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Online newsBy Anne Dachel

Read Anne's commentary and view the links after the jump.

Feb 24, 2014, Eagle Tribune North Andover, MA: Parents of autistic children launch dinner club

Feb 23, 2014, Cookeville (TN) Herald-Citizen: Fry appointed to state council on developmental disabilities

Feb 23, 2014, Brooklyn Reader: Vaccines- Panacea or Poison?

Feb 22, 2014, Seattle Times: "No funding available" - A family's struggle

Feb 22, 2014, Forbes: Is The CDC Hiding Data About Mercury, Vaccines, And Autism?

Eagle Tribune North Andover, MA

Raising a child with autism comes with a host of challenges along with the joys - and going out to dinner can prove one of them.

Behaviors can be unpredictable, with children sometimes having trouble sitting still, talking too loud or even sampling food from a plate at another table, parents say. Other diners may be disturbed and the restaurant staff may not know the best way to service the table - sometimes leaving parents self-conscious and wondering if the trip to the restaurant was even worth it.

"We can feel isolated," said Lenard Zohn of Andover, who has an 8-year-old autistic daughter. "It can be very isolating for any of us and I've heard that from many parents."

So, Zohn has banded together with some other local parents who have autistic children and formed a family dinner club called Autism Eats.

 Of course the good side to this is the opportunity for families to be able to go out to a restaurant without the worry of what others will think. The downside is that we're accommodating a disability without ever acknowledging that it never used to be here. Maybe if we just make every facet of our lives "autism friendly" there won't be a problem. That seems to be what we're trying to do. It's all we can do.

Notice that no one is talking about bringing their elderly aunt or uncle with autism.  No one mentions how nice this will be for their middle aged autistic sibling.  It's always CHILDREN in these stories.  No one wants to know what we're doing for all the hidden autistic adults.

Cookeville (TN) Herald-Citizen

Gov. Bill Haslam announced Fry's appointment last week. She also currently serves as the vice-chair of the Putnam County School Board.

"I am excited and honored to have received this appointment," Fry said. "The Tennessee Council on Developmental Disabilities promotes public policies to increase and support the inclusion of individuals with developmental disabilities in their communities."

Council members serve on a volunteer basis and are appointed by the governor and various representatives of state agencies.

"As a school board member and parent of a child with Autism, I am aware of the number of children we serve with disabilities in Putnam County and across Tennessee," Fry said. "One day these children will be adults and no longer be in the school system."

The Tennessee Council on Developmental Disabilities works with public and private entities across the state to promote policies and increased support for individuals with disabilities. The council supports those with disabilities and their families, working toward equal access to employment, health care, housing, education and community life in general.

"My son is 11-years-old, but one day, he and other children with developmental disabilities will be ready to find employment, live as independently as possible and be a part of their communities," Fry said. "My desire to serve on this council is to broaden the opportunities and ensure all those with disabilities have access to them. Support for families is vital to for success."

Fry is an adjunct professor of business law at TTU and private practice attorney at Qualls and Fry PLLC specializing in Special Education Law.

This is a strange piece. We're not even told Fry's first name. As usual, concern about what's ahead for adults with autism is talked about without anyone noting that we really don't know a lot of adults with autism. No one asks why young adults with autism can't go where ASD adults are living now.

Of course no one is worried. If autism were really a crisis someone in the government would be talking about it, right? No comment section.

Brooklyn Reader

At our six-month check up, I wanted to re-read the information pamphlet to see what shots she had to have. When I got home I began to research some of the medicines, and 3 hours later I stepped away from my computer scared and overwhelmed at all of the commotion and controversy behind the medicines that are suppose to keep our children healthy and safe from disease.

I could not get past the claims of unsafe ingredients, drug patent owners that sit on the board of the CDC, and side affects that are far more dangerous that the original disease! . . .

The most disturbing of all the information I read was accusations that vaccines cause autism. The drug MMR, a vaccine for measles, mumps and rubella (also known as German measles) is being listed as the culprit in causing autism among our youth.

This is nice to see on Google News.  I'm sure it would never appear on mainstream news reports.  I posted comments.

Seattle Times 

"No funding available" may best summarize the system for residents with developmental disabilities in Washington state, where some 14,600 families determined eligible for services don't receive any.

. . . Six weeks later, the results of the update evaluation arrived by mail: Rowan still met the state's criteria for receiving services.

But still, the letter reported, "there is no funding available."

Perhaps no phrase better summarizes the system for residents with developmental disabilities in Washington state, where some 14,600 families determined eligible for services don't receive any.

It is not a waitlist, per se, because that term implies a linear path toward an end.

Advocates say the only way off the "No Paid Services Caseload," as it is called, is experiencing a crisis and catching an evaluator's attention just as a spot opens.

"It's essentially a lottery," said Ed Holen, executive director of the Developmental Disabilities Council, an advisory organization whose members are appointed by the governor. "There's no difference between those receiving services and those not receiving services, except that one group has managed to get the services."

 First of all, the real problem here is all the disabled children no one can reasonably explain--not the lack of funding. The reporter here didn't even mention the autism rate. He doesn't really explain what's behind the lack of funding.

I posted three comments. And if Washington can't provide for its disabled children---what's going to happen to them as adults when mom and dad are no longer around?

I don't even want to think about it.

Scroll down the first page of the story and look at the photos. This is a very disabled child. We're also told he was normal until he was three months old. No explanation given. I guess that's what we expect with autism.

There were 8 comments up---all critical of the government.  I added 3 more.  They were all removed.

 Forbes 

You know the rule. The answer is, "No." But the assertion has gone viral on social media thanks to the zombie-like resurrection of a long-told, oft-debunked story that the US Centers for Disease Control (CDC) is hiding its own data linking autism and mercury in vaccines. If you see such assertions in your timelines and newsfeeds (sample headline: "CDC Caught Hiding Data Showing Mercury in Vaccines Linked to Autism"), send the disseminators here. Why? Read on. . . .

Emily Willingham is one of the strongest defenders of vaccines in the media. Here she has backup with Dorit Reiss challenging every comment posted that disagrees with Willingham's view, especially mine.  Clearly the controversy shows no signs of fading away.

Comments

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jen

Thanks, Roger.

Roger Kulp

It's just what I said.I have spent enough time in internet discussion groups with parents to learn there is a clear generational dividing line in both the types and numbers of autism.It's taken me a few years to come to this conclusion.In no small part because of improvement in my brain function because of leucovorin,and a dairy free diet.

The fact you find so few autistics over 25 with autism and complex medical problems,and/or intellectual disability,is because most of these autistics had purely or mostly genetic based conditions.If you do some digging,you can find family histories of medical or psychiatric causes linked to the same genes.Not all genetic causes of autism are simple single mutation diseases,like Rett Syndrome or Fragile X.Some of these genetic causes of autism,are complex things,that have what I once heard called "hits on many genes".Non mitochondrial forms of cerebral folate deficiency,like I have,is one such type of autism.I have not had all the genes tested yet,but I am looking at possibly two different inborn errors of folate metabolism,as well as both folate receptor autoantibodies,and multiple other folate cycle gene mutations.My mother was not autistic,but she had most of the same medical problems I do.She had undiagnosed seizures that were similar to mine,but less severe.Her sister had undiagnosed Asperger's,was infertile,had many folate and methylation related medical problems with her female organs,but no one knew the cause then.She died in 2003,at 73 in a group home.

The discovery of cerebral folate deficiency,and its treatment,literally gave me a new life.But we are not seeing large numbers of children being found with CFD as the main cause for their autism.Unless you live with it,CFD has pretty much faded away from the general autism discussion.True Cerebral Folate Deficiency Syndrome,like I have,may be fairly rare.

I think the causes of the autism epidemic are many.I frankly did not know that one cause could be just from cutting the umbilical cord too soon.I know most people here will violently disagree with me,but I do think a big,big chunk of it is due to an ever increasing toxic stew off all sorts of drugs and chemicals babies are exposed to in the womb.

Bisphenol A is just one of these chemicals.Most people should know that by now.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3703316/
http://thechart.blogs.cnn.com/2011/06/07/scientists-warn-of-chemical-autism-link/
http://onlinelibrary.wiley.com/doi/10.1111/j.1651-2227.2012.02693.x/full
https://www.autismcoach.com/Articles.asp?ID=287
.pdf here
http://www.plasticfreeocean.org/node/54

jen

Roger, it seems fairly obvious that genetics are not the driver behind most cases of autism. What do you think of the role of pthalates/BPA?

A Mom

Why doesn't anyone ever post TACA's link of studies that show how vaccines cause damage? I am not about to register to those sites but it is frustrating to see you all take a beating over and over again about studies that show no links.

They are clearly getting paid to post what they do. There are no women with hearts and souls who would post the cold hearted crap they post about permanently damaged little children and their parents who are pleading for help and changes.

Linda

Emily is on the job. I believe her article is an attempt at damage control in response to this, released five days ago:

http://www.prweb.com/releases/ASOT/Thimerosal/prweb11598819.htm

Roger Kulp

Anne,you know as well as I do you are never going to find any middle aged or older autistics who have been found to have all the medical issues and regressions that kids have now.I'm a fluke,a freak,the only one.There aren't as many of them,but some do exist.They are all locked away in group homes,where what problems they have other than autism will never be diagnosed.If someone wants to go into these homes,and start a mass testing program,that would be great,but we know that will never happen.

If my experience after my mother died is any indication,those older autistics who live with parents all of their lives,have adult protective services swooping down on them,and cart them off to a group home as soon as the parents die.I came very close to having this happen myself.First because my landlord would not allow adult protective services to come into the house.Then later because the case worker from APS saw the profound improvement treatment had made since my last autism evaluation.

The nature of autism has changed in the last 20-25 years,but I think a lot of these older autistics would be like me,and have purely genetic and metabolic diseases like the ones listed here. http://www.treatable-id.org/ The fact I see so little discussion of these diseases here,and in most of the internet discussion groups I belong to tells me how rare these diseases really are.But to get treatment you have to see autism doctors.The metabolic diseases on this web site are not known to most non autism doctors.It has been an incredible struggle to find what answers and treatment I have so far,especially since the big research hospitals,in my case Arkansas Children's,won't see adults.I've known for years how everything related to autism medicine is biased towards children,especially young children.Something a lot of parents are only now learning.All I can say is welcome to the club.

Reader

I couldn't log in. Dorit keeps stating that there are countless studies showing safety but we need to keep mentioning that these are epidemiological studies (vulnerable to all kinds of faults/tricks). Children deserve more PHYSIOLOGICAL safety studies with bio- markers looked at in order to ascertain safety.

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