Thoughts On the Autism Caste System on Display
On Friday, I posted my thoughts on social media on what I've heard and read since Kennedy spoke out about autism. One parent lamented that autism has a caste system, and it struck me as dead on. I've called it a "pecking order." This post is half rant, half rave. You decide which is which. The verbiage from the Autism Speaks, Autism Society, ASAN press release is at the end. READ IT. There are many orgs that signed onto the nonsense. Kim Rossi
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There's a group I call "The old guard (as opposed to original gangster) Moms" who have gone bananas on social media since Kennedy passionately revealed the reality of autism for so many. Their callous disregard has been on display for a long time, in many of the advocacy (wink wink) autism non-profits. One Mom whom I know wrote, "FU Robert Kennedy, my son works!" Insert long sigh here. Kennedy was like a military general trying to protect his most vulnerable troops. You can't mobilize an army by telling the population everything's fine. I think ancient Rome learned that lesson.
Regarding the "My child works!" mantra. God Bless. Wonderful! Work that has to be reported to SSI or requires a paid job coach is still employment. It's fabulous and meaningful. We need more of it. But when the Prospector Theatre here in CT takes a swing at Kennedy using individuals who are in a non-profit special needs program that TURNS AWAY the very individuals who meet Robert's criteria, they are hypocrites and have refused to see the point. They wrote, "The stereotypes around those of us with Autism are dangerous. We have jobs. We pay taxes. We contribute to society. We are proud of who we are."
When ASA fights against the very population their FOUNDER Dr. Rimland sought to help, they have relinquished their mission to industry and safe funding. (They aligned with ASAN!) The soft blue light of "acceptance" has been a shield covering eyes. Of course we accept our children. We adore them. We devote our lives to them. Yadda. Yadda. Yadda.
My dearest friends have sons and daughters who are attending college, working with support and living a life my children could not fathom. Still, their worries are as large as mine and sometimes even more paralyzing because their kids are out in the big, bad world. My children are sheltered. Neither is what we want. And for all the blue light bulbs and infinity rainbows and pleas for acceptance, the world is NEVER going to give them the grace they deserve. I have a soft heart for the some of the self diagnosed - sons and daughters who long to fit in somewhere & struggle mightily so they choose autism as a shield against the cruelty they face.
None of autism is easy. Can many make the best of it? Of course.
Denying care, change, help for anyone, anyWHERE on the spectrum is unthinkable to me. And a selfish delusion. We will die. All of us. And if we think family or great support staff are going to jump in and provide the equivalent care for our children, we're dreaming. There isn't enough money to pay anyone. A financial planner calculated that I would need $200,000 PER year for EACH of my three daughters to have wrap around (24/7/365) care. You need back up. You need to cover 168 hours with 40 hour a week workers. You need a supervisor. You need. You need. You need.
Here is the press release Autism Society, ASAN and Autism Speaks put out after Robert's press conference. You'll see the magic sentence they MUST write to secure donations and grants.
Autistic Self Advocacy Network, Autism Society of America, Autism Speaks and more stand united in calling for evidence-based research and investments in diverse supports for the Autism community.
April 17, 2025, Rockville, MD–– As national organizations dedicated to advancing the well-being of Autistic individuals, the Autistic Self Advocacy Network, Autism Society of America, Autism Speaks, The Arc of the United States, Autistic Women & Nonbinary Network, Autistic People of Color Fund and partners across the disability and public health sectors stand united in our call for science-based decision-making and increased investment in the research, programs and services the Autism community needs to live fully.
While our organizations reflect a broad range of perspectives and experiences, we are aligned in the following principles:
Vaccines Do Not Cause Autism. Decades of scientific research confirm there is no causal link. Public health messaging must be grounded in science and protect all communities.
Autistic Individuals Deserve Respect and Support. Public dialogue and policy must reflect the inherent value, rights, and diverse needs of Autistic people.
Evidence-Based Policy Is Essential. We call on policymakers to work in collaboration with Autistic individuals, families, researchers, clinicians, and disability organizations to ensure policy is grounded in science and responsive to community needs.
We are deeply concerned by growing public rhetoric and policy decisions that challenge these shared principles. Claims that Autism is “preventable” is not supported by scientific consensus and perpetuate stigma. Language framing Autism as a “chronic disease,” a “childhood disease” or “epidemic” distorts public understanding and undermines respect for Autistic people.
At the same time, federal proposals to reduce funding for programs like Medicaid, the Department of Education, and the Administration for Community Living threaten the very services that Autistic individuals and their families rely on. Research must be guided by credentialed experts and inclusive of the complexity and diversity of the lived experiences of the Autism community—not redirected by misinformation or ideology. As leaders in the fields of Autism and public health, we are committed to contributing meaningfully to the ongoing dialogue and initiatives led by HHS.
We urge public leaders, institutions, and media to uphold scientific integrity and work together to strengthen—not weaken—the infrastructure of support for the entire Autism community.
Signed By:
Autistic Self Advocacy Network, Colin Killick, Executive Director
Autism Society of America, Christopher Banks, President and CEO
Autism Speaks, Keith Wargo, President and CEO
The Arc of the United States, Katy Neas, Chief Executive Officer
Autistic Women & Nonbinary Network, Sharon daVanport, Executive Director
Autistic People of Color Fund, Ly Xīnzhèn Zhǎngsūn Brown, Founding Executive Director
Autism Empowerment, Karen Krejcha, Co-Founder, Executive Director
Dan Marino Foundation, Mary Partin, CEO
Pivot Neurodiversity
Association for Autism and Neurodiversity
Organization for Autism Research
Els for Autism
Autistic Doctors International
Hussman Institute for Autism
Milestones Autism Resources
Easterseals, Inc.
Autistic Women’s Alliance
Emma;. My prayers go out to you; I hope and pray that this can be fixed, repaired, and life will again go on. .
The part about not contacting you, probably meant he was having depression problems. Not all young people that are not talking to their families are really independent and busy living their life, but frozen with depression instead. This leads to drug problems.
Adderall is pretty much prescription form of meth. That might of stopped him from sleeping. For us it was it was Selective serotonin reuptake inhibitors (SSRIs), given to her for her depression. She sought help from a regular family doctor. Apparently there are bipolar people that we don't know haver bipolar, but we find out they do have bipolar when the medical people start treating depression with SSRIs. The SSRIs puts them into the mania state (opposite depression), they don't sleep and that is what got us into psychosis.
He needs to be closer to home and even a lower paying job, would be much better for him right now.
The ex girlfriend; those extra relationships outside the family only brings more disfunction into the fray. She probably needs help herself.
And to everybody else on here; I have had words and plan on having a few more with two old school mates. How dare they quote some neuro what ever silly diverse person and complain about sterotyping. One school mate has a grandson, I guess he is still young enough that she don't know a brain injury and not a gift in any form is going to manifest itself any time soon, or ever.
The other said she did not think vaccines cause autism. I eat lunch with her and the rest of them ever once in a while. I guess I have not told my story to her yet. The last time I saw her she just got over chemo and radiactive breast cancer treatment and looked about dead to me. Poor thing.
I already told her that it might have been the vaccines and the aluminum in those vaccines was the reason for her suffering.
Hard for people to conned.
Posted by: Benedetta | May 06, 2025 at 07:35 PM
I just read an article from disability scoop about how non-profits are already buckling under the strain of providing services for their disabled populations due to lack of funding, and this is even before the proposed drastic cuts to Medicaid funding have even been finalized and approved. The federal government provides some states with up to 90% of funding with the states filling in the rest. If federal funding to the states takes effect at the enormous levels they are considering, then they expect the states to be responsible for the lost federal funding and many states and non-profits are already struggling now and laying off staff and closing programs. This is a disaster for all of us with children/adults with disabilities who rely on Medicaid for services and supports.
The urgent need for researchers from medical groups, university studies and clinical trials for possible new medications to reverse and cure the neurological damage to our sons and daughters can not be overstated. We need this research NOW and we have waited too long already!
Posted by: Gayle | May 06, 2025 at 11:51 AM
This is the message I sent to email family and friends and to Facebook:
The following big lie is terminally ill. Its prognosis is dire. It has less than one year to live. It will soon be crushed by real honest scientific studies being done right now as directed by RFK Jr. The "decades of scientific research" has been deliberate fraud designed to keep money flowing to big pharma. We will soon find out that the opposite of the big lie is where truth resides: Vaccines are the main cause of autism.
Here is the terminally ill big lie:
"Vaccines Do Not Cause Autism. Decades of scientific research confirm there is no causal link. Public health messaging must be grounded in science and protect all communities."
Posted by: Dr. William Gaunt | May 06, 2025 at 09:35 AM
Thank you for your encouragement and prayers, Marianna!
Posted by: Emmaphiladelphia | May 06, 2025 at 03:24 AM
Emma Philadelphia,
My heart goes out to you. I sooo feel this. This is my nightmare regarding my eldest (22). Agreed about giving it up to the Lord at this point. You and your son are in my prayers.
RFK, I think, is taking a page from the crazy leftists’ playbook. Start off meeting people where they’re at, then gradually keep moving the goalposts until you get to where you really wanted to be all along.
The arrests cannot come soon enough!
- Marianna
Posted by: Marianna | May 05, 2025 at 02:10 PM
DOGE needs to investigate the listed organizations and have their 501c3 status revoked.
They are giving out false information:
"Vaccines Do Not Cause Autism. Decades of scientific research confirm there is no causal link."
"My dearest friends have sons and daughters who are attending college, working with support and living a life my children could not fathom. Still, their worries are as large as mine and sometimes even more paralyzing because their kids are out in the big, bad world."
I am dealing with this right now. My vaccine injured/computer genius son has been working in Silicon Valley for the last seven years. When he started his job after college, he cut off all communications with us. He occasionally communicated with his siblings, so at least we knew he was OK. My son had never been on any medications when he started his job. Evidently that changed. His latest (now former) girlfriend used Adderall to treat her ADHD and thought my son should take it too. IT DOES NOT WORK FOR AUTISM. She also introduced him to "other" therapies and that is why he finally contacted us. About a month ago he ended up on the street in a psychotic state and thankfully the police officer did not shoot him, but instead took him to the ER. He said that when he woke up, they said he could leave and handed him a bill for $10,000 listing all the drugs they had given him. After leaving, he had to walk to a car rental and rent a car to drive because he could not find where he left his. After returning home, he threw out all his meds and went cold turkey withdrawal. Evidently he felt bad for days and still had bouts of psychosis. His ex-girlfriend noticed his behavior and became alarmed and called one of his brothers. He alerted the younger brother, who also lives on the west coast, to go check on him. This son used up a week of his vacation time to fly there and stay with him in his apartment until he stabilized. He helped him find his car, return the rental, see his doctor, start filing his income taxes, and clean up his apartment. He was overwhelmed and said he even cried. My autistic son voluntarily FaceTimed with me and I witnessed his alarming state. But Jesus was with us. This same son, who grew up in the church, had realized the folly of his choices and was repentant. The Lord gave me many words of encouragement and over time, he calmed down. I had many fellow Christians praying for him to have a "sound mind." Oh, and did I mention that before his hospital episode, he had voluntarily quit that six figure paying job? He is also paying rent for TWO apartments ($5,000/month total) and has 3 cats? His leases aren't up until Aug./Sept. The male cat (dumped on him by a friend) doesn't get along with the 2 females so it resides in the other unfurnished apartment. YOU CAN'T MAKE THIS UP.
But Jesus is always a present help. My son's mental state dramatically improved and he flew home to be with us for five days while his ex-girlfriend looked after the cats (they are going to be a major problem if he doesn't find a new job and has to move). The Lord told me to pray daily for my son and trust Him one day at a time. I am now texting with him and will facetime once a week. I continue to walk by faith.
Posted by: Emmaphiladelphia | May 05, 2025 at 12:09 PM
Ever since Kennedy announced that he would find the cause of Autism, the "scientific community" has lost its f-ing mind. And are pulling out ALL THE STOPS to align public opinion towards its end goals.
I think the laundry list of Autism non profits says all that we need to know. Especially when their statement tells us all they need to know:
Vaccines Do Not Cause Autism. Decades of scientific research confirm there is no causal link. Public health messaging must be grounded in science and protect all communities.
The wizard is behind the curtain and pulling all the strings. Kennedy is pulling back the curtain and exposing them.
Posted by: Andrew Foss | May 05, 2025 at 09:16 AM
I will NEVER give money to any of these autism organizations again. And I will tell our family and friends not to either. They don't care about our VACCINE INJURED sons (or daughters) Thanks for reposting this.
Posted by: MelissaD | May 05, 2025 at 08:14 AM