David Kirby on Congressional Autism Hearing
Age of Autism Weekly Wrap Up: Arrogant, Ignorant "Experts"

Dear Washington: This is Autism Too.

Thanks julieWe would like very much to thank all those who took time out of their lives to represent our children in congress a week ago.  Thousands watched with rapt attention as the hearing regarding the federal response to autism got underway.  The audience was different this time, though.  Among the whispers and hum of activity that exists among "normal" crowds one could hear an occasional yelp.  An inappropriate laugh.  The sound of limbs flapping and the strange wake of energy such unnatural movement leaves behind.  Congress members expressed that perhaps the overflow room would be an appropriate place for some.  

This is life in the overflow room.  This. is. Autism.  Please, do not look away.  PLEASE ACT as our government has thus far, failed to do.  Let them know better diagnosis DOES NOT EQUAL APPROPRIATE MEDICAL CARE.  Autism. is. medical.  Regards,  Lisa Joyce Goes, Vice President of Public Relations, The Thinking Moms' Revolution

http://www.youtube.com/watch?feature=player_embedded&v=_lo3Zny7WGE

Comments

Benedetta

Thank You Jake;
I believe I have come to the same conclusion too.

For he is in contact with people that are severe to the point they can not speak. So, he has had input into this matter.

I think I am limited in my thinking - yes it is me that has a brain problem for I like a lot of Americans just have a hard time understanding people that will do anything for fame and money.

Jake Crosby

@Benedetta:

Ari Ne'eman is limited in his thinking, but not by his disorder. His political and ideological agenda limits his thinking to the point of opposing anything that is incompatible with or threatening to that agenda and supporting anything that sinks up with it. That is not the result of any neurological problem. He is fully capable of understanding the moral and ethical implications of his position and should be treated as such, just like anybody else who has come into conflict with Age of Autism's stated mission.

Benedetta

And Michael Carley - if he is on the spectrum then I give up - I have no understanding of anything.

Oh by the way - I suspect that Michael Carley too Brian Hooker's place because he said in his testimony that he only had since Monday to prepare his testimony.

Benedetta

I do have a question about Ari though.
I do have to wonder.
Is he really, really on the autism scale?

To see him talk, communicate, inflections in his speech -- well I thought Grandin Templin was a pretty good speaker - but I see her that she does have some problems.

Ari though was just about perfect at this Congressional hearing - is he always that perfect?

Benedetta

I think we are getting into a problem area that is unique for those with aspergers, and to those with PDD-NOS.

The the last pysch we paid for - My son was 22? or 23--said that my son really needed more communication skills training. The pysch said he will have to be made to understand that he does have problems because they (PDD-NOS or aspergers or what ever) all think they don't -- think they really have any major problems as a matter of fact they are maybe a little more thatn just fine - so thank you very much.

That is about his main words.

Well that kind of boxes a parent in -- On one hand - don't you want your child nearing adulthood to feel that he is alright?

But then if there are still some social skills they are lacking shouldn't they be made aware of it so they can work on it.

In the end my son refused to go for more training, and it is not like I could not talk him into it - because even though I could - did I want someone or people pointing out his faults?

Do you see how this is going???

This may be what Alison McNeil meant about Ari.

Can you fault someone that is high functioning as he is - for perhaps not being able to acess the true picture.
He is really intelligent but you must remember he still has a social blindness that he cannot help.
Well he could with more of the right input.
But it would rock his world and views and so is that fair? I mean really is it fair - in spite of how he angers us and we are so upset because he just can't see it?

tiredmom

I thought the video was effective. We need more stuff like this and this video needs to be circulated very widely to be effective, not just within the autism community. I wish that the name given to what Ari has and what the children in the video have was not the same. It sure doesn't look remotely the same. Why do they both have to be called autism?

Leslie Bradley

Iwent to the hearing with my autistic daughter Lauren and her twin sister Katie. I wanted to make sure the Members of the Committee saw Lauren. When the Congressional Staff tried to shunt Lauren into the "overflow" room, I objected eventually speaking to the chief clerk, saying that we had traveled with great difficulty and Lauren was the real reason for these hearings, We managed to talk our way into seats on the side of the room in the "Press Section." I know the members of Congress saw and noticed her! She lay under the Press table for part of the hearing and loudly chattered, flapped her hands and made requests at times! At one point,Mr. Issa, suggested Lauren might be more comfortable in the overflow room! I thought to myself, well he might be more comfortable if Lauren removed her somewhat disruptive self, but he has seen nothing! Not even a year ago, before ivig, Lauren would not just have been laying on the floor talking, but screaming, kicking and biting herself and possibly others. We made it through most of the hearing but, had to leave before the second panel ended. I was suprised she was able to last as long as she did. Go Lauren, you represent!

Not an MD

While I did not feel offended by the presence of Ari in the video, I can understand how others could feel that way. I had been so looking forward to seeing Les Miserables in the theater, but after learning that Sasha Baron Cohen has some small part in it, I will not pay a dime to see this movie. I refuse to even watch any movie with him in it. He has made fun of autism, and I will never forgive him. Likewise, I will never watch a TV program, or movie with Amanda Peet in it due to her vaccine activism. Those two actors are abhorrent to me.

Ari has no clue about what classic autism is, and I have a tough time understanding why, even with his disability, he cannot understand how extraordinarily horrible life is for those who suffer the daily challenges and torment of full blown autism, and how heartbreaking it is for their parents. How can Ari not understand that autism is most certainly not a "gift" for so many children who suffer so incredibly? I just don't get it, I guess.

another sigh

"As difficult and misguided as he may be [he] is to be respected. He is human. I do not hate him. I want and need for him to understand me... "

@Lisa,

Would you make that statement about Paul Offit or Seth Mnookin who are also human?

It's a fair question, since Ne'eman has been no less damaging to our cause.

(Ironically, this "act of diplomacy" will anger people on both sides.)

Lj goes

This was an act of diplomacy. I am no fan of Ari's personally...but whether we like it or not, he represents a contingent of our community. As I repeatedly assert to the ND crowd when they bash the hell out of me, "if my child could express his disdain for me as beautifully and articulately as you do....I would go away. Until then, I will respect that you exist, but it will not stop me from fighting for my child." Ari... As difficult and misguided as he may be is to be respected. He is human. I do not hate him. I want and need for him to understand me... and then... He needs to get out of my way. His issues are not mine. He believes in what he is doing. So. Do. I. Respect the hell out of u Jake. Sorry u r disappointed.

sigh

"He [Ari Ne'eman] is limited in his thinking due to his disorder. "

@ Alison McNeil,

That may be your opinion, but this video does not convey that. Furthermore, the legislators listening to him are not discounting what he says because he has a disorder.

John Stone

The point had to be made about Ari, particularly when you see a "lifestyle" journalist writing about autism in the Washington Post:

http://www.washingtonpost.com/blogs/on-parenting/post/adults-with-autism-tell-congress-more-funds-needed-for-services/2012/11/30/f07f1aa2-3a78-11e2-a263-f0ebffed2f15_blog.html

I added this comment to Mari-Jane Williams's blog:

"This is spin: I am glad that these two guys are doing alright but they cannot speak for the many, many who are severely disabled, who have no words or just a few, cannot negotiate a simple social situation let alone address Congress - very often they have other health problems and are in physical pain too. This is a good news story masking a bad news story: something which converts to hundreds of billions of dollars a year lost to the US economy, before we address the human hopelessness and suffering (let alone the avoidable causes).

"Mari-Jane or Polly-Anna?"

Sarah

Congress must see kids who are on the severe end. At a previous hearing Dan Burton showed a video of an 8 or 9 year old boy with autism. the boy couldn't stop moving, jumping, yelling. It was heartbreaking to watch and made a huge impression. Watch below and look at the reaction of the men and women in the audience. I hope at future hearing congressman can see a video that shows the true face of autism like this one above. They need to see that behind CDC statistics are real children and real families.

Here is the video Dan Burton showed in 2002:

http://www.youtube.com/watch?v=id-gGYQihaM

I'm with Jake

I'm with Jake on this one. I don't Think Ari even needed to be included in this video. Maybe a picture of him testifying and acknowledging that he is indeed articulate. He has his own agenda and very little overlaps with what ours is IMO. We want children to stop being made autistic. He thinks autism is a gift of some sort. He denies an epidemic. He couldn't care less about children/adults who are sick and in pain. It's all about services with him. And his "human rights" issues. He certainly has a right to proceed with his agenda, but trying to suck up to him and the ND cult is a stupid waste of time.

I didn't find this video all that effective. I think the women reading the words on the screen lessened it's impact. Let's the children's screams, cries, moans etc....be only what is heard.

Benedetta

Alician; That is exactly right.

I don't think he is being deceitful at all and I see him as a fragile person.

I am glad he has a job. Sure wish my son did -- he is rather fragile too.

Ari' is smart enough though to figure it out if given enough information, and enough time.

One of the things he might find out is that his community may be having a lot of seizures.

Many have them have then in their sleep esp the females around the full moon at midnight (I am being rather descriptive)

My daughter told me that studies show that aspergers are just as prone to seizures as the rest of the autism community.

No reasonable person can say that seizures are a part of a left brain, right brain; different thinking.

Jake Crosby

He's no advocate of mine!

Alison MacNeil

I think this video is one of the ballsiest and most directly effective things out there. I'm not a fan of Ari Ne'eman but I don't think this video panders to him. He is limited in his thinking due to his disorder. He may not be as impaired as my son, but his inability to take another person's position is blatantly clear. So, as mothers at TMR, an approach was taken to consider him as an advocate for the community he represents and to give him some credit for that. The larger point of the video, that our kids are suffering and that there is nothing to celebrate about their suffering, is the focus intended to stay with you.

mary

Heartbreaking. Reminds me of the Minamata videos on you tube. Which, by the way, was caused by mercury poisoning.

MotherofPossibility

I was so happy to see the children at the hearing. How completely appropriate to have them with us. It was truly moving.

One mother I have met several times at conferences was there from Indiana with her daughter. I was just so happy to see them again and her daughter was absolutely sparkling so I looked in her eyes and said, "You are beautiful and I am so happy you are here!" her mom wrapped her arms around her and she had a big smile.

They are why we are all here. This is hard to see happening to our children.

sigh

Why are Ari Ne'eman Michael John Carley being complimented and thanked in this video? Thinking Moms need to think a little deeper about how damaging their message has been to our children. Did you know Ari Ne'eman defends mercury in flu shots? Did you know he opposed the wandering code? Did you know he opposes preventing and curing autism? Did you know he considers the vaccine/autism link pseudoscience? Did you know he claims that autism has always been with us and there is no epidemic?

And you admire him? Really?

I don't understand the point of pandering to the ND's in this manner and then turning around and insulting them by inferring they don't have autism (but your kids do). You're not winning them over. You're just pi**ing them off.

The only thing I understood about this video is the agony these kids are in.

Jake Crosby

"We appreciate Ari Ne'eman's dedication to building a pathway to employment for people with autism. We sincerely hope that he is wildly successful in obtaining services for adults with autism. He is articulate and independent. We admire him."

Ok, this video should either be edited, or disappear forever. Ari Ne'eman has testified to the EEOC that "social pleasantry" should be eliminated from the workplace. That's no "pathway to employment for people with autism" - quite the opposite. It also perpetuates a harmful stereotype that people with autism are socially unpleasant people, when all-too-often it's people with autism who are victims of some very socially unpleasant people who do not fall on the autism spectrum at all. He also had no right testifying in the first place, given that when he did he had not held down a job in his life. He's also worked both directly and indirectly to deprive services for people with autism that range from opposing the wandering code to accusing an economist of eugenics when he did an anaylsis of the financial burden of autism and also tried to shut down developmental centers in New Jersey. But perhaps worst of all, he's helping to exacerbate the autism epidemic by denying what caused it and even by denying there is an epidemic. That means more people developing autism who will be in need of services as a result, which will in turn mean fewer services available for those who already have autism. All his talk of "civil rights" is nothing but smoke and mirrors. Anyone who praises Ari Ne'eman is digging their own grave. I am very dissapointed to see this run on Age of Autism and endorsed by a another contributing editor.

Maurine Meleck

Thank you to The Thinking Moms for this. All your work is so appreciated. I love you all and am going to forward this terrific piece you did to the gentleman from my congressman's office who attended the hearing. He wrote me an e-mai today telling me that he was able to hear Dr. Boyd's testimony only and had to leave. He explained to me how the numbers were 1 in 88 and early detection is so important. Like I needed that like I need to raise another child with autism.
Maurine

Anne McElroy Dachel


It’s impossible to view this and believe that children have always been like this---we just didn’t recognize it. I sincerely wish the congressional committee members along with Alan Guttmacher and Coleen Boyle had been exposed to this look at autism during the hearing.

Anne Dachel, Media

Wendy Frye

I wondered why some of the most important people in the audience were leaving early! OMG!

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