Responding to Helen Petousis Harris
Journal Of Alzheimer's Disease: Aluminum and Amyloid-β in Familial Alzheimer’s Disease

Autism and Housing Dangerous Logic an Article by Amy Lutz in Psychology Today

White picket fence my ideal home.jpg1Note: This is such an important article in Psychology Today, I had to share it with you. HOUSING. CHOICE. CONTROL. For those of us with children for whom an independent life is not an option, why is it that a small group of advocates has been able to dictate what we can and can not have for our loved ones? No one wants the sterile, violent and horrible institutions of the past to return. NO ONE.  That said, for many of us, our loved ones simply do not fit into the models of community based, or even small group home living. Autism often includes severe behavior and unique needs. We have high rise communities dedicated to the elderly with Alzheimer's and Dementia.  These facilities are built with the safety and needs of the population in mind.  We NEED this for autism. The pendulum swings. And often, a minority can speak for everyone without the needs of everyone truly being in mind.

The other day, when picking up my daughters for his every 3 week visit, my girls' Dad asked me what I was planning for their housing going forward.  (I know... it always did and always will fall to me.) I subsidize my daughters by having them live with  me. We share custody, but it means nothing really.  He pays not a dime toward their day to day living expenses.  They receive their SSI  - but that wouldn't pay for a hovel here in Connecticut, even when pooled.  If they received any formal “child support”, it would deduct their SSI. A divorced man or woman could pay alimony to the custodial parent, to support the adult children, but let’s face it, few do that willingly without a court demand. Their Dad seemed to think there was some magic program that would just put them in a home with staffing and pay for it.  And to keep THREE sisters together? We have to create from scratch. And that takes a lot of... scratch! LOL. There IS no  housing that falls from the sky. So what are we to do? 

Read the article below by Amy Lutz, and feel free to comment both HERE and at Psych Today.

###

DANGEROUS LOGIC
By Amy Lutz

Last week, in a New York Times article about Elizabeth Warren’s proposed disability policy, an Ohio mother of a mainstreamed fifth-grader with Down syndrome implied that her son’s school should get rid of its specialized classrooms for children with disabilities: “Just because that segregated room exists, it’s a constant threat for him,” she said.

I’ll have more to say about mainstreaming in a later post, but for now, I just want to focus on this logic, which I’ve encountered time and again during my 15-plus years of advocacy: I don’t want X, so no one should have X.

I initially ran into this while researching my first book, which was about the electroconvulsive therapy (ECT) that finally stopped my son Jonah’s violent rages. These posed such a danger to himself and others that he was hospitalized for almost a year when he was only 9 years old.

There are over 15,000 citations on PubMed documenting the safety and efficacy of ECT for certain psychiatric and motor disorders; an estimated 100,000 Americans get ECT every year; and the treatment has been transformative for Jonah and for dozens of other young people with intellectual and developmental disorders and aggressive and/or self-injurious behaviors. Yet there still remains a very small, vocal minority lobbying for ECT to be banned—either because they suffered side effects from it, or perhaps it didn’t work for them or for a loved one, or even because, although they’ve never had it, it just sounds scary.

ECT is a significant intervention used on desperately ill patients who have not responded to less-invasive therapies. It can have side effects (the most common are headache and nausea, but short-term memory loss around the acute course of treatment is not uncommon), and it doesn’t work for everybody (although studies show it works for most people—about 80 percent of catatonic or depressed patients). In this way, it is similar to other major medical procedures, like chemotherapy or bypass surgery. But can you imagine anyone making the argument that either of these procedures should be banned because they caused side effects or failed to save the life of a family member?

Once Jonah stabilized, and my advocacy shifted to services for the severely autistic, I realized this logic defined many of the debates I found myself in. Mildly affected self-advocates, who would never need the intensive supports provided by larger residential settings, sheltered workshops, and disability-specific day programs, fought to close them. It wasn’t enough to offer more options, like supported employment and individual apartments. Even as these “integrated” models became the default mode of service delivery, advocates pressured (and keep pressuring) states to close alternative settings they deem “isolating” and “segregating”—despite vociferous protests from intellectually and developmentally disabled clients and their families.

In this country, there needs to be virtually incontrovertible evidence that something is harmful before it is banned—and often, that isn’t even enough, as in the case of cigarettes, for example. ECT, in contrast, has a strong evidence base reflecting decades of research from hospitals around the world.

As for service models, although self-advocates claim that research favors smaller, inclusive settings, the few studies that have been done are so poorly designed—typically not controlling for challenging behavior, for example—that David Mandell, Director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, summarized (in an editorial I’ve quoted so many times that many of you can probably recite this with me), “Our decision-making regarding which types of placements to pay for and prioritize is based on values rather than data.”
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Historically, disability advocates (many of whom were parents, going back to the mid-20th-century founding of groups focused on cerebral palsy, muscular dystrophy, and intellectual disability) have fought for expanded options, because the one-size-fits-all model of institutionalization was neither preferred nor appropriate for many disabled individuals. In fact, the Supreme Court Olmstead decision—mysteriously yet consistently cited as an “inclusion mandate” by many advocates—is actually an expansion mandate, affirming the right to live in community-based settings, but explicitly preserving institutional levels of care.

Justice Anthony Kennedy warned, in a concurring opinion I also keep finding myself referencing, that “it would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”

Today, the dominant voices in the Disability Rights fight instead to constrict options, based on nothing more compelling than ideological incompatibility. What too often goes unarticulated is that this insistence on a new, one-size-fits-all model of inclusion or bust is just as paternalistic as the push for institutionalization it replaced.  READ THE FULL ARTICLE AT PSYCHOLOGY TODAY HERE.

Comments

John Stone

Michael

My only reservation is that is a particularly sinister adaptation of capitalism - I am not anti-capitalist. In an article I wrote some years ago I quoted from an article of JK Galbraith:

“The fraud also conceals a major change in the role of money in the modern economy. Money, we once agreed, gave the owner, the capitalist, the controlling power in the enterprise. So it still does in small businesses. But in all large firms the decisive power now lies with a bureaucracy that controls, but does not own, the requisite capital. This bureaucracy is what the business schools teach their students to navigate, and it is where their graduates go. But bureaucratic motivation and power are outside the central subject of economics. We have corporate management, but we do not study its internal dynamics or explain why certain behaviors are rewarded with money and power. These omissions are another manifestation of fraud. Perhaps it is not entirely innocent. It evades the often unpleasant facts of bureaucratic structure, internal competition, personal advancement, and much else…

“A more comprehensive fraud dominates scholarly economic and political thought. That is the presumption of a market economy separate from the state. Most economists concede a stabilizing role to the state, even those who urgently seek an escape from reality by assigning a masterful and benign role to Alan Greenspan and the central bank. And all but the most doctrinaire accept the need for regulation and legal restraint by the state. But few economists take note of the cooptation by private enterprise of what are commonly deemed to be functions of the state. This is hidden by the everyday reference to the public and private sectors, one of our clearest examples of innocent fraud.”

https://www.ageofautism.com/2017/07/july-4th-best-of-the-american-revolution-and-health-tyranny.html

But obviously Rogers has made an important attempt to collate the evidence.

michael

John, This is really good : "I argue that autism is not only a public health issue, it also represents a crisis of political economy. In this thesis I will show that: capitalism has transformed science and medicine from a focus on use values to a focus on exchange values; regulation is largely a reflection of political power not scientific evidence; and cultural and financial capture are blocking the sorts of regulatory responses that are necessary to stop the autism epidemic."

The picture of what capitalism does or doesn't is worthy of further discussion.

John Stone

Also to keep in mind the web-published thesis of Toby Rogers, who was extensively featured in The Highwire last week:

https://ses.library.usyd.edu.au/handle/2123/20198

Rogers has been pointing out the social cost of autism is set to soon exceed the US defense budget. I myself wrote 3 times to the U.K. Office for Budget Responsibility and have yet to receive a response.

In October after many earlier letters highlighting the meltdown I wrote to BMJ Rapid Responses:

SEND not for whom the bell tolls

https://www.bmj.com/content/366/bmj.l4564/rapid-responses

Following my letter here in July [1] I wrote to the Office for Budget Responsibility and have yet to receive a reply, but the problem will not go away. Last week The Times reported the concerns of the House of Commons Education Committee:

"The Children and Families Act 2014 was supposed to transform support for Send (special educational needs and disability) children by making it easier to identify their requirements. However, the government deeply underestimated how many children had special needs and the number of children with education, health and care plans (EHCPs) soared. Schools and councils struggled to fund the support."

While the Department of Education are failing to meet this human catastrophe it is manifestly the Department of Health and Social Care who have presided in silence over it. The bell, of course, tolls for countless families across the the country and not the government bureaucracy which is failing them every of the inch of the way. They have also been failed by the mainstream media who never ask the question "why". And by the medical profession. Dare one say it, the Secretary of State for Health and Social Care ought to be panicking over this rather than a few cases of measles.

[1] John Stone, 'Re: Social care: pressure mounts for urgent and radical reform - the cost of Brexit is a blip compared with the cost of the unexplained surge in ASD', 23 July 2019, https://www.bmj.com/content/366/bmj.l4564/rr-1

[2] Rosemary Bennett, 'Parents despair at special needs ‘chaos’', The Times 23 October 2019.

Angus Files

I think when they start building the Autistic institutions such as the UKs Assesment (autism)Treatment (torture)Units, right next to the courts and living places of the Goverments they might then eventually take notice of the inhumane carnage of vaccines,as happened with gibbeting.It could be argued they have done away with only the metal cage and replaced it with a medical soloution out of sight from law makers and the eutopia of segregated cities around the world where it is still possible to live the dream with out being disturbed about the decions being made in the day job.

https://www.spookyisles.com/gibbeting-england/


Pharma For Prison

MMR RIP

Jonathan Rose

Cia: I think adult autistic people have already been put on the streets to beg. Have you seen the streets of Los Angeles, San Francisco, Seattle? The homeless people there are mostly mentally ill, and I expect that as the autism "tsunami" reaches adulthood, a growing number of them age out of services and end up on the street. When my younger daughter was still at home she would go into our backyard in all kinds of weather and make incoherent noises. Then I read about a homeless man, not much older than she was, who was doing exactly the same thing while camped out over a heating vent, and it frightened me to the bone. Thank God my daughter is now in a safe and warm place.

As for the Camphill movement having "strange" religious ideas, they were originally inspired by Rudolph Steiner and Theosophy -- but so what? The important thing is that they''re doing an excellent job of taking care of our kids. They've never imposed their beliefs on our daughter and have always accommodated our religious traditions (we're Jewish).

Cia

One of the advantages of a third-party special needs trust is that relatives can put money into it to be used for the benefit of the disabled person without its affecting SSI benefits.

I meant to say this morning that a nice-sized apartment with two bedrooms for two disabled people was common here until funding was slashed last July.

Magpie

Leah, that Toby Rogers interview on the Highwire was excellent. The economic cost is staggering, but pales with the costs to families: the loss of their dreams and hopes for their children and the burdens of care without end.

Slightly off topic, but I came across this pairing of factoids: The NY legislature in 2008 mandated flu shots for all preschool and daycare children. I wonder how much of it was from group vials.

From 2010 to 2014, New Jersey's rate of ASD in 4 year olds increased by 40% and New Jersey is/was number one in autism.

If legislatures are going to practice medicine without a license, they should at least recall the adage of "first do no harm." I wonder how those who voted for that 2008 mandate would council the current slate.

michael

This conversation and article is so very important. Regarding ECT: I have a very close family member who underwent ECT. The administering physician after witnessing the devastating toll that procedure took on this person, resigned from the institution never to do ECT again.

Thanks to all who wrote comments.

Bill

MY GOD! I have to comment. the percentage of people for whom "ECT", or "electro-convulsive therapy" "works" is less than 10%, in my informed opinion. And it HURTS at least 50% of all people who are inflicted with it! My friend is still noticeably brain-damaged and impaired decades after "ECT"!
Yes, there are some folks who claim that "ECT" has helped them, and maybe so. But those who have been seriously hurt by "ECT" are NOT able to speak or advocate for themselves. Think about that.
Sure, you can get the "anti-ECT" perspective from CCHR, but a better, more science-based source for the general, educated reader is >madinamerica.com<.
Based on what I've read from it's victims, I call "ECT" = "Electro-Cution Torture". That's what it's victims call it!

Hans Scholl

Posted by: Rebecca Lee | January 21, 2020 at 10:13 AM

Please dont stop posting ! I am reading everything you say.

cia

I think it's going to be academic. The numbers of the autistic are so large and their support needs so great, that once this lengthy period of denial ends, as it will, and the conventional narrative and its pharma hangers-on are destroyed, the US will simply not have the money to pay for the kind of apartment building with apartments designed for two disabled residents each. Not for the next eighty years (probably much longer) for every vaccine-disabled American autist.

I doubt they will ever be put out on the streets to beg, but I think large group homes will come back. I don't see how it could be otherwise. I hope they will all follow the excellent Camphill model, but Waldorf practices have a religious base (a very strange one).

Jenny Allan

Will -" I also have so called "Asperger's" syndrome and people at Age of Autism accuse any and all people with it of being "Neuro diversity" advocates."

I beg your pardon!!!? I am completely unaware of any such attitude within AoA articles, although persons commenting on these threads may well express differing opinions. There are a few high profile persons with autism currently being used as spokespersons for the pro-vaccine and pharma lobbies . No doubt they are well paid for being 'used'. To my mind they are being exploited.

I'm so sorry about your neurofirbomatosis, but thank you for posting here about it. Many persons with autism also have physical health problems, in particular bowel problems which can be very painful. Dr Wakefield explained many non verbal autistic persons are violent due to the constant pain. Certainly, electrotherapy would not help them or you.

The term 'Asperger's Syndrome' has been replaced in pschychology circles by 'High Functioning Autism'. Quite right too.

Leah

Based on the way psychiatry and society has seen fit to treat schizophrenics, there is little chance that they will come through in any meaningful way to help serve severely impacted autistic adults. I was surprised but not surprised by Del Bigtree’s excellent interview on his last show called The Price of Autism—worth viewing on you tube. This is a singular, new issue and needs a movement to provide separate housing tailored to unique needs. Leadership is needed and then parents have to sign in en masse and be loud and visible. Anyone who feels guided toward this end would be welcomed. I like the apt comparison with Alzheimer’s housing.

Rebecca Lee

I am pretty convinced that the epidemic of dementia in the elderly is the same thing as the epidemic of autism in children. I am sure of this with the children from observing hundreds of hair tests and seeing hundreds of them recover or greatly improve with PROPER chelation for mercury. I don't have this face to face experience with adults but it makes sense to me that the dementia we see is mercury, too. It just looks different in adults.
That said, my brother has got very bad with dementia and didn't respond to chelation. He started out with a very toxic looking hair test Andy Cutler himself looked at it and said he had a mixed metal intoxication. That would have been from a genetic susceptibility, lots af amalgam fillings, working on demolition sites, as a house painter and being a hypochondriac and getting many, many flu shots. With five years of chelation, his hair test almost normalized but his dementia continued to get worse. At which point I discovered that the dentist had missed some amalgam in his teeth. Even a tiny fleck represents millions of ions of mercury and will sabotage the whole process. Fortunately, children don't usually have this issue to deal with.
So my poor brother is now in memory care at a cost of $90,000 a year. And that is probably what it will cost to take care of all these children that are aging out of the schools. Last Thursday, Del Bigtree interviewed a fellow who has done a PhD thesis on this very problem. It is a problem that dwarfs impeachment and the Russians, the coming election and anything else, but is going totally unremarked.
Rebecca Lee, coauthor with Andy Cutler, of "The Mercury Detoxification Manual."

Jonathan Rose

I have to agree that many self-styled "disability advocates" are themselves grossly ableist. That is, they only want programs that serve the mildly disabled (who can live and work in the larger community) and ignore the special needs of the severely disabled (who need much more support). They are no different from the architect who designs a building with stairs but no ramps or elevators. And to say that the mildly autistic can speak for the severely autistic is equivalent to saying that someone with a 10% hearing loss can speak for the totally deaf.

To those who say that disabled persons should live in group homes rather than institutions, the fact is that group homes are just smaller institutions, and they are reproducing all the abuses and evils of the big state hospitals, as evidenced by the recent scandals surrounding the Bellwether group homes in Florida, Delaware, and New Jersey.

In fact self-contained communities can provide excellent services. (Harvard University is an institution, and its students don't live in the larger community.) The Camphill movement provides an enviable model for the care of the mentally disabled, maximizing their potential for self-care and economic productivity. My younger daughter is resident at one of their facilities, and is flourishing there. But because Camphill residents both live and work on the same campus, they get constant flak from bureaucrats and "self-advocates" who simply ignore the great work these communities are doing.

Hans Scholl

The vaccine program is a horror program (back then & today) :
Burroughs Wellcome no doubt ?

https://ireland-calling.com/lifestyle/cattle-vaccines-used-on-children/

Experimental drugs intended for cattle were tried out on children in Irish mother-and-baby homes, according to official reports obtained by the radio station, Newstalk.

The report, from the Chief Medical Officer of the Department of Health’s report to the Oireachtas in the year 2000, says the tests involved 290 children in the 1960s and 70s.

They were conducted at six Dublin Homes, together with homes at Bessborough in Cork, St Peters in Westmeath, St Clare’s in Stamullen and The Good Shepard in Dunboyne.

Will

Disablility and its impact on a person is not just about whether a person has non working legs or a low IQ. This condescending women last named Lutz at "Psychology Today" wrote these articles seems to forget that many with so called "Asperger's" may have serious medical problems or sensory disabilities like myself I have NEUROFIRBOMATOSIS a life threatening genetic tumor disorder that will often cause the death of half it sufferors beofre age 50 nd I am also partialy blind due to such diease. I understand she wants her fellow autism parents to have acess to electro shock therapy and institutions but where is her sympathy for those with asperger or other disabilities?
The legal and medical definition of a disability is anything that significantly prevents a persons ability to participate in school or work so NF and partial blindness certainly counts otherwise I would not get SSDI. I also have so called "Asperger's" syndrome and people at Age of Autism accuse any and all people with it of being "Neuro diversity" advocates

yup!

Thank you for this! I am disgusted by these so called "advocates", law makers and/or parents of kids on the spectrum (barely) who have absolutely NO CLUE what it is like caring for and advocating for severely autistic adults...many who also present with complex medical conditions. NO community based programs will accept them, very few, appropriate dayhab based programs will accept them. Ironically, the very thing these advocates scream for....."all inclusion all the time"... is not only NOT happening, these individuals are segregated day in and day out, alone and isolated in their parents' home typically. So this idea of "all inclusion all the time" is not only ridiculous, it is hypocritical and cruel to those who need campus based type settings as community based programs will never be safe or appropriate. Inclusion is not happening at all for these individuals and never will but those cases are ignored and just swept under the rug since it doesn't fit the insane one size fits all model.

And Kim, thank you for writing about the girls' Dad. I think he is the long lost brother of my child's dad. Seriously, WTF with these men? Narcissistic doesn't even begin to describe them. I also wonder about the moronic women who want to pay for and live with these types knowing full well they have up and abandoned any real responsibility. These women are just as twisted imo. They simply encourage the "I want to act like I am 18 again" attitudes and must be so desperate for companionship they ignore the massive character flaws in these people.

Sorry for the rant but the level of selfishness in these people sickens me to no end. It helps to know others have to deal with that insanity on top of having to care full time for a person with severe needs. As I say to my kid's Dad, may your girlfriend and you rot in hell someday knowing that I am here struggling day in and day out while you vacation and act like teens on spring break 24/7 . He couldn't care less. To those dads (or moms in all fairness because it can go the other way too. I know there are many great dads of kids on the spectrum going it alone..Jason from "Jay's Autism Hood" is one) who do this and to their partners who know this yet enable them...I hope they someday realize that they are heartless people and may karma hit them where it hurts.

Lori Stella

I remember the fear I had when Ohio changed living and day programs. My severely injured adult child has been floundering most of her life and it continues into adulthood. Add in how she has the right to refuse anything and make her own decisions (like eat 3 hot dogs every day for lunch) (sit cross legged in a chair at the computer all day). But when they really want her to do something they won’t take no for an answer which causes meltdowns and aggression-then it’s her fault, or mine

Angus Files

it,they, work - seen that before somewhere..

New Study Confirms Electroshock (ECT) Causes Brain Damage
A new study shows ECT (electroconvulsive therapy) causes brain damage? That's not what you will find in the many promotional press releases published in the mainstream media.

https://www.huffpost.com/entry/electroshock-treatment_b_1373619?guccounter=1&guce_referrer=aHR0cHM6Ly9kdWNrZHVja2dvLmNvbS8&guce_referrer_sig=AQAAAE0zP_jT1k8jYmiZHdJLyX3uX_afsLpxj_pm0LA3ceDDm6kEesV4rGH8jpc2w_gmbiUyHCpiayqXQyS4MJINPsTy1YUB4nYiypodcgzhry67F_zFLVAhfh8ry2q31Hej76teT6TH4tcHDE-H1-1WIQPrQfE9aetXqnY94ub8lAmv


Pharma For Prison

MMR RIP

Jenny Allan

Not my business to comment on your ex-husband's attitude Kim, but he seems to have opted out of all day to day and financial responsibilty for your daughters. My advice is simple. Ignore his nagging and keep your lovely girls with you meantime, and pray future state funded provision will be safer and better. Who better to look after your girls than Mum.

My grandson was very lucky to be given a place in a special needs base at his secondary school. He was able to join mainstream classes with 'support', but could retreat to the base at any time for sanctuary from the 'rough and tumble' of normal school life, which he sometimes found distressing. These days places at these 'bases' are having to be limited due to the sheer numbers of special needs children. This has resulted in many children effectively getting 'dumped' in mainstream classes without proper support. Prescriptions for 'Ritalin' are the only answer to difficult and violent children -chemical coshes, but they are no long term solution to the problems these children have.
My Grandson in his twenties is still with Mum and Dad. Lucky him.

Amy Lutz extolls the benefits of electric shock therapy. All I can say is 'not for me nor any member of my family', but sectioned individuals often have no choice at all concerning their treatments. Psychiatrists scare me.

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