Autism Self-Advocate Calls Attention to Need for Meaningful Transition Supports

[Guest guest]

http://www.ncwd-youth.info/blog/?p=105 "Determine that the thing can and shall be done, and then we shall find the way." -Abraham Lincoln

[Guest guest]

One of the few things I in general agree with ASAN about. However I'm a person

that does not complain unless I have the solution. Ari does not have the

solutions. I have the solutions least for my area and that is my job. What has

hindered ASAN is it's radicalism and exclusion policy of people with the same

diagnoses that think differently. It's supposed to be a self-advocacy network

and Ari seems to be the only advocate. President Obama and other politicians

have a history of nominating people that are potential opponents. Namely the

autism abortion issue.

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> http://www.ncwd-youth.info/blog/?p=105

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> " Determine that the thing can and shall be done, and then we shall find the

way. "

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-Abraham Lincoln

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[Guest guest]

Have either of you met and had a conversation with Ari? If not, then I would say you need to do that prior to making all these judgements about him. I have been following these communications and would like to give my two cents worth.

Ari Ne'eman is an articulate, intelligent individual and at age 23 is on the President's Council for Disabilities and has been a breath of fresh air, in my opinion. While I may not agree with everything he stands for, there are many things he stands for that I do agree with. He thinks that all people on the spectrum deserve respect. He thinks that we should be taking into consideration what our child or adult on the spectrum wants. How many times have we as parents made decisions for our children without even considering their input? While it may be difficult for many to communicate in the traditional manner, all of them have some form of communication to let us know if they are upset with something or happy about it. For instance, if a child throws a tantrum when walking into a noisy situation and they have sensory issues, logically, they are in distress due to the over stimulation. When we have the opinion that there is nobody home or that they don't know what they want and we have to decide for them, we are aggravating the situation. Parents need to be aware that all of our kids on the spectrum have some level of intelligence and while it may be hard as hell to figure out what it is, that doesn't mean that we are correct in our assumptions of their level of functioning, just because they cannot communicate it to us. My daughter had a 35 IQ according to a school psychologist. Today she writes poetry, she self advocates and she is an amazing woman. She still has seizures almost every day. She cannot communicate verbally and she has major trouble manipulating her environment. But, she has a say in everything that happens and decides if she wants to go to the pool or sleep or what clothes to wear. How many of us just fall into the trap of what the professional says is fact? I respect many professionals that work with our children. I also have some that I have me over the years that I wouldn't take my dog to.

As for the comments about ASAN only being for some high functioning individuals, I disagree. I have met with Ari on a few occasions and seen him interact with many different individuals on the spectrum, including my own daughter, who according to the experts is considered severe, and he has shown nothing but respect and I have never seen him attack or go after an individual on the spectrum for disagreeing with him. He is passionate in his beliefs and yes, he may disagree with some organizations' missions and he is vocal about it. What exactly is wrong with the opinion that we are spending millions on research to find a cause and cure and almost none on addressing the people who are living with it every day? We spend almost nothing to make adults contributing members of society with a job. We would rather house everyone in an adult day training center putting pegs in a pegboard or assembling bags of stuff. While some may be happy doing that and some may have severe limitations to holding a job, many can and would if given the opportunity.

As for the abortion and politics issue, I am going to make a comment and I welcome feedback. If we find a cause and a genetic marker for autism and a family gets a diagnosis while the baby is in uteuro, don't you think many if not most would abort? I was having a discussion, just last night with a parent who runs an organization for Down Syndrome and her comment to me was 90% of parents that find out their child has the genetic marker for downs, abort the child. I understand that it is a personal decision, but the truth is, we are trying to find a cause and marker and cure? So nobody is born with autism in the future. If you disagree, then what other purpose is there? Little or none of the current research to find a cause and cure will address the 1.5 million people living with autism today. While having a child with autism is very difficult, there are many things that it has done to change me and who I have become. I think everyone is in this world for a reason and while we have a need to fix everything or everyone, it doesn't make all of it right.

What Ari is saying is for people to start addressing the people on the spectrum that are living and breathing today. We need to provide care, therapy, services for adults other than baby sitting and existing. We need to address the fact that this state and Country don't get the fact that while the numbers of autism and other disabilities increase, we keep cutting funding to serve them. We are creating a situation that is going to be catastrophic when all these kids become adults. Nobody wants to deal with the adults. Well, hello, they all grow up.

In closing, don't shoot the messenger for the message. While you may not agree with Ari on some issues, he is not this self absorbed person that doesn't care. He wants decisions that are being made about people with autism to include them. Not just their parents. I agree with him. I can't tell you how many times I have done things for my daughter that not only didn't she want, I didn't consider the impact on her until after the fact. What parent wouldn't want their child to have a say in what is going to happen daily for them? I can't think of any. So, I suggest you read the information in the post again and tell me what problem you really have with it? Because, I don't see it.

http://www.ncwd-youth.info/blog/?p=105

Regards,

Ven Sequenzia

President

Autism Society of America

State of Florida Chapter

Re: Autism Self-Advocate Calls Attention to Need for Meaningful Transition Supports

One of the few things I in general agree with ASAN about. However I'm a person that does not complain unless I have the solution. Ari does not have the solutions. I have the solutions least for my area and that is my job. What has hindered ASAN is it's radicalism and exclusion policy of people with the same diagnoses that think differently. It's supposed to be a self-advocacy network and Ari seems to be the only advocate. President Obama and other politicians have a history of nominating people that are potential opponents. Namely the autism abortion issue.

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> http://www.ncwd-youth.info/blog/?p=105

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> "Determine that the thing can and shall be done, and then we shall find the way."

> -Abraham Lincoln

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[Guest guest]



People do not have to agree with Ari and his point of view. I have autism and I don't agree with signs calling people marching for autism pity or that they are bigots. It disgusts me the tactics used by ASAN and as a person with autism I am embarressed. They have been highly disprespectfull toward people that have cared and helped. A breath of fresh air would be respecting other peoples views of autism without harming the good intentions of others. Also Ari was never elected to a network and never elected to the position he is in with the government. No democratic voting takes place within ASAN and organizations like people first where I live vote in their president and board.

Also issues don't go together such as selective abortion and asking for services for adults with very high functioning autism. The media and other advocacy groups already include people of all kinds of saverity of autism. However with ASAN all we hear from is people with a certain fixed point of view and when a non-elected figure allows it.

Young

Re: Autism Self-Advocate Calls Attention to Need for Meaningful Transition Supports

One of the few things I in general agree with ASAN about. However I'm a person that does not complain unless I have the solution. Ari does not have the solutions. I have the solutions least for my area and that is my job. What has hindered ASAN is it's radicalism and exclusion policy of people with the same diagnoses that think differently. It's supposed to be a self-advocacy network and Ari seems to be the only advocate. President Obama and other politicians have a history of nominating people that are potential opponents. Namely the autism abortion issue.>> > > http://www.ncwd-youth.info/blog/?p=105> > > "Determine that the thing can and shall be done, and then we shall find the way." > -Abraham Lincoln>

[Guest guest]

Ven,

Since you have met Ari, perhaps you can put him in contact with so the two of them, both being articulate, intelligent individuals can work it out for themselves. You stated in paragraph one that if had not met Ari then perhaps he should do so before making any judgments about him. We make judgments about people, particularly people in government every day without meeting the individuals. For example, I have never met Governor Rick who is by all accounts intelligent and articulate, but I still have come to the conclusion that he is a pompous a %$. I made those judgments of Gov. just like made his judgments of Ari; by listening to his point of view, watching his actions, and then disagreeing with him on just about every count. So I ask you, what is wrong with that? Thank you in advance for your time.

Regards,

West

Re: Autism Self-Advocate Calls Attention to Need for Meaningful Transition Supports

One of the few things I in general agree with ASAN about. However I'm a person that does not complain unless I have the solution. Ari does not have the solutions. I have the solutions least for my area and that is my job. What has hindered ASAN is it's radicalism and exclusion policy of people with the same diagnoses that think differently. It's supposed to be a self-advocacy network and Ari seems to be the only advocate. President Obama and other politicians have a history of nominating people that are potential opponents. Namely the autism abortion issue.

>

>

>

> http://www.ncwd-youth.info/blog/?p=105

>

>

> "Determine that the thing can and shall be done, and then we shall find the way."

> -Abraham Lincoln

>

[Guest guest]

I absolutely must agree that Ari should not be judged without meeting him first. Not only has he brought the discussion of self-advocacy to new levels, he has done it in a professional, timely, and tasteful manner. I have seen him meet with kids with disabilities of all levels and treated each and every one with respect and solicited their opinions. Despite all the hype and credit that many "Autism" organizations take...the dismal truth is that services for adults are at an all time low! There are less Federal employees with disabilities in the workplace than there were 5 years ago. There is barely a trickle of dollars going to adult/transitional services compared to what's going for research. We all make mistakes, and anything Ari has done that folks disagree with simply proves he is HUMAN! And believe me, for years, being treated "humanely" was something folks with autism were not seeing. Lastly, we all do what we can, in our own way, to enrich the lives of those we love. Being divisive accomplishes nothing. ASAN, like every other group will always have fans and foes.....and they should, because they have earned the right to be treated the same way we would treat any other group.

Re: Autism Self-Advocate Calls Attention to Need for Meaningful Transition Supports

One of the few things I in general agree with ASAN about. However I'm a person that does not complain unless I have the solution. Ari does not have the solutions. I have the solutions least for my area and that is my job. What has hindered ASAN is it's radicalism and exclusion policy of people with the same diagnoses that think differently. It's supposed to be a self-advocacy network and Ari seems to be the only advocate. President Obama and other politicians have a history of nominating people that are potential opponents. Namely the autism abortion issue.

>

>

>

> http://www.ncwd-youth.info/blog/?p=105

>

>

> "Determine that the thing can and shall be done, and then we shall find the way."

> -Abraham Lincoln

>

[Guest guest]



I don't agree with the social tact of forcing my opinion on others otherwise it is a bigotry. ASAN has abused the word "discrimination" and "bigotry". To gain my success where I live I've done so without using those tactics. The good things of ASAN may be undermined by very poor public relations. I've even been accused of being an ASAN and some members of ASAN said my mom brought me around town for others to feel sorry for me in reference to my success.Forcing views is different then being deplomatic and professions are pressured socially in the same way. I don't think it is good for special interest to get in the middle of self-advocates given the gravity of the issues at hand. Tehse are important social matters that have long-term effects and proper methodologies empower real inspiring change and not artificial change with emotional provokation.

Young

Re: Autism Self-Advocate Calls Attention to Need for Meaningful Transition Supports

One of the few things I in general agree with ASAN about. However I'm a person that does not complain unless I have the solution. Ari does not have the solutions. I have the solutions least for my area and that is my job. What has hindered ASAN is it's radicalism and exclusion policy of people with the same diagnoses that think differently. It's supposed to be a self-advocacy network and Ari seems to be the only advocate. President Obama and other politicians have a history of nominating people that are potential opponents. Namely the autism abortion issue.>> > > http://www.ncwd-youth.info/blog/?p=105> > > "Determine that the thing can and shall be done, and then we shall find the way." > -Abraham Lincoln>

[Guest guest]

,

I agree. They should meet to have a discussion. I never said he cannot have his opinion. He is entitled to it. I just know that Ari seems to be very misunderstood. Regardless, nobody is ever going to agree on everything, especially when it comes to autism.

Regards,

Ven Sequenzia

President

Autism Society of America

State of Florida Chapter

Re: Autism Self-Advocate Calls Attention to Need for Meaningful Transition Supports

One of the few things I in general agree with ASAN about. However I'm a person that does not complain unless I have the solution. Ari does not have the solutions. I have the solutions least for my area and that is my job. What has hindered ASAN is it's radicalism and exclusion policy of people with the same diagnoses that think differently. It's supposed to be a self-advocacy network and Ari seems to be the only advocate. President Obama and other politicians have a history of nominating people that are potential opponents. Namely the autism abortion issue.

>

>

>

> http://www.ncwd-youth.info/blog/?p=105

>

>

> "Determine that the thing can and shall be done, and then we shall find the way."

> -Abraham Lincoln

>

[Guest guest]

Herm,

Good to hear from you and I appreciate the comments. I can't tell you how many times over the years I have been called all kinds of things, confrontational, controversial, passionate, opinionated, etc. I am not ashamed of it, so neither should Ari, , , you or anyone else be for that matter. The good thing is we can all talk and make our case and if needed agree to disagree. At least we have that freedom for now in the USA.

Regards,

Ven Sequenzia

President

Autism Society of America

State of Florida Chapter

Re: Autism Self-Advocate Calls Attention to Need for Meaningful Transition Supports

One of the few things I in general agree with ASAN about. However I'm a person that does not complain unless I have the solution. Ari does not have the solutions. I have the solutions least for my area and that is my job. What has hindered ASAN is it's radicalism and exclusion policy of people with the same diagnoses that think differently. It's supposed to be a self-advocacy network and Ari seems to be the only advocate. President Obama and other politicians have a history of nominating people that are potential opponents. Namely the autism abortion issue.

>

>

>

> http://www.ncwd-youth.info/blog/?p=105

>

>

> "Determine that the thing can and shall be done, and then we shall find the way."

> -Abraham Lincoln

>

[Guest guest]

The autism specialist here wanted me to go out of state but support services do

not go outside of the state. I do not travel, drive and doing something like

that would be a challenge. Like getting lost easy or the rigid sense to stay

within the familiarly. That is why I have a behaviorist to work on that but that

is asking the Regional Center for to much funding for supports and also I do not

make person money from the advocacy so I cannot afford it.

Things can be resolved over the internet and I will make one more post which you

can forward to him and others of the alike approaches. Give me a few hours here

and if you are meaningful then it is important enough for me to spend the time

to write a proclamation letter.

Young

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> I agree. They should meet to have a discussion. I never said he cannot have

his opinion. He is entitled to it. I just know that Ari seems to be very

misunderstood. Regardless, nobody is ever going to agree on everything,

especially when it comes to autism.

>

> Regards,

> Ven Sequenzia

> President

> Autism Society of America

> State of Florida Chapter

>

[Guest guest]

Well I was going to write a letter this evening to Ari and ASAN. I went to look

up how to spell his last name and found yet another public relations

embarrassment. About the PBS autism awareness protest and now ASAN is calling

the older gentleman and grandfather " ignorant " . I'm sorry that ASAN is it's own

worse foe and I don't think I need to bother with ASAN anymore in worry of them.

ASAN could have been such a great platform if it had been formulated right.

True leadership does not lack wisdom nor spirited resolve. Fools act blindly

then feel the victim and blame the result on others. I do not know of any

self-advocates where I live that are so very destructive to themselves in

advocacy. Just folks know I don't know the ASAN please I really have nothing to

do with them.

Young