"What I would like to talk about is talk a little bit about fear
The cost of fear
The age of fear with which we are now emerging"
David Rothkopf begins his Ted Talk: "How fear drives American politics"
Does it seem like Washington has no new ideas? Instead of looking to build the future, it sometimes feels like the US political establishment happily retreats into fear and willful ignorance. Journalist David Rothkopf lays out a few of the major issues that US leadership is failing to address -- from cybercrime to world-shaking new tech to the reality of modern total war -- and calls for a new vision that sets fear aside.
As I watched this Ted Talk, I was reminded of an article published last summer in Time Magazine from Eric Garcia, Author of We're not broken: Changing the Autism Conversation I was also reminded of. the book: Rewire your anxious brain, if only it were required reading.
In 2006, Congress passed the Combating Autism Act. When President George W. Bush signed the bill into law, he said, “I am proud to sign this bill into law and confident that it will serve as an important foundation for our Nation’s efforts to find a cure for autism.” The law’s bipartisan passage was a year after Autism Speaks was founded by Bob and Suzanne Wright in response to their grandson Christian’s autism diagnosis. Autism was entering the public discourse and becoming a cause for mobilization by elites. But this push has not made autistic people’s lives better.
I know because growing up in Southern California as a teenager with what was then known as Asperger’s Syndrome, I absorbed all this messaging about autism. I remember as a rock-and-roll-and-heavy-metal loving teenager, seeing an ad with Tommy Lee of Motley Crue and Roger Daltrey of the Who panicking about the rates of autism diagnoses in children. Gene Simmons of Kiss warned in that same ad that it affected more kids than childhood cancer, Type 2 diabetes and cystic fibrosis combined.
Of course, autism is not a deadly disease like any of those other diseases, and the spike in diagnoses were caused by improvements in both diagnostic criteria and public policy. There were more cases because we were looking for more cases. Nevertheless, this moral panic took hold, which opened the door for bad-faith actors like Dr. Andrew Wakefield and former model Jenny McCarthy to play to people’s fears about vaccines based on spurious claims. While the advocates for a cure for autism were not as pernicious as the anti-vaxxers, they were rooted in the same pernicious idea: that autism is something to be eradicated and therefore, autistic people were somehow damaged individuals.
In the 15 years since the Combating Autism Act was signed, there is little evidence that efforts to find a cure for autism have borne fruit that has improved our lives. Even as Autism Speaks and other organizations have moved on from focusing on a “cure,” much of the research continues to be on the causes and risk factors. According to the Interagency Autism Coordinating Committee’s Portfolio Analysis Report, in 2018, both public and private entities in the U.S. spent $387,680,492 on autism research, including public and private funders. In that year, 42 percent of research money was spent on biology, 19 percent on risk factors and 13 percent on treatments and interventions. Conversely, only six percent of the money was spent researching services and half of that was spent on lifespan issues.
When I read this article in Time, and saw the ad from VH1. I was reminded of what drove my own definitions around Autism. Popular Culture of the 90s and a Doug Flutie ad.
What always stood out to me is that Autism was always seen as a problem to be solved, Feared. Changed.
This is from the vantage point of those who are not Autistic:
In the United States, Autism Speaks and other parent-founded autism organizations networked together and launched a marketing tsunami that included tragedy and burden narrative, promoted autism propaganda and myths, and built an army of ‘parent warriors’ (with a hero-narrative wrapped around them) to lobby support for legislation that forced insurance coverage for Applied Behavioral Analysis (ABA) for Medicaid, military families and later with state-by-state legislation. These organizations have held the public narrative for decades now, harming autistics world with their ’crusade’ to save us from being Autistic.
ABA is known as Autistic Conversion Therapy in the Autistic Community.
Keywords Words In ABA marketing and media:
Applied Behavioral Analysis (ABA), Positive Behavioral Support (PBS), early detection, early diagnosis, early intervention, autism treatment, autism recovery, autism cure, BCBA, behavioral health, compliance, BCBA & more
This page has a great timeline of events:
1993: “Don’t Mourn For Us” is published byJim Sinclair in Our Voice, Vol. 1, No. 3. This is a very important piece in the Autistic Civil Rights movement.
The powers that be discuss Autism.
The medical model was presented to congress:
(note, this has all been debunked: NIH Time to remember: Vaccines don't cause autism )
APRIL 6, 2000
Autism and Childhood Vaccines
Witnesses testified about a theory that routine vaccinations may cause autism in a growing number of children. Parents spoke about their experiences with their own autistic children. Medical experts and researchers then testified about the scientific evidence of a link between vaccines and autism, often disagreeing on whether a causal link existed.
Parent 2: James Smythe, Tired of the living hell of an autistic child destroying his rugs. (It's unfortunate this story is what they hear, instead of the neuroscience on stimulation.
"The first is that living with these children can be hell. They can destroy your entire home. You cannot keep anything nice around. They will ruin your rugs. They will jump off the furniture. They will move the furniture around the room, push it over, break things, clear counters with one sweep of the arm. And they do all of these things with no malice whatsoever. ~James Smythe, April 6 2000", 'Parent of Autistic Child' complaining about his rugs to congress"
Mr. Smythe. Thank you very much, Congressman Burton, Congressman Waxman, and other Members of Congress, for this opportunity to speak here for my son and for the tens of thousands of autistic children around this country and the millions of people who are affected by this, literally-- parents, brothers and sisters, aunts and uncles, grandparents, and so on. I will keep my remarks to 5 minutes, but I would like to make three points here, and I would like you to write these down. The first is that living with these children can be hell. They can destroy your entire home. You cannot keep anything nice around. They will ruin your rugs. They will jump off the furniture. They will move the furniture around the room, push it over, break things, clear counters with one sweep of the arm. And they do all of these things with no malice whatsoever. One cannot take them to friends' homes. One cannot stay overnight at friends' homes. When one is at a friend's or a relative's home, they will be worse there because it is a strange environment. The second point is that no one to my knowledge is consistently measuring acquired autism. And Congressman Waxman, you mentioned that there is no causal connection between autism and vaccines. Mr. Waxman. I did not say that. Mr. Smythe. That there is no measurable causal connection. Mr. Waxman. I said there is a theory, and that theory is still controversial. Mr. Smythe. Is unproven. And I would suggest to you that we are now defining autism behaviorally; that certain activity, certain behaviors on the part of these children cause them to be classified as autistic, and then, most of the medical community gives up. And there is a difference between classical autism, a child who is born autistic, that one knows is autistic, and most doctors have been trained about autism because that is the way they were born, and they show up that way; and this late-onset autism that we are seeing, this acquired autism, if you will. There is a tremendous difference, and there may be many different medical causes. But because, in our language, we are not making that distinction, we are not able to follow medical cures or even medical causation. So that is an important distinction which I think needs to be made for all of us and by the NIH. If you look at the insurance companies, if a child is labeled autistic, they will not cover it. It does not matter what the cause of that behavior is. If you look at the educational models, if you speak to the professionals in education, they do not have a distinction to my knowledge in the way that children who are acquired autistic are trained, compared with children who are classically autistic, how they are educated. The end result is that our educational models are not recognizing that some of these children may in fact just simply be sick; they may just simply be diseased. As a result, we are letting them down, and they are going through the educational system basically being warehoused, without any treatment, either medically or educationally. From a financial standpoint, the stresses are huge. When one has an autistic child, suddenly, a whole new world of potential trauma has opened up, and there is very little known on this subject with regard to treatment. We have followed a number of different treatment programs-- auditory integration therapy, vision therapy, speech therapy, occupational therapy, and sensory integration therapy. We have participated in swimming and horseback riding, had CAT-scans, allergy testing, stool analysis and urine analysis, and all kinds of blood analysis. What we have noticed is that there is often kind of an uncaring attitude by the providers of many of these services, that ``Maybe we will find out what is going on.'' But their house is not being destroyed. They do not have the motivation or the drive, it seems, to research this process. But it is very important to research. Our school system is so overwhelmed that a recent Indianapolis Star article said that the State of Indiana has now changed the rules, so that a special education teacher can include anyone who has a college degree. What kind of special education is that? There is such a need out there, and the burdens are only going to become much greater. The waiting list for Indiana's Medicaid waiver in order for a parent to get some financial assistance here is 3 years, and as I understand, it is growing--it has to grow--with the increase in the numbers of these children. The ignorance in the insurance industry is phenomenal. I noticed that Secretary Shalala and the First Lady spoke about the use of ritalin in children, and I have heard that 10 to 20 percent of children are now on ritalin. Has it occurred to anyone that there may very well be and almost certainly is a causal connection that is related between ADD and this increase in autism; that they may be all part of one spectrum? I suggest that this needs to be looked at. But we have to make distinctions in language in order to do that. Mr. Burton. Mr. Smythe, if you could summarize, please, we would appreciate it. I know that you have a lot to cover, and we do appreciate your testimony. Mr. Smythe. Thank you, Congressman. The bottom line is that there are ways to measure how at least some of what is now showing up as autistic behavior, seems to be immune-related is affecting the brain differently from most of us, how it can be treated and then cured, and how the treatment itself can be seen to produce results in the return of blood flow to the brain. I sincerely request that the members of this panel, the National Institute of Mental Health, and the Secretary of Health and Human Services look very carefully into this process and support the healing of these children--at least the subset which is probably responsible for this large increase. Thank you very much. Mr. Burton. Thank you, Mr. Smythe. We appreciate you being here.
I do not want to read all the things that happened to Christian, because I am not sure I could get through it. But unfortunately, what happened to Christian is not a rare, isolated event. Shelley Reynolds will testify today. Her organization, Unlocking Autism, will be displaying thousands of pictures of autistic children at the ‘‘Hear Their Silence’’ autism rally this Saturday. Forty-seven percent of the parents who provided these pictures feel that their children’s autism is linked to the immunizations— almost half. We frequently hear about the children with chronic ear infections and children who became autistic after spiking a fever with their vaccinations. Liz Birt was one of the hundreds of parents who contacted us. Her 5-year-old son Matthew has been classified as autistic. He was developing normally. At age 15 months, following his MMR vaccine, he began to regress. Since the time of his vaccination, he has had chronic diarrhea. This is his picture—a good-looking kid.
Transcript of the testimony of Shelley Reynolds of Unlocking Autism
Mr. Chairman and Members, my name is Shelley Reynolds. I live in Baton Rouge, LA with Aidan, my husband of 8 years, and my children, Liam, who is 4, and Mairin, who is 2.
I would like to thank you both for holding this hearing and allowing me to testify before you today.
I met Aidan in the 10th grade. We were in love with each other from day one. We dated all through college, and we got married as soon as we graduated. We had our own house, two cars, two careers, and two dogs.
We were living the American dream.
Right after we were married, Hurricane Andrew, one of the most destructive hurricanes to ever hit the United States, slammed through Baton Rouge.
Sustained winds of 100 miles an hour ripped off our roof, and 8 days without electricity left us with very little food or water. We promised each other we would never again be unprepared for such a disaster. But 6 years later, hurricane-force winds blew into our home again. This time, the disaster was the diagnosis of autism for our first born son Liam. It completely tore our home apart, and the effects have lasted much longer than 8 days.
No amount of preparedness can ready you for a storm such as this. Liam was a normally developing baby until June 27, 1997, when he received his MMR and Hib vaccines.
He did everything he was supposed to do. He cooed, rolled over, crept, crawled, pulled up and walked on time. He said ‘‘Mamma,’’ he said ‘‘Daddy,’’ he said ‘‘Love you.’’ He learned how to sing ‘‘Itsy Bitsy Spider.’’ He played finger games with us. He loved to interact, and he especially loved to show off for his grandparents. We did all the well-baby checkups on time. I breast-fed him until he was 8 months old. I did not start solid foods until he was 4 months old. We did everything completely by the book. But when he was 17 months old, shortly after he had received the shots, he started exhibiting some different behaviors. He was constantly taking off his shoes; he screamed if we dressed or undressed him; he would stare for hours in front of the television and would not move if you blocked the view. He could not tolerate playing in the sandbox anymore. He did not want to sing any of his favorite songs; he would cover his ears and scream ‘‘No.’’ We assumed he was just asserting his independence, since he was almost 2. And somewhere along the way, he developed chronic, nonspecific diarrhea, sometimes 8 to 10 times a day, and still suffers from that 3 years later. By April 1998, I realized that Liam was no longer saying ‘‘Mamma’’ or ‘‘Daddy’’ or ‘‘Love you,’’ so I took him for a speech and language evaluation. They told me that my 27-month-old child had the language capacity of an 8-month-old. This was a child who only months before would chime in ‘‘Ee-i-ee-i-o’’ at the appropriate moment when singing ‘‘Old MacDonald.’’ What had happened to our beautiful baby boy, and how could we help him? My husband and I decided to become advocates and work for increased funding for autism research and awareness. The answers may not come in time to help our son, but we are hopeful that we can persuade you to see the need for intensive research regarding this disorder which is affecting more and more children every year.
In Liam’s case, we have no doubt that he developed his autism as a direct result of an adverse vaccine reaction. And personally, if I could strike the belief that my son’s autism sprang from a routine childhood vaccination, that I held him down on the table for and had to go back to the Russian roulette of genetics, I would take it in a heartbeat, because the pain of knowing that I inadvertently caused him harm due to blind trust in the medical community, or a matter of inconvenience of yet another office visit taking time away from my job is nearly unbearable. Many in the medical community continue to dismiss this as mere happenstance because autism often coincides with the time of vaccination, and state that there is no scientific evidence to back this up. My question to you is: How long does it take for a coincidence to surface time and time and time again, case after case after case, before it can become a viable hypothesis, especially when the solution to solving the problem seems so apparent? How can pharmaceutical companies concoct substances with mercury, formaldehyde, antifreeze, lead, aluminum, aborted fetal tissue and live viruses and not expect that as they continue to pour these highly toxic and reactive substances into children, increasing dose after dose, all on the same day, that it will not alter their minds and bodies? Why would it be so completely impossible for a child to contract a chronic form of the disease rather than to have the ‘‘proper immunologic response,’’ especially if their immune systems are not up to par? And where is their scientific evidence to back up the claim that this cannot happen, when it is published in the very package inserts, in their writing, that they have not studied the effects of these vaccines for more than a few weeks, or longer than the incubation of this disease itself? What happens when you give multiple doses in 1 day or combine different diseases into one hypodermic needle? I need someone to explain to me why it is acceptable to have products on the market that exposed my son to 37.5 micrograms of mercury in 1 day at a time when he should not have been exposed to more than .59 micrograms of mercury given his body weight. I should not be exposed to more than 5 micrograms, and I have 31 years of an immune history behind me. It is completely unacceptable. One size does not fit all when it comes to vaccines. Through our organization, Unlocking Autism, we have talked with thousands and thousands of parents from across the country, and their story is the same: Child is normal; child gets vaccine; child disappears within days or weeks into the abyss of autism. If you doubt me, I invite you to come to the ‘‘Hear Their Silence’’ rally on April 8th on the Mall, where the ‘‘Open Your Eyes’’ project will be displayed and view the thousands of pictures that we have called and realize that 47 percent of those people who participated believe that vaccines contributed in some way to the development of their child’s autism. Parents like me are relying on you to demand that the pharmaceutical companies retrace their steps once again and that the public health community look at the possibility that these things might indeed not just be a coincidence. They obviously have a forced market. They manufacture products that are required for every child in this country. We fear that it is possible that while seeking great er monetary profits, there may be some who have lost sight of the medical community’s original goal regarding vaccinations—to protect children from harm. I know my children, and I know what happened to my son. As far as I am concerned, the needle that silently slipped into my baby’s leg that day became the shot heard around the world. Thank you. Mr. BURTON.
Thank you, Ms. Reynolds.
Alas, the Autism Industrial Complex ran on as Dr. Alicia A Broderick detailed in her recent book.
Autism―a concept that barely existed 75 years ago―currently feeds multiple, multi-billion-dollar-a-year, global industries.
In The Autism Industrial Complex: How Branding, Marketing, and Capital Investment Turned Autism into Big Business, Alicia A. Broderick analyzes how we got from the 11 children first identified by Leo Kanner in 1943 as “autistic” to the billion-dollar autism industries that are booming today. Broderick argues that, within the Autism Industrial Complex (AIC), almost anyone can capitalize on―and profit from―autism, and she also shows us how.
The AIC has not always been there:
it was built, conjured, created, manufactured, produced, not out of thin air, but out of ideologies, rhetorics, branding, business plans, policy lobbying, media saturation, capital investment, and the bodies of autistic people.
Broderick excavates the 75-year-long history of the concept of autism, and shows us how the AIC―and indeed, autism today―can only be understood within capitalism itself. The Autism Industrial Complex is essential reading for a wide variety of audiences, from autistic activists, to professionals in the autism industries, to educators, to parents, to graduate students in public policy, (special) education, psychology, economics, and rhetoric.
oh wow, it's Katherine M. Gehl and Michael E. Porter's the politics industry Theroy playing out :
Summary of the 2008 through 2013 Portfolio Analysis data as aligned to the IACC Strategic Plan Notes for Table
Please read the following notes prior to reviewing the table: • Objective labels are representative of the 2011 Strategic Plan. Thus, projects from 2008 and 2009 may have been labeled with a different objective number compared to the label seen in this chart. However, the funding data is accurately matched to its associated objective on the left even if the objective number was altered in previous years. • For projects from 2008-2010 there is a direct link to the list of projects for each objective. To view the individual projects in 2011 and 2012, please refer to the project lists included in the meeting materials. • Blue font indicates revisions in the text of the objective, including additions and substitutions in text that occurred from the 2008 Strategic Plan to the 2009 Strategic Plan. The red font indicates revisions, including additions and substitutions in text that occurred from the 2009 Strategic Plan to the 2010 Strategic Plan. • The IACC recommended budget represents the most updated budget cost for 2011. If the recommended budget has been revised since 2008 the year the revision took place is found in parentheses following the budget figure. Thus, if there is no mention of a revision, the IACC recommended budget has remained constant from 2008-2011. • Current project and funding status for each question or objective is indicated within the table by colored highlighting of the objective. Any objective highlighted green has greater than or equal to the recommended funding; any objective highlighted yellow has some degree of funding or active projects, but less than the recommended amount; while any objective highlighted blue has no funding or active projects. • Highlighting of each total gives an indication of the progress toward meeting the IACC recommended budget for each objective. Green highlighting indicates that funding fully meets the recommend budget. Yellow highlighting denotes that funding for a particular objective partially meets the IACC recommended budget, while blue highlighting indicates that there has been no funding towards the particular objective. • Please note that while the green, yellow, and red indicators suggest a funding status for each year and that looking across all years may give some indication of a trend, some agencies and organizations provide all the funding for multiyear grants in a single year, resulting in the appearance of “less funding” in other years, but that projects fulfilling the objectives may still have been ongoing in the years where the funding appears to be less. Thus, it is important to note the numbers of projects in looking across the chart, and to keep in mind that in a series, where, for example, most of the indicators are green, that the objective is likely to be largely “complete” according to the funding-based measure. This, however, does not provide information on whether or not the objectives were completed in terms of intended project results and outcomes. Please also note that in some cases, projects may have been funded, but were accomplished with smaller budgets than anticipated.
2016-2017 IACC Strategic Plan for Autism Spectrum Disorder - Structure
What is Neurodiversity?
Neurodiversity means that no two brains are exactly the same. Every person has things they are good at and things they need help with, and there is no such thing as a “normal” brain. The neurodiversity movement says that people with brain-based disabilities (like autism, intellectual disabilities, learning disabilities, or mental health disabilities) should be accepted and included in society just like neurotypical people (people without brain-based disabilities). The neurodiversity movement also says that we shouldn’t try to cure or get rid of autism. Autistic people should be allowed to exist, and we should work to make sure that everyone gets the accommodations we need to reach our full potential. ASAN believes in the ideas of the neurodiversity movement, and works to make sure all autistic people are celebrated for our differences instead of excluded.
Autism is a Disability
Autism is a developmental disability. It affects many things about the way we learn, move, communicate, and experience the world. Disability is a natural part of human diversity. However, our society is set up in a way that excludes people with disabilities, including autistic people. Our society says that disability is the problem, and that the solution is to cure the disability, or to try and make the person “less disabled”. The disability rights movement says that people with disabilities are not the problem. Instead, society is the problem when it does not accommodate people with disabilities. ASAN believes that instead of trying to change disabled people, we should work to make sure people with disabilities can access what we need.
ASAN is Part of the Disability Rights Movement
ASAN is a part of the disability rights movement. The disability rights movement works to make sure that disabled people have equal opportunities, get the supports that we need, and can participate in all areas of society. All of these things are important for autistic people. ASAN is a cross-disability organization, which means that we don’t just focus on autism. We work to make sure society is accessible and inclusive to people with all disabilities. The disability rights movement has a long history that started long before ASAN. We are proud to work with many communities who share these values and common goals.Many autistic people have intellectual disabilities. The autistic self-advocacy movement would not exist without the work of the self-advocacy movement started by people with intellectual disabilities. We take pride in that history, and we see our work as a continuing part of that movement. We aim to center the voices of autistic people with intellectual disabilities in our advocacy. One way we do this is by making resources in plain language and Easy to Read, so every autistic person can understand the information that impacts our lives.
Disability Rights are Civil Rights
The disability rights movement is one part of the larger civil rights movement. Many communities, like the LGBTQ community, women, and communities of color, have fought and are still fighting for their rights. Disabled people are a part of every community. When disabled people don’t have our rights, that hurts every community. At the same time, when any community is harmed, disabled people are harmed too. That is why we all need to work together to fight for our rights. We can’t leave anyone behind, or it will be harder for all of us. Disability rights are civil rights, and civil rights are disability rights.
Autistic Research Should Help Autistic People
Scientists who do autism research should listen to autistic people. They should work with us to make sure we are okay with the research they want to do. More scientists should do community-based participatory research. CBPR is a kind of research where members of the community help make the research projects that are about us. Researchers and the autistic community can work together to help make our lives better.
More about ASAN: https://autisticadvocacy.org/about-asan/what-we-believe/