About Me

I am the proud mother of 6 children. 5 of our children have autism. We do not feel our world has ended, but just begun. We do not chelate, intervene biochemically, give shots of any kind, practice ABA, etc. We treat them as we treat any humanbeing. We treat them with kindness and respect and expect the same from them. They are exceptional children.

Tuesday, April 21, 2009

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

16 comments:

kathleen Leopold said...

Well done..Whenever I see articles like the one you responded to, I think about how glad I am that I am not among the newly diagnosed. Have you thought about taking both your letter and response and fleshing them out into an article?Would that particular publication be willing to present a different point of view?

farmwifetwo said...

Sometimes dietary changes are necessary. When your child for 2.5yrs has had constant diahhrea with a raw bottom that makes you and him cry every time you wipe it... there's a problem. Being shrugged off as "some children with autism are like that" is not an answer.

48hrs of no dairy, it, the daily (night and naps) nightmares/terrors were gone. The "stoned" (tripping, leaning when sitting, falling without putting out his hands) were gone. Ever seen a child run into the greenhouse, trip over his own 2 feet and fall face first into the wooden forms for the water beds... without putting out his hands... TERRIFYING!!!! I'm happy he hit his forehead and not his face...

7 days after removing the dairy, a little pad of butter on a freezer pancake turned into a 24hr nightmare.... have you ever seen a very, very calm child, look you in the eye and then slam his head off a concrete step hard enough to leave swelling and a bruise.... I have.

Cure... No. And it was only my "mild" one, the severe one dairy removal has done nothing, but then again he didn't have the stomach problems.

Why would Dr's not tell you to check foods when there is a family history of IBS, but decide not to b/c he has autism??

Then again.. the teenager up the road, has just come home from the hospital, years of illness has finally got a feeding tube, will not be back to school until Sept and has Crones disease.... Dh's cousin's child had to have his intestines burst in the middle of his Gr 1 class and nearly bleed to death before they got him (airlifted) to the local children's hospital after years of complaining of stomach pains. Easier to blame child and parent, that to do something about it.

I'm not into doing the chelation or HBot or other treatments that IMO aren't safe.... but I also know better than to cast stones about something I have never tried and know little about.

S. - who's children are also doing AMAZING... I expect the re-dx at Gr 8 (I refused to do it at Gr 4 b/c they'd remove his OT - putting in a permanent computer) will say "no longer has autism". Oh, the LD will still exist.... only a fool gets rid of all the paperwork.

Autumn said...

I think the scarey thing here is that human beings can have a tendency to believe everything they hear. For me the issue isn't one particular thing.(such as (a)definition of autism) It's Everything. We live in a world of sales. This means the world is constantly trying to rope in 'concrete definitions' in order to sell their product. If I can advise my kids(autistic and not)and myself in anyway it's that I take time to stop, wade thru the BS, and listen to my intuition.. Any of us as imperfect as we may be do not have to succumb to consumming ANY idea sold to us out there. Including those from the so called 'experts'.

Joseph said...

Sometimes dietary changes are necessary.Absolutely. For example, I went to the doctor because my triglycerides were high. Of course, my diet needs to improve, and I need to exercise and so forth.

But how is this sort of thing related to autism?

There's no reliable science indicating that GI issues are related to ASD in any way.

Thoughtful House is associated with Andrew Wakefield. That in itself makes it a place that deals in quackery, so no information coming from it should be taken seriously.

Maddy said...

Likewise with Kathleen, I think the information can be quite overwhelming at the beginning.

Interestingly recently my son's diet has changed 100% however, other than that, being generally healthier, I don't notice any other changes.
Cheers

Anne said...

Hey Joseph, I have high triglycerides, too.

The difference is, you're autistic, right? So you have autistic high triglycerides, whereas I, not being autistic, just have high triglycerides.

Isn't that how it works?

So take some fish oil - that's what my doctor recommended. If it helps with your triglycerides, we'll call it an autism treatment.

Emily said...

Hi there. Another thing that really gets me about her response to you is the utter disregard for what is factual vs. what is anecdotal. She presents, both in that "article" and in her response to you, anecdote and defensiveness as though it were fact. She made no effort whatsoever to investigate, confirm, or demonstrate any scientific accuracy for anything she's asserting (and there isn't any, as she'd've found, if she'd looked). She's no journalist, certainly. I'm appalled that she's billing herself as a "writer" of any stripe, given her apparent inability to practice even the most basic tenets of journalism.

And then you have to ask...what were the editors thinking? Were there editors? Oh...and then, you remember...$$$.

Mothership Captain said...

Yikes.
Stand up for what you know to be true, sister.
Your approach isn't sensational, but it's what works!
I'll be thinking of you...

Nostrum said...

Gah. Yeah, sure, kids with autism can have GI issues. They can also have seizures, yet nobody tries to define autism as a seizure disorder and put everyone with autism on seizure meds, right?

Barbie1158 said...

I just came across your blog and I just have to say THANK YOU!! I am a mother to an amazing 2.5 year old that was diagnosed with PDD-NOS in Oct. '07. I read through some of your other blogs and its refreshing to see that there are more people than just me that are sick of all the cure this and cure that crap. I haven't been involved with Autism half as long as you have, but I am already sick to death of people relying on a girl that used to pick her nose on MTV for a living. So again, thank you for trying to spread some truth out there!

sarah gann said...

Oh my Lord. Thank God I found you! I thought I was the only one who felt this way...and I only have one kid on the spectrum. I am having the same troubles up here in O-HI-O....what is with this new McCarthyism? Who is going to stop this woman?

Why do all these people think they have broken children and Jenny is going to bring them cures in her well-manicured hands!?

The Animator's Wife said...

I'm glad you're speaking up and SPEAKING OUT! I love your take on your children and agree completely. Keep on speaking...

Mom26children said...

Thanks Animator's Wife...
Lots of things happening in the news of Autism lately...
By the way...I have a very good animator in our house. Erin, our 12 year old daughter is getting quite good at Anime'..she loves it.

Jeanette

About Jon Gilbert said...

Hey! Thanks for this blog and for standing up for what MANY parents with kids living with autism believe. I am in your camp. If you don't mind, I'd love to add a lind to your blog on mine: http://www.thesamechild.blogspot.com.

I'll be back to read more often!

~Jon

mommy~dearest said...

*applause*

Anonymous said...

I would like to commend you wholeheartedly for your true reasonability in regards to this truly one-sided article. I love that you are so adamant in your pleas for and commitment to neurodiversity! I absolutely agree with you. You must be a really great mother; your children seem wonderful, from what I have read and seen! I enjoy reading your blog very much. I have missed your posts the past month or so, although I am sure you are extremely busy!

Thank you for your clear-headedness!