WHAT AUTISM ISN'T....

I received an email a few days ago about an article written locally, on the Autism Hub email list. A Hub blogger wrote about the story in Austin Woman's Magazine titled What is Autism?

(http://daisymayfattypants.blogspot.com/2009/04/what-is-autism-well-it-aint-this.html) 

In case you want to read it...What is Autism?
I was so incensed by the article that I had to write the author.

This is my first email I sent...
What Is Autism? Autism is a neurological disorder. It is not GI issues !!! It is not the "unethical and untested" treatments given by doctors at The Thoughtful House. Autism is not heavy metal poisoning or too much toxicity in the body. What Is Autism? Autism, in my house is age 18, severe autism, junior at regular high school with an aide...honor roll. Age 14, Aspergers..regular high school honor roll. Age 12, PDD-NOS..regular middle school....honor roll. Age 9, PDD-NOS..regular elementary school...honor roll. Age 8, Severe Autism, regular elementary school..lifeskills program with inclusion. It is not sedation with a colonscopy. It is not the elemental diet fasting. It is not Hbot chambers. It is not chelation. It is hard-working therapists who work hard to help our children be able to live in a society that wants to "cure" them so desperately. My children are not broken, they need to adapt to a society that so readily wants to make them better. They are pretty amazing to me already. If you really want to see autism, give me a holler... I will introduce you to some pretty amazing people...

This was my response from the author...

From: Darline Turner-Lee To: Mom26children@aol.com Sent: Mon, 20 Apr 2009 2:39 pm Subject: RE: What is Autism Dear Ms. O'Donnell, As the writer of the "What is Autism" article, I am responding to your editorial comment. First off, Autism is classified as a neurological disorder, but that description is believed by many clinicians who work with children with autism to be incomplete. There is overwhelming evidence that many of the neurological manifestations of autism are the result of abnormalities in affected children's gastrointestinal tracts and immune systems. Many scientists and clinicians, those of Thoughtful House, The CARE Clinics and others believe that doctors have to look at and treat the other systems in order to effectively manage autism. As a mother of 4 children with Autism Spectrum Disorder, I am sure that you have seen a wide range of symptoms and had to try a wide range of treatments in order to help your children to be able to function and mainstream to the high degree that they are currently. Thankfully for you, you found conventional treatment plans and therapist that have worked for your situation. Unfortunately, that has not been the case in many other situations. For many other families, when conventional treatments and therapists gave them no hope at all, using alternative treatments such as dietary modification, chelation therapy, Hyperbaric Oxygen, supplements and others has meant the difference between their children being able to focus and mainstream into public schools and being unable to function, interact with others or to participate in society. It is not anyone's right (yours included) to declare that a treatment is wrong or ineffective if they have not used it, it was not effective in their situation or if other people are using it-whether successful or not. Parents of autistic children, like parents of children with any type of medical disorder, are simply trying to get help for their children. When one treatment or therapist doesn't work for them, they must move on to something else. Every parent makes difficult decisions for their children. These are choices that many parents made and while you and others may not believe in the treatments offered by these facilities, that does not mean that they are not valid, are not effective or that they cannot be discussed. The doctors at both Thoughtful House and The CARE Clinics are not practicing outside the scope of skill, they are not doing anything unethical nor are they harming the children that they treat. They provide ANOTHER MEANS by which children on the Autism Spectrum Disorder can manage their symptoms and be able to focus, control their movements, learn and become integrated into our society. I found that to be worthy of reporting and so I did. What you don't know and what will be presented in Part II of this series is that the aforementioned "alternative" therapies in conjunction with therapies such as Applied Behavioral Therapy and DIR Floor Model Therapies are giving children a chance at functional independence. So no, The work of dedicated therapists is not discounted. They will be presented. Autism is a multifactorial disorder and many therapies have to be integrated for treatment to be effective. We are all individuals and what will work in one person is not guaranteed to work in the next. If we become so narrowminded as to believe only what we can see and only what resonates with our belief systems we are going to miss out on a bounty of good therapies and I don't want that to happen. Thank you for your response. Darline Turner-Lee Physician Assistant, ACSM Clinical Exercise Specialist, Health Care Writer Next Step Fitness, Inc and Bedrest Comfort & Care 6705 Hwy. 290 West, Ste 502 #283, Austin, TX 78735 www.nextstepfitness.com www.mamasonbedrest.com darline@nextstepfitness.com darline@mamasonbedrest.com 512-288-0827

My response back to her...

Thanks for your reply. I must tell you, I have 5 autistic children, not 4. Your article was titled "What Is Autism"? You did not define it. You put what The Thoughtful House decided it is. Autism is not defined as gastrointestinal. No where in the DSM-IV is gastrointestinal listed. Autism is not toxic overload. That is what The Thoughtful House is defining it as. I found it very irresponsible reporting and yes, that is my opinion. 2 of my children are severely affected by autism. My oldest, 18 years old... and my youngest, 8 years old. My oldest received all vaccinations...my youngest received NONE... My 14 year old has Aspergers. My 12 year old and my 9 year old were both diagnosed with severe autism and now are PDD-NOS...both fully inclusioned in regular classrooms in regular schools. Why is this not being reported? They did not receive any chelation, any biomedical interventions, any Hbot any B12 shots, and any ABA or RDI. They have not been physically invaded through colonoscopies or lumbar punctures. What they did receive was OT, Speech, Play and Physical Therapies with a stress on Sensory Integration. Why is this not being reported? Why, because it is not sensationalistic enough, that is why. If I sound angry, I am not...I am just irritated with the media's need to represent Autism in a one deminsional way..the biomedical Jenny McCarthy-Thoughtful House way. That is not good journalism, but makes a good story, right? There is a new program starting at the University of Texas called UTAP- University of Texas Autism Program. They implement Sensory Integration Therapies and have found great success. I hope to heck they will be included in future media reports..you know, fair and balanced. Unless you have a child on the spectrum, you have know idea what some parent's will do to cure their children. Places like the Thoughtful House know this. They happily take the money these parent's are willing to hand out for false promises. I am a mother living in Austin and believe me, your magazine does not represent me. Jeanette O'Donnell

PRESENTING AUTISM POSITIVELY...

I am on a mission to present Autism with a positive approach. No more sad, impossible stories about autism. No more watching children have meltdowns on television for me. That is all that television and newpapers want to show.

Nope, I am on a mission to show a positive side to autism....I know, I know...Autism has its downside....all life does. It is called life.

No one, not even the most "normal" person has it easy. We all have to get along with people who do, or do not, want to get along with us.

I ran into an old friend from school at lunch today. I sat and talked with her and her mother for over an hour (I did not intend to , but I got to rambling)...I noticed a mother walk into the restaurant with her little girl (who has Down's Syndrome).

When they got up to leave, they walked by our table. I said, "What a beautiful child". Her mother looked into my eyes and smiled.

I hope people do not get the impression that I say these things to get a pat on the back...

I say these things because I want people to be aware of their surroundings and that their are differently-abled people everywhere.

Their parent's need to know that we care and we are there to help....

My friend Cynthia said, "Wow, that was amazing how the Mother connected to you"...I told her I have to talk to everyone, but especially parent's with children with disabilities. They need to know that they are not alone and that people see the beauty in their children.

I left there and went to my grocery store. As I was leaving, I heard buzzing..there was my other new friend Andrew (whom I met last week)...I said, "Hi Andrew"...He said, "Hi Jeanette"...my day was made..he remembered me.

If media will not portray our children with all of their beauty and everything that goes with it...not just the gloom and doom...then it is my job to do so.

Get ready America...we are coming...we will be stronger than any Warrior Mom...we have been around longer and we know the drill. We have age and wisdom on our side...we have withstood the good and the bad...we have met challenges and won. We will win the battle of the media also.

Does anyone know Oprah's direct phone number?

AUTISM, LIES and MONEY...

After watching Jenny McCarthy and her crew of puppets on Larry King Live Friday night
(and a few times after that..just to make sure I was hearing them correctly)...I have come to
the conclusion of the reason for their being on television...

MONEY, MONEY, MONEY, MONEY....

If you go to the website, mentioned on the show (and no, I will not mention it here)..you get
directed to a package sold by the good Dr. Kartzinel..for the incredibly low price of $219.80 +
shipping and handling (of course)...
All products followed by this disclaimer..
These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure or prevent any disease.

As if I would be surprised the FDA would approve anything they sold.

My problem is this...
Jenny McCarthy and Dr. Kartzinel have hit every talk show to #1..sell their book
and now #2..to sell their "supplements"...

Jenny McCarthy has stated her son is 100% recovered...100% cured...
BULLSHIT !!!!

JennyMcCarthy's son has minimal eye contact. He repeats phrases. He walks on
his tippie-toes. He attends a non-mainstream school, in his home. According to
Jenny, he is still receiving chelation (why, if he is cured?).

Jenny McCarthy has a beautiful son. That is not to be diminished.

Jenny McCarthy has a beautiful son with Autism, but to say that would stop the
sale of a lot of books and television appearances.

Our daughter Erin, 12 and our son Patrick, 9 were both diagnosed with severe autism
before their 2nd birthday.
Now, they are both PDD-NOS..they are non-distinguishable from their peers, in regular
classrooms, with neurotypical peers. They play amongst them and learn amongst them..
but, they are still Autistic.

When self-promoters like Jenny McCarthy sell the promise of cures and recovery, they
are not only lying to themselves, but to the many parents who are buying (and I mean
buying) into their bull...

I have been through all that is to be offered by the best and the worst of Autism...
we are now viewing the worst. I pray that I will not have to view her for much longer.

WHERE ARE ALL THE ADULTS WITH AUTISM?

HANDLEY: I want to talk about this issue of autism prevalence. It's going to be shocking for parents to learn that the CDC and the AAP don't actually acknowledge that there's been a real rise in autism cases. Larry, the Department of Education in 1992, 16,000 kids were getting autism services. Today 225,000. That means in 1992, they were missing 93 percent of kids with autism. Where are all the adults with autism? They don't exist.These numbers are real. But if you never acknowledge there's been a real rise, you don't have to find an environmental agent that caused it.

Mr. Handley, if you would like to take some time, I would love to introduce you to some adults with Autism...

In 1971, I had my first job...I was hired to babysit a family with a 3 year old boy and a 7 year old girl. The 3 year old boy had severe autism. He rocked, he flapped and he was non-verbal. He would now be 41 years old.
In 1982, I worked in a residential treatment center. The dorms I worked on had teenage boys and girls, initially diagnosed with Mental Retardation and then later, the Autism diagnosis was added.
These teenagers would now be in their late 30's and early 40's.
When the residential treatment center closed, they were sent home to find other facilities or in group homes....

In my neighborhood alone, there are 4 group homes that house 7 autistic adults in each home..that is 28 adults with Autism in my neighborhood alone...not including my child who is now an adult with Autism.

Mr. Handley, you singlehandedly have discarded a very large community of people living and working in our community. I believe you don't see it because you don't want to.
If you admit there are actually adults out in the world with autism, your little conspiracy will be shot down. All of the propaganda you spew at your sites will be discredited.

http://www.ageofautism.com/2009/04/from-cnn-live.html#comments
A mother writes on AgeOfAutism...
Mr. Handley discredits families of adult children with autism! He stated tonight on the show that there are no adults with autism! Shame of you for spreading your lack of knowledge. My son is 26 years old and has a diagnosis of autism. And shame on you for ignoring the years of hell our family and others like us has endured. When he was diagnosed 22 years ago, the criteria was so narrow that only the most severe could fit that label. Although my son was severe, they would not label his as having autism, but only "characteristics". Many children had autism back then, but were labeled MR! Go to the instituions and you will see the truly autistic adults that were mislabeled MR and mentally ill.22 years ago, I started reading about the MMR link; then the mercury link; now the huge vaccination link since you can no longer blame the MMR. Well, when my son was vaccinated beginning in 1983, there were less than 10 vaccines in the schedule. And guess what??? He is still autistic as are all of his former (now adult) classmates!

This was a response from a parent who is trying to discredit the mother who wrote the above letter to AoA...Nice huh?

Also, to Fonda Watson: If you are indeed a parent to a child 26 years old, I can relate as my child was born before the epidemic numbers, but right when the increase in thimerosal took place and the numbers did start to increase (1993).
How though, did you 22 years ago (1987) start "reading about the MMR link; then the mercury link; now the huge vaccination link since you can no longer blame the MMR." I'm sorry but that is just not accurate. You could not have investigated as no one knew that vaccines or environmental factors (mercury) were the cause of autism in 1987.

Ms. Conrick, if you are indeed a parent of a child with autism, how come it is so easy for
you to discredit a mother who has far more experience than you in living with an autistic
child?

This is the reason my blood is boiling right now....
I am amazed by the hatefulness that is spewed to the parent's who have lived
with a child with autism for over 20 years.
We have so much to learn from these mother's, but instead,
the mother's of younger children with autism want to call them liars.

The comment looks very similar to an Anonymous comment left on my blog
just yesterday...https://www.blogger.com/comment.g?blogID=32355297&postID=1998993530597266901
If you do work hard to help them, than that is admirable. If they are, in fact, doing so well in school, then I'm really happy to hear it. I do not for any child to struggle with Autism, regardless of whether or not I agree with their parents methods.

Of course, people who comment anonymously are really not to sure of their own
convictions, are they?

My hope is, since Mr. Handley so callously made this comment on television, that
every parent of an adult child with autism..or an adult with autism..comes forward and
lets him know they are here, they have been here, and they are tired of being ignored.

I will gladly represent those whose voices you are trying to silence...

I recently had a conversation with a 23-year-old male with autism. I asked him
what he would like to do with his life...he has one simple request...
"He wants more services for adults with Autism".."he wants to take college courses,
get a better job than cleaning tables at a local restaurant, and he wants speech therapy
past the age of 22 years old...."

I do not think that is too much to ask....

So, instead of saying the adults with autism do not exist...why don't we acknowledge they
do exist and make their lives accountable?

AUTISM AWARENESS DAY...

Oh Yippee!!!

Well, I personally have been aware of Autism for over 30 years. Starting at the tender
age of 10 years old, I babysat a 2 year old with Autism. That would make the young man
41 years old.
I worked at a residential treatment center from 1982 to 1985. I worked on a dorm with
4 15-year old girls with Autism. They would be 42 right now.

Then, in 1991, I gave birth to the first of our 6 children, 5 whom have autism....so
Aware we are.

So, on this Autism Awareness Day, I will not watch the news. I will not subject myself
to the torments of hearing how Jenny McCarthy is promising people that she can cure
or recover their children. I will not listen to Dr. Kartzinel tell people how his son is broken
and how autism steals the souls from our children....what a putz!!

I would love for Jenny to tell the truth on how her son is not attending regular school,
but a school built for him in their home...with him being the only child.
I would love to hear Jenny explain how she spews the harm of toxins, yet boasts about
the greatness of botox.
I would love for Dr. Kartzinel to explain that he adopted his child from a drug-addicted
mother...the little boy was unfortunately doomed to have neurological problems way before
he received the MMR shot.

I saw an ad on CNN for Larry King...it stated "THE TRUTH ABOUT AUTISM" with
Jenny McCarthy and Jim Carrey....
Neither of them know the truth about autism.

Autism is a neurological disorder. Autism is repetitive behaviors, lack of socialization and lack of verbal skills. Autism is the need to have constant stimulation around them. To make their surroundings comfortable for the noises or conditions around them that bother them, such as rocking, stimming or humming.
Autism is not the gut....Autism is not poop-smearing
(that is just a lovely side-effect due to the constant need of stimulation)...give your kid
some shaving cream instead to smear.
I would love to hear about Autistic children and adults who are thriving and improving
every day without the crap being talked about in Jenny McCarthy's book.

I feel really, truly sorry for the parent of a newly diagnosed child who has to rely on a
bleached-blonde, botox-filled, silicone-altered, D-list actress who is doing more harm
for the world of Autism than she could ever imagine.
I feel horrible for her son, who one day will read her books, and read the filth she
writes about not only his father, but other mothers who do not choose her approach.

Put Jenny McCarthy up against one of us mother's who have been in the world of autism
2 times longer than herself and she will not stand a chance...c'mon, we are ready for
a debate. Not a yelling match, but a debate. Not a name-calling festival, but a debate.
We won't be holding our breath...!!!