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Autism Advocacy: Who Speaks for You?

SPEAK TRUTHBy Cathy Jameson

I haven’t always been an outgoing person.  When I was younger I was somewhat shy.  I would avoid raising my hand in class and would steer clear of a crowd if I saw one ahead of me.  Staying quiet, I preferred to be in the background.  As the parent to a non-verbal child with regressive autism, I no longer have that luxury.  I cannot remain silent.  I have to speak up.  I have to speak for Ronan and also for myself. 

When Ronan first lost his ability to talk, I looked to Autism Speaks as a resource.  Founded in 2005, I no longer believe that they speak for me nor for Ronan. 

 

Screenshot from AS’ website, 17 Sept 2015

My son wanders.  He has seizures.  He requires round-the-clock care.  I do my best to find and support groups in the autism community that hold the same values and expectations that I do.  It’s a shame that an organization as large, profitable, and recognizable as Autism Speaks made a statement that once again refused to acknowledge and accept what so many parents have come to discover - that vaccines did in some way contribute to their child’s autism.  Their latest statement reminded me to be careful which groups and which people I pick to speak for me and for Ronan. 

Since my son, who was affected by vaccines and who has autism, can’t speak for himself, I must advocate for him.  I do that with the help of my husband and with professionals we hire to assist us.  Typically, it is I who oversees and ensures that Ronan’s medical, educational, and therapeutic needs are being met on a daily basis.  If something isn’t going well, I have to speak up.  I have to address the issue.  I have to communicate that there is a problem.  Thankfully, the team of people we consult on a day-to-day basis for help and for treatment do whatever they can to assist us.  I value our team’s input and let them know how much they are appreciated as we work toward common goals:  to help Ronan, to teach him useful skills, to bring him to better healthy—because autism is medical, and to bring him opportunities so that Ronan can be as active and as happy as he can be. 

When we’ve gained new people as Ronan moves out of one phase and into a new one, I’ve had to learn to navigate those new phases and new demands.  During that time, I tend to ask a lot of questions.  Some days I’d love to be quiet, but being quiet doesn’t help Ronan.  So I find myself speaking up and searching for answers.  In my search, so that I can better advocate for my son, I have to once again go outside of my comfort zone and look to others for help.  I sometimes have to look beyond my local area for help.

Fortunately, other people, and several national autism advocacy groups, can help.  They are more than willing and more than ready to assist me, my family, but most especially, my child.  

Groups like National Autism Association recognize children like Ronan and parents like me.  I trust them to speak for Ronan.  I trust them to speak for me.  Naa long

When topics, like wandering, has come up in legislation or at the Interagency Autism Coordinating Committee meetings, I know that Wendy Fournier, President of the NAA, will say the right words.  When potential treatment options, like dietary interventions, are being discussed in the community, I know that GR understands how great an impact food has on ones’ health and I trust their findings.  They take it a step further.  GR doesn’t just educate families; they empower families to do more. 

GR’s grant program,  for example, provides resources to qualifying families who haven’t yet gone GR facedown the biomedical intervention path.  Speaking from experience, that path isn’t the easiest one to take.  GR understands that and reaches out provide positive support to families who wish to pursue it. 

Other helpful autism groups exist, but those two have been the nearest and dearest to my heart and to my family’s needs.  NAA and GR have looked to parents like me and listened to what we have to say.  Our suggestions are important.  Our input is valued.  Our families are always the focus.  And our children are in a better place because of it.

Some people on the autism spectrum can talk.  They can self-advocate, they can live, work, and function independently in society.  Other individuals, like my son, cannot and may never ever be able to do that.  Parents and guardians must speak on their behalf.  Some groups recognize that.  The ones that want to help me and who are pro-actively advocating for individuals like Ronan are the ones who get my support.  

I choose to support the autism advocacy groups that understand that no matter how Ronan landed on the spectrum, he is worth their time, their effort, and their advocacy action.  They see him, and they want to help him.  They also see me, and they also hear me.  They’re listening.  They’re doing.  They’re helping.  I know that in their eyes Ronan is valued.  I know that in their eyes I, too, am valued.   

Cathy Jameson is a Contributing Editor for Age of Autism. 

--

Who speaks for you?  Who speaks for your child?  Care to share what groups – local, regional, or national - that have directly assisted you.  We’d love to know which ones have been helpful so that we, too, can praise their mighty efforts.

 

Comments

Amy C

We have lived in the UK, Ireland, USA and Germany over the past 25 or so years.

The country(s) we lived in, their organisations and governments have made little difference to our lives in terms of what support or resources they offered my children.

Many autism organisations we engaged with (mostly in the United Kingdom) were more than happy, during those years to prey on our early vulnerability and squeeze money from us for useless endeavours, including the publication of pity party bumpf they disseminated in replacement for useful information. One of these orgs was the detestable National Autistic Society, closely associated with Autistica, referred to earlier in this discussion.

Autistica, closely linked with Autism Speaks is/was predominantly developed for adults with aspergers.
People like my son are of no interest to these people many of whom suffer from hierarchy of disability syndrome.
They never could speak for my kids, nor would they bother.
Autism Speaks is a reprehensible organisation which fills a conscience void in many unsuspecting people who feel they would like to do something for autistic people, but don't know how (and sometimes why).

As for Dame Steve Shirley, the language she uses to describe autism, more importantly the language she uses to describe the autism her now deceased son Giles had is not only shocking but ultimately damaging to every autistic person on earth and their families.

Here is an example: http://www.dailymail.co.uk/femail/article-2740146/Pushed-brink-suicide-son-loved-With-150m-fortune-Dame-Stephanie-Shirley-one-Britain-s-women-tycoons-But-one-heartache-riches-couldn-t-cure.html

I invite readers to open and read the above link. Coupled with Shirley's beliefs about genetic causation of autism one has to wonder if the Hitler she escaped from as a child didn't influence her in ways that only her subconscious is aware of. Something about her does not and never did sit right with me.

Shirley, together with Simon Baron Cohen and Richard Mills are 3 big fishes in a very small pond in the UK who believe they are on to something "big" regarding autism research.

They spew the same old same old tired and useless theories, spend millions of pounds on genetic questionnaires and research and have unfortunately influenced health trusts and autism/disability charities nation wide into believing the charades they perform.

Shirley admits she wanted to kill her own child. (he subsequently died quite young from an epileptic fit). Her husband's life, she alleges, was ruined by autism, and now she gives millions to genetic research.

Why? What will happen should genes for autism be found?
What will they do with them? I think the tens of thousands of aborted babies who had Down Syndrome know the answer to that dark question. In light of the life she had with her son Giles, had she known he would have caused her and her husband so much strife, what would she have done if she had a genetic in utero test for him all those years ago? Would she have carried on with her pregnancy regardless? Would she have birthed the baby who she says contributed to her mental breakdown? (She still managed to be a successful multi-million pound businesswoman though, involved in computer software design in the 1960s!)It is, as Mr Stone asserted, a real pity she didn't use her smarts to investigate what has really been going on regarding autism and how or why it develops. How can she and the others be so blind and blatantly ignorant? They aren't. They choose to ignore. What motivates them is a mystery to me, but it's not altruism or even natural inquiry.

No charity, person or organisation speaks for my kids or for me. The world of autism is filled with charlatans, do-gooders, ignorant and dangerous shit disturbers, careerists and worst of all, attention seekers. ( many of whom may actually have autism themselves and come with a whole host of un-diagnosed/un-acknowledged problems)

Charity begins at home and the chairs round the discussion table, so to speak, must be reserved for us and our kids, not highly paid "experts" some of whom have autistic children who died long ago, or who are being paid do-gooder fortunes in fund-raised salaries to take credit for our children's accomplishments and lives in general.

I have yet to engage with a charity that cares whether my children live or die. Autism charity equals money. People give to disabled children charities to ease their consciences. Many autism charities (most?) haven't done anything for autism in the last 20 years that hasn't already been done. It's going nowhere and will continue to until they acknowledge the truth about autism. The rest is mostlyu lies and profiteering.

On another note, I would like to say that my eldest son was never vaccinated. We moved around a LOT in his early years and I never got round to it. He still developed autism - non verbal, stimming, LD autism. Non-vaccinated kids will develop it.

The powers that be haven't even studies vaxed versus un-vaxed kids much less kids like mine.

I fervently believe, at least in the United Kingdom that autism will be deemed wholly genetic by a cadre of state sponsored quacks. Once that happens, kids like ours may start to be eliminated before birth. The government and its bottom feeders (many charities). The sinister rumblings about how much our kids "cost" is not only loathsome but scary as hell.
They caused the 'problem' and now they want it (our kids) to go away. With Autism Speaks, Dame Shirley, NAS, Autistica, etc, they continue to brainwash the public. In my opinion there are dangerous times ahead.

Today is Christmas Day and I felt compelled to write this, on this of all Holy days. Pray for your enemies and pray for all of our children and future children that 2016 becomes a year of truth telling, regarding autism. We can't ever be afraid of telling the truth but I believe we need to be working together more, fighting less and seizing all opportunities to do so no matter what obstacles are put in front of us.

God Bless you all


Denise Anderstrom Douglass

Oh, yes, I remember Autism Speaks back then-- my son and ex-daughter in-law certainly remember it. They had hope back then. Yeah, Katie Wright for president!

Skye Barkschat

I completely support this pasrent &-- I see how Auyutism canbnn come from a biological predisposition, being auuygmented by vaccines &- other such pollutants!
If this country could finally recognize Autism as a verifiable disease there will be support & research for it!

Barry

The onset of recognisable symptoms is usually around two years of age and often coincides with immunisation being given.
************

Funny, that onset never happens in completely unvaccinated children. What do your properly conducted studies say about that??


Oh yeah…… nothing. Because that's the one study the industry refuses to do at all, much less 'properly conduct'.

Steve overmen

Warren Gilcrist im sorry but I watched my child go from being able to name off 10 different body parts on a doll head,shoulders, mouth, etc and speak over 50 words to being reduced to 2 words at 3 years old with arm flapping, spining etc. You can spin it on glysophate all you want but after getting a 104 fever and breaking out in roseola after a round of vaccines including the MMR and now going through this I personally know your full of crap.

Linda1

Warren,
Diptheria vaccine was introduced in the 1920s, tetanus and pertussis vaccines in the 1940s. Your condition could have been caused by those or by your parent's or grandparents exposures to those or other environmental toxins. That said, I don't personally think that Asperger's Syndrome should be considered on the same spectrum, is the same disease, as severe autism. It doesn't make any sense that they would share the same etiology. Too many children have become ill and regressed immediately after vaccines for it to be coincidental. Far too many. And William Thompson, senior CDC scientist in the Immunization Safety Division, came forward August 2014 as a whistleblower saying that the CDC knew for more than a decade that their own research showed a clear link between vaccines and autism, but that they deliberately got rid of the data and told the public the exact opposite of what they knew to be true. Watch: https://www.youtube.com/watch?v=jGRjn_gIJw0

"Properly conducted studies.."

Mr PhD

What studies are you citing?

John Stone

I think AS are deliberately using slippery language - they state that the results of unspecified research are clear, but it does not mean that there is not other research or evidence that vaccines do cause autism, or even that the studies themselves that they are citing might contain evidence (ie the results though "clear" contradict the data). It is a formula rather like saying "Doctors say..". It may be a statement that is (a) impossible to deny (b) of no value. It is the 2010s version of 1950s bad advertising copy.

I wouldn't buy a used car from them.

Warren Gilchrist PhD

Where were the mass vaccinations in 1946 in Australia when I was born (I have Asperger's Syndrome)? What they did have was masses of DDT and other chlorocarbons being spread around. Now we have glysophate (in "Round-Up) being used in every neighbourhood in every country. This is a proven cause of birth defects (see WHO report). Properly conducted studies show that autism is a congenital condition and not caused by anything during the child's life. The onset of recognisable symptoms is usually around two years of age and often coincides with immunisation being given. Epidemics of deadly diseases are far worse than a condition which can be helped.

Researcher

For Autism Speaks to say that the results of the last 2 decades' research are clear, and that vaccines do not cause autism is absolutely insane:

THE RESULTS OF THE LAST 2 DECADES INCLUDE 108 STUDIES THAT CLEARLY LINK VACCINES WITH AUTISM.

No, they don't prove causality.

But they strongly support a link.

The studies that purport to find no link are, at best, deeply flawed, as we all know.

It would be understandable if Autism Speaks were to look at both sides and say, "you know what? there are conflicting studies. We cannot draw a conclusion on whether or not vaccines are causally linked to autism."

Foolish, perhaps, to give industry-funded, industry-designed, industry-controlled, industry-interpreted, and industry-marketed studies equal weight with independent studies. But given Autism Speaks' industry ties, understandable.

What they've done here, however, was to loudly proclaim an enormous lie.

Autism Speaks lies.

Bayareamom

Most of us have learned, as we have, that we have to speak for ourselves. While our pediatricians were willing to admit our son suffered vaccine reactions, they did not report his vaccine injuries to VAERS, so I did.

This man's story is SO similar to so many parents who have contacted me in the past when I ran my parent support group:

https://www.facebook.com/photo.php?fbid=10153783019047474&set=o.1374879262831019&type=3

"...We went to the hospital, they knew it was a vaccine injury, I told them what had happened. It was months later that I realized that it had not been reported. When I called my doctor's office, I said, why didn't you report this, and they said, well, you didn't bring her back here. They said, we didn't have to report it because you didn't bring her back here. I said, I didn't bring her back there because she stopped breathing, we went to the hospital in an ambulance. And so they said, well, it was the hospital that should've reported it. So I called the hospital, and I said, well why didn't you report it? And they said, well, we didn't administer the vaccine, the administering physician should've reported it.

So I called VAERS, I called Health and Human Services and the VAERS office, and I asked the woman who answered the phone, I said, so who's responsibility is it to report vaccine injuries... and she said, well, either one. ... And I told her the situation, she said either one should've reported. And I said, isn't that mandatory, according to the law? And she said, yes. And I said, so what are the consequences when physicians fail to report? And she said, well, there are no consequences. I said, that's not a law. If there are no consequences, that's a suggestion, that's not a law.

So, and for this reason, because it's not enforced and there are no consequences, the number of vaccine injuries, the percentage is estimated to be between 1 and 10%, and it's probably between 1 and 2% of vaccine injuries that are reported. So when you're talking about informed consent, informed consent for vaccination requires that you have the information that you need in order to make an accurate risk-benefit analysis..."

NanNJ

I hate that they say this, 10 years ago I had a dear uncle who was a priest and upon his death he asked for donations to be made to Autism Speaks. Thousands were given in his name. I feel scorned.

go Rand

Thanks Cathy,

As always, the goal of Autism Speaks is to spend another decade with the “search for the Autism gene” and the promise of finding a “custom individual cure” with “gene therapy” for every Autistic child. This is now a worldwide fundraising effort as the vaccine industry has spread their poisons all over the globe.

At present, children are given “free DNA cheek swabs” by Autism Speaks professionals.... with the rest of their 50+ million dollars a year funding given to the “bigger people.”

Having watched this American Autism disaster for over a decade, I now know how various historical tyrants come to power and stay in power. It happens because those who can do something do nothing.... supported by huge amounts of money that will never ever end.

Sylvia

Thank you Cathy for always speaking up for our kids!

John Stone

Susan

The UK National Autistic Society is certainly government funded and I was personally told by its chairman some years ago that it left it to the government to decide on such issues. However, briefly in 2004 there was momentarily lapse on the part of our obsequious media when they reported on the thimerosal issue, and Jane Feinman in the London Times noted in an article 'Heavy Metal Dangers' (13 August 2004):

"Richard Mills, a research director at the National Autistic Centre, says that though there is clearly no single cause of autism, “no one can seriously suggest now that heavy metals are not implicated in some way”."

http://www.bmj.com/rapid-response/2011/10/30/why-pretence

NAS also work closely with "Autistica" which is the British branch of Autism Speaks. Dame Stephanie Shirley, President of Autistica is on record as saying she was determined to find the cause of autism by 2014.

http://www.bbc.co.uk/news/uk-scotland-23180770

Although Steve, as she is known, still has not found the cause of autism there is no shortage of people who could have told her (not least William Thompson) if only she'd been listening. Autistica sounds like the name of a Sci-Fi planet, the planet we are doomed to become if nothing is done.

Steve is a tough, clever person and she should have done better.

susan

In Britain, the National Autistic Society is the recognised 'body'. They, too, do not acknowledge any link between vaccines and autism. Could it be that they are government funded? It is both wicked and frustrating that these powerful organisations are gagged.

Dana

Definitely NOT Autism Speaks!!!

barbaraj

As long as we are in this horrible era, where media, pharm, money controls the arena that once was science, those such as AS are the enemy to our children. Sure they can throw dollars on the disease, influence others to do the same, throw our kids a bone, but every day their influence is grounded in continuing the epidemic by promoting the worst rush of faux science in our history designed only to protect an industry. jmo

Grace Green

Thanks for this article, Cathy,you do a great job for your children. I just want to give another perspective on the situation for verbal adults with autism like me and my two sons. We have no-one to speak up for us, and our diplomacy skills are zero. Indeed, I suspect people "see us coming" and take the opportunity to take advantage. This applies particularly to public "servants" who are very quick to accuse us of mental illness if we dare to complain. As a result we live in constant poverty with no health care or other services.

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