be focused on the problems of the most severely affected, neurologically injured people with the label “autism.” The workshop last week was excellent. I hope the new committee will hold more such meetings, and the IACC certainly should be holding back-and-forth conversations with parents. We have much to say, and we do not deserve to be as royally disregarded and dismissed as we have been for the past several decades. Thanks again, Julie. I may have more to say later...

theresa 66

Julie, I love your posts. My shield is a pasted on smile & an old NAA shirt about mercury in vaccines. We are spinning our wheels with groups who supposedly care, ect... If they are unable to help, lets move on. We must have groups to explain diets, chelation, hbot, ect... Most are internet based, but we could do better. There is no question funds are limited with most families I meet. But at least I can use my voice & tell those who ask about my shirt & autism, and hope they research before vaccinating. Try more healthy diets, or fish oil. I'm not great at this, my child is recovering, but with an added ( non-existing to some ) PANDAS dx, I don't know where we will end up. Creative genius and brain inflammation are a hell of a way to live. I'm pretty sure most children with autism will never live to the potential they were born with. That's a sad fact.
Mr. Robison, I enjoyed reading one of your books. Hope that your involvement will help children & adults who are living a private hell with no recourse. My personal answer would be some kind-of voucher system that could be used for various treatments ( special diets, supplements, HBOT, chiro, ect..) that insurance will not cover. I'm sure families with money have a much better success rate for helping their child. I know draining my ira's has helped my child immensely.

flahute

well said Julie.

JER- If you/we are funding research without properly tracking it to assess how it impacts the population(s) the research is seeking to help; how is that good expenditure of money and limited research dollars?

John Elder Robison

You imply that people on IACC, and self advocates like me, do not care about issues like wandering, seizures, or severe disability. That's not true in my case, and I don't think it's true of most IACC members.

Remember it was our committee that called for a special meeting to discuss co-occurring conditions (like seizures) the other week. Many of us have called for deployment of wearable monitors and other tools to protect people - especially kids - at risk for wandering and death by misadventure or accident.

Posts like yours also trouble me because they remind me how little we can really do with committees like IACC. Sure, we can make recommendations. Sure, I can write in here and say I share your concerns. But do I have the power to actually initiate research to solve these problems? Can I do something about wandering? No, I can't. We are just an advisory body.

One fundamental problem is that we fund research without ever tracking what - if anything - is ultimately delivered to the population who lives with autism. And I think it comes down to what you say about caring. But you're pointing to the wrong people as the "non-caring" problem. I think the people on IACC care very much. Obviously the people who offer comment care. But I'm very afraid it stops there.

Where are the senators and congress people who - by their actions - show that the really care? I'm afraid that is the real issue. It's congress that can direct NIH, the Dept of Education, and other agencies to take meaningful actions. They appropriate the money, and without the money, it's empty talk. As best I can see, what most politicians care about is consolidating personal power, and holding on to it. Autism has little place in that activity. We - and many other deserving groups - fall by the wayside despite the occasional fancy talk.

The problem is, there is only so much money, so something has to give. What will that be? Maybe it's easier to say no to us than it is to turn down Boeing. I don't know, but if you want to fix the problem, it starts there. At the level above IACC.

AutismGoAway

Thank you for your post. I really needed to hear it right now. Autism and Aspergers are not the same thing. In fact many people with severe autism don't have trouble with empathy, lack of social understanding, though people assume they do because they don't talk. The thing is a person with Aspergers can lead a full life like Temple Grandin. The more severe cases of autism are a medical condition. They should not be given a psychological label. We should not put up with this anymore. If we want people to care about our kids we need to refuse the autism label. We need to talk openly about illness, suffering, immune system, regression. Refuse the autism label. call it what it is. Sorry if this doesn't make sense I have been up all night with a screaming child.

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