Autistic People Spark Twitter Fight Against Autism Speaks

[KamaAina]

http://www.buzzfeed.com/virginiahughes/autistic-people-spark-twitter-fight-against-autism-speaks

Wednesday will mark the 10th birthday of Autism Speaks, the world’s largest autism advocacy organization. To celebrate, Autism Speaks encouraged its 168,000 Twitter followers and 1.5 million Facebook fans to use the hashtag #AutismSpeaks10 to share “how AS has touched your life.”

Instead of heartwarming stories of gratitude, the hashtag has sparked hundreds of angry missives from autistic people and their supporters who say Autism Speaks does not speak for them.

“It really came out of the autistic Twittersphere, which saw this as an opportunity to highlight the fact that Autism Speaks’ 10 years of existence have, in fact, made things worse for us, not better,” Ari Ne’eman, president of the Autistic Self Advocacy Network, told BuzzFeed News.

Its detractors claim that Autism Speaks portrays autism as a frightening disease in desperate need of a cure. Some are also angry that the organization has no autistic people in positions of senior leadership, and say that it doesn’t put enough of its ample resources toward programs that will improve their everyday lives.

[marle35]

1. So autism comes in many forms

Hence the "Autism Spectrum."

Is the problem that low-functioning and high-functioning variations get lumped together? Are there not many people who have had debilitating forms of this disorder, and at increasing rates too?

[KamaAina]

2. More from the article

This is only the latest scuffle in a long-running controversy among scientists, advocates, and policy makers about the nature of autism, a developmental disorder that is characterized by difficulties in communication and social interactions, as well as repetitive behaviors and sensory sensitivities.

Despite these challenges, many autistic people say that the condition is not a scourge to be eliminated, but rather an integral part of their identity. “We’ve never felt like there’s a conflict between autism as an identity and acknowledging autism as a disability,” Ne’eman said.

[hifiguy]

3. +1.

[Ilsa]

10. He's fortunate he can analyze, synthesize, and

express that desire. Low functioning autistics are unable to use their executive function in the brain so well and clearly state their needs.

The problems and solutions aren't just about high functioning autistics, but the low functioning disabled people and their families also.

[KamaAina]

14. As am I.

I often stay up at night (well, no, not really ), wondering what separates me from your son and so many others.

[LoveIsNow]

26. The point is that mainstream autism advocates like Autism Speaks

Focus almost exclusively on (a) lower I functioning autistic people, and (b) on children. The result is that many adults with autism, who might only need limited support to lead a highly productive life, are abandoned by the system, and receive no support. There is not a sufficient community of mental health professionals who understand their needs. There are not programs to help them learn job-seeking skills, relationship skills, or assertiveness. Severely autistic people have access to group homes and psychiatric care through Medicaid. Mildly autistic people who can live independently with some assistance (i.e. help keeping up with bills, social skills training, therapists that won't look down on them, support groups to connect with peers going through the same thing), have virtually no access to these services.

The problem is exactly the opposite of what you expressed. Higher-functioning autistic people are rightfully saying "it can't be just about low-functioning autistic people and their families; we need to be recognized for our unique needs and abilities."

[hollysmom]

52. that is true but there is a reason for that =-

Last edited Fri Mar 6, 2015, 09:06 PM - Edit history (1)

depending on charity puts everyone in a hodge podge pot of funding. I volunteer for a charity that is constantly being asked to expand it's programs to adults - but the money is just not there and a program for adults would cost more because there is not frame work that they can hand their program on to reduce costs. While they help thousands of children, if they wanted to do the same for adults, it would be limited to one site because we would have to build the frame work as well as the program.

This is where you need public funding. Autism Speaks is run by the mother of an autistic child. I met her, she is doing what she thinks is right, but it is a charity not a publically funded group, they have their scope, it is not a one size fits all.

ETA _
or perhaps there needs to be differentiating, I do wonder - maybe all people under the spectrum need to be differentiated instead of being grouped under one catch all.

[SomethingFishy]

20. My son who is high functioning actually thinks he's more evolved

than the rest of us. I find it hard to disagree with him.

[KamaAina]

21. He is correct.

Years ago, a friend was explaining autism to her friend, a fellow sci-fi fan. The friend's response: "Sounds like the next step in evolution."

edit: The Aut$peaks crowd often speaks of the coming "autism tsunami". I prefer to think of it not as Fukushima, but as a tidal wave of previously untapped talent in many spheres about to wash over a world that could sorely use it.

[hifiguy]

25. I am actually convinced that the Asperger's brain

may well be an evolutionary advance. We're more like Vulcans, and Vulcans are definitely superior to homo sapiens.

[notemason]

30. I hope you are right.

[KamaAina]

31. Logical.

Flawlessly logical.

[proverbialwisdom]

4. Autism Speaks: "Every 11 minutes someone receives a diagnosis of autism spectrum disorder."

SOURCE (2014): https://www.autismspeaks.org/sites/default/files/documents/corporate-partners/as_corporatebrochure_final.pdf


Katie Wright's parents co-founded Autism Speaks. She shares her careful observations and invaluable insights at AOA and via Twitter:

Feb 15
Rob Ring has blocked ASD parents from following his tweets. B/c he is ashamed/ wants to hide his actions/ beliefs? Afraid of transparency

Feb 16
Very Disturbing. AS' Scientific Advisory Board is secret

Feb 20
Autism Speaks Tells Families to Vaccinate: Katie Wright Tells Families to Learn About Robert Ring
http://www.ageofautism.com/2015/02/autism-speaks-tells-families-to-vaccinate-katie-wright-tells-families-to-learn-about-robert-ring.html

Others also "spark fight against Autism Speaks" here (comments): http://www.disabilityscoop.com/2015/02/09/autism-speaks-vaccines/20040/

[HuckleB]

12. Why are you promoting the BS Autism Speaks promotes?

Ugh!

[proverbialwisdom]

15. Seriously? That's what you think my post was about? Try again. (nt)

[HuckleB]

18. Awww. That's cute.

Typical, but cute.

[Douglas Carpenter]

5. here is Autism Speaks infamous commerical - try to imagine just how offensive this could be

[KamaAina]

6. Mahalo (thank you)!

[Aerows]

7. My God, that's creepy!

And extremely slanderous.

[hifiguy]

9. I got through a minute of it.

Holy shit, that is indescribably awful. Fuck AS with an iron stick. I'm dx'd on the spectrum and this is insulting and horrible. I do NOT need to be cured. Of ANYTHING. I got through an Ivy League law school just fine, you pieces of shit. Graduated with the FLOTUS as a matter of fact. There is not one damn thing wrong with me.

[proverbialwisdom]

16. What a backstory.

http://content.time.com/time/health/article/0,8599,1935959,00.html

'I Am Autism': An Advocacy Video Sparks Protest
By Claudia Wallis
Friday, Nov. 06, 2009

Few medical conditions rival autism as a magnet for controversy. Practically everything about the disorder — its cause, its treatment, the way it is diagnosed, how it is studied — is subject to bitter dispute, sometimes to the point of death threats.

The most impassioned disagreements are propelled by desperate parents of autistic children, but increasingly, people who themselves have an autism spectrum disorder (ASD) diagnosis are speaking up. And their priorities, surprisingly enough, are not always in line with the advocacy groups who seek to represent their interests.

The latest example is the eruption over a video produced for Autism Speaks, the nation's largest autism advocacy group. The slickly produced video, written by Grammy-nominated songwriter Billy Mann and directed by Academy Award–winning director Alfonso Cuarón (Children of Men), shows a series of images of children with autism, accompanied by an ominous voice-over: "I am Autism ... I know where you live ... I live there too ... I work faster than pediatric AIDS, cancer and diabetes combined ... And if you are happily married, I will make sure that your marriage fails."

<>

Peter Bell, executive vice president of Autism Speaks, said the video got plenty of positive responses from the autism community. "But we realized it did hurt a certain segment of the population, which is why we removed the video link from our website," he said.

The video, Bell said in an interview, is a personal expression by Mann and Cuarón, each of whom has a young child with autism. "They are at that stage of life where they are grieving and unsure what the future holds," he said.

"I Am Autism," which turns hopeful about halfway through its 3 minutes and 44 seconds, was created for a World Focus on Autism event that coincided with the opening of the U.N. General Assembly in September. "It was never intended to have a life beyond that event," Bell said.

<>

[Ilsa]

28. The commercial also reflects what the families

of severely autistic children go through: they end up isolated because they are afraid of being accused of abuse, or because their child can't control himself in public, and many states offer nothing in helping families get appropriate therapies for their kids.

[missingthebigdog]

54. Exactly!

We are the parents of three young adults on the spectrum. Our older two are pretty high functioning, and are quite offended that anyone would think they need to be "cured."

Our younger daughter is a different story. She is 20 now, and still nonverbal and self-injurious. She requires constant supervision. We love her SO much, and wish that her quality of life was better. A "cure" would be great, but we would settle for support and understanding.

There are NO appropriate programs for her here, a looong waiting list for attendant care/respite services, and a dearth of qualified people to work with her.

[Chemisse]

51. Disgusting!

[Jefferson23]

8. Highly recommend. n/t

[HuckleB]

11. Autism Speaks doesn't speak for those it claims to do so.

[KamaAina]

13. You got it!

As a cum laude Yale graduate (more than George W. Bush '68 can say or even spell ) , I heartily agree!

[Ilsa]

17. There are many with autism whose families need a cure.

They can't manage their lives without assistance, or even construct a sentence and express it without help, if at all. These people need a cure to get their needs met and live richer emotional lives. The high functioning sector of autistics don't get to be the mouthpiece and dominant opinion over everyone else living with autism.

[HuckleB]

22. Autism Speaks doesn't get to speak for everyone either.

And it certainly doesn't get to play the games that demean the lives of all people with autism.

[proverbialwisdom]

19. IMO, tremendous latent potential exists in the greater autism community if all the infighting stops.

http://www.ageofautism.com/2015/02/in-perspective-measles-2015.html

by F. Edward Yazbak MD, FAAP
February 26, 2015

<>

It is a sad reality that no one mentioned that over 1,500 autism cases may have been diagnosed during the 24 first days of the present measles outbreak.

To date, NO ONE including the CDC knows what causes autism (Autism/ASD), the fastest growing disability in the United States, where some 24,000 new cases of the disorder are diagnosed yearly.

For unknown reasons, less than 5% of the United States research funding has been allocated to autism.

<>

First link below from recent tweet (unvetted source) about recent JAMA article (peer reviewed):

http://www.bworldonline.com/weekender/content.php?id=87123

Posted on 05:23 PM, May 08, 2014
Autism risk is half genetic, half environmental: study

WASHINGTON -- A large study in Sweden has shown that genes are just as important as environmental factors in assessing the causes of autism.

Researchers were surprised to discover that the inheritability of the neurodevelopmental disorder was about 50% -- much lower than previous studies that put it at 80-90% -- and that it was equal to environmental causes, according to the study published in the Journal of the American Medical Association.

The findings were based on data from more than two million people in Sweden from 1982 to 2006, and is the largest to date on the topic of understanding whether genes or the environment contribute to autism, which affects about one in 100 children globally, and as many as one in 68 in the United States.

“We were surprised by our findings as we did not expect the importance of environmental factors in autism to be so strong,” said study author Avi Reichenberg from the Mount Sinai Seaver Center for Autism Research in New York.

The study did not pinpoint which environmental factors could be at play, but said generally they could include things like the family’s socioeconomic status, birth complications, maternal infections or medications taken before and during pregnancy.

Co-authors on the study came from Kings College London and Karolinska Institutet in Sweden.

<>

http://jama.jamanetwork.com/article.aspx?articleid=1866100

May 7, 2014, Vol 311, No. 17 >

Original Investigation | May 7, 2014
The Familial Risk of Autism FREE

Sven Sandin, MSc1,2; Paul Lichtenstein, PhD1; Ralf Kuja-Halkola, MSc1; Henrik Larsson, PhD1; Christina M. Hultman, PhD1; Abraham Reichenberg, PhD3,4,5
[+] Author Affiliations
JAMA. 2014;311(17):1770-1777. doi:10.1001/jama.2014.4144.

[HuckleB]

23. You want "infighting" to stop, and then you paste Age of Autism crap.

Lame sauce, as usual.

[proverbialwisdom]

24. Individuals with autism and the parents of children with autism are ALL DIRECT STAKEHOLDERS.

Both are sidelined, currently. That can't last.


I read this recently. It reminded me of Kearns' Team of Rivals (title only, haven't read the book):

http://thinkingmomsrevolution.com/autism-policy-reform-coalition-join-us/

Autism Policy Reform Coalition: Be a Part of the Solution
Posted on May 15, 2014

<>

It is not well known, but President Barack Obama put together a position paper on autism spectrum disorders back when he was running for president in 2008. That paper promised that

“Obama will appoint a Federal ASD Coordinator to oversee federal ASD research and federal efforts to improve awareness of ASD and improve the training of medical professionals to identify and treat ASD. By establishing one top-level point person to coordinate ASD efforts in the White House, Obama will ensure that ASD receives the recognition and priority it deserves in the federal government. The Federal ASD Coordinator will work also [sic] be tasked with eliminating bureaucratic obstacles that may be delaying implementation of important ASD measures and ensuring that all federal ASD dollars are being spent in a manner that prioritizes results. The Coordinator will work with state task forces on ASD to ensure effective communication and collaboration among federal, state, and local agencies.”

The APRC believes that a similar model to that described above would be the best possible way to make federal autism policy accountable and effective. We request that an Office of National Autism Policy be established, with a Director who is appointed by the President, directly accountable to Congress for results, and advised by a committee comprised substantially of stakeholders who would drive policy. National autism policy needs to be centralized and streamlined in order to effect change. Many people say that Congress won’t consider such a thing because “other diseases” don’t get the same treatment, but “other diseases” don’t affect 2% of the country’s 10-year-olds and are not associated with “bizarre” behavior patterns that make interacting with people in law enforcement, educational settings, group housing, and the work place problematic.

<>

You want solutions? Reallocate the power.

[HuckleB]

27. And, as usual, you just go off into bizarro land, posting more nonsense.

And yet more nonsense from another anti-vaccine outfit.

Despicable.

[proverbialwisdom]

29. 130 new cases of autism are diagnosed in the US each day. Keep provoking meaningless division.

http://www.kintera.org/atf/cf/%7BBEBB52F7-5AE4-49F7-A192-BF4B7DD999C6%7D/AUTISM%20AWARENESS%20DAY%20FACT%20SHEETS.PDF

Did You Know?

 1 in 88 children are affected by autism
 1 in 54 boys is on the autism spectrum
 130 children are diagnosed per day
 A new case is diagnosed every 11 minutes
 More children are affected by autism than
diabetes, AIDS, cancer, cerebral palsy, cystic
fibrosis, muscular dystrophy or Down syndrome –
combined
 Autism is the fastest-growing serious
developmental disability in the United States
 Autism costs the nation $126 billion per year
 Autism receives less than 5% of the research
funding of many less prevalent childhood diseases
 Boys are four times more likely than girls to have
autism

http://www.ageofautism.com/2015/02/measles-hysteria-the-truth-about-a-non-epidemic-in-eight-simple-slides.html

COMMENTS:

It is AMAZING that the CDC can track EVERY damn CASE OF MEASLES in the United States...

OMG 4 more http://www.foxnews.com/health/2015/02/24/4-more-measles-cases-reported-in-california/

I would assume the CDC could also track the 130 NEW CASES of Autism each and every day... and report that to the public.
or perhaps a site needs to be set up for that information.

Posted by: cmo | February 24, 2015 at 01:36 PM[

/div]

[Cal Carpenter]

44. The CDC focuses on communicable disease, food borne illness, and the like

Unless you are claiming that autism is contagious or you can get it from eating uncooked chicken, I'm not sure that the bolded comment at the end of your post is worth the extra pixels. They track those things to keep an eye on potential outbreaks and find the sources. Autism doesn't work like that.

However, the CDC does provide info and education materials for all sorts of diseases and disorders, including ASD. Their website has information about the number of people diagnosed and links to other detailed info. I'm guessing "cmo" hasn't looked at the CDC website or they'd have figured that out.

[proverbialwisdom]

45. Nope, nah, nah, no, not at all. The CDC studied autism intensively in Brick Township, NJ in 1998.

Last edited Sat Mar 7, 2015, 04:43 AM - Edit history (1)

Learn all about it here: http://www.democraticunderground.com/1017183991

[Cal Carpenter]

49. I suppose you missed the part of my post

where I talked about how the CDC studies and educates about autism, but not in the same way they track outbreaks of communicable disease.

Either you need to slow down and read the entire posts to which you are replying, or you are one of the most intellectually dishonest posters on this site. The more I interact with you, the more I am certain it is the latter.

I want to make it clear that when I respond to you, it is for the benefit of others reading the thread so they don't get sucked into your obfuscation.

We are talking about matters of public health and to see someone distract, derail, misrepresent and mislead the way you do is quite disgusting. Even insidious. If you had a bigger audience I would call it dangerous.

[proverbialwisdom]

50. Don't like Blaxill's work? Princeton, Harvard MBA, founding partner 3LP, author, autism dad: SOLID.

Last edited Fri Apr 10, 2015, 05:21 PM - Edit history (2)

Best of all, no agenda but problem solving.

http://www.ageofautism.com/2015/04/tonight-mark-blaxill-and-dan-olmsted-present-vaccines-20-at-taca-pennsylvania-meeting.html

Posted by Age of Autism at April 03, 2015

Mark Blaxill is the father of a daughter diagnosed with autism, Executive Leadership Team Chairman and co-founder of Health Choice, Chairman and co-founder of the Canary Party, Editor-at-Large for Age of Autism and a frequent speaker at autism conferences. He writes often on autism, science and public policy issues for Age of Autism and has published a number of articles, letters and commentaries on autism in journals such as Public Health Reports, the International Journal of Toxicology, the Journal of Autism and Developmental Disorders, Neurotoxicology and Medical Hypotheses. He has also been invited to peer review articles in journals such as the New England Journal of Medicine, the American Journal of Epidemiology, Pediatrics and the International Journal of Toxicology. As part of his advocacy work, he has testified before the Immunization Safety Review of the Institute of Medicine (2001), served on a Blue Ribbon Panel on Vaccine Safety (2004), initiated a symposium sponsored by the National Institute of Environmental Health Sciences entitled “Environmental Factors in Neurodevelopmental Disorders” (2005) and a workshop sponsored by the Institute of Medicine entitled “Autism and the Environment: Challenges and Opportunities for Research” (2007). He was a panelist at a “Meeting on Evaluating Reasons for ASD Trends” co-sponsored by the Centers for Disease Control and Autism Speaks (2011) and at a hearing “1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism” called by the House of Representatives’ Oversight and Government Reform Committee (2012).

He received a bachelor’s degree summa cum laude from the Woodrow Wilson School of Public and International Affairs at Princeton University and an MBA with distinction from Harvard Business School. In his professional career, he spent 25 years at The Boston Consulting Group, where he was a Senior Vice President. Recently, he co-founded 3LP Advisors, an advisory firm focused on intellectual property transactions, where he is a Managing Partner. He co-authored a book on autism with Dan Olmsted, called The Age of Autism: Mercury, Medicine and a Man-made Epidemic, (Thomas Dunne, September 2010). His new book with Dan, Vaccines 2.0: The Careful Parent’s Guide to Making Safe Vaccination Choices for Your Family (Skyhorse Publishing, February 2015), was released in Febuary.

[Cal Carpenter]

53. Don't like mushrooms? Try spinach and artichoke hearts on your pizza. SOLID.

What the fuck are you talking about?

[font size="20"]OBFUSCATE.[/font]

Look it up.

[loyalsister]

32. May we never see another MDA

I think Jerry Lewis might have had much less time in the spotlight if social media had been around when profiteers turned pity for children with muscular dystrophy into a giant money making scheme.

If any organization had potential to follow that model, Autism Speaks is the one. Kudos to the advocates who are countering their message.

[daredtowork]

33. Autism Speaks seems to have a lot of momentum

First of all, as an older organization with "brand recognition", they are sitting on top of many passive revenue streams. Some of these are probably from the Federal and State agencies. Other groups that genuinely serve the needs of the autistic community need to horn in on this money and compete. As tbe money shifts, so will tbe power.

Second, people in the autistic community need to do media trainings (Yearly Kos used to help people get started on this) - and they need to get in the Talking Head rolodex of various talk show hosts. One way of doing this is to publish a book to establish your ecpertise, and then contact all the relevant shows to review your book or interview you (usually you get a publicist to do this). Even if they don't review yoy're book, that's the first step in getting in the rolodex. Then if you are able to speak at a big conference or get a job that empowers you as a media contact person, you can gradually nudge your way toward being recognized as an "expert". Keep being cutting edge, and eventualky Autism Speaks will be outdated!

But try not to let them continue to bloodsuck legacy revenue streams - that will keep them afloat long enough to keep exploiting their name and giving some Director a fat paycheck of money that should have gone to services for autistic people.

*All advice comes from watching 2 "patient organizations" for the same genetic disorder compete. There was a clear winner, and the leader of the winning organization went from Mom to president of the Genetic Alliance in Washington, DC.

I also learned from her:
1) Base your appeal on concerns members of Congress or their family personally have. Skin disease might trump heart failure if a Congressperson can identify.

2) There is no line for NIH grants. Always claim urgency and try to cut because others are cutting in front of you.

3) The most powerful speaker for the disabled before Congress is sadly not the disabled person It's the mother of disabled children

Hope those tidbits are helpful in the fight against Autism Speaks!

[KamaAina]

34. 3a) And she's a repuke.

Where the hell is Jim Langevin (D-RI), who's a quad?!

edit: the repuke is Cathy McMorris Rodgers (R-WA).

[daredtowork]

35. Wouldn't surprise me if the "Mom" I was referring to also was

I was originally involved because she recruited me as a "board member" so she could quickly get 50 state representation for her nonprofit.

But later I saw her do things that bothered me, like forming a blockade between patients and doctors at conferences so she became the only "intermediary" with the medical professionals. I think she did this to prevent rival groups from arising. There was one young man who was training in the medical database field, and he wanted to do his thesis on epidemiology in that particular disorder - he was a grad student was easily qualified for direct interaction with medical professionals. But he would have disrupted the power structure that was being established, so he could only get his questions relayed.

Another thing that bothered me was the way this woman controlled the presentation of symptoms. She ignored the experience and testimony of people who actually had the disorder, which was rare and under-studied. She presented only "approved" symptoms, and minimized them around doctors, in order to maintain their respect - at the expense of dignity/respect for people with the disorder. Yet when she was talking to a lay audience of potential donors, she would hold up her children, and then all the drama would come out on their behalf! It was like her children were allowed to (potentially suffer), but everyone else had to fit the assigned disease model in order to prove we were "good" patients as opposed to bad "needy" ones.

I refused to have anything more to do with this group in the 90s, though interestingly *my* mother is still involved and sends me updates!

As an interesting epilogue, I did see this woman had edited the Wikipedia page for the disorder...and accompanied it with a demand that only she be allowed to edit the page since she was the "expert". LOL. Wikipedia grok fail.

[KamaAina]

36. Aargh! Who is this?

[proverbialwisdom]

37. Upcoming event headlined by Jon Stewart. Support or reject?

http://www.cc.com/shows/night-of-too-many-stars

NIGHT OF TOO MANY STARS
LIVE TELETHON
MARCH 8 SUNDAY 8/7c

ABOUT THE SHOW

Since 2006, Night of Too Many Stars has raised over $18 million, giving children and adults with autism the opportunities they deserve to learn, contribute and live the fullest lives possible. While many great organizations focus primarily on autism research, Night of Too Many Stars and New York Collaborates for Autism raise funds to support autism schools, programs and services.

MORE: http://www.nyc4a.org

[KamaAina]

38. They appear to have dumped Aut$peaks in favor of New York Collaborates 4 Autism

Therefore, accept. Although I was looking forward to being Jon's guest and telling the entire Daily Show audience why Aut$peaks sucks.

edit: The key is that NYC4A actually supports services, while nearly all of Aut$peaks' bloated budget is devoted to research in a futile effort to "cure" us.

[proverbialwisdom]

40. Interesting, thanks. (nt)

[proverbialwisdom]

39. More nuance please! Does the Autism Speaks program below 'help or hurt'?

Top link from Twitter today.

http://sfbayview.com/2013/03/african-american-children-with-autism-fall-between-the-cracks/

African American children with autism fall between the cracks
March 1, 2013
by Laura Savage

<>

Laura Savage, loving mother of Nadir, is a graduating senior in journalism at San Francisco State University and is interning with the SF Bay View this semester.

https://www.autismspeaks.org/science/science-news/autism-speaks-black-churches-partner-advance-early-intervention

Autism Speaks & Black Churches Partner to Advance Early Intervention
Partnership with National Black Church Initiative seeks to reduce racial disparities in age of autism diagnosis and quality early intervention
June 20, 2013

<>

“Studies clearly demonstrate that signs of autism can emerge as early as 6 to 12 months, and we have effective tools to screen children as early as one year,” Dr. Daniels says. “Yet the average age of diagnosis in the United States remains close to five years, even later in African American communities.”

Early detection is critical for maximizing the benefits of early intervention. Studies suggest that 20 to 50 percent of children who receive appropriate early therapy before age 5 are able to participate in mainstream schooling.

<>

RELATED/RECOMMENDED: http://bestkeptsecretfilm.com

[Oubaas]

41. What About...

...that other disorder?

Allism, from the Greek "allos" afflicts millions. The Allistic Spectrum ranges from high-functioning allistic people at one end to those afflicted with Williams Syndrome and beyond.

And yet I hear almost no one calling for a cure.

Read more here:

https://www.fysh.org/~zefram/allism/allism_intro.txt

It's tragic, really. It must be terrible to have to go through life like that.

[hifiguy]

42. If that is the clever satire I think it to be,

I see what you did there. A sad lot, the allists. I feel sorry for them.

[proverbialwisdom]

46. I have something serious previously posted for you to check out, in particular, Dr. Insel's remarks.

http://www.democraticunderground.com/1017218238

IACC Meeting (9/23/14): Video excerpt of public comment by parent, Megan Davenhall, with transcript
September 30, 2014

[Oubaas]

48. Thanks for the Link

Clearly, there is something going on that's different within the spectrum.

Some people have difficulties but eventually learn to overcome deficits and to maximize their advantages. These sorts of people are quite content with who they are, despite how difficult it has been.

But there are others who seem to be hit hard and suddenly. And we need to distinguish between the high functioning people and the kids that seem to just suddenly regress and develop all sorts of co-morbid medical problems.

Unfortunately, the DSM-V has now lumped everyone together under the heading, "Autistic Spectrum Disorder" with no distinguishing between high functioning folks and kids who are much worse off.

I'm no expert, but the rate of ASD diagnosis has been accelerating at a frightening pace for a long time now, and we still don't know what's causing it. I don't know if it's vaccines, pesticides, food additives, a hole in the ozone layer or what, but whatever it is, we'd better find the cause and find it fast.

Thank you for sharing the link. I have a nephew who is in a far different place than anything that I'm familiar with, and all I can do is hope that they find the cause of his problems and get him fixed up, because right now, he's not doing too well.

[KamaAina]

47. Indeed!

And welcome to DU!!

[daredtowork]

43. +1 to neural diversity

and communicating with people instead of making monsters out of them.

One of the coolest things I've learned is that some autistic people are more extroverted than I am. Stereotypes usually prove 90% wrong when you bother to meet specific individuals.

[KamaAina]

56. When you've met one person with autism,

you've met one person with autism.

[daredtowork]

58. Dang I thought Autism Speaks spoke for all of you!

At least that's what the NPR commercial said this morning...

[proverbialwisdom]

55. Autism Speaks Walk on April 18 in Los Angeles, CA raises $1,496,069.

http://www.walknowforautismspeaks.org/site/c.igIRL6PIJrH/b.7734443/k.955C/Upcoming_Walks.htm

Walk Name City State Event Date Total Raised
Walk Now for Autism Speaks: Los Angeles Pasadena CA Saturday, April 18, 2015 $1,496,069

MORE: http://www.walknowforautismspeaks.org/faf/home/default.asp?ievent=1124950

[KamaAina]

57. Of which less than 60 grand will go to actual services.

(4 percent) The rest will go to research (to try to "cure" or eliminate us) or the brass' bloated six-figure salaries.

[proverbialwisdom]

59. 5/12/15: HELPING ADULTS WITH AUTISM THRIVE

http://abc30.com/health/helping-adults-with-autism-thrive/716340/

HELPING ADULTS WITH AUTISM THRIVE
Tuesday, May 12, 2015 06:45AM

The most recent statistics show one in every 68 babies has autism. The U.S. spends 11 and a half billion dollars a year on education and treatment for kids with the disorder. But what happens when those kids grow into adults? We take a look into one program that's focusing on adults with autism.

Braden Gertz is an early childhood education assistant and a swimming instructor. The 24-year-old is also living with autism.

"It's hard living on your own because you don't know what to do for yourself" Gertz told Ivanhoe.

But Braden has made it work. Christopher Hanks, MD, Pediatric and Internal Medicine Specialist at The Ohio State University, says only about 10 to 15-percent of adults with autism are able to live independently like Braden.

Dr. Hanks told Ivanhoe, "There's really a small percentage that are thriving in the community, and the rest struggle.

By 2030 the number of adults living with autism is expected to increase by nearly 700-percent. But many adults with the disorder have nowhere to turn when it comes to medical care.

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[proverbialwisdom]

60. Autism Speaks Sees Leadership Change

http://www.disabilityscoop.com/2015/05/05/autism-speaks-leadership/20269/

Autism Speaks Sees Leadership Change
By MICHELLE DIAMENT
May 5, 2015

The longtime chair at the nation’s largest autism advocacy group is stepping aside.

Bob Wright is leaving his post as chairman of Autism Speaks after 10 years leading the organization he founded with his wife, Suzanne, after their grandson was diagnosed with the developmental disorder. Both Wrights will remain on the nonprofit’s board as co-founders.

Effective immediately, Brian Kelly, 53, has been elected to replace Wright. Kelly is an original member of Autism Speaks’ board whose 18-year-old son, Patrick, is on the spectrum.

Officials with Autism Speaks said that Wright, 72, felt that with the organization strong, the timing was right to ensure a smooth transition.
“Ten years ago, we started Autism Speaks because we were shocked at the lack of research, awareness and access to care for the fastest growing developmental condition in the world,” Wright said in a statement. “We have made progress, but there is still work to be done.

Brian Kelly has been a big voice at the Autism Speaks table and, as the new chairman, he is prepared to carry the torch forward on behalf of our families.”

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MORE:

http://parade.com/392913/ashleighschmitzmorley/autism-speaks-celebrates-10-years-10-things-you-didnt-know-about-the-organization/
https://twitter.com/katiewr31413491/status/594723109946654721
https://twitter.com/katiewr31413491/status/594723417833611266

RELATED: http://file.scirp.org/html/22932.html

[KamaAina]

61. We shall see.

If Mr. Kelly would like to have an Autistic person on board, I'm available. (Mom lives in NYC. )