"I hate autism." To the neurotypical community it seems to be a harmless statement. I hear and see parents say this often. It shakes me to the core. To an autistic and a parent of autistics, its very offensive. I have several reasons for this statement.
The belief that I need to change to benefit Society. When I hear "I hate autism," I hear "I hate autistics." Autism is a huge part of my personality and my children's being. We would not be ourselves if we were not autistic. It is thought that our greatest minds were autistic. Without the autistic mind, great advances would not have happened. We are fine just the way we are. Elon Musk is one fine example. The belief that we need to change is what inspired ABA to begin with. ABA aims to change the child to appear not autistic.
When we hear "I hate autism," we hear that typicals hate us. We are just trying to live our lives the best we can. We do not need to hear the tragedy narrative when we are just trying to live our lives. We want to do the same things everyone else wants to do. That's it.
The belief that I should want to be cured. Most autistics do not want to be cured. Sure, we have our struggles, but who doesn't? We are a results of a variation in the human brain. If everyone had the same neurological variation, this world would be boring. Everyone would be the same. There would be no advancement or progress as a society. Take Greta Thunberg as an example. She is a young autistic girl who is inspiring the change of the entire globe.
The belief that I should look into harmful "cures." I have been told I should at least try MMS, ketogenic diet or chelation. I am on the ketogenic diet to treat polycycstic ovarian syndrome. It is proven for PCOS but not autism. Children should not be deprived carbohydrates. These are unproven treatments for autism. These "treatments" are not approved for autism. They have even lead to death. Is it really worth risking my life or my children's life to be "Normal"? The answer is no.
The truth is the stigma around autism is what makes the parents hate it. There is a tragedy narrative, perpetuated by Autism Speaks, around autistic people and we are not suffering from our condition. They are given the notion that we can be separated from our autism. that simply is not the case. We suffer from abelist people we come into contact each day. The autistic community just wants to be accepted and accommodated when needed.
The Autism Society of America was established in 1986 by Bernard Rimland, Ivar Lovaas, Ruth Sullivan and a small group of parents of autistic children. Two of those names should sound familar. Bernard Rimland was the creator of the DAN protocol and Ivar Lovaas was the creator of ABA and Conversion Therapy. That should say enough about the organization.
The organization is located in Bethesda, Maryland. They say they have autistic members on thier board of directors and in leadership positions. Temple Grandin was the first member elected autistic in 1988.
The name when it was founded was the National Society for Autistic Children. The name was change to signify that autistic children do grow up. The goal of ASA was to increase awareness about autism and the day to day issues autistic people and their families face. This organization promotes pseudoscience. They pushed the denial of vaccines and inhumane treatments. These treatments include beating and shocking with cattle prods to name a few.
They claim on their website that they improve the lives of those "affected by autism" for over 50 years. In the early 1970's they started their nationwide awareness campaign. It was adopted by Congress in 1984. This strengthened the release of the autism awareness ribbon in 1999. What they do not realize is that awareness campaigns are killing autistic people. They do not push acceptance, which is what autistic people need.
In 1976, ASA launched a brain tissue study and they formed a foundation focused on applied research in 1996. The first national conference on autism was put on by the Autism Society in 1969.
There are 120,000 members and supporters connected through their network of 90 affiliates through the county. The membership of the Austism Society continues to grow. There are more parents and professionals talking over what the autistic community actually wants.
Everyone knows the bleach queen, Kerri Rivera. She pushes parents to administer chlorine dioxide or MMS to their children to try to cure autism. We all know it is harmful. Its based on the premise that autism is caused by the rope worm parasites and that what is being shed is the parasite. Not what is really being shed, the lining of the intestines.
I am on her Telegram groups undercover and one thing she said on the group made me chuckle. She said that parasites do not cause autism! That is the whole point of her protocol.She either got hacked or is losing her mind. Hopefully this is where she messes up. The screen shot is below! Enjoy!
We have a new bleacher. This time he is located in a town called Vilnius, Lithuania.
He has his child on the Ketogenic diet. It is medically sound for very few circumstances but never in children. He then finds blood in his child's urine.
Then he continues to ask Kerri if he should continue the protocol. Not a doctor who has experience and expertise in medicine. Having a type one diabetic son myself, I know how dangerous ketones in the urine can be. This is an effect of the keto diet and can cause the child to go into ketoacidosis.
At least the Bleach Queen tells him to take his child to the doctor. Only thing she did right here. Then in the same breath he complains that he cannot administer an enema at the hospital. He is more concerned with this child being typical than his physical and mental well being.
We have located the hospital where this child is at and they have been contacted. That is all we can do for right now.
He is back home with this little boy. He went right back to poisoning his son. On top of that, he is giving his three year old condtroitin. Something no toddler should take.
My good friend Fiona O'Leary was able to call the hospital. They laughed and hung up the phone.
After a good friend of mine showed me a photo of the night sky ceiling she is painting for her autistic son and other people were telling me how they turned their rooms into sensory rooms, it triggered a memory. This time it was a good one. I promise.
Before I even suspected I might be autistic, I moved to Upstate New York and started working for Advocacy and Resource Center (ARC) in Plattsburgh, NY. . I was direct support staff for 13 disabled adults. Most of the residents shared a room with one other person, some had their own room. But one room in that house was the sensory room.
It was a room where the lights were out but there was a black light. There were light up wall pictures of waterfalls, a ball pit. a couch, light tubes that stood up vertically, fuzzy balls, squishy balls, weighted blankets, soft music, sensory swing, etc. I spent all downtime in that room, even though it wasn't much. I felt an overwhelming sensation of calm. I could not put my finger on it. I can feel now exactly what I felt then.
In that area of New York, there were blizzards. It was 20 miles from the Canadian border. When there was a blizzard coming, I would spend the nigh there. I had a choice on where I would sleep. Of course it was in the sensory room. My coworkers thought it was odd, but they were supportive. I am still good friends with them today.
Anyway, I slept on the couch, under a weighted blanket. I was holding the squishy balls. The soft music was playing. That was the best sleep I have ever gotten in my entire life. I did not have a worry in the world. All my problems disappeared for that time being. It was almost like my body was so heavy that I could not leave that room.
When I was working, I took any excuse to bring my clients in that room. I do not know who enjoyed the room better, myself or they did.
Little things like this come back. Things in our past makes sense and point to my own neurodiversity. It all fits together like parts of a story. All these signs are like foreshadowing to my current realization.
With Halloween coming up, the blue pumpkin project has surfaced online. The blue pumpkin is to make the autistic children stand out so people know that the child may not be able to say "trick or treat." It seems innocent enough but the autistic community as a whole is against this.
Blue for autism was started by Autism Speaks. The blue signifies that it is a boy's disability. They control the tragedy narrative that we are working so hard to fight. They encourage parents to grieve the child they thought they were going to have. They are still the same child .
We are a Jewish family. I never hide this fact. Holocaust education is very important, even more so as an Autistic Jew. After going through my photos of the March of the Living, a Holocaust trip I took as a child, the parallel of the Jude star came through my mind. It may seem extreme. The blue pumpkin is meant to label every autistic child as autistic. It makes them stand out. The Jude star labeled every Jewish person so people knew who the Jews were.
The blue pumpkin leaves them open for bullying. Autistic children are easy targets and bullies know this. They try to take advantage and exploit anyone who has a perceived weakness. While I do not consider being autistic a weakness, other people do. That can leave the children vulnerable.
Just like during the Holocaust, that is how the Nazi forces were able to round up people to bring them to concentration camps or death camps. I know autistic children are not being brought to their death BUT it is strikingly similar.
These children are not going to be without their parents, there is no need to label them. They want to enjoy Halloween, just like every other child. Labeling them will cause people to treat them differently and that is the last thing the autistic community wants.
Autism Cares Act was formally called Combatting Autism Act. Advocates such as myself, protested that name so they changed the name. It was a renewal of the act from 2014. I will take it apart, peice by peice. Original text will be in italics.
To amend the Public Health Service Act to enhance activities of the National Institutes of Health with respect to research on autism spectrum disorder and enhance programs relating to autism, and for other purposes.
This is to change the Public Health Service Act to improve actions of the NIH with research and programs. Research always means finding a cure. Keep this in mind.
Section 1.Short title
This Act may be cited as the Autism Collaboration, Accountability, Research, Education, and Support Act of 2019 or the Autism CARES Act of 2019.
The title is listed. The Autism Cares Act stands for Autism Collaboration, Accountability, Research, Educate and Support Act of 2019.
Sec 2. Expansion, intensification, and coordination of activities of the NIH with respect to research on autism spectrum disorder
Section 409C of the Public Health Service Act (42 U.S.C. 284g) is amended—
in subsection (a)(1)—
in the first sentence, by striking and toxicology and inserting toxicology, and interventions to maximize outcomes for persons with autism spectrum disorder; and
by striking the second sentence and inserting the following: Such research shall investigate the causes (including possible environmental causes), diagnosis or rule out, early and ongoing detection, prevention, services across the lifespan, supports, intervention, and treatment of autism spectrum disorder, including dissemination and implementation of clinical care, supports, interventions, and treatments.;
Here they are changing terminology meaning the same thing. They are still researching the cause. Toxicology is in here but everyone knows that we are not caused by being poisoned. Environmental causes usually means vaccines but the vaccine link has been disproved, over and over again. There is misinformation in this section. There is early diagnosis. This is not a bad thing. Early diagnosis is only as good as what you do with it.(2)
in subsection (b)—
in paragraph (2)—
in the second sentence, by striking cause and all that follows through disorder and inserting causes, diagnosis, early and ongoing detection, prevention, and treatment of autism spectrum disorder across the lifespan; and
in the third sentence, by striking neurobiology and all that follows through the period and inserting neurobiology, genetics, genomics, psychopharmacology, developmental psychology, behavioral psychology, and clinical psychology.; and
This section changes the verbage from cause to causes, diagnosis, early and ongoing detection, prevention and treatment of autism specturm disorder across the lifespan. It addresses that someone does not stop being autistic. Everything else in this statement suggests eugenics, cure and experimenting on autistic people. It replaces neurobiology to neurobiology, genetics, geonimc, psychoparmacology, development psychology, behavioral psychology and clinical psychology. This is just terminology. (B)
in paragraph (3), by adding at the end the following:
The Director may consider, as appropriate, the extent to which a center can demonstrate availability and access to clinical services for youth and adults from diverse racial, ethnic, geographic, or linguistic backgrounds in decisions about awarding grants to applicants which meet the scientific criteria for funding under this section.
The director of this law has deciding power over who can have access to services. This is very concerning.
Sec 3. Programs relating to autism
Developmental disabilities surveillance and research program
Section 399AA(e) of the Public Health Service Act (42 U.S.C. 280i(e)) is amended by striking 2019 and inserting 2024.
We need to be under surveillance now?
Autism education, early detection, and intervention
in subsection (a)(1), by striking children with autism spectrum disorder and all that follows through disabilities; and inserting individuals with autism spectrum disorder and other developmental disabilities across their lifespan;;
This section includes all ages, not just children. This is an improvement.
in subsection (b)—
in paragraph (2), by inserting individuals with before autism spectrum disorder;
by redesignating paragraphs (4) through (6) as paragraphs (5) through (7), respectively; and
by inserting after paragraph (3) the following:
promote evidence-based screening techniques and interventions for individuals with autism spectrum disorder and other developmental disabilities across their lifespan
This section states that evidence based screening and interventions for autistic people. We all know this means ABA. Another generation of PTSD victims. THis is not only for children, it is for everyone. (3)
in subsection (c)(1), in the matter preceding subparagraph (A), by inserting across their lifespan before and their families;
Changing verbage to everyone, not just children.
in subsection (e)—
in paragraph (1)—
in the matter preceding subparagraph (A), by inserting across their lifespan before and ensure; and
Changing verbage to all ages.
in subparagraph (B)(iv), by inserting across their lifespan after other developmental disabilities;
by redesignating paragraphs (2) and (3) as paragraphs (3) and (4), respectively; and
by inserting after paragraph (1) the following:
Developmental-behavioral pediatrician training programs
In making awards under this subsection, the Secretary may prioritize awards to applicants that are developmental-behavioral pediatrician training programs located in rural or underserved areas.
Definition of underserved area
In this paragraph, the term underserved area means—
a health professional shortage area (as defined in section 332(a)(1)(A)); and
an urban or rural area designated by the Secretary as an area with a shortage of personal health services as described in section 330(b)(3)(A)).
"Developmental-behavior pediatrician training programs" might not be a bad thing. This will allow pediatricians to know how to interact with our children. We had a doctor scream at my son for laughing when he was in pain.
It also brings services to underserviced areas. This is a good thing. This is for rural areas that would otherwise would have no services.
in subsection (f), by inserting across the lifespan of such individuals after other developmental disabilities; and
in subsection (g), by striking 2019 and inserting 2024.
in paragraph (2), by inserting across the lifespan of such individuals before the semicolon; and
This is a change for people of all ages.
in paragraph (5), by inserting across the lifespan of such individuals before and the families;
This includes the families. Do we not get any say?
in subsection (c)—
in paragraph (1)(D), by inserting , the Department of Labor, the Department of Justice, the Department of Housing and Urban Development, after Department of Education; and
Including the department of labor, department of justice, and the Department of Housing and Urban Development is not a bad thing. This may allow people to have access to housing, employment services, etc. This will help people as adults.
in paragraph (3)(A), by striking one or more additional 4-year terms and inserting one additional 4-year term; and
This limits a committee member to 2 four year term. This will allow new people on the committee.
in subsection (f), by striking 2019 and inserting 2024.
in paragraph (1), by striking Autism CARES Act of 2014 and inserting Autism CARES Act of 2019; and
This changes the year of the law.
in paragraph (2)—
in subparagraphs (A), (B), (D), and (E), by striking Autism CARES Act of 2014 each place it appears and inserting Autism CARES Act of 2019;
This changes the year of the law.
in subparagraph (G), by striking age of the child and inserting age of the individual;
This changes the age to be any age, not just children.
in subparagraph (H), by striking ; and and inserting ;;
in subparagraph (I), by striking the period and inserting ; and; and
by adding at the end the following:
information on how States use home- and community-based services and other supports to ensure that individuals with autism spectrum disorder and other developmental disabilities are living, working, and participating in their community.
This does not tell us how they will be using autistic peoples personal information will be used. We deserve privacy too!
in subsection (b)—
in the heading, by striking young adults and transitioning youth and inserting the health and well-Being of individuals with autism spectrum disorder across their lifespan;
This allows for all ages to receive services but I wonder how much they care about our well being if they will not include fake cures in this law.
by amending paragraph (1) to read as follows:
Not later than 2 years after the date of enactment of the Autism CARES Act of 2019, the Secretary shall prepare and submit, to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives, a report concerning the health and well-being of individuals with autism spectrum disorder.
They require a report on the health and well being of autistic people in the country. How will they have a report on everyone when adults have a hard time obtaining diagnosis? Getting a report on EVERYONE will be impossible.
in paragraph (2)—
by amending subparagraph (A) to read as follows:
demographic factors associated with the health and well-being of individuals with autism spectrum disorder;
They want to categorize us in their little boxes by wanting to know demographic information. We do not belong in a box.
in subparagraph (B), by striking young adults and all that follows through the semicolon and inserting the health and well-being of individuals with autism spectrum disorder, including an identification of existing Federal laws, regulations, policies, research, and programs;; and
by amending subparagraphs (C), (D), and (E) to read as follows:
recommendations on establishing best practices guidelines to ensure interdisciplinary coordination between all relevant service providers receiving Federal funding;
There does need to be coordination between different services. I wonder how they will accomplish this. (D)
comprehensive approaches to improving health outcomes and well-being for individuals with autism spectrum disorder, including—
community-based behavioral supports and interventions;
nutrition, recreational, and social activities; and
personal safety services related to public safety agencies or the criminal justice system for such individuals; and
Community based behavior supports is ABA. Do not be fooled. We are advocating against this barbaric practice.
Nutritional means quack diets that are proven not to do anything but aggravate sensory issues.
Recreational and social activities are a good thing but need to be optional.
There does need to be training for public safety organizations. There is good training in my local area BUT it needs to be across the county.
recommendations that seek to improve health outcomes for such individuals, including across their lifespan, by addressing—
screening and diagnosis of children and adults;
behavioral and other therapeutic approaches;
primary and preventative care;
aggression, self-injury, elopement, and other behavioral issues;
emergency room visits and acute care hospitalization;
treatment for co-occurring physical and mental health conditions;
medical practitioner training; and
caregiver mental health.
.There does need to be improved health outcomes in the areas listed above. Behavioral approaches needs to be eliminated. For agression, self injury, elopement and other issues there needs to be understanding. If we have understanding, there would be no need. All you have to do is talk to an autistic person.
For premature mortality, stop the awareness campaigns. It raises the suicide rate. It is not rocket science.
Care giver mental health is extremely important. If you do not take care of yourself, you cannot care for someone else.
in subsection (a), by striking $22,000,000 for each of fiscal years 2015 through 2019 and inserting $23,100,000 for each of fiscal years 2020 through 2024;
in subsection (b), by striking $48,000,000 for each of fiscal years 2015 through 2019 and inserting $50,599,000 for each of fiscal years 2020 through 2024; and
in subsection (c), by striking there is authorized to be appropriated $190,000,000 for each of fiscal years 2015 through 2019 and inserting there are authorized to be appropriated such sums as may be necessary for each of fiscal years 2020 through 2024.
Only 4% of alloted funds is going to family services. The rest is going to research. This is not what the autistic people want!