Ari Ne'eman and the NCD...Your thoughts?

[Guest guest]

http://www.ncd.gov/Please check the link above. It has the NCD's Mission Statement."The purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society."Although I don't necessarily agree with Mr. Ne'eman views on genetic research, I understand that none of that would be discussed at the NCD. Actually, the points discussed by the Council are exactly the same ones Mr. Ne'eman works toward. So, maybe he would be a good ally on that front. He's intelligent, outspoken, persuasive... Just as with most elected officials, you "take the good with the bad" so to speak.What do you all think???GabiSent from my iPhone

[Guest guest]

I think that Ari is an amazing individual and has a perspective that very few have. Also, I am unclear why his views on research would be an issue for being on any committee regardless of the purpose. Isn't the purpose of councils, committees, panels, etc. to have a different perspective from a lot of different people? The fact that Mr. Neeman does not share the same opinion as you or maybe most people, is the exact reason he should be on the council. Furthermore, what if research views were going to be discussed? Would you keep him off because you disagree with him? If this council or any other body would keep people off because they didn't agree with them, then I wouldn't want to be a part of it. One sided thinking is the reason we have so many problems in the disability community and society as a whole.

No offense, but what organization are you with and why is this email going around to get opinions? Do you have a say in whether Ari is appointed to this council or are you just curious of what other people think?

Regards,

Ven Sequenzia

President

Autism Society of America

State of Florida Chapter

Ari Ne'eman and the NCD...Your thoughts?

http://www.ncd.gov/

Please check the link above. It has the NCD's Mission Statement.

"The purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society."

Although I don't necessarily agree with Mr. Ne'eman views on genetic research, I understand that none of that would be discussed at the NCD.

Actually, the points discussed by the Council are exactly the same ones Mr. Ne'eman works toward. So, maybe he wo uld be a good ally on that front. He's intelligent, outspoken, persuasive...

Just as with most elected officials, you "take the good with the bad" so to speak.

What do you all think???

Gabi

Sent from my iPhone

[Guest guest]

Being controversail is never a bad thing. It forces us to examine all sides of an issue and think before we act. Ari does not present himself as a representative of the Asperger community; rather as an individual onthe Autism Spectrum. He has his preferences, as do we all, and has certain autism groups that he dislikes, (as do we all). He has no personal agendas other than advocacy, and will make a wonderful addition to any Council. Yes, he's young and learning, but his amazing analytical skills and research abilities will guarentee fairness and presentation of both sides of the issue. Besides, he's a nice guy from a great and supportive family. Ansd folks, we as a community, need all the help and support we can get. Who Speaks? WE SPEAK!!!.

Ari Ne'eman and the NCD...Your thoughts?

http://www.ncd. gov/

Please check the link above. It has the NCD's Mission Statement.

"The purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society."

Although I don't necessarily agree with Mr. Ne'eman views on genetic research, I understand that none of that would be discussed at the NCD.

Actually, the points discussed by the Council are exactly the same ones Mr. Ne'eman works toward. So, maybe he wo uld be a good ally on that front. He's intelligent, outspoken, persuasive.. .

Just as with most elected officials, you "take the good with the bad" so to speak.

What do you all think???

Gabi

Sent from my iPhone

[Guest guest]

Diane:

This is why I hate email when you are trying to have a conversation. There is so much misunderstanding when you can't speak to someone ace to face. The email was taken out of context.

My concern was only that because of Ari's opinions that someone would want to omit him or keep him off of the council.

If you read what Gabi stated, she said she didn't agree with his position on research. I read into it that it was an issue for her. This is the problem with emails. You can't see the person speaking. You can't pick up on the correct intent and it gets blown out of proportion because of this.

My intent was just because Ari's opinion does not agree with someone else's, he should not be denied the opportunity to be on the council, purely because of his opinions. Differing opinions are necessary to achieve the greatest vetting of an issue or topic.

Furthermore, I have no agenda or attitude toward Gabi or anyone else. I was merely trying to find out the motive and/or reason why this was being sent around. She did communicate back to me what her intent was.

I was not trying to offend anyone or be one sided. People who know me, know that I am all about transparency and trying to work out differences and get to the best possible outcome for all concerned. Yes, I think Ari is a brilliant young man and he is opinionated. I also think that he would make a great addition to the council, because he has a perspective that others may not consider. Again, to achieve the best possible outcomes for our children and adults affected by autism or any other disability, we need a lot of different sides to be at the table. If the intent is to limit those sides from being a part of the discussion, then we do everyone a disservice.

I hope this clarifies my position.

Regards,

Ven Sequenzia

President

Autism Society of America

State of Florida Chapter

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

Mr. Sequenzia,

You say "no offense" but your e-mail screams otherwise! Why does a person have to belong to an organization in order to gather opinions? YOUR opinion came through loud and clear!

The person who wrote the original E-mail said good things about him & then expressed that she might not necessarily share his views on one issue.

Your allegation of "One sided thinking is the reason we have so many problems in the disability community and society as a whole." is harsh and rather misplaced, especially considering how one-sided YOUR--and not HER-- e-mail was!

This is a board for sharing opinions, not snuffing them.

I am most perplexed by your statement:

"The fact that Mr. Neeman does not share the same opinion as you or maybe most people, is the exact reason he should be on the council."

Did the President of the Florida Chapter of the Autism Society of America just say that Ari Ne'eman should be on the council because he does not share the same opinion as Gabi Yahoo? Or is this some kind of joke?

[Guest guest]

Ven,

Yes your position has been clarified.

Thanks for your response.

[Guest guest]

Ven,

Yes your position has been clarified.

Thanks for your response.

[Guest guest]

Ven,

Yes your position has been clarified.

Thanks for your response.

[Guest guest]

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

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

Ven,

Yes your position has been clarified.

Thanks for your response.

[Guest guest]

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

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

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

[Guest guest]

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

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

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

[Guest guest]

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

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

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

[Guest guest]

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

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, <austintandtbellsouth (DOT) 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

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

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

[Guest guest]

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

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, <austintandtbellsouth (DOT) 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

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

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