Do Acceptance and Accommodation Equal Surrender?

I agree, a multi-pronged approach is what is necessary. There is also the need for a LOT of pettiness to be set aside, something that will be exceedingly difficult to achieve given the passion on both sides of the vaccine issue.

Because comments were closed, I never got to respond to a response to a comment of mine defending use of the term “damaged” to describe the belief that a person was harmed by an event (such as vaccination or, as another example, stroke). Because of the example I used, the respondent equated it to always referring to my mother-in-law as “my stroke-damaged mother-in-law.” However, I would suggest that if I were writing on a website that was attempting to promote minimizing the damage caused by strokes, then referring to my mother-in-law as “stroke-damaged” would be appropriate since its use would be more factual and legal than intentionally derogatory.

Since the respondent to my comment is reading the comments about “vaccine-damaged children” on a website that is, by and large, seeking to reduce the potential for neurological damages caused by vaccines, she should fully EXPECT to encounter such reference frequently on that website. Her belief that the cause is not accurate (which is her perogative) does not change the writer’s intent is using the term.

I think keeping some pressure on vaccine manufacturers to be safer about how they administer their product is only prudent – regardless of whether one believes they cause autism or not. I for one don’t want to ever give them free reign to put just anything into our bodies on the mere premise that “it’s always good for us?” Similarly, I don’t want to give food manufacturers free reign to put just anything into the food we eat or to industrialists to put just anything into the air we breathe or the water we drink. Do you?

“If you believe that autism, in essence, has always been here…. then acceptance and accommodation are precisely what’s needed most (along with programs and services to build abilities, create opportunities, and support independence).”

Actually, history should tell us that fewer programs and services would be exactly what would create more acceptance and accommodation. If autism was always here in the same frequency it is today, then obviously our ancestors did a far better job of accommodating people with autism into their daily lives, since they weren’t “diagnosed” as having problems significant enough to warrant a multitude of special programs, teachers, group homes, and institutions. IF they were always there, than many of them held regular jobs, married and had children, went to church (without getting punted out of the building), drove cars, etc. etc. without society every singling them out the same way they do today. If anything the level of acceptance has gone down as the numbers of diagnoses and programs supporting those diagnoses has increased.

Typos – “IF they were always there, then many of them held regular jobs,….. without society ever singling them out the say way society does today.”

There’s not been one article at AoA that I have ever agreed with and this one included, by the same person who promote that autism tsunami and that catastrophic cost. That’s why I don’t visit AoA site and it’s rather annoying to see it else where than that site and it’s almost like promoting that site, and an article which clearly denies the presence of adults with autism. But then looking on the bright side, I can have an opinion here where as I cant on that site, right?
Of course awareness, supports and accommodations isn’t ‘unintentionally – making it ok to CAUSE autism’ and that’s insulting to all those who try to make a better world for those who have autism, or any disability. That would be like saying ‘don’t offer or fight for your child to have supports and accommodations, or you’ll look like you’re contributing to the causes of autism.’ Surprising that’s the message from AoA, isn’t it?
Of course this isn’t even valid thinking. A thousand people can ‘demand’ answers, and yet it could still take many many years to find those answers and that doesn’t even address prevention or those who already have autism. This really isn’t an ‘issue’ and as much as anyone at AoA demands as they always tend to do so, it’s hard to believe all that came from an instructive video for a library. Did anyone expect any applauding training, programs and services to meet the needs of teens and adults with autism on that site?

I think Professor Temple Grandin who has AS has it right:

“Asperger’s has always been here, that’s the milder autism — ‘the nerd’ is the common term for it,” she said. But there is an increase in severe autism, she said, “where a child seems to be normal until about 24 months, where he is developing speech and then loses it. That’s called regressive autism, and it’s on the rise.”

Theories on autism abound and are often controversial — and the diagnostic criteria for the syndrome have widened.

Grandin believes the syndrome is largely genetic — but like others knowledgeable about the illness, she doesn’t know what is causing the increased prevalence.

“There’s a lot of talk about vaccine reactions, and I’ve talked to enough parents where I think that is a factor,” she said. “In some of these cases I think some sort environment insult to the brain” — such as heavy metal poisoning — “may be a factor.”

http://www.news.cornell.edu/stories/March07/Temple.Grandin.html

I have Erb’s Palsy, which has a reported incidence of 0.10% in the U.S. and as high as 0.30% globally, including developed nations. While not the 1.0% incidence of autism, it is considered a high-incident medical complication.

Erb’s is caused by complications during delivery generally results in both nerve damage to the brachial plexus and a slight limp. I limp and my right arm is paralyzed from the Erb’s Palsy.

Not a very good example, then, asking about obstetricians unintentionally causing damage during complicated births. It happens frequently and is often an emergency choice due to the positioning of the infant at delivery.

We expect doctors and science to be perfect. It never will be. Life happens. My parents didn’t sue, didn’t file complaints, didn’t demand I be repaired with some magical solution. I’m paralyzed. That’s life.

The doctor took his own life, later. Sadly, obstetrics is even more high pressure 40+ years later. Anything short of perfection, even when beyond any doctor’s control, leads to lawsuits and accusations of negligence.

Shouldn’t every Erb’s Palsy student receive accommodations? We’ve decreased the incidence by three-fold in the U.S., but we cannot and will not remove all risks. Birth is dangerous.

Likewise, I cannot imagine a time when autism is eliminated. (Which “autism” is also a question for me.) There will always be children and adults with autism(s) in need of services and accommodations. If we can’t prevent a physical injury, I don’t know how we hope to prevent random genetic mutations, hereditary genetic risks, and whatever else might contribute to the dozens of autisms.

We need the accommodations and supports. We will for another century, and probably for much longer.

CS – is there an argument AGAINST people with Erb’s Palsy receiving accommodations?

I don’t know anything about the disorder, but would assume that the symptoms would be sufficient to warrant a variety of supports and accommodations, much like someone would receive if they had CP, or were blind, etc.

Lisa

I was using your example. Since the “ideal” is the total elimination of Erb’s and the “limping” caused (unintentionally) by doctors, then providing supports by the implied logic of the AoA post is that supporting my physical injuries might dissuade Erb’s research.

My Erb’s Palsy is what it is. My HFA diagnosis is what it is. Both need supports.

We must accept that services will always be needed and that providing those services does not encourage some form of complacency.

Is there really an argument against people with autism receiving accommodations? Of any disability?
The example was quite good. What would one have to do with the other.

Temple Gradin is a great example of why people with disabilities need supports and accommodations, and the outcome of those. She also doesn’t have asperger’s; she has autism. She was diagnosed with autism in 1950, and the doctors told her mother to put Temple in an institution. She was the first parent to really start the idea of keeping your disabled children at home, not send them away. The HBO Temple Grandin movie, which she helped with, depicts her life very well. She also said “if I could snap my fingers and become nonautistic I would not do so. Autism is part of who I am.”

Temple Grandin was diagnosed as “brain damaged” in 1947. She indicates that she was diagnosed with autism around age 4. Therefore, her autism diagnosis was made under a different understanding of what exactly autism vs. Aspergers are than they are understood today (that is, she was diagnosed before the DSM-IV was a glimmer in the APA’s eyes).

Donna Williams writes on her blog that:

“It was by age 3 and a half that Temple attributes gaining comprehensible articulation and speech, play and socialisation to speech therapy, intensive interaction with nannies and her younger sister, and nursery school. By age 4 she had fluent comprehensible speech.”

How she would have been diagnosed as a child under the current DSM is, as it is with all forensic diagnoses, speculation.

Ms. Grandin was born in 1947. Back in the 1950’s (and earlier) the diagnosis would more than likely had been MR and at age 2, she was Dx’d as brain damage but even back then, there was a margin for a misdiagnosis. She would be a great example of that, as well. Asperger’s wasn’t an option in those days however of what we know of asperger’s of the current criteria, if there is speech delay, it isn’t asperger’s. So Ms. Grandin clearly didn’t have asperger’s, she never expresses that she does and on a Jane Pauley interview with Ms. Grandin and her mother, she clearly explained the difference and why she did not have asperger’s. By age 4 she had fluent comprehensible speech is speculation. At age four, Ms. Grandin began talking, and making progress is a more accurate account in many readings about her.

Temple Grandin said “if I could snap my fingers and become nonautistic I would not do so. Autism is part of who I am.”
*************
Of course she wouldn’t change a thing, why would she? Temple Grandin is a brilliant women and has a lot to offer the world. But, do you think the young man seen in this video would like to change a few things? There are different degrees of autism; mild to severely disabled.

Broken Nights and Lost Days: Inside World of Severe Autism

http://www.youtube.com/watch?v=Iu7C5clA4q0

“If you believe, however, that autism is a man-made, vaccine-induced epidemic”

I really wish people would stop automatically equating the idea that autism is an epidemic and man-made with vaccines causing autism.

There are many possible other environmental factors that could be contributing to the rise of autism and the whole vaccine issue does nothing but polarize the discussion.

If autism does have a large environmental component – as the latest twin study suggests – then we could very easily be looking at an man-made epidemic of autism that has very little to do with vaccines.

MJ – if the argument is that “autism, in some cases may be at least partially caused by one or multiple unknown environmental elements,” Ms. Dachel’s argument is much less compelling than if her focus is specifically on what she believes to be a known, preventable cause.

Here’s my reasoning:

1. we all agree that there’s a good likelihood that in at least some cases an environmental exposure could well contribute to autism.

2. we don’t know what that exposure might be in any given case.

3. since we don’t know who might be impacted by an unknown environmental exposure, or which exposure(s) might be relevant to whom, we really can’t “demand” a biomedical response. What kind of response would be appropriate? For whom? We just don’t know.

4. since we’re so much in the dark on so many issues, the idea of NOT providing supports and accommodations because it takes away from prevention and cure makes very little sense.

5. if, however, like Ms. Dachel, you believe in a vaccine-induced autism epidemic, the argument DOES make sense (at least to some degree). If you know the problem, and you know the solution, you can reasonably demand action!

Lisa

In my opinion, Ms. Dachel’s argument applies in either case.

If autism is environmental then our first priority is to locate these causes and eliminate them. It doesn’t really matter if the causes of are known or not, that doesn’t change the fact that something (or more likely somethings) is triggering autism in children.

A perfect example here would be the response to the epidemic of childhood obesity. No one can point to a single factor and say that is causing all of the obesity. But the response to that environmental epidemic hasn’t been to come up with services to support the obese and help then deal with the health problems later in life (although I am sure there will be some of that). No, the current solution is to go find what is causing the epidemic and stop it.

In a similar fashion, if autism is environmental, the solution is to find the cause(s) and put a stop to them. We can’t demand a specific biomedical response to an unknown but we can demand that the relevant medical and governmental bodies start funding more research that looks at the biological aspects of autism and tries to find the the environmental triggers.

And at the same time, we have to provide services and supports to those who are already effected. There are currently more than enough children with autism making the slow march to adulthood and enough young adults to justify the services. Even if we found the cause(s) tomorrow, there would still be hundreds of thousands of people who will require support for the rest of their lives.

Both research and services are a priority, but we can’t let the focus on services make us complacent when it comes to finding environmental causes of autism.

“5. if, however, like Ms. Dachel, you believe in a vaccine-induced autism epidemic, the argument DOES make sense (at least to some degree). If you know the problem, and you know the solution, you can reasonably demand action!”

The action would be simple. Choose not to vaccinate. However the problem, and problem with the solution is, there is no explanation why the majority are not vaccine-injured-autism so no one really knows what the problem truly is so no one can really demand anything at this point, except for the anti vaccine sites such as AoA which promotes anti vaccination and expectations of science which I’m sure if they (science) had an answer to the problem, we would soon have a solution and then could demand action.

Sandy – I did say “if.”

Truly, I do think there’s some painful logic to Ms. Dachel’s argument – but ONLY if one believes that autism is an epidemic which can be traced to one or two very specific, identifiable causes which can be acted upon.

I am assuming, based on Ms. Dachel’s other writings, that that is her belief.

I don’t share her belief, but I can still understand her thought processes.

Lisa

Multiple causes could also be acted upon, though perhaps some more easily than others.

That highlights one of the big problems with the conversation about vaccines today. Not vaccinating is presented as the only alternative.

For example, in many mainstream news stories, we have the mainstream “experts” assuring us that vaccines are safe, and then parents who don’t vaccinate their children are presented as the other side. What about the parents who did vax their children and watched their children suffer adverse consequences? What about the scientists and doctors who are figuring out causation and treatment?

When people report complications from surgery, is not having surgery presented as the only option? No! Much science and medicine are focused on figuring out why complications occur, who is susceptible, how to prevent complications, how to monitor for complications, and how to treat them.

I do think that we are giving too many vaccines, but there is a lot more to it than that.

Really? Anne Dachel of AoA? AoA is a mean-spirited website Anne’s piece is condescending to autistic individuals. Acceptance of autism doesn’t mean surrender. You only surrender when you are at war with something. Progress is not limited to mean, fear-mongering parents of autistics.

Dana~ you have a nice web site with some nice entries in it as well. It’s a nice example that the ‘ tsunami’ may already have hit long ago.

Again, this assumes that all those children being labeled as autistic actually are.

Again, on our board — and we have hundreds of parents on our current board, and had thousands on our earlier board — we find that many/most of the kids who were originally labeled as autistic aren’t autistic at all, and this becomes clear as they age. So they don’t need help being self-sufficient as adults.

Most of the children, in fact, are pretty self-sufficient by the time they hit third grade, much less adulthood. But because of their difficulties as toddlers, preschoolers and even in K and 1st grade, it’s deemed by those gathering statistics that they’ll need help all their lives. And nobody that I can see is bothering to correct that list as kids age.

From my experience, much of the autism “epidemic” numbers are driven by the schools. I know of plenty of parents who have outside Dxes of language or other disorders from skilled clinicians, but the schools try to talk them into (or downright bully them in hours and hours of IEP meetings) an “educational autism” diagnosis. Schools like this Dx because they have systems set up for it, and they don’t have to do the INDIVIDUAL part of the IEP process.

Jodifla, I don’t understand your point.

What is “really” autism? If the kids are diagnosed with an autism spectrum disorder, then they’re “really” autistic, at least for now. And I don’t think I’ve ever met ANY kid who is self-sufficient in grade three: they’re only 8 years old!

I personally have never had experience of a school bullying a parent into an “educational autism” dx. I know it is possible in some places to GET such a dx, but of course it is not a medical diagnosis. In the states where I live, there is no such thing as an “educational diagnosis.”

I’m really not at all sure what you mean when you say “the don’t have to do the individual part of the IEP process” when the law requires that the IEP be designed for the CHILD and not for the diagnosis.

I suspect there may be some info you’re missing relative to special education law and the diagnostic process.

Lisa

Well, it can be said that the schools drove the numbers up for ADHD, and they still do in schools today. Some states can term an IEP without having a medical diagnosis. They do it in the state where I live. My sons first IEP was termed autism and he never had a medical diagnosis. The autism rates here are suppose to be the highest, 1:81 Even if a child does have a diagnosis, in any state it doesn’t automatically get an IEP. The child has to qualify under the educational criteria per state. I believe school districts have been assessing “autism” in children since 1992, under the eligibility category under IDEA.
Because of where the autism rates are obtained from, no one can really say of those numbers, who has a medical diagnosis and who has an educational IEP only.

I can’t recall the number, but actually in many states you don’t need a medical Dx of autism to get that label in school. My state is certainly one of them. Instead, what happens is your child’s IEP team basically just comes to the consensus that your child fits the educational autism label, EVEN if you have four other assessments saying otherwise. EVEN if they the professional THEY brought in to evaluate says otherwise. Basically, it’s autism label by vote.

And I’ve not only experienced this IEP treatment firsthand — more than once, in fact — Ive talked to countless other parents with the same experience. Take the autism label, or we’ll withhold services from your child.

And of course IEPs are supposed to be individualized, but I’ve found they are pretty standard unless you as a parent really look at them and demand that they fit your child. In some schools, the special education is OUTSOURCED so the person comes in, without ever sitting in an IEP meeting, and just starts the most generic of therapies based on whatever the label is.

This can be devastating for a child with a language disorder, as the same treatments don’t necessarily work and can make things much worse.

So Sandy, I’m thinking you live in Oregon or Minnesota?? It is astonishing when you look at the numbers of autistic children in some states vs. others….and most of it goes to what they count as autistic (and it does not have to match the DSM).

jodifla~ quite impressive to narrow the state to 2, to say the least! I live in MN. It was on the news due to the controversy of it, but over all, school districts have been assessing “autism” in children since 1992, under the eligibility category under IDEA, due to IDEA, they’re allowed to. The educational label does happen in many states and the child doesn’t have a diagnosis, and it was a big topic at one time: parents cant say their child really has autism based solely on an educatioanl assessment and the autism rates are flawed just based on this and the fact the rates often come from the public educational IEP’s.

Another great topic would be that out-sourced.

Sandy — In my experience in our state, many parents absolutely don’t understand the difference between the school label and a medical label, or have ANY idea that the school might be wrong.

To protect my son and get him what he needs, I’ve had to be very proactive, and arm myself with as much knowledge as possible, which is why I knew about the incredibly discrepancies among the state’s educational autism rates. And pretty much, those rates are total fantasy, from a scientific standpoint.

Anyway, for us to be “surrendering” to an epidemic, there needs to be an actual epidemic. And if a child is somehow autistic at age 3 but not autistic at age 9, or if experienced Doctor A says child is not autistic but School Psychologist B says child is “autistic impaired” then the system is pretty messed up.

Whether language impaired, Downs, autistic, cognitively impaired….all these children should be included in schools, churches, jobs…everywhere in our society. This new inclusiveness should be celebrated, not railed against as some sort of plot to sell vaccines.

Actually, I am disgusted by the amount of money spent promoting drugs that contribute to Autism and Autistic like problems. Health and Welfare paid for a drug that did nothing more then aggravate my condition and mess up my life, yet now they are cutting needed services to make up for the excessive amounts being spent on drugs. Autism Speaks is run by drug companies and pays for a lot of research on how to profit off Autism. Drugs lower glutathione and increase Autism risk. I do not think throwing money at the companies that cause the problem is going to make things any better for us. Autism Speaks does not speak for me.

I think Ms Dachel wrote an interesting piece and laid out her reasoning very clearly. I also think that Lisa, although disagreeing, made her point in a way that is also easily understood. Unfortunately, most of the commenters here have digressed to the point of no return. Either way, nobody is saying services for the already affected should not go forward. Ms. Dachel is concenrned, as am I, that People will get caught up in the service end and ignore the cause and therefore, the epidemic will never end and we will have an even harder time-impossible time–serving so many people on the spectrum. It’s a truly legitimate concern and frightening. Vaccines, freeways, old fathers–whatever one thinks—it needs to end. Of course, if you think there have always been classes just for autistic children in schools, separate classroom for those with peanut allergies, autistic children in your family, the family down the block, the child in the grocery store etc. then you might as well return to watching your tv reality show. Thank you Anne and Lisa.
Maurine Meleck, SC

Ahh but Down Syndrome is slowly disappearing. A very large percentage of parents choose abortion when testing shows Down Syndrome. Will research give us a test for possible Autism? Will parents destroy those babies too. Until the cause is confirmed by those in power, children not born with Autism will continue to be damaged.

First of all, this sad article by Anne Dachel doesn’t surprise me, but it does upset me. Services are not giving in; they are giving lifelines to people who need them. The people at Age of Autism just want to have people with autism seen in the worst possible light, not making progress, so they can scare people into believing vaccines are evil. They would even caught off services to see that happen. Talk about the ends NOT justifying the means! Every parent who writes on their website talks about how they suffer, how their kids smear poop all over their enormous houses, how unbearable their lives are. God, I know so many parents with autism; none of us feel that way about our kids, even those with children severely affected by autism. Sure its hard, but we see amazing sweetness and innocence in our kids. Moments of pure grace. Sometimes I think the parents at Age of Autism are the ones with the “disability.” I think their visions of their lives are so different than the ones they expected, the ones they believe they deserve, that they want someone to blame. Second, Lisa, thank you for another brave and truthful piece of writing. Providing support and services for people who are struggling for any reason is simply humane. Any argument to the contrary lessens the humanity of such people. I think Lisa hit on the most important point – the enormous schism in our community of parents. We cannot agree on the cause, and so we are not able to come together on how to help our children. (Although I can’t fathom how withholding services “helps” anyone).

Who said anything about with holding services?
How can you possibly know what the parents on AOA are thinking? We love our children as much as you do, madame.
You cannot speak for others. I can tell you that we are trying to recover our children so they can marry, have jobs and possibly have their own children. We are also trying to recover them with bio-med because, in case you didn’t know, children with autism have very unhealthy bodies and will be vulnerable to many diseases as they age, including cancer. Or don’t you care?
MM

I hate to tell you, but you just got done telling someone ‘You cannot speak for others’, and you just did that exact thing:
“children with autism have very unhealthy bodies and will be vulnerable to many diseases as they age, including cancer.” That is talking about all children in general, speaking for others. Where is the proof of that statement? Where is the proof vaccines caused that? You just gave a an example of a scare tactic, which was mentioned AoA is known for. Now will people think those with autism have a higher chance of what disease, including cancer??? In case you didn’t know, my child with autism IS healthy and so are many that I know. I am amazed such a statement can be made.
This is why I avoid AoA.

re: “we see amazing sweetness and innocence in our kids. Moments of pure grace.” That is true for so many AoA parents as well.

Then why don’t they ever write about it?????

The science has shown thus far that autism is genetic in its basis, and perhaps augmented by PREnatal environmental factors. There has been no credible evidence linking autism to vaccines. And the folks at Age of Autism should know that many parents really resent the constant, tired insertion of vaccines into every discussion. Until we find the source and perhaps a truly safe, effective therapy to help our kids improve, we have to argue FOR services and support. And we do that by reminding the world of how amazing, and wonderful, and complete our children are with autism. And how by the grace of God, their lives are just as sacred as anyone else’s.

So often we hear vague declarations that “The science has shown…” with no citation of any science.

Maurine, you innocently include vaccines with the other possible contributors to autism: age of parents, anti-depressants, etc, leaving out that the one that has been proven to not be a contributor is vaccines. And as far as preventing autism, that seems to something that can only be done prenatally. Let’s just hope that we can convince the world that there is virtue and value in diversity before every baby is put through a prenatal screening, so only the most “perfect” can be presented to parents. That I think will truly be a sign of the apocalypse. I read a post from a parent at Age of Autism the other day: a parent writing that because she or he had a child with autism, the couple went through genetic screening. It showed nothing, but the parent wrote since the couple can’t “bear” the thought of having another child like the one they have, to be safe they are not having another child anyway. That post made me cry for that child who is seen as so deficient by his or her parents.

I think the research is pointing towards “autisms” and many pathways to the current DSM DX including parental insistence for treatment, environmental factors, genes, definition, and a combination of all of it. The researchers I speak with at UCSD feel that there is an increase in incidence (despite Schreibman’s book in 2006 saying different) but also an increase in prevalence. The question that seems to be proposed here however is focusing on any other issue but causation and prevention amoral. I think if there are clearly so many paths and such a wide spectrum of difference the answer has to be no. We have to do it all.

Again, using “autisms” is just another excuse to exonerate unsafe vaccine issue.
Where were the autisms before the 1990’s?

Using the term autisms, in my opinion, has absolutely nothing whatever to do with vaccines, one way or the other.

In fact, it is a good way to reflect the research, which shows that there are at least several well-known causes of what we now call autism spectrum disorders. It is also a good way to acknowledge that people with ASDs have a very wide range of abilities and challenges.

Lisa

I think a couple studies already exonerate vaccines of causing autism. Why is it every child who had the same vaccine schedule doesn’t have autism? Explain why vaccines target one gender more than another? And how does people asking for awareness, acceptance and accommodations have to do with ‘no one is worried about autism, will anything ever really be done to address it’? Who ever thinks if you do one, you cant do the other?

No one can inflict causes of autism and vaccines unto others without answering those questions, to start with.

Maurine,
Sandy is right. Those are scare tactics. My girls are healthy because they eat right, enjoy their lives, and are loved and valued as they are. My girls have made the same “recovery” progress I read about on your website and others through educational interventions, opportunities to try new things, love, patience, maturity, and time. They have never had to suffer the trauma of chelation, IVIG blood transfusions, hyperbaric oxygen chambers, or any of the other invasive procedures you advise. When you start with acceptance of the child you have, then you can help them evolve gently and lovingly into the best person they can be. And guess what, they grow to be happy people with their parents aren’t lamenting their fate and wringing their hands over the tragedy of it all.

MomofTwo, to be fair, while I agree in principle with everything you’ve said, plenty of parents do all you do and do NOT see the results you’ve seen.

From what I can tell, progress and development with autism seems to be a bit of a crap shoot. Sometimes kids who are very severe as toddlers do beautifully while kids with all kinds of strengths develop co-morbid mental illness and other issues and have a terrible time.

One issue we all run into is the propensity to use our own experience as a measuring stick for ALL experience. Our son, like your girls, is happy and healthy and doing well. But I suspect that that’s ALMOST as much good luck as it is good parenting!

Lisa

When we’re talking about interventions, yes it is really a crap shoot. There’s no medical explanation as for why ABA works for some but not all, but even still the child still has autism.
The scare tactic was: “children with autism have very unhealthy bodies and will be vulnerable to many diseases as they age, including cancer.” Which really has little to do with autism and recovery from autism, or vaccines for that matter. Since there’s a denial of adults with autism, one wonders where ‘as they age’ comes from.

@HappyMom

Congratulations that you have 2 healthy daughters.

But does that mean that other parents should ignore medical issues and just love their child with Autism?

I love my son, but that does not mean that I am not going to treat his mitochondrial disorder or his inflammatory bowel disease. It would be child neglect if I did not.

He has self injurious behaviors when he is in pain. If I thought” educational interventions, opportunities to try new things, love, patience, maturity, and time” would cure his ulcerative colitis he would be dead by now.

There is talk on this blog about several different autisms, both genetic and environmental, but I can see that I would be attacked by you because there is no room in your head to believe that these kids can be in pain or sick.

This poem says it best…..Sylvia Plath feared her children would inherit her misery and dark view of the world. She knew the danger inherent in a joyless mother.

“Child”

Your clear eye is the one absolutely beautiful thing.
I want to fill it with color and ducks,
The zoo of the new
Whose name you meditate–
April snowdrop, Indian pipe,
Little

Stalk without wrinkle,
Pool in which images
Should be grand and classical

Not this troublous
Wringing of hands, this dark
Ceiling without a star.

Sylvia Plath

Her poem says what?? Is somebody on this blog a joyless person?? I don’t get your point. It has nothing to do with Anne’s piece or autism.

Encephalopathy and children with autism have very unhealthy bodies and will be vulnerable to many diseases as they age, including cancer has nothing to do with Anne’s piece or autism, either at face value anyway.

Lisa, You are right, but to be clear, I never said my girls no longer have autism; I just said they have made the progress that the biomedical advocates describe: better behavior, more communication, etc., and they made those strides without any interventions that could potentially have harmed them physically or emotionally. And, yes, there is luck involved. But I think the one thing we can control is our attitude towards our children, and the atmosphere we create, whether it be one of acceptance and peace, or one of melancholy and regret, does affect our children’s emotional well-being and therefore their outcomes to some extent.

Momof2 – quite agree.

Lisa

Lisa, you wrote
“What in the world is wrong with both/and?”

BECAUSE THE RESEARCH DOLLARS don’t go to “Both /and”.

You also write “So her concern is not with serving the needs of people with autism, but rather with the possibility that by serving those needs we are signaling surrender.”

Unless you can give us the exact quote from Ms. Dachel please acknowledge that this is YOUR OPINION.

You could start the sentence with “I believe” or”It is my interpretation” but to put words in her mouth is disingenuous.

JADad – neither the library program described in Ms. Dachel’s blog post nor the many, many other programs from movies to YMCA’s to summer camps are funded by research dollars. In fact, they have nothing to do with research. Which, I believe, is in part Ms. Dachel’s point.

As regards my opinion vs. Ms. Dachel’s, I can only say that she has kindly noted that I did do a good job in summarizing her position.

Lisa

Okay, first of all these posts seem to be in a strange order, so I am a bit confused.
First of all, JustaMom, of course if a child is in pain, you investigate why with reputable doctors. My girls both had reflux and ear infections in their early years. Of course, I followed up with specialists to regulate all that. Now, with healthy diets and probiotics, they are doing much better. What I was talking about was the invasive, unproven treatments that promise cures, drain bank accounts, and torture children and parents. I hate it when parents assume because I am cautious, therefore, my children must be not nearly as affected as theirs. Not true! I just choose to look at autism differently. How old is your son? My girls are worlds better now at 12 and 14 then they were in the early years. I am so glad I was so busy helping them I didn’t read blogs and websites, or I may have fallen prey to the Jenny McCarthys out there.
The poem crystallizes what I saying about how our perspective create our children’s worlds. I don’t think it needs explanation. If you see your child as damaged, you may be their biggest obstacle.

HappyMomofTwoGirls~ The reason why your comment ended in such order is due to how this site has comments. When some one comments above, it changes the order and the number of every comment below it.
The thing is, so many people try to link many medical disorders and conditions as only being associated of those who have autism and talk about the different types of autism due to cause. My niece who doesn’t have autism had tons of ear infections where as my son had 2. My son also has acid reflux but so does many of my sister’s who don’t have autism. No other modern medicine has ever been blamed for so many illnesses and medical conditions as vaccines have. I have no idea what caused my child’s autism, but I do know what didn’t cause it.

HappyMomofTwoGirls, you are incredibly judgemental. There are plenty of loving joyful parents who treat their children’s medical conditions and also love and enjoy them for who they are. Honestly, you seem more hostile than happy.

Actually, the word ‘Surrender’ related to AoA makes it a hostile topic right off the bat. Not sure if Ms. Dachel used the word in her write up or if it was an attention grabber added. The meaning of that one word is what set the tone.

As far at Olmstead and Offit, and Wakefield and Kirby, after reading them all, the only one who seems credible to me is Offit. I do not believe he is after money; he has enough, and works long hours. He could easily have retired to some tropical island. He withstands death threats and constant attacks. He went into to medicine to help people. And the studies prove him right.
I had a student this year fighting yet another bout with leukemia. He is about 6 inches shorter than his peers, never went through puberty, because of his cancer treatments. He wanted to keep going to school, attend his junior prom because he fears his time is limited. His parents were fearful he would get sick because we have parents in our district who refuse to vaccinate. How fair is that? With no proof that their fears are founded, they don’t vaccinate, and this kid doesn’t get to go to school. We don’t live in a vaccum. When do someone’s rights to believe in the disproven finally have to give way to the greater good? When does the kid with cancer count in this equation?

Twyla,
If they are happy and joyful, why don’t they ever write about that on AgeofAutism? Instead they all write about how impossible their lives are with their “vaccine-damaged” kids on the spectrum. Am I judging that? Yes, because I feel sorry for kids whose parents see them as so burdensome and damaged. And if I seem angry on here, that’s because I want the world to know that my girls are no less valuable or whole because of autism, and when children with autism are called damaged, it certainly does not sound that way.

Whew! went to bed and woke up with 35 new comments on the site!

In answer to a couple questions:

Yes, I wrote the headline in my own words. The purpose was to crystallize the concept in the blog. It wasn’t to generate anger. I believe it does a pretty good job as a header, since it gets across the idea of the blog in just a few words. BTW, there is a question mark at the end for a reason.

Re the squirrely nature of this threaded comment stream, it’s an About.com thing. I personally find it very annoying, but I can’t change it.

You should also know that occasionally if you hit “reply” rather than “leave a comment,” the system will tell you your email address isn’t accepted. It does it to me too, and it’s very frustrating.

Please know that I have NEVER blacklisted ANYONE from this blog! Even if I end a thread because it’s getting too acrimonious, everyone who has commented on that thread is welcome back on another post.

One last point: the WordPress system is set up to reject any post that has a long list of URLs, since it’s usually spam. It will also tell you that a post longer than 2000 words is too long. You can easily circumvent by posting two separate comment, and breaking a list or comment into two parts.

Lisa

Lisa:

Thank you for explaining how this site works and how to get around your “e-mail address isn’t accepted.”

Happy Momof 2 girls;
i think it is always easy to judge someone if you are not walking in their shoes. As you say, your children are thriving.That is wonderful. Perhaps however it is okay to spare some compassion for those whose children are not thriving?
If you are not dealing for example with children who are hitting and injuring themselves, then you are not walking in someone elses shoes, whether or not your child has the same diagnosis.
(If your children are currently self injuring, then, respectfully, I would probably politely disagree with you that they are “thriving”).
I agree with you that loving and accepting your children as beautiful individuals is deeply important.
But I would respectfully disagree with your assumption that anyone who dares to actually talk about the challenges their children face does not “love” their children.
It used to be that special needs kids and their challenges had to be hidden away.
I was recently talking with a friend about an issue my son had with being bullied( and there was certainly a feeling from some in the school that they wanted me to shut up and pretend it was not happening; others were kind but did not know what to do about it) .
However, ignoring the problem would not have been fair to my son.
We ended up moving schools, but my friend had some interesting comments to say. She felt that had the school approached things differently with the children having an explanation at the begginning of the differences and difficulties my son faces ( which include finger deformities, some hearing loss,and fine and gross motor problems as well as difficulties with speech) the outcome would possibly have been very different.
it can be hurtful to read someone stating that you “must not love your kids’ if you dare to talk about the challenges they face.

Thank you Hera.

I think sharing and being non-judgemental of others is the only way to learn from each other.

Saying that people are torturing their children and not loving them because they are trying to find out what is wrong medically is extremely hurtful.

What was said was: ” What I was talking about was the invasive, unproven treatments that promise cures, drain bank accounts, and torture children and parents.” people should try and twist the meaning of that.

AoA rarely does write about positive things about children with autism. Ms. Dachel herself generally all over the web and on AoA makes comments of future doom and fear of catastrophic cost and a tsunami of children approaching adulthood. The message gained is taxes will raise and take cover, a tidal wave is coming.

First of all, for anyone from Age of Autism to accuse me of being judgmental is ridiculous. I was sworn at, called horrible names, and judged as subhuman when I politely disagreed in the comment posts there. So spare me the “can’t we all just get along,” sentiment. Let’s at least be honest, that Age of Autism folks have NO desire to get along with those who have different opinions.
Secondly, as Sandy said, I was referring to treatments that are unproven and potentially dangerous, like chelation. I would say the same thing about parents withholding good medicine for “religious” reasons. Children are human beings, not ours to experiment on to make them into what we need them to be. And all human beings have the right to voice concerns about the way children are treated in our society.
And as Sandy so eloquently states, when Ageof Autism makes dire predictions and ONLY tells about the hard stuff, like poop smearing, it makes all of our kids look impossibly hard and therefore by the greater world, unworthy of funds or care.

Well, if the sentence is read right, it’s those offering unproven treatments that promise cures, which then leads to the drain bank accounts, and torture children and parents. This of course is nothing new, it’s been called false hopes and people going bankrupt and promises broken. It was never said that parents were the ones actually torturing their children. And I am sorry, it is dread when people from AoA state “children with autism have very unhealthy bodies and will be vulnerable to many diseases as they age, including cancer.” Why would anyone then bother if the end result is the doom of cancer. I have yet to read from Ms. Dachel or any one at AoA that children with autism ever progress. The reason why I don’t visit that site is they are depressing and offer no sign of hope and again, it’s annoying to see a topic here based off that site. It’s offensive to anyone who avoids anti vaxxer sites.

HMofTG, you did not just “politely disagree” at AoA, you posted a comment in capital letters expressing a lot of anger, such as about “MORE B(bleep)LL-SH(bleep)T ARTICLES”. ( I had to censor to get past this sites filters.) It seemed like you were deliberately trying to get people riled up so that you could play the victim. You actually received quite a few thoughtful polite responses. I don’t understand your apparent obsession with Age of Autism. I don’t like Orac’s blog, so I don’t read it, and I don’t bother posting comments about it. I pretty much ignore it.

And, you seem to hold me responsible for whatever you don’t like about AoA. Although I am a fan of AoA, I am not an editor or even a regular contributor. Here on Autism.About.com I am simply a mom expressing my individual views. I often cite articles from AoA as I find them to be very interesting and informative, but I don’t control their editorial policies, and I am not their representative.

Like I think Lisa said somewhere, autism is a broad spectrum. Some people with ASD have a severe level of impairment, some do not. Some have severe health issues, some do not. Some are verbal, some are not. Some are unhappy, stressed out, and in physical or mental pain, some are not. As parents, we love our children and make the best choices we can in the context of our knowledge and values and resources. There’s no need for different choices to cause animosity. I don’t know why we can’t just share our views and experiences.

Twyla,
I never commented in such a way. The first time I commented I had no idea what the sight was, and I stated that I didn’t believe vaccines caused autism. I went on there because I read Kim’s book. I was called a name I cannot write here. I never used vulgarity in my posts. I was ridiculed and accused of being an imposter. You “knowledge” of my posts certainly means you are more than a casual visitor to AofA. Why pretend that you are not one of their main supporters? And why pretend that AgeofAutism is the friendly, polite site you describe? You know that no one can disagree there without being attacked, which is exactly what happened to me every time I even asked a question.
I am also just a parent on here. This article was about something from Age of Autism, so it is certainly reasonable to post about the spirit of that site and experiences there.

Another issue is, when anti vax sites put out such dread, the public doesn’t separate cause ‘types’ of autism and even then none of us really know for sure if there’s such a thing of cause types. The public generally will look at those with autism all the same, and they do and those sites will always affect everyone with autism because of this. The public wont think about vaccines, they will wonder if that child is a poop smearer, violent and uncontrollable and why bother? If so many children are as totally severe as AoA makes it out to be, with a soon coming tsunami the public will hardly open pocket books and pass laws. Disability programs are the first state funded programs to be cut when there’s budget issues. People who so advocate for recovery and funding for it, many in the public wont want to bother and their idea of recovery will be institutions. Those with those medical issues so talked about will get the on-going medical care they need but they’ll be ‘outta sight’. This is where the idea of ‘demanding’ will get us.
This is why so many people spend so much effort on awareness, to give our kids a better chance than what will be the after math of scare tactics.

Sandy:

So in your book, those that are low functioning and sick, should still be hidden away so the public does not see them and associate them with your child?

That of course is Not what I said. You keep changing what everyone says to evoke an emotional response and it needs to not be allowed and stopped.

My child was diagnosed severe autism, by the way. Not with PDD-NOS, not with aspergers, but with severe autism. My child is not a scare tactic.

Sandy – I have no idea how we’ve gone down the path from programs that include people with autism to the idea that autism leads to cancer.

Autism does not lead to cancer.

Autism is not a degenerative disorder.

Autism is by definition a developmental and not a physical disorder.

Many people with autism spectrum diagnoses do very well indeed, and lead full, rich lives.

Many people with autism spectrum diagnoses do NOT do very well, do not progress very far, and do not lead full, rich lives.

But all this is well-known, obvious info. I can’t imagine why we’re debating it.

Lisa

One from AoA didn’t give the idea, she said “children with autism have very unhealthy bodies and will be vulnerable to many diseases as they age, including cancer.” in the comments here.
I’m glad you were able to make it clear that’s not true.

Peer Reviewed study correlating autism and cancer:

http://www.plosone.org/article/info:doi%2F10.1371%2Fjournal.pone.0009372

High correlations were found between autism rates and the incidence of in situ breast cancer, which is non-invasive breast cancer. By contrast, few significant correlations were observed between autism prevalence and the incidence of 23 other female and 22 male cancers. The findings suggest that there ‘may be’ an association between autism and specific forms of cancer.
Nice correlation.

Lisa, definitely agree; have not heard of autism being related with cancer at all.
HappyMom of 2 girls, I have never communicated with you before we met on this site, so please do not combine my posts with a disagreement you had with unamed? other poster(s?) who commented on a different blog.
One thing I really enjoy about Lisas’ blog is that people of different view points can indeed express them.
I certainly don’t consider you “sub human???” because you have a different view from me. Hopefully you don’t consider all those who disagree with you to be “bad parents”?
I think realizing that most parents are doing the very best they can for special needs children that they love dearly, even if sometimes methods and opinions may differ, can help with communicating between us all.

Maybe Ms. Meleck can share where the cancer info comes from as well as children with autism have very unhealthy bodies and will be vulnerable to many diseases.

Thanks for the link, JustaMom. very interesting and intriguing.(I stand corrected:))

OK, I understand why this has become a referendum on whether A of A manages its comments appropriately. But I think we’ve gotten close enough to blows to say we’ve covered the topic pretty thoroughly.

I’m closing off comments now.

Look forward to seeing you guys on another post – this time with no citations from anyone but me!

Lisa