Autistic Outrage – Why is the Autistic Community so upset? : Neurodivergent Rebel


This is a question I get fairly often in relation to all the various autism related tags on Twitter, Facebook, and Instagram.  – “Why is the autistic community so upset?”

Because almost all of the media representation of autism comes from people who aren’t even autistic. Autistics ARE speaking. Are YOU listening?

 

Source: Autistic Outrage – Why is the Autistic Community so upset? : Neurodivergent Rebel

Liz Feld and Autism Speaks: No, Really, You Need to Listen


What you need to know: from autistic people, professionals, and parents

Original post from The Thinking Person’s Guide to Autism

‘……………By Shannon Des Roches Rosa

Liz Feld may be the President of Autism Speaks, but her recent A Call for Unity letter is not exactly presidential. Unless your idea of a good President is someone unable to take clues from the majority of the people they are supposed to be leading and serving. Ms. Feld’s letter is as tone-deaf and wrongheaded as then-President George W. Bush feeling insulted by Kanye West’s post-Katrina remarks that Bush “doesn’t care about Black people” — instead of asking himself why Kanye was so outraged.

Feld’s letter is an equally clueless, defensive, and dismissive response to NeuroTribes author Steve Silberman’s Los Angeles Times op ed Autism Speaks Needs to Do a Lot More Listening, in which Silberman critiques Autism Speaks outright on its leadership, community outreach, and research investment practices.

Feld rarely addresses Silberman’s points directly (she doesn’t even link to his article), choosing instead to writing a promotional piece about all the good she thinks her organization does — based on its own yardsticks. And she completely ignores Silberman’s observations about exclusion and representation, such as, “Imagine a world in which the leadership of the NAACP was all-white; now consider that not a single autistic person serves on the board of Autism Speaks. This absence makes itself felt.”

I am the parent of high-support autistic teenager. And this is what I believe being a supporter of, a loved one to, or a reporter on a community one does not belong to requires: a specific humility mandate to listen to the people in that community, and put them and their concerns first. That doesn’t mean ignoring the concerns of parents, supporters, or organization heads. But it does mean letting autistic people themselves lead and guide autism efforts.

Which makes it doubly insulting when Feld goes on to prove Silberman’s statement that “The people most often sidelined or excluded from the public discussion are autistic themselves. It is often assumed that the experts, or the parents of people on the autism spectrum, will do the talking in their stead.” Feld’s Call for Unity completely omits autistic perspectives, while including and prioritizing parents’ voices and talking about the importance of “families” — as though individual autistic adults are incapable of having a real opinion.

And that’s the real problem. As autistic activist and parent Lei Wiley-Mydske tells Feld in the A Call for Unity comments:

“It’s not just Steve Silberman’s point of view. Actually Autistic people have been saying this for YEARS about your organization. Nice of you to finally listen when it’s a non Autistic person speaking. It just shows how much you continue to disrespect us and why there can never be unity as long as you continue to erase our voices.”

Other autistic critics of Autism Speaks, like M. Kelter, point out that this lack of unity is actually a positive sign, for autistic people:

“I like division. I like what it represents. In the context of discussions about autism, division means the old [negative] view has some competition. And yes, that’s going to make some people uncomfortable, but that’s okay. You don’t need to be comfortable.

“You just need to make space at the table.”

Admitting that one has made — and can learn from — misfires is not easy. It takes a lot of that previously mentioned humility. But if Feld truly wants to be of service to her community, I’d advise her take a cue from Cara Liebowitz on learning from one’s ableist (disabilty-discriminatory) mistakes:

“…if you screw up, well, it happens to the best of us. Just apologize, ask what you can do to make it right, and make a conscious effort not to make that mistake again in the future.”

I’m not going to hold my breath, though. Autism Speaks has a lot of apologizing to do. A lot. So until they start listening — something they’ve shown very little ability to do — the criticism will continue.

 

 

#boycottautismspeaks #autismspeaks #autismacceptance #nothingaboutuswithoutus

A photo posted by Boycott Autism Speaks (@boycott_as) on Aug 29, 2015 at 10:02am PDT

[Image: Dark textured background. Light text reads:

“Autism Speaks wants “unity” without addressing a single criticism of their organization by actually Autistic people.

Unity can only come when Autistic voices are centered, when Autistic lives are valued and when Autistic people are treated with respect and dignity.

Autism Speaks, if you want unity, that’s where you start.

We’re waiting……

#‎BoycottAutismSpeaks‬  facebook.com/boycottautismspeaksnow “]

Source: THINKING PERSON’S GUIDE TO AUTISM: Liz Feld and Autism Speaks: No, Really, You Need to Listen   …………..’

Increased risk of autism with teen moms


Original post from Science Daily

‘……………

Date:   June 9, 2015

Source:   Autism Speaks

Summary:   Researchers found an increased risk of autism in children born to teen mothers and in children whose parents have a large gap between their ages. The analysis, which looked at autism rates among 5.7 million children in five countries, is the largest ever to confirm a higher risk in those born to parents in their 40s and 50s.

The goal of the new study was to determine whether advancing maternal or paternal ages independently increase autism risk, and to what extent each might do so. Credit: © Inna Vlasova / Fotolia
The goal of the new study was to determine whether advancing maternal or paternal ages independently increase autism risk, and to what extent each might do so.
Credit: © Inna Vlasova / Fotolia

The largest-ever multinational study of parental age and autism risk, funded by Autism Speaks, found increased autism rates among the children of teen moms and among children whose parents have relatively large gaps between their ages. The study also confirmed that older parents are at higher risk of having children with autism. The analysis included more than 5.7 million children in five countries.

The study was published in the journal Molecular Psychiatry.

“Though we’ve seen research on autism and parental age before, this study is like no other,” says co-author Michael Rosanoff, Autism Speaks’ director of public health research. “By linking national health registries across five countries, we created the world’s largest data set for research into autism’s risk factors. The size allowed us to look at the relationship between parents’ age and autism at a much higher resolution — under a microscope, if you will.”

“Although parental age is a risk factor for autism,” adds co-author Sven Sandin, “it is important to remember that, overall, the majority of children born to older or younger parents will develop normally.” Dr. Sandin, a medical epidemiologist, is affiliated with the Icahn School of Medicine at Mount Sinai, in New York, and Sweden’s Karolinska Institutet.

The study builds on the broader research of the International Collaboration for Autism Registry Epidemiology (iCARE). Autism Speaks, the world’s leading autism science and advocacy organization, is a major supporter of iCARE, with its goal of better understanding the factors that predispose or protect against autism.

Though previous studies identified a link between advancing parental age and autism risk, many aspects of the association remained unclear. For example, some studies found increased risk with older dads but not moms.

The goal of the new study was to determine whether advancing maternal or paternal ages independently increase autism risk, and to what extent each might do so.

The study looked at autism rates among 5,766,794 children — including more than 30,000 with autism — in Denmark, Israel, Norway, Sweden and Western Australia. The children were born between 1985 and 2004, and the researchers followed up on their development until 2009, checking national health records for autism diagnoses.

Researchers identified and controlled for other age-related influences that might affect autism risk. When separating the influence of mother’s versus father’s age, they also adjusted for the potential influence of the other parent’s age.

“After finding that paternal age, maternal age and parental-age gaps all influence autism risk independently, we calculated which aspect was most important,” Dr. Sandin adds. “It turned out to be parental age, though age gaps also contribute significantly.”

Key findings:

  • Autism rates were 66 percent higher among children born to dads over 50 years of age than among those born to dads in their 20s. Autism rates were 28 percent higher when dads were in their 40s versus 20s.
  • Autism rates were 15 percent higher in children born to mothers in their 40s, compared to those born to moms in their 20s.
  • Autism rates were 18 percent higher among children born to teen moms than among those born to moms in their 20s.
  • Autism rates rose still higher when both parents were older, in line with what one would expect if each parent’s age contributed to risk.
  • Autism rates also rose with widening gaps between two parents’ ages. These rates were highest when dads were between 35 and 44 and their partners were 10 or more years younger. Conversely, rates were high when moms were in their 30s and their partners were 10 or more years younger.

The higher risk associated with fathers over 50 is consistent with the idea that genetic mutations in sperm increase with a man’s age and that these mutations can contribute to the development of autism spectrum disorders (ASD). By contrast, the risk factors associated with a mother’s age remain unexplained, as do those associated with a wide gap between a mother and father’s age.

“These results suggest that multiple mechanisms are contributing to the association between parental age and ASD risk,” the authors conclude.

“When we first reported that the older age of fathers increases risk for autism, we suggested that mutations might be the cause. Genetic research later showed that this hypothesis was correct,” notes co-author Abraham Reichenberg, a neuropsychologist and epidemiologist with the Icahn School of Medicine at Mount Sinai, in New York City. “In this study, we show for the first time that autism risk is associated with disparately aged parents. Future research should look into this to understand the mechanisms.”

Story Source:

The above story is based on materials provided by Autism Speaks. Note: Materials may be edited for content and length.


Journal Reference:

  1. S Sandin, D Schendel, P Magnusson, C Hultman, P Surén, E Susser, T Grønborg, M Gissler, N Gunnes, R Gross, M Henning, M Bresnahan, A Sourander, M Hornig, K Carter, R Francis, E Parner, H Leonard, M Rosanoff, C Stoltenberg, A Reichenberg. Autism risk associated with parental age and with increasing difference in age between the parents. Molecular Psychiatry, 2015; DOI: 10.1038/mp.2015.70

Cite This Page:

MLA

Autism Speaks. “Increased risk of autism with teen moms.” ScienceDaily. ScienceDaily, 9 June 2015. <www.sciencedaily.com/releases/2015/06/150609065641.htm>.   …………..’

Autism Speaks Alters Position On Vaccines


Original post from Disability Scoop

‘………By

A baby receives a shot at a California clinic. With measles outbreaks in more than a dozen states, Autism Speaks now says

A baby receives a shot at a California clinic. With measles outbreaks in more than a dozen states, Autism Speaks now says “vaccines do not cause autism.” (Rick Loomis/Los Angeles Times/TNS)

Amid concerns about measles, the nation’s largest autism advocacy group has updated its stance on vaccines and autism, but remains mum on whether it will fund further studies on the issue.

Autism Speaks revised its policy on immunizations in a statement published on its website last week.

“Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism. The results of this research are clear: Vaccines do not cause autism. We urge that all children be fully vaccinated,” reads the statement from Rob Ring, the group’s chief science officer.

The language replaces a four-paragraph statement on the issue which had been in place since April 2013. The organization’s previous position also strongly encouraged parents to vaccinate but said “it remains possible that, in rare cases, immunization may trigger the onset of autism symptoms in a child with an underlying medical or genetic condition.”

The shift in Autism Speaks’ position comes as the nation grapples with a resurgence of measles. The illness was considered to be eliminated from the U.S. in 2000, but 102 cases were reported in 14 states from California to New York in January, according to the Centers for Disease Control and Prevention.

Most of those affected were not vaccinated, health officials say.

Concerns sparked by a 1998 study suggesting a link between autism and the measles, mumps and rubella vaccine have led some parents not to immunize their children. However, the study has since been retracted and the theory widely discredited by medical experts.

“The updated statement was issued this week to reiterate the importance of vaccinations in light of the measles outbreaks,” CJ Volpe, a spokesman for Autism Speaks, told Disability Scoop on Friday.

As recently as 2010, Autism Speaks affirmed its commitment to funding research examining a possible link between autism and vaccines even in the face of mounting evidence to the contrary.

Volpe did not respond to questions about whether Autism Speaks continues to fund research on vaccines. A search of the organization’s online grant database indicates that the group most recently funded a study looking at vaccines and autism, among other issues, in 2011.

Nonetheless, Autism Speaks’ Strategic Plan for Science outlining the group’s priorities for the years 2013 to 2017 continues to make mention of vaccines.

“Autism Speaks is funding studies on the underlying biology of autism, including studies to better understand medical and genetic conditions that are associated with autism that could potentially be linked to adverse responses to immunization,” the strategic plan states.

MORE IN AUTISM………..’

Five Tips that Helped Improve My Child’s Behavior


Five Tips that Helped Improve My Child’s Behavior from Autism Speaks

An extract from ‘This guest post was written by Chrissy Kelly, a mom of two boys with autism. You can read more about her and her family on her blog, “Life With Greyson + Parker,” and also her Facebook page. 

Our house has been a revolving door of Behavior Therapists over the past almost four years. Both boys put in about 20 hours a week of intense therapy. I never thought a kidless 20-something year old might be able to teach me something about my own children. The presence of autism in my life has grown my mind a thousand times over. So much of parenting children with autism is counter-intuitive. I say and do things I never thought would work, but they do. Here is a small list of techniques that we use daily that help reduce tantrums, increase understanding, direction following and happiness (theirs and mine). There is no one thing that works for all children, and there is no one quick fix, however, many of these techniques will work for many children. Whether or not they have autism.  ………………….,