was Re: Ari Ne'eman and the NCD. now: Quackery

[Guest guest]

Tina and all,

Couldn't let this one slide. There are lots of "quackery" treatments out there, and they do not necessarily equate to biomedical. I don't know how long you've been in the autism game...but do you remember the year of secretin? I guess Noah was quite young then, because three of us were able to hold him down long enough to do a 20-minute infusion of this "miracle stuff" into him. How about NAET, or as I like to call it, voodoo? There are lots of very expensive, long-drawn-out programs out there that do not greatly improve, let alone "cure" a large majority of the participants. Son-Rise? I don't personally know anyone who had long-term gains from this, but I do know many disillusioned, much poorer families. Desperate parents will grasp at anything to help their children, this is why quackery proliferates and will continue to proliferate.

To: "sList " <sList >Sent: Tue, April 6, 2010 4:53:34 PMSubject: Re: Re: Ari Ne'eman and the NCD...Your thoughts?

Quite honestly, the only time I ever hear of "quackery" treatments is by those that are uninformed about biomedical interventions. For example, the recent articles in the Chicago Tribune that allege 2 very well known DAN docs put a child through "dangerous" treatments. It's bull crap reporting. My son is a patient of one of the docs and the "reporter" had no idea what they actually do. The article never cited the actual and specific procedures, nor indicated how the child is doing and reported an inaccurate procedure by stating these docs use a provoking agent in order to assess whether a child has heavy metal poisoning, which is entirely untrue. But these same ignorant people who judge the treatments don't do thorough research to learn about the biomedial, only judge and find information validating their already held preconceived notions.

It's frustrating.Sent from my iPhone

On Apr 6, 2010, at 10:03 AM, Lydia Glider- <mizlydiagmail (DOT) com> wrote:

Aye. We're in agreement on that, and I'm sure Ari is too. What we at ASAN are appalled by is the number of "quack" treatments thrown at parents which can be much more harmful than the problem they are alleged to solve. When a treatment causes more suffering than it proposes to alleviate, it's time to say NO. Sometimes we feel that not enough focus is put upon helping autistic people to communicate what they feel, need and want - and too much focus is put upon shaping our brethren to be what others want them to, consequences be damned.

On Mon, Apr 5, 2010 at 6:28 PM, <austintandt@ bellsouth. net> wrote:

I'm sure he doesn't want anyone to "suffer." What I think is being interpreted in his position (and others from his advocacy group) is that treating the myriad of medical conditions often accompanying or contributing to autistic symptoms is somehow not accepted.

It is always important to rule out medical conditions first...a concept not often practiced when it comes to autism spectrum disorders.

In my opinion, it would be interesting if some of the adults on the spectrum would consent to some of the labs and medical tests to determine if any of their current "symptoms" could be alleviated as a result of treating a medical condition. Or, perhaps they'd prefer to keep them. Who knows?

I know that if there was a chance that if I was flapping my arms, I would want to determine if I had mercury in my system. If my joints were hurting, I'd want to know if I had yeast overgrowth in my digestive tract. If I was often spacey and tired, had difficulty focusing and was bloated/constipated , in physical pain and banged my head as a result because I couldn't speak, I'd want to be tested for celiac and perhaps try a specific diet (gluten free) to see if my physical symptoms could be alleviated, thereby alleviating some of the symptoms of my diagnosis of autism.

I'd want to know...

From: Lydia Glider-

Sent: Saturday, April 03, 2010 4:15 PM

To: sList@ yahoogroups. com

Subject: Re: Re: Ari Ne'eman and the NCD...Your thoughts?

I think you misunderstand Ari. He does not want anyone to suffer, and he's one of the most levelheaded, fair-minded people I've ever come across. This page pretty well states his views. I think Autism Speaks and their offshoot, Generation Rescue are working to discredit Ari for their own reasons. What all of us (within ASAN) are opposed to is the practice of punishing kids for stims which are not harmful such as hand-flapping or spinning. We (ASAN) want to help as many autistic people

speak for themselves as possible, and we don't believe Autism Speaks wants that. We believe they want to speak FOR autistic people instead of empowering auties to express themselves, whether electronically or otherwise. Communication is a RIGHT.

On Fri, Apr 2, 2010 at 11:14 AM, <airbucketcomcast (DOT) net> wrote:

the only thing that freaks me out about this is that Ari has said that people like those which represent Generation Rescue and others who seek to "cure" or make better their children are enemies. his strong language against working to, what is in my view, improve negative symptoms, is scary. I would prefer to see someone with a more balanced or at least open mind.

From: Diane Rosenstein

Sent: Friday, April 02, 2010 12:27 AM

To: sList@ yahoogroups. com

Subject: Re: Ari Ne'eman and the NCD...Your thoughts?

Ven,

Yes your position has been clarified.

Thanks for your response.

-- Lydia Glider-Broward County Special Needs Parents Examinerwww.examiner. com<3 <3 <3 <3 <3 <3 <3 WE CAN DO THIShttp://www.nopom. info<3 <3 <3 <3 <3 <3 <3Hear the REAL Voices of Autism:www.iamautism. org<3 <3 <3 <3 <3 <3 <3"First they ignore you, then they ridicule you, then they fight you, then you win." ~~Mahatma Gandhi