Parent of Severely Autistic Adult Daughter On Clinton Autism Plan
By Teresa Conrick
Last week, Hillary Clinton revealed that she had a big plan for Autism if she were to become President. The week before, she announced her goal was to help patients and their families affected by Alzheimer's.
1— screening and diagnosis
2— treatment
3— services
4— safety and legal protections for individuals on the autism spectrum across the lifespan
5— steps to ensure they are treated with dignity
6— partnerships to help them secure employment
7— support for families and caregivers
8— a commitment to increase research funding to deepen our understanding of autism.
You can read the details all over the internet but here is her official website.
There are good and not so good things listed. For example:
Provide new support to caregivers. Clinton will provide new funds through the Developmental Disabilities Act to expand support for family members and other caregivers providing long-term care for those with autism and other disabilities. Title II of the Act authorizes competitive grants to states to foster a “statewide system of family support services for families of children with disabilities,” and Title III authorizes new funding to train and provide scholarships for caregiving and support workers.
"Competitive grants,....training...scholarships" is that money to help pay for the monumental 24/7 care for MANY with an Autism diagnosis?
or this on RESEARCH:
- Significantly increase funding so that the government can invest more in autism research. Clinton recently announced the first phase of her plan to significantly increase government investment in biomedical research: her initiative to address Alzheimer’s disease. She will build on that initiative by increasing research funding across the board. This will make a vital difference for a range of autism-related research, from studies that improve the quality of patient services for people with autism, including participatory action research on subjects like employment and housing, to more basic research that identifies genetic markers, maps child brain development, and generates new insight into the workings of the central nervous system. This basic research will draw on work across sectors by building on what we are learning from bold new private and non-profit efforts on genetic mapping, including the MSSNG genome sequencing project and open data platform, the Simons Variations in Individuals Project (VIP), and the NIH Autism Sequencing Consortium, teaming up with their researchers to deepen our understanding of autism.
Are you kidding me? MORE GENETIC research -- genetic markers, genetic mapping, genome sequencing? And which experts did she consult for these ideas? There is not ONE item here related to the MICROBIOME or IMMUNE SYSTEM the most significant area in both Autism and Alzheimer's.
Here, the Washington Post reports that "Ari Ne’eman, president of the Autistic Self Advocacy Network, said he welcomes Clinton's plan, especially its focus on solving problems faced by adults with autism." That's great and there are many references to aiding the adults who want and need housing and employment. That is important and I support that as well, BUT comments like these from ASAN detour important studies on PREVENTION and TREATMENTS for those severely stricken:
Those with autism are less concerned on a daily basis with research on its cause, and more concerned with questions such as "can I get and hold a job," ...
In that same WP article, it appears that Hillary is wanting to see more real research:
I think we have to take seriously what seems to be an increasing diagnosis of autism," Clinton said at a Derry, N.H. town hall meeting. "And we have to do much more research about what is causing it. We’ve got to do what we can to prevent it. And then when it is diagnosed, intensive treatment … that can really help that person be as successful as possible."
BUT it's very possible that those who helped devise this plan have not shared the important aspects of REAL research, autism dangers, and families giving up hope as their children's health issues devastate the family finances. Presidential candidate, Hillary Clinton most likely has not heard from families like mine. Genetic research has done nothing. Behavioral intensive therapy can help some with an Autism diagnosis but parents would like the medical issues of autism alleviated as research shows they can CAUSE the symptoms so many suffer, and which many researchers agree is a disorder of the gut and immune system:
Autism Study: More Evidence Linking Altered Gut Bacteria to ASD (from Autism Speaks yet why are they not sharing this with the Clinton campaign?)
I would then like to share this information because my daughter regressed into an Autism diagnosis after vaccination and is severely affected in health, autoimmune issues and significant behaviors:
- over 50 percent of young children are regressing (losing skills, speech, health) and then autism behaviors develop.
- Regressive Autism Reported Twice as Often among African American Children and higher also among Hispanics. (Is Hillary not interested in knowing why this is happening?)
- Regression and Autism has been pinpointed by the Vaccine Adverse Event Reporting System
- Increasing research shows a role for the gut and microbiome in the presentation and severity of ASD symptoms
- The National Institute of the Environmental Health Sciences (NIEHS), says research is uncovering new interactions between the immune system and diseases that clearly have environmental components, such as AUTISM.
- Toxins can affect the intestinal bacteria which then can produce the symptoms of diseases such as inflammatory bowel disease, Autism, Parkinson's and many more.
- Adding in this study showing that Alzheimer's, like Autism, has a toxic microbiome connection, as Mrs. Clinton is pointing out the need to boost imperative research on CAUSATION AND TREATMENTS for both diseases.
I should stress this question ---- since over 50% of the diagnosed children are REGRESSING into AUTISM -- what is the plan for that?
I'm looking for a program for my son who is on the middle of the autism spectrum. This would be practical on the job training where places of business would do the right thing by supplying more opportunities to this population. We don't need assessing and observing. We need to train them consistently by placing them in job slots daily. We don't need day programs that provide arts and crafts with outings to various training. They should at least be able to volunteer and work their way into real jobs do they can become more independent with a purpose. They are falling through the cracks. They don't need more medicine they need more meaningful programs with skill development. People are out there getting paid for nothing by taking advantage. Everyone has a job and is on the payroll except my son. I find that I am accommodating the help instead of them accommodating my son.
Posted by: Angela boehm | February 17, 2016 at 08:39 PM
Many well done studies have concluded, "there needs to be more research into vaccines and autism". One question for Hillary, will you support the needed research between vaccines and the development of regressive autism. If she claims it's over, vaccines don't cause autism, then she's as useless as I believe she is.
Posted by: barbaraj | January 09, 2016 at 10:16 PM
One would think that if you had a case of autism and epilepsy, someone would be interested in finding out what are the connections? But we don't see many research studies on this population. Why?
Posted by: Troy | January 09, 2016 at 01:03 AM
Those of us who live with autism every day are the experts. Yet when are we contacted?
Posted by: Troy | January 09, 2016 at 12:59 AM
Birgit:
Trump seems to have a clue.
Posted by: Benedetta | January 08, 2016 at 10:43 PM
Hillary is useless and hopeless. Obviously she gets all her info about autism from her pharma sponsors and CDC criminals who are responsible for autism epidemic, hence she has no intention of focusing research on what most important - the role of vaccines in autism. I was hoping that somehow she will get it, but now it is clear she won't be allowed to do what needs to be done.
She will not be allowed to sponsor vac-unvac study, as pharma knows that will be the end of vaccine bonanza for them. Such study was in fact planned at the NIH, it was approved and funds were designated to conduct it, but it was subsequently blocked by pharma criminals.
Posted by: no-vac | January 08, 2016 at 10:28 PM
She's just throwing it out there for votes. When did autism begin anyway? When her husband was in office beginning in 92 and the vaccine schedule increase considerably.....how anyone can trust what she says I just don't get it at all...
Posted by: Kathy | January 08, 2016 at 07:21 PM
Teresa, Thank you for writing this. Please continue being a squeaky wheel!
Posted by: AutismGoAway | January 08, 2016 at 05:34 PM
I am glad I struck a nerve. I know that people here in this blog know what should be known by everybody. But as long as the powers that be have to rely on information that seems to be what the uninformed consensus is, the first order would be for the scientists to be honest and informed.
Posted by: Birgit Calhoun | January 08, 2016 at 04:01 PM
Is autism a subject that Hilary would particularly want tight institutional controls over?
I remember reading in AoA comments in the past that the only part of Hilarycare that was enacted was federal action to promote vaccination...if that is correct, maybe someone here can give a more concrete history?
I'm not finding much, just a little discussion...not from her supporters:
http://sweetness-light.com/archive/remember-hillary-clintons-vaccine-fiasco
https://www.youtube.com/watch?v=SFexBlk4g0g
If the above is true, she seems reluctant now to tout her role in vaccine uptake in the 1990s, though she'll say they "work" (whatever that means) as surely as "the sky is blue."
Personally, I'm wanting to say thanks, but no thanks...you've already done more than enough already...to this plan (and probably any federal government involvement) and her candidacy for the presidency.
Posted by: Jeannette Bishop | January 08, 2016 at 03:38 PM
For Hillary, Autism is similar to some of the problems of husband Bill.. “he said, ….she said, she said, she said, she said….”
With Autism however, there are a few “doctor he said”… and well over a million "parent/ she saids"
Posted by: go Rand | January 08, 2016 at 01:54 PM
Birgit,
Are you talking about THIS Elizabeth Warren?
https://www.facebook.com/senatorelizabethwarren/posts/417091125120053
http://thinkingmomsrevolution.com/top-10-lies-told-during-the-vaccine-preventable-diseases-hearing/
Elizabeth and Hilary have already secured their places in history for their roles in aiding and abetting the criminal poisoning of children, but hopefully not also as future president and vice-president.
Posted by: Linda1 | January 08, 2016 at 01:01 PM
And who ever commmented under the name "she's right"
Got that right - army of psychs taking money for nothing and giving nothing back and don't give a "sh*%" Got that right.
Posted by: Benedetta | January 08, 2016 at 12:53 PM
Birgit:
Don't give them a pass beause they know not what they do -- that has long since past -- Look at Linda's comment!
Posted by: Benedetta | January 08, 2016 at 12:51 PM
More research she says - I hope I am not the only person that is sick to death of wordy words and no real substance.
Posted by: Benedetta | January 08, 2016 at 12:34 PM
Hillary's plan is aimed toward the profit-makers: more treatment, more supportive care, etc. This is certainly necessary for those already afflicted. There is nothing in her response that addresses preventing future occurrences of autism, mainly taking the profit-making causes off the market. It is the type of response the profit-making therapy community would want to hear, the type of response that the profit-making causation community (vaccines, EMF, etc) would want to hear, and the type of response her Wall Street friends and donors would want to hear.
Posted by: Ronald Kostoff | January 08, 2016 at 12:33 PM
Oh, help with employment -- that is great -- let me run out and vote for her - she wins and I can just sit back and wait for that job - cause I am exhausted from looking.
If they get a factory job -- it has to be a job were they don't stand -- those severe flat feet if they stand or on their feet too much - really causes more than what is acceptable severe pain.
But I am sure from the way Hillary has got all that down on paper - that is on their radar.
Along with all the other stuff that comes with immune disfunctions.
Posted by: Benedetta | January 08, 2016 at 12:30 PM
By what I read coming from parents of autistic children, I would say they are among the most well-educated members of society. Writers of AoA are among the sharpest people I know. I hope some of this intelligence will prevail when it comes to influencing the government and the medical community to work towards the cure and prevention of autism.
It isn't Hilary's or any other presidential front-runner's fault that they are ignorant. They trust academia and maybe even Mr. Ne'eman. Before the science and the depth of autism spectrums can be measured, it is necessary to bring today's scientists up to snuff. There are too many academics who don't have the courage to stand behind what they know and believe to be true. They are too often stooges of the pharmaceutical industry.
So what is needed to change is the belief among many that things are fine and exceptional in this country? It is time to have people wake up to the fact that there is a need for more honesty.
That honesty can come from better education and a need to prevent corruption.
If Hilary Clinton chooses a brave running mate, like for instance Elizabeth Warren, these two requirements would be given some attention.
There is good reason to believe that most of the current candidates do not know what they are doing.
Posted by: Birgit Calhoun | January 08, 2016 at 12:26 PM
9 - Make illegal, unless done by a government approved entity with safeguards in place, any further research into a possible link between autism and vaccines on the grounds that the science is settled ("the earth is round, the sky is blue and ...") and the existence of such research threatens public confidence in the vaccine program which is a threat to public health and national security.
10 - Criminalize any speech in any form of media or in private, that might discourage the uptake of any currently marketed vaccine or vaccine in development as a threat to public health and homeland security.
11 - Force every American by federal law and global citizen by intense political pressure applied to those governments to submit to whatever vaccine Pharma develops in partnership with the American government, on the American government's schedule, no informed consent or consent of any kind, required, for the benefit of all mankind.
12 - Terminate parental custody of parents who refuse to vaccinate themselves or their children.
13 - Disallow the participation and movement of the willfully unvaccinated in society.
And that's just for starters.
Posted by: Linda1 | January 08, 2016 at 12:17 PM
Exactly this! Written by Kim Oakley, blogger and mother of a severe adult son with autism.
Don't be fooled by Clinton or candidates using autism as a platform!
January 7, 2016
"Presidential candidate Hillary Clinton is promising, if elected, she will “authorize the first-ever adult autism prevalence study in the U.S so that we improve our understanding of how to identify, serve, and support adults on the autism spectrum.”
Wait a minute. We don’t need to “improve our understanding of how to identify, serve and support adults on the autism spectrum”.
As parents of adult children with autism, we can tell you that our children's needs have already been IDENTIFIED, told and SHOWN to an army of social service professionals who often don't give a shit.
Indeed, by the time an adult with autism reaches the age of 21, there are piles of information, documents and dozens of meetings held that discussed and IDENTIFIED what SERVICES the person with autism needs. Where does all this information go? It's sitting in drawers or stored on computers.
Indeed, what is IDENTIFIED is deliberately forgotten and ignored.
Meanwhile, parent's reminding agencies about UNMET needs, gaps in coverage, and requesting SERVICES and SUPPORTS are given denial notices, forcing families to fight long, legal battles with state agencies who KNOW what is needed, but won’t provide it.
For instance, the identified and ignored need that some adults with autism, based on their degree of disability ( i.e....unique behaviors and medical needs), require 2:1 staffing so they are free from self-harm, able to be part of the community, receive medical care and treatment and live a more productive, meaningful life.
This increased staffing SUPPORT needed for adults with autism is well known among agencies receiving state and federal funds for autistic clients. And it's repeatedly, deliberately ignored, leading to injuries and higher chances of abuse among the autistic population.
Non-verbal adults with autism, who require higher levels of SUPPORTS, are among the most abused, overmedicated and neglected across the autism spectrum.
Presidential Candidates: Please do not insult us with your PANDERING to the autism community. Your words are vague and show a total disconnect. Instead of telling us about another needed study to identify services needed, tell us you will guarantee additional funding for ALREADY identified services needed to "support adults on the autism spectrum". There are programs in place who either need more money to provide services or are mismanaging their programs and squandering funds for adults with autism.
Top Five Needs Already Identified that don't need another study to understand what his needed. It's time to stop studying and start DOING things:
1. Urgent funding needed to CREATE more home respite care resources and residential care facilities that can house adults with autism who have medical and behavioral conditions that require round the clock care and extra staffing.
2. Urgent need to fund and create specialized small units in hospitals serving high populations of adults with autism (and other developmental disabilities), where the nurses and doctors are trained to serve this unique population.
3. For Centers for Medicare and Medicaid services to RAISE the age of adults with autism able to access and receive funding for Applied Behavioral Analysis (ABA) services.
4. Eradication of anti-psychotic drugs used to control behaviors in adults with autism. Studies have ALREADY shown that anti-psychotics used to control behaviors in autism are “largely ineffective” and have health-damaging side effects, such as retrocollis, torticollis, oculogyric crisis and tardive dyskinesia. There's an urgent need for pharmaceutical companies to create drugs with nootropic agents to "support adults with autism".
5. Funding to create advances in medical technology. Outdated medical diagnostics are a nightmare for many families living with autism. For example, getting an MRI, colonoscopy, X-Rays, IV- lines or EEGs, is a tour de force. Surely, brilliant biomedical engineers would welcome funding to create autism-friendly medical diagnostics. Hint: The quicker, the quieter, the better."
Posted by: she's right! | January 08, 2016 at 11:33 AM
Teresa, thanks for the detailed discussion of Clinton's plan. Interesting that research is the second to last item on her list. I sent a comment via her "send us a tip" link on her website stressing that research should be the first priority.
As always, I think how the brain is damaged is most important. Damage by Depakote (valproic acid) was found in the auditory pathway. The auditory pathway is most severely damaged by asphyxia at birth, which is what happened to my two sons. Statistics about autism and vaccines reveal nothing about how the brain is affected.
Also, the GI problems in autism and many other brain disorders, like addictions, should be looked for in the autonomic control centers in the brain. Breathing, heart rate, and peristalsis are initiated in the brain, and these brain centers are likely even more susceptible to damage than the auditory system, by every cause of autism.
Posted by: Patience (Eileen Nicole) Simon | January 08, 2016 at 10:27 AM
If she is going to do genetic research for a condition that is an caused by an immune system problem maybe she is going to do immune system research for genetic diseases.
Posted by: Cynthia | January 08, 2016 at 09:55 AM
Wow how grating is this:
"I think we have to take seriously what seems to be an increasing diagnosis of autism"
Obviously an increase in autism is something that would be "taken seriously" (whatever that means). She is not acknowledging an actual problem here. She's not even acknowledging an increase in the diagnosis by saying "seems to be" much less that the increase is "real". The cherry on top is "I think" like she has some sort of insight the rest of us don't.
Posted by: Steve | January 08, 2016 at 08:13 AM