What Did You Think? Autism on Oprah

That’s a great review of the show today. Thumbs up.

Further confirmation that I believe our family is doing the right thing by selectively vaccinating, delaying others and completely avoiding even others. Some disagree. That’s fine by me. Our family, our decisions. :)

(I love Jenny McCarthy!)

I am thrilled about today’s show. I’ve blogged about it today, too. I am SO GLAD that finally these Moms are saying LISTEN TO YOUR MOMMY INSTINCTS. Just so many things about the show today hit close to my heart, life, family, and home.

Steph

I also stumbled on Oprah today, and actually posted on our site The Lohasian (http://www.thelohasian.com). I think she is incredibly brave to have said what she said – knowing that what she was saying was pretty much in line with Tom Cruise saying anti-depressants are dangerous in Post Partum depression…in other words – slamming the medical community. What I think this points to is that we simply DO NOT have all the answers to matters of the mind – from Post Partum to Autism…and the medical community has to admit that vaccinations are a fairly new advent in the context of medical history, as are phara drugs for hormonal or mental disorders. Hubris of the medical world is what keeps it from admitting to the obvious gaps in knowledge. What I appreciated most about McCarthy’s talk, was that she stressed that she “felt” that she should not give the vaccine to her son – and did,and perhaps in this one admission we are reminded that there is no more sacred of a gift that we are given as mothers, as our intuition. Hats off to Jenny.

Wow, I didn’t know that was the subject matter or I would’ve tuned in too. Thanks for sharing. And I totally agree with Julia who commented above, that a mothers intuition is a sacred gift that comes from above.

TV isn’t possible for me during the day, but I wish I’d seen this. I know autism groups in my region have advocated to the government on this issue and have succeeded in getting them to underwrite the cost of providing behaviourial and speech therapists in classrooms where there are children with autism. There is more to be done, but I believe that was a successful first step. Any ideas that move us away from medicating our kids unnecessarily is good.
Thanks for this news.

Although there are good reasons to think that the current vaccination schedule is too aggressive, the problem with the theory is that many countries have frozen or scaled back vaccination schedules, and it’s not returning the autism diagnosis rate to pre-1990s levels. Thimerosol has been banned in vaccines for years in many countries, and it’s only rarely used in the US today. Mercury exposure levels for children are at record lows.

The situation is complicated by the fact that autism is now the most well-known of communication-based disorders, so many other diagnoses (apraxia, hearing problems, etc) are being “displaced” by autism diagnoses. I suspect that many stories of “recovery” are really early misdiagnosis. I’ve been around a *lot* of children with autism diagnoses, and I’m not seeing the emotional symptoms of “classical” autism. I suspect that several factors are converging to explain the increased diagnosis rate.

Long story short, it’s becoming clear that vaccines or mercury they might contain are not enough to explain the autism epidemic.

Rick R.

I too watched it and blogged it. I know vaccines played a large roll (if not the total roll) in my son’s delays in speech, other developmental issues, and honestly, no one could tell me otherwise from my experience and the research I’ve since done.

I was thrilled to see Jenny on Oprah speaking so honestly. I was also happy to see that Oprah allowed it, she certainly didnt have to. I’m sick of people thinking we’re just emotional moms looking for something to blame!

Don’t misunderstand me, I think a lot of the early research into links between vaccines and developmental disorders was sensible and based upon well-founded probable cause. There were some promising correlations that pointed to cause. And of course, there were the known problems of vaccine reaction/allergy and the government’s attempt to shield pharmaceutical companies from the legal consequences of vaccine injury. I’m absolutely sure that some of the anecdotal cases described — such as children that get a vaccine, get very sick, then have problems afterward — were honest statements of fact. These are troubling and legitimate concerns.

The problem is, the theories are not panning out — countries like Denmark have scaled back their vaccination programs since 1992 and there wasn’t even a downward blip in the autism rate. They’ve dropped vaccines from the schedule, replaced others with less powerful (and less effective) vaccines, but nothing is slowing that upward curve.

I concur that _something_ has changed in the last 20-30 years that is causing this spike in developmental problems, and 5 years ago I probably would have agreed that vaccines were a front-runner. But the epidemiological evidence just isn’t supporting it any more. Most of the vaccine-cause proponents have started switching gears, accusing countries like Denmark of concealing the facts, or falling back to “vaccines are just one component of the many causes that the government is responsible for.” OK, fine, but those are claims which need to be backed up, not simply asserted.

Hopefully we’ll find the real cause(s), and hopefully they will be truly treatable. Call me a skeptic, if you will, but I want solutions that actually work — not solutions hung on hope instead of science.

Rick R.

Rick,
Only epidemiology has been used, and since epidemiology cannot show what happens to a subset of children(especially since we are not sure which subset to look at-those unable to excrete so many toxins, etc.), but rather the entire population, it is flawed. The Denmark study you mentioned doesn’t even employ good epidemiology. The population they looked at changed completely between measured data sets. In one they were looking only at inpatients, and then they were looking at everyone! You can’t make a comparison between disparate groups! No scientific study could be designed to show thimerosal is safe.

Throw out studies for second. Thimerosol has been largely eliminated from vaccines in this country (which is not to say you can’t find a few exceptions like flu vaccines, but bear with me for a second).

If thimerosol is a leading cause of autism, then rates of new autism cases must go down when thimerosol is significantly reduced. That’s the *definition of cause*.

Is the incidence of new cases of autism going down? Current thinking is that it is still going up. Therefore, thimerosol is not a leading cause of autism, and probably never was.

And epidemiology can certainly tell us what is happening to the subset of children with autism (like, how fast it is growing, how much thimerosol that subset has received, etc).

Does this mean thimerosol is safe? No. There are legitimate reasons to be concerned when medical treatments (whether it’s thimerosol-containing vaccines or chemo or surgery) carry a risk of side effects, and effort should be made to insure that the risks do not overshadow any beneficial results. I would agree that for many vaccines, this calculation was not done well.

The burden is not on anyone to show that thimerosol is safe; the burden is on them to establish that thimerosol is a cause of autism.

RR

The Special Masters in the Autism Omnibus proceedings in federal court just conceded that thimerosal significantly exacerbated an existing developmental delay… we will know more when the record is unsealed. And I think the burden is indeed to show thimerosal is safe in general…which a recent report showed it absolutely is not…and no experiment could ever show. For my son’s case, I think that genetics, early antibiotics, and vaccine components, INCLUDING but not limited to- thimerosal. Also, we have to remember that only AFTER it was largely removed from childhood vaxes did the powers that be suddenly decide that even infants need a flu shot & started pushing those like crack cocaine.
Also, the toxic overload in the vaxes also includes aluminum, formaldehyde, etc. and those are getting lost from the public view because of the mercury arguments overshadowing them. And live virus components have also been a source of trouble for many. I especially think it may be problematic for those of us with family histories of auto-immunity. Pertussis vax causes seizure disorder in a significant # of recipients, including a few I know personally. And the list goes on. And as I have seen the attempts to obfuscate & cover-up firsthand, I doubt I will ever trust the vaccine program in general or those who promote it again.

Carrie Elsass’s last blog post..SKILLS Program -Dr. Granpeesheh

I am very skeptical about Mccarthy. She claims her son is cured at times and later says he is better. If he is her example then I would like to see an in depth interview of him. As a father of 22 year old with aspergers my anecdotal experience is just as valid as hers and I am not selling a book. Dont buy anecdotal representations with out double blind scientific studies to back them up. I have written her without response. The more people say autism is cureable the great problems of lack of services for these people when they reach adulthood continues to be ignored. My son would be lost without his family. Thats it. So many people are making money off autism it makes me ill. Perhaps she really believes what she is doing. Fine. She is not an expert. All she is a semi celebrity. with an a list celebrity boyfriend. The more time she is on these shows the more time she is not with her son. Who is rasing him. Who is teaching him. I can tell you from experience that is a full time job much more than raising a child without autism. If he is cured, have her post her the clinical reports verifying it. My wife and I too tried everything for our son, Mozart therapy, massage, diet etc.. Hes a great kid and now an adult. Oprah, why dont you interview him. Again adult services for these people are ignored. They dont go away. The majority dont get better. My son is billingual. He memorized virtally the disney song book as a youngster. He is an Eagle scout. He graduated from high schoo. and is billingual. Anyone that want to know his story write me here. I will provide information without selling you a book for x dollars.

What a great show it was! (And how late can I be in commenting about it?) I’ve got the book here next to me and I’ve lost count how many times I’ve recommended it to people. Her story, and those of all the warrior moms (and dads) should be shared everywhere. Great blog!

Autistic people need support just like anybody else. Unfortunately, autistic adults are often overlooked, as it is autistic children who tend to receive most government, or state-run, assistance and services. All autistic people, regardless of age, should have access to meaningful support and services.

Here are a few websites to check out:

1. Autistic Self Advocacy Network, ASAN

http:/www.autisticadvocacy.org

2. Change.org

http:/autism.change.org

3. The Autism Hub

http:/www.autism-hub.co.uk

4. Autism Street

http:/www.autismstreet.org/weblog

5. Neurodiversity Blog

http:/www.neurodiversity.com/weblog

Diagnosis:

If you feel that you are, or may be, on the autistic spectrum and you wish to receive a diagnosis, please be careful who you select to do your evaluation. There are a lot of medical professionals such as doctors, psychologists, and psychiatrists who are clueless–and sometimes even rigid and archaic in diagnostic procedures–regarding autism and Autism Spectrum Disorder. It’s very unfortunate and hopefully things will change for the better with both more time and autism advocacy.

A good place to find a reputable therapist or clinician who can perform a valid diagnosis is to go by word of mouth. Get involved with an online group in your state and ASK who your group members recommend in your area.

Take this online test for Asperger’s (it is not, in any way, meant to replace a valid medical diagnosis):

http://www.wired.com/wired/archive/9.12/aqtest.html

Search your state for an online support group. Check out ASAN’s website above and see if there is a chapter in your state.

For example, in Portland, Oregon, here are two popular online groups:

1. Portland Asperger’s Network, http:/www.aspergersnet.org

2. PDX ASAN, http:/www.meetup.com/PDX-Autistic-Self-Advocacy-Network

If you live in Portland, Oregon and you are looking to see a therapist for a possible diagnosis, here is the name of a valid experienced neuropsychologist:

Dr. Leslie Carter, http:/www.drlesliecarter.com

Book recommendations:

There’s plenty of literature about autism circulating throughout many sources. Why not pick something written by an autistic? Especially if you desire to capture a feel for the essence and reality of autism verses assumptions pertaining to biased clinical studies. Need a place to start? Here’s a few suggestions:

1. Autism and the Myth of the Person Alone by Douglas Biklen, et al.

2. Songs of the Gorilla Nation: My Journey Through Autism by Dawn Prince-Hughes

3. Look Me in the Eye: My Life with Asperger’s by John Elder Robison

4. Nobody Nowhere: the Extraordinary Autobiography of an Autistic by Donna Williams

5. How Can I Talk If My Lips Don’t Move: Inside My Autistic Mind by Tito Rajarshi Mukhopadhyay

Visit your local library, bookseller, or online source to obtain a copy of the above mentioned titles. Then give yourself a pat on the back!

Extra Info:

Autistics and Uneven Skills

Autistics may have an I.Q. that falls on both sides of the bell curve. In other words, it’s not uncommon for an autistic person to have a significant range in I.Q. testing scores. It’s important to take into account verbal and social issues, as well as individual learning styles.

Here are some examples of uneven skills:

1. Having extreme intelligence with computers and written communication and then not being able to make a sandwich or prepare food.

2. Sophisticated writing abilities, yet trouble with spoken communication.

3. Possessing an amazing savant skill and then not being able to take care of basic survival needs.

4. Excelling at calculus, yet being incapable of doing simple arithmetic (this example comes from Dora Raymaker–thank you).

Okay, I’ll expose a major personal problem of mine. I am fine with caring for my basic survival needs and that of my family, but I am terrible with time management. For instance, my older son’s school requires the children to be picked up at 2:30 p.m. on Fridays–during the winter only–rather than the usual 3:30 p.m. Since winter began, I’ve forgotten to pick my son up a total of five times despite having large visual reminders and phone alarms set.

Awareness and understanding are greatly needed in this area of autism advocacy. The attainment of valuable meaningful services for the whole of the autistic population highly depends on widespread comprehension of this aspect of autism.

Autism-First Language

Perhaps you have heard of person-first language? After all, it’s common talk in the disability community. Maybe you have even heard someone refer to an autistic person by saying he or she has autism. But not all autistics agree with person-first language.

Though it is common for both the medical and cure-focused communities to refer to an autistic person as a person with autism, such references are not the lingo of the greater whole of the autistic community.

In a nutshell, saying a person has autism may imply that the person is defective or that there is an inherent problem or sickness within the person. It also implies that autism can somehow be separated from the person.

Here’s a quote from Jim Sinclair:

I am not a “person with autism.” I am an autistic person.

Explore more of what Jim has to say by visiting:

(http:/web.syr.edu/~jisincla/person_first.htm)

If you find yourself in a sticky situation then it is quite neutral to simply say, “person on the autistic spectrum.”

Thanks for brushing up on your autistic community lingo!

***Best of luck! Please use your judgment if the world of autism is new to you. There is a lot to learn. Take what you need and leave the rest.

I was very taken back by Jenny’s comment that stay at home moms should be paid by the Government just for staying home. I think we alreay have that system in place and it’s called welfare-which the Moms who are trying to better themself and teach their children that it is okay to have something of there own and help support their families AND HELP PUT MONEY BACK INTO THE WELFARE SYSTEM!!!! Thank God for working Moms! Then on the other end of the spectrum there are the Moms who stay at home just to put their children in the child care at the gym, get babysitters to go shopping, and of course the “I need to go on a vacation to get away from the children and take my husband with me so I can be the center
of everything going on”
Working Moms take their children on vacations with them, teach their children that hard working kids grow up to be hard working adults and have much stronger relationships with their children. There are studys to support that working parents tend to spend much more valuable time with their children-
I have 4 children, work 3-5 days a week, caoch my daughters basketball team, my husband is a leader in boyscouts we always take our children on vacations and all my children do great in school and the government has never had to help me out.
As you can probable tell, your comment truely affended me-
Please educate yourself on all matters before opening up your mouth.
I do commend you on your work with Autism, but you really need to get out into the real world-We have friends with 5 children and one is very handicapped-oh ya, and she does occationally work to have an outlet in her life because of how crazy life gets some days. To me she is a real hero because she has never gone on Oprah and lives her life like a normal person and has never asked for help.