I wonder if I could perhaps shed some light on what goes on in an aspie's mind while watching something like this.

Everyone groups us in with everyone else with autism. Many of us end up doing so because that is what all those around us do. Therefore, when something like this comes on, we don't really think about the fact that the documentry is not talking about OUR SIDE OF THE SPECTRUM. Because of this, we are likely to get angry, get upset, and get offended. I have noticed time and time again, with self advocates on my side of the spectrum, that though we like to think we can represent the full spectrum, we really have no concept of what it is like to be on the more severe end of things.

I remember how much of an eye opener it was for me when I toured my first habilitation center as part of my job. I went in the bathroom and cried and cried for thirty minutes after watching these kids beat themselves and scream and throw themselves into walls and stem without control. I couldn't make myself stop because I couldn't help but think about the fact that they are trapped inside their own bodies with no way to communicate or get out! There needs to be more education I think for those self advocates, like myself, who wish to represent the broader spectrum.

They need to visit the hab centers, and observe those on the other side of the spectrum. Then perhaps they might start to get a better understanding on where the parents are coming from. At least one can always hope!

This Ari person is walking and talking. I'm sorry that the government has included him in the autism diagnosis.... I guess it gives him some sort of claim to fame in his head, but he is not a child who can't walk or talk straight. The A word needs to go away. It is preventing children from recovering from medical illness. Any doctor who labels a child with Autism should be sued for negligence in order to prevent further negligence on other children

One thing that i find interesting is that Ari and many ND proponents are afraid that a pre-natal test for autism (based on the ASD-is-all-genetic point of view) will be designed that will result in autistic children being aborted. Yet he sits on the IACC, appointed by one of the most pro-abortion presidents ever elected. That'a an interesting conflict if he really thought about it.

The PBS Autism Now series has been the best coverage I've ever seen. I will send a letter to PBS and give them kudos.

Thank you PBS for an incredible look into autism and the problems a family faces, now and in the future.
Many of the parent autism organizations are finally coming together as one voice for the benefit of individuals with autism. Finally, the public bickering is less than before.

In addition, Temple Grandin and Stephen Shore have been embraced as excellent examples of individuals with autism. They realize and support the importance of parent interventions to help their child..

I am a firm believer in self-determination and individuals with autism having a voice; however, many need to focus on a successful life, rather than splitting the autism community. My motto is, 'Lead by example.' Now surfacing are the idealistic, self-centered individuals that think they are experts on autism trying to highlight themselves. Many of these individuals are bitter, angry at their parents for trying to 'change' them, and determined to pull everyone else down with their corruptive techniques.

Again, thank you PBS for not making this show a platform for debate. I have a daughter, forty years old with classic autism. She has two 'paying' jobs, lives in her own condo, drives her own car and has had a boy friend for over two years. She loves her life and being a part of her community. Yes, she still has classic autism, and receives weekly language therapy and supported living services.

Our family has been very supportive in her autism. Families need to know they can make a difference in their child. It has not been easy and she could never have done this on her own. I feel our family is twenty years ahead of our time! (www.autism-believe-future.com)

Robert MacNeil: This, thru PBS, has been an incredible piece of jouralism this week on autism. I am the parent of a forty year old who does the DAN protocol, plus more. My daughter drives, has two 'paying' jobs, lives in her own condo and has a boyfriend. . . all in the past ten years. Yes, she has classic autism and she received state support. Our family is obviously 20 years ahead of our time. www.autism-believe-future.com.
If I was a parent of a young child with autism, you have awaken their eyes to the lack of support they will and are going to receive. I was furious with the segment on lack of medical interventions . . . as we all should be. EXCELLENT Reporting!

The trouble most people with Aspergers have is that we do not want who we are as human beings cured.

Now that said it needs to be understood that not everything is good for everyone. Due diligence is lacking in the testing for immune issues, and other such issues(mitochondrial,allergies,celiacs). I've found when I talk to other people with Aspergers and explain what I think the problem is than a lot of them listen and agree with me. It helps I have Aspergers too though and have done the biomed. Life without physical misery is better I'm not cured but by far life is better. A lot of adults with ASDs suffer in silence from the same issues w/GI,immune issues, and other comorbids. Don't tar and feather all the adults with Aspergers not all of us believe in what ASAN does. We need to get the word out that we care about those with issues that are adults and that BIOMED works not just for children but adults too. Find the adults with autism that reacted to vaccines and talk to them and their families. Adults shouldn't be left out of the equation a lot of them care about children on the spectrum. A lot of us are hurting too...if you don't believe me just go on an autism website and ask how many have GI issues. You'll find so many adults in pain from the same things that our children are hurting from. So many other Aspies I know are miserable. A lot of them even accept the idea that vaccines are not universally good b/c of immunological problems and also that toxicity has many different sources.

Well, I have the series dvr'd, after watching the first episode on Monday, I couldn't BARE to watch anymore until inKMEW fornsure the rest of the week was not going to be some "normal" turn of events and into some Big PHARMA Ad and end up with me going from OVERJOYED that FINALLY some one is TELLING THE REALITY OF THE STATE OF ILLNESS our kids are in, to super let down, slapped in the face, tricked, and our kids loves stomped on again. I just couldn't do it again. I know, sad, but I only told a few people too, and of course not any of the skeptics either...because eveyr single other time I thought a news story/series look PROMISING in REALLY showing all of our realities, I end extremely LET DOWN!

HOWEVER, Thank GOODNESS I DVR'D it because now I will for sure go back and watch, and if they are going to sell DVD copies, I will be first in line to get some to share!

I AM HAPPY to have finally seen SOMETHING that TRUELY represents MY KIDS, the majority of our kids here at AoA, and other "regressive" or newer "autism" kids and young adults!!!!

Now, as far as This young man Ari is concerned, if he TRUELY was HONEST in his efforts to REPRESENT and ADVOCATE for kids and adults with Autism SPECTRUM disorders, he would be THANKING PBS for giving a voice to kids like ours, which THANKFULLY he is not as affected as our kids, and not as physically I'll as our kids, yet they are of the same Community!!!

If he was HONEST in his efforts to really be an advocate, he would share in our relief that ALL aspects of this HUGE SPECTRUM are being shared, and be HONORED and THANKFUL that he IS ABLE TO HELP speak for those that DO NOT HAVE THE VOICES to speak! PLAIN AND SIMPLE, BLACK AND WHITE! PERIOD! (and yes, I know caps=shouting, I AM shouting!). ;)

I still can not understand how any one parent or person can tell another that the way you are trying to help your child is showing that you do not love or care for them....meaning, that because my child has not had a formed bowl movement in a year, and has explosive poo's that I should NOT treat that because he has Autism and that looks like to my child that I think he "needs to be cured, because he is less than, born wrong" or some other of the things we who ARE treating the physical health illnesses have been accused of!!!!

I fundamentally disagree that diareha, allergies, asthma, skin problems, food allergies, severe GI issues and pain, are just "part of Autism" , that if my child has a physical health illness I am going to everything in my power to rid him of that physical health illness/bacteria/virus/etc in order for my child to be pain free and as health as possible, don't WE ALL WANT THAT for our kids and loved ones? I never knew a parent who wanted their child to live a life of pain and sickness, doesn't make sense to me....

That being said Autism is a spectrum disorder, and I don't pretend my boys are the highest functioning nor the lowest, and I would NEVER judge a child/adult or parent who might be higher or lower functioning who lives something different than we do. Sure, I think there are kids/people with higher functioning levels who do not have the health issues that my kids, or many of our kids here do...do I have a right to tell them they do or do not love their kids because they are not doing bio-med orn"treating anything", no of course not, especially if the child isn't in pain/having those health issues going purposely untreated....the same should be for a person or parent to not judge me if I AM treating a physical medical health problem. When we start to treat a medical issue, low and behold, I know in my house, various things get better, they are in less GI PAIN, they have no need for allergy medication daily, when a cold bug strikes, it lasts a normal course of a few days not 2-3 WEEKS with serious side effects...and guess what, then we see a decrease in various "Autism" symptoms! Less anxiety, more ability to focus/transition, lots of things....

So the fundamental disagreement between Ari and others from ASAN and the like, and our community, is that they feel that we are trying to "treat or cure" our Childs "Autism" ....but we are REALLY TREATING/CURING the MEDICAL ISSUE, and never would think for ONE MILLI-SECOND that there was a "personality" to be treated or that our child was "wrong or broken" ...our child has a medical health issue that we treat, and THANFULLY we see decreases in the symptoms of our Childs "Autism" when those medical health issues are treated! It's a totally different thing!

I know WE ALL know this, but I now hope that MORE people will understand that there ARE SO MANY areas/aspects to this WIDE WIDE SPECTRUM called "Autism" and that there are SO MANY kids and adults that suffer from a myriad of medical health issues that until late, most doctors turned usnaway because of "that is just a part of Autism" and that's that, because there were not "any creditble peer reviewed published studies to "PROOVE" this or that"....blah blah blah, WE KNOW better now, THANKFULLY, and it's really unfortunate that it's taken THIS LONG to come half an inch closer to the REAL AWARENESS to become more mainstream....I really feel it's not just Pharma that's been holding it back, but ALSO the people within the Autism Community like Ari and the ASAN, and others that like to argue and point fingers and judge US , we are ALL suppose to be in the same, or at least similar boats, but Ari and others seem to steer far away from our boats and would much rather jump ship and risk their own safe journeys than be even mentioned I'm the same boat with us "ignorant and naive, dangerous, anti-vaccine, anti-tolerance, over zealous parents whonwould rather spend time working on snake oil cures than loving and accepting our own child with Autism the way they are"....

How can any parent tell another that they do not LOVE OR ACCEPT their own child, just be THANKFUL your child isn't in pain from not having a formed bowel movement in a year or two or worse! And instead of critizing, EMPATHIZE and let's FIGHT FOR OUR CHILDRENS AND LOVED ONES RIGHTS, ALL OF THEM! Not just the ones without the physical medical health issues!

My long-winded point, I think it's TERRIBLE that someone who was APPOINTED by the President of the US to ADVOCATE for, REPRESENT, and SPEAK for those literally without a voice, can actually have the balls to write a COMPLAINT letter when a journalist FINALLY takes the time to discuss some of the kids/people on the other side of the SPECTRUM of Autism as they have! That shows, and PROOVES TO ME once and for all (I have known for awhile, but I tend to give the benefit of the doubt longer than most I guess, but this sealed the deal for me), Ari DOES NOT have the honest and REAL INTENT to speak for, advocate for, or represent, ANY other part of the Autism Spectrum, other than his own...

Why is it that Ari and others get so offended when we discuss OUR PERSONAL experiences with out kids, and are helping our kids FEEL BETTER medically and physically? That because we dare to even discuss it or if a media outlet even dares to discuss it, that they/we are OFFENSIVE and dangerous/etc? It saddens me that this divide that THEY have caused and continue to defend/spread hate/untruths and lies about our "bogus" this or that...because ultimately it's HURTING ALL kids and adults who have Autism now, and those who will have it in the future, plain and simple.

We could be a LOT FURTHER if Ari and others in the ND crowd took a step back and really LOOKED at this while picture! What would they do if their child with Autism, or themselves with Autism suddenly had painful diarrhea for a year? My guess would be they would find the root of the problem and then fix the problem so they didn't have that medical issue anymore, right? So why can't we do the same?

This just shows that Ari is not the ONE to represent any of the kids like ours, any that have regressed, any that have health issues as well, and that we are still VERY MUCH unrepresented everywhere!

But PBS, THANKS FOR SHARING this journey and this series with everyone, I hope it gets some more airtime, and much more press because it is FINALLY showing that THERE Is a HUGE spectrum, and that our kids ALSO DESERVE some acknowledgement and advocacy as well!

Thanks!
Angie
Proud Mom to Ethan, Alex, and Megan

Old school journalism where they report the facts rather than shape some narrative.

Unfortunately as media becomes more and more controlled this kind of journalism seems to be disappearing.

Vacationing in MI. Saw this, called. I feel like it's that important. Tonight's airing had best serve as a wake up call. If not, it' going to have to be 1 in 3 with a severe autism diagnosis. Given the rate of denial and current legislation we should get there by 2014.

You know what? I am pretty convinced that this ASAN group is created and fully backed by the significant organizing influence of big pharma. This is standard operating procedure. In the mental illness arena, National Alliance on Mental Illness (NAMI) is also supposed to be grassroots, but it tenaciously and even ferociously promotes big pharma's interests. These organizations do not originate without significant input. Even the idea comes from big pharma.

Happy Easter everybody!

Dr. Martha Herbert spoke up about the children having some different genes than their real parents. HELLO_OOO! How can this happen? I wish there was a group of doctors checking out the lines of human diploid cells injected into the children around the world that came from the 2 legally aborted children in the 1960s who were handed over for vaccine research. The CDC has no studies showing that these poor aborted children had normal genes,,, yet their cells are injected into children daily. The science has changed since the 60s. There are no studies with the new science... or at least, the cdc refused to acknowledge them,,, just saying that it is safe to inject the human diploid cells from dead babies into children around the world.. Can we please start asking about these two poor aborted babies? God rest their souls, AND God bless the children who receive their cells.

My addendum to the letter I sent:

Additionally, as a parent of someone with profound autism, I find it ludicrous that certain individuals who purport to have autism, including Presidential appointee Ari Ne-eman, feel that it is dehumanizing to portray autistics as not able "to look into each others eyes and feel that other person's existence and what might be going on in their mind, and to empathize with them."; It's a developmental disability whose key component is the inability to effectively connect with the world around oneself, hence the Latin root 'aut' in 'autism'. Those whose cognitive abilities allow them to grasp that concept would be wise to realize there are many of their fellow autistics who cannot.

The aforementioned Mr. Ne'eman, who also sits on the IACC and disabilities council, should be especially cognizant of this fact, but all too often appears to be swayed by those who voice displeasure on his website. Sure, the loud, even screaming patient garners the most attention; conversely it is the quiet patient who often needs the most attentive care. My daughter's non-verbal voice is absent from this debate, so I must speak for her. In this I can only hope that eventually all with autism are provided the help and support they need, as determined by their abilities or lack thereof, not by the motivations of some knee-jerk bloggers who hide behind anonymity.

Please do not be intimidated by the societal-political motivations of these rabble-rousers. They have continually shown a total lack of empathy (ironic, I know) for those on the SAME spectrum who are significantly lower functioning then they, and suffering as a result.

Thank you for having the courage to proceed with telling the truth. To quote, "without courage, justice is weak".

Go Carly!

I have Aspergers and guess what I don't appreciate it one bit the fact that that idiot is claiming biomed isn't helpful. My son with autism is now fully potty trained and talks in 2-4 word sentences now. Also 29 yrs of my suffering w/constant illness, rashes, GI problems, and lack of eye contact are gone thanks to our family DAN doctor. I'm a much happier person now that I'm not miserable physically. ASAN doesn't speak for me.

The PBS news report was wonderful.

Dear AoA,

Bearing in mind you are so concerned about all these issues please tell us why in this week of all weeks you and others are not ramming the following information down the throats of the US media?

A) the current President of Merck’s Vaccines Division, Julie Gerberding confirmed to CBS News when she was Director of the US Centres for Disease Control that: “So if a child was immunized, got a fever, had other complications from the vaccines. And if you’re predisposed with the mitochondrial disorder, it can certainly set off some damage. Some of the symptoms can be symptoms that have characteristics of autism.” [1]

B) Autistic conditions can result from encephalopathy following vaccination. The US Health Resources and Services Administration (HRSA) confirmed to CBS News that of 1322 cases of vaccine injury compensation settled out of court by the US Government in secret settlements: “We have compensated cases in which children exhibited an encephalopathy, or general brain disease. Encephalopathy may be accompanied by a medical progression of an array of symptoms including autistic behavior, autism, or seizures.” [2], [2a], [3].

C) It is biologically plausible that a live virus vaccine like MMR [which] contains live viruses one of which is scientifically accepted as causing autism. The first known cause of autism was rubella virus.

… rubella (congenital rubella syndrome) is one of the few proven causes of autism.“ Walter A. Orenstein, M.D. US as Assistant Surgeon General, Director National Immunization Program in a letter to the UK’s Chief Medical Officer 15 February 2002.

rubella virus is one of the few known causes of autism.” US Center for Disease Control.
http://www.cdc.gov/nip/vacsafe/concerns/autism/autism-mmr.htm

rubella can cause autism” The Pediatrician’s Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children – PEDIATRICS Vol. 107 No. 5 May 2001
http://aappolicy.aappublications.org/cgi/content/full/pediatrics;107/5/1221

D) Autistic conditions can result from acute disseminated encephalomyelitis (ADEM) following MMR vaccination as held by the US Federal Court in the case of Bailey Banks [4].

In his conclusion, US Federal Court Special Master Abell ruled that Petitioners had proven that the MMR had directly caused a brain inflammation illness called acute disseminated encephalomyelitis (ADEM) which, in turn, had caused the autism spectrum disorder PDD-NOS in the child:

The Court found that Bailey’s ADEM was both caused-in-fact and proximately caused by his vaccination. It is well-understood that the vaccination at issue can cause ADEM, and the Court found, based upon a full reading and hearing of the pertinent facts in this case, that it did actually cause the ADEM. Furthermore, Bailey’s ADEM was severe enough to cause lasting, residual damage, and retarded his developmental progress, which fits under the generalized heading of Pervasive Developmental Delay, or PDD [an autism spectrum disorder]. The Court found that Bailey would not have suffered this delay but for the administration of the MMR vaccine, and that this chain of causation was… a proximate sequence of cause and effect leading inexorably from vaccination to Pervasive Developmental Delay.

E) Autism is not caused by genes. And what does not cause autism?

Dr Francis S. Collins, M.D., Ph.D. the 16th and current Director of the US$30.5 billion budget National Institutes of Health [nominated by President Obama: NIH News Release 17th August 2009 ] stated in evidence to US House of Representatives Committee May 2006 when Director of the US National Human Genome Research Institute [5]:

“Recent increases in chronic diseases like diabetes, childhood asthma, obesity or autism cannot be due to major shifts in the human gene pool as those changes take much more time to occur. They must be due to changes in the environment, including diet and physical activity, which may produce disease in genetically predisposed persons.“

F) Autistic conditions affect approximately 1 in 100 US children. They affect 1 in 64 British children [1 in 40 are boys] according to a Cambridge University study [6].

“Conclusions: The prevalence estimate of known cases of ASC, using different methods of ascertainment converges around 1%. The ratio of known to unknown cases means that for every three known cases there are another two unknown cases. This has implications for planning diagnostic, social and health services.”

G) It is estimated to cost the UK £28 billion per annum [roughly US$42 billion]: [7]

[1] HOUSE CALL WITH DR. SANJAY GUPTA – Unraveling the Mystery of Autism; Talking With the CDC Director; Stories of Children with Autism; Aging with Autism – Aired March 29, 2008 – 08:30 ET
http://transcripts.cnn.com/TRANSCRIPTS/0803/29/hcsg.01.html

[2] CBS News Exclusive: Leading Dr.: Vaccines-Autism Worth Study Former Head Of NIH Says Government Too Quick To Dismiss Possible Link – WASHINGTON, May 12, 2008
http://www.cbsnews.com/stories/2008/05/12/cbsnews_investigates/main4086809.shtml

[2a] [see text of email exchanges between US HRSA and Attkisson - attached]
http://childhealthsafety.files.wordpress.com/2011/01/attkisson-cbs-hrsa-email-exchanges-autistic-conditions-vaccines.pdf

[3] Vaccine Case: An Exception Or A Precedent? – First Family To Have Autism-Related Case “Conceded” Is Just One Of Thousands – CBS News By Sharyl Attkisson WASHINGTON, March 6, 2008]
http://www.cbsnews.com/stories/2008/03/06/eveningnews/main3915703.shtml?tag=contentMain;contentBody

[4] [Banks v. HHS (Case 02-0738V, 2007 U.S. Claims LEXIS 254, July 20, 2007)]
http://www.uscfc.uscourts.gov/sites/default/files/Abell.BANKS.02-0738V.pdf

[5] Francis S. Collins, M.D., Ph.D. evidence to US House of Representatives Committee May 2006
http://www.genome.gov/18016846

[6] ESTIMATING AUTISM SPECTRUM PREVALENCE IN THE POPULATION: A SCHOOL BASED STUDY FROM THE UK
http://imfar.confex.com/imfar/2008/webprogram/Paper2245.html

[7] ["Economic Consequences of Autism in the UK" - London School of Economics - Study by team led by Professor Martin Knapp
http://www.lse.ac.uk/collections/pressAndInformationOffice/PDF/EconomicCostsofAutism.pdf

[Executive Summary]
https://www.nece.gov.uk/nece/neceprojects.nsf/0/01771070ACD08B7680257420004F51C7/$file/Autism%20briefing.pdf

Ari Ne'eman is NOT qualified to speak for my SEVERELY AUTISTIC and profoundly-delayed daughter. She IS sick with chronic bowel disease and all that comes with that, chronic heavy metal toxicity... lots of things that add up to a body that cannot support proper brain development.

I don't appreciate these high-functioning, selfish brats (I'm old enough to have fathered someone of Neeman's age) muscling into areas they know NOTHING about... and the arrogant presumption that all autistics are the same and don't need medical help to recover their potential!

Neurodiversity is a blight on our community.

This PBS Series is beautifully done and I find myself wishing it could be longer. I just do not understand how people in our community can attack it. I have watched every episode many times over by now and there is nothing in it that's offensive. I commend Mr. MacNeil for doing such a supurb job and I feel this program will be of greatest benefit to newly-diagnosed families and those with misunderstandings about autism. Tonight, he's going to put the spotlight on autistic adults.

I would like to see MacNeil win an Emmy for this and I hope others support that idea as well.

Done! (and television is misspelled in your action alert letter)

Done, but the number given isn't right apparently. The correct # to call and give feedback is: 202 630-9354. I can't believe the nerve of that Ari. He is knowingly doing harm to children in complaining about objective programs such as the one presented this week. Shame on him!