Rolling Stone on Autism and the Catastrophe of Aging Out
By Anne Dachel
July 27, 2016, Rolling Stone: Luke's Best Chance: One Man's Fight for His Autistic Son
First of all, I have never said anything personally against any parent struggling with a disabled child in any of my writing, and this is not about the author of the Rolling Stone piece. I'm hopeful that Paul Solotaroff will continue to be a great advocate for his autistic son Luke and that Luke's future will be everything his parents could want for him. Solotaroff asks the trillion dollar question (I'm projecting here to the jaw dropping future cost of autism that will be shouldered by the U.S. taxpayers.), namely: "What happens when they come of age?"
For the second time in a week (See July 27 story, What Will Happen to Adult Children with Autism?) http://www.ageofautism.com/2016/07/what-will-happen-to-adult-children-with-autism-.html#more I'm writing on this question.
Actually it's the WRONG QUESTION.
We need to be asking the people in charge of health care more than one that only gets a vague, shoulder-shrugging answer.
Instead, this is what authorities should be forced to respond to:
Why aren't there services already in place for the 1,000,000 young adults with autism who will be aging out of school in the next two decades?
Where are autistic adults just like Luke living currently? (That's a simple question, but no one can ever reasonably answer it. If as Solotaroff points out, some experts--Penn State is cited here--believe that it's all just better accounting of the disabled, then they should be able to show us where the 40, 50, and 60 year olds with autism are. Even if they have another label, they would still require care, so where are they?
NO ONE KNOWS ANYTHING FOR SURE ABOUT AUTISM. No known cause, prevention, or cure. Arguments continue over the best treatments and therapies for autism, and we can't say for sure if more kids have autism. STILL, no one is in a panic about something that can render a child dependent for life. No U.S. health official has ever publicly stated that autism is a "crisis." That word has never been in the same sentence with "autism." "Serious public health care concern" is the strongest language used in connection with autism.
Why can't officials ever tell if there's been a true increase? I mean, how long can the better diagnosing, expanded spectrum explanation work? The definition was broaden back in 1994. Why are the numbers still growing over 20 years later? Solotaroff said that other experts claim that 40 percent of the increase in autism can't be explained. And that's where we stand.
Why doesn't the better diagnosing extend to middle aged and elderly adults? It would seem that if a researcher really wanted to make a name for himself or herself, they'd be looking for autism (and I mean classic, full-blown autism) in older Americans.
How could we have missed recognizing autism as a specific disorder? If two percent of children are on the spectrum and 40 percent of those kids "never learn to speak," according to Solotaroff, that's a lot of severely impaired children. If there is an equal percentage of adults just as handicapped, why can't anyone show them to us?
Why have we had to train EVERYONE about autism? And I mean doctors, teachers, airline employees, librarians, EMTs, and just about anyone who deals with children?
Why am I able to go into any area school and find kids on the spectrum with the easily recognized signs of autism, but I can't go into local nursing homes and find a similar population?
Like any good, loving parent, Paul Solotaroff is worried about the future. He knows the numbers are massive, and that there are already huge waiting lists as many states ration care for the disabled. He's been fortunate to find an innovative place as Luke's possible future home, but the tragedy here is that while these accommodations sound perfect for this 17 year old, countless thousands have no such prospects ahead. The truth is, what is a singular struggle for Solotaroff and his family, is a fast-approaching national nightmare. "What happens when they come of age?" will be asked again and again and again by countless parents across this planet. As officials stumble along looking for something to help these disabled, eventually we'll have to face the real question: WHY ARE THERE SO MANY YOUNG ADULTS WITH AUTISM WHO WERE NEVER HERE BEFORE?
July 27, 2016, Rolling Stone: Luke's Best Chance: One Man's Fight for His Autistic Son
By Paul Solotaroff
More than a million children in America are the autism spectrum. What happens when they come of age?
Washing his own clothes, then putting them in drawers, are among the "goals" set forth for him by the ever-changing staff at the residential school he now inhabits. But in the two years since he left the separate dwellings of his divorced parents and moved to an institution on Long Island, he has taken just the most incremental steps on the path to self-maintenance. At 17, he still requires someone to bathe him and wipe up after he toilets; to cut his food into chewable pieces and see that he eats with a fork, not his fingers; and to hold him with two hands while crossing the street on outings to the movies or museums. Luke is as much a threat now to dash into traffic as he was as a headstrong child back in grade school. But he's grown half a foot since we moved him here and checks in at almost five-nine; anyone daft enough to restrain him one-handed is playing with kitchen matches at Fukushima.
...There was no way to explain then why I had to move out when his mother and I split in 2005, both of us pushed to the breaking point by his 2 a.m. wake-ups and the constant siege of crises he presented. No one can prepare you for the fatigue of a first child. But when that child gags constantly on fistfuls of food; when his eyes roll back in a vacant haze that will belatedly be treated as seizures...
...And overhanging those are my master emotions: the panic and confusion about what's next. Three autumns from now, Luke will age out of school and go hurtling off the cliff called "transition." The day he turns 21, he will lose his legal mandate to the government-funded care for disabled kids. Something will replace this – a shared room in a state-run group home, or a terrifying arrangement in which a flat is rented for him and his staffer leaves the moment Luke's off to sleep.
And so – the clock ticking – I set out last winter to seek a third way for him: a place or a program for profoundly impaired kids that provides them more than shelter and hot meals. The search, however selfish, had a messianic bent. There are more than 1 million children in America with autism, and 3 million more with other intellectual or developmental disabilities...
Anne Dachel is Media Editorfor Age of Autism.
Jill Stein, Green Party candidate, has made a mild statement about vaccine safety which is giving pharma the vapors.
Posted by: Carol | August 03, 2016 at 03:40 PM
Gayle
I fear this is far from certain. Three of our last four Prime Ministers in the UK have had families affected by autism (Major, Blair, Cameron), but it has made no difference. Class solidarity seems to triumph over the well-being of children and the truth every time.
Posted by: John Stone | August 03, 2016 at 08:02 AM
The only way either of the presidential candidates will care about the AUTISM epidemic is if it happens to someone in their own families-grandchildren at this point for both. Unfortunately until it happens in someone's own family the problem of the autism epidemic is somebody else's. The lack of concern from the federal government and the federal agencies such as the CDC and the NIH has been a shocking disaster. We the families are left to deal with the looming what will happen to our children when we are gone. We need RESEARCH into a CURE for our immune and neurologically affected children NOW!
Posted by: Gayle | August 03, 2016 at 07:52 AM
@ Ronald Kostoff
"This is an issue that probably falls way below their radar screen. I suspect that, on an issue this detailed, they would go to their medical advisors and parrot what they are told."
I guess we will just have to .. (respectfully I hope) .. disagree on this "issue being so detailed".
I mean how much "detail" does it require either Presidential nominee to PUBLICLY ACKNOWLEDGE THEY ARE FULLY AWARE of the stunning numbers of autistic adolescents .. some estimates being hundreds of thousands presently under 22 years of age .. that will be graduating from schools during their first term in office?
Sorry ... in my opinion .. that is a SIMPLE question .. requiring nothing more "detailed" than a "yes or no" answer.
Posted by: Bob Moffit | August 03, 2016 at 07:28 AM
I personally get a bit of a knot in the stomach thinking about asking those who created/contributed to this iatrogenic epidemic a question that might suggest (at least in their minds) we want a "solution" from them. We do need the truth to be widely acknowledged though, but we might want to hope (MO) that corporate media, especially TV media, and medical politicians and salesmen be abandoned widely as the source of all wisdom (which is maybe a point of the questions of where are the resources), rather than that they'll lead the way to anything better...not that I want to be so cynical, but I'm a little afraid of what people can be led to thinking is being done "to help."
This type of advocacy though does serve (at least the not so closely affected, so far, who happen to read so much) in warning that autism in one's child or oneself isn't exactly a walk in the park. Del Bigtree had a simple survey conducted at a college where a question was something to the effect, "Which would you rather have, autism or measles," and the majority said autism, because measles can kill you. Whenever I try to comment in a "mainstream" site that research shows a twice to possible 10 times higher mortality for autism (in youth), the comments (with references or not) never see the light of day. The constant awareness of the mortality risk, the more varied depths of morbidity and isolating aspects, often painfully private, are harder to convey, I think, so I really appreciate those who make the effort.
As a country, our understanding of health is so much more a mix of profiteer serving propaganda and censorship than truth that ... I have to take a really deep breath (or several) when I hear things like the results of that survey or read (just now) what Dr. Suzanne Humphries wrote in a couple of paragraphs about an omission in her medical school training from her recent Rising from the Dead publication, p. 36:
Medical school began in August of 1989, the year that 18,193 people were infected with measles in the USA. By 1990, the USA saw 27,672 reported cases of measles. In 1991, measles continued its course in a heavily vaccinated population. The city of Philadelphia, where I was in medical school saw nine deaths from the disease and a total of 9,643 cases reported.
I never heard a word about it until 2015 when Paul Offit went ballistic over 600 countrywide cases in 2014, suggesting that all rights for vaccine choice be removed from parents and that reporters who publicize any debate could go to "journalism jail"[10]. The blitz continued with attorney Arthur Kaplan stating that vaccine hesitant doctors should have their medical licenses removed.[11]
She didn't hear about 9 measles deaths, and more than 9,000 reporated measles cases in Philadelphia where she was studying as a medical student? Did it make the MMR look bad? Well, I guess in 1989 they could recommend additional and maybe accelerated dosing without liability (and quietly).
Posted by: Jeannette Bishop | August 03, 2016 at 02:43 AM
Bob Moffit,
"It's probably just me .. but .. a "don't ask-don't tell" strategy regarding the looming catastrophe that awaits their first term in office .. seems rather passive to me .. as I would rather force them to LIE to me .. rather than affording them the opportunity well after their election .. to DENY they KNEW anything about the catastrophe that lies ahead."
This is an issue that probably falls way below their radar screen. I suspect that, on an issue this detailed, they would go to their medical advisors and parrot what they are told. For Hillary, it might mean consulting with the Director of NIMH, or equivalent. For Trump, probably someone similar. Either might suggest facilities supported by some combination of Federal/State/Private Insurance funding, with some level of co-pay required. In the end, that would mean you and I, along with the relatives of the afflicted, would foot the bill.
But, with all due respect, I don't think you are asking the right question, or at a minimum, there should be another aspect to your question. The additional aspect should have two parts: what steps will you take to identify the main contributing factors to autism, and, once identified, what steps will you take to insure that those most responsible for the contributing factors are held financially liable for damages caused, and perhaps even criminally liable? I don't like the idea of having to pay for damages caused by someone else. Asking them "if they KNOW .. and .. therefore are PREPARED .. to deal with the thousands of autistic children that will be graduating during their first term in office" is a 'horse that has left the barn' approach. Certainly necessary to deal with the impending catastrophe, but insufficient to prevent further catastrophe.
Posted by: Ronald Kostoff | August 02, 2016 at 08:53 PM
First, In all the "primary debates" no questions were ever posed regarding the Autism Explosion.
Second, no Media people. today, ever bring up the rocketing of the Autism spectrum when interviewing any candidate.
So now it's Trump (on record connecting vaccinations and autism), and Clinton (who thinks the sky is blue, and vaccines are great).
WE have the Mother of All Catastrophes - our U.S. child mortality and terribly chronic child illnesses setting record highs - taking place right now. AND, NO NEWS ANCHORS TALK ABOUT IT, OR ASKS OUR PRESIDENTIAL CANDIDATES about this?
Our news media has proven they are total whores to Pharma and Govt Agencies such asa CDC and NIH.
It will take a gigantic upheaval, perhaps by Donald Trump, to stop this self-destruction of the United States.
Posted by: david m burd | August 02, 2016 at 08:29 PM
It seems to me that Donald Trump has an awareness of the problem.
Posted by: Sun~Rose | August 02, 2016 at 05:17 PM
do you really want to know what happens to the adult non-verbal autistic? i am the mother of a 42 year old non-verbal adult autistic son who was for years in a group home. i can tell you the moment the home got help from j&j every one became "psychotic" and dangerous and in need of risperdal and, eventually, put to sleep 18 to 23 hours a day. when the ministry announced that it was sending someone to "inspect" the home, extra staff is sent to clean the house, to cook fun food, to "wake up" the "clients" who would wander around the house smiling silly like inebriated drunks, getting into "frozen" states and if you force them to move, or not, they might attack you unexpectedly, with superhuman strength or bang their heads making holes in walls or scratch bloody their bellies....and that would confirm the ministry that the autistic are a danger to themselves and others plus justify the need for 2 staff for every one around the clock, justify the use of strong anti psychotics...the reality is those funds demanded pay administration, staff are reduced to minimum while clients are kept asleep..... and, they wait for parents to get scared, sick, old, to get full guardianship of their children. yes, caring for the adult autistic is easy profitable business.
Posted by: josie muller | August 02, 2016 at 03:08 PM
So you are only talking about severe autism - classical autism? Did you know that recent research has been showing that autism may show up differently in girls and women and many have fallen under the radar? I run a group on Facebook for adult women age 40+ with autism/aspergers. Most do not seem to have classic autism but nevertheless continued to fall through the cracks and many didn't get diagnosed until they were adults. There are many groups online for young adults and older adults. Happy you are bringing this up.
Posted by: Cat | August 02, 2016 at 02:57 PM
This recent article might be of interest:
Autism spectrum disorder in adults: diagnosis, management, and health services development.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4940003/
Posted by: ndavis | August 02, 2016 at 01:45 PM
@ Ronald Kostoff
"In truth, they have responded to your question by their actions and neglect; the words are not necessary!"
My friend .. with all due respect .. it must be very frustrating to KNOW how worthless it would be to ask our two Presidential nominees if they KNOW .. and .. therefore are PREPARED .. to deal with the thousands of autistic children that will be graduating during their first term in office .. because .. according to you .. "if either one gets in office, what would prevent them from shifting back?"
And so .. your advice .. to make certain they don't "shift back" .. is not to ask them the questions in the first place?
It's probably just me .. but .. a "don't ask-don't tell" strategy regarding the looming catastrophe that awaits their first term in office .. seems rather passive to me .. as I would rather force them to LIE to me .. rather than affording them the opportunity well after their election .. to DENY they KNEW anything about the catastrophe that lies ahead.
But ... as I said ... that's probably just me.
Posted by: Bob Moffit | August 02, 2016 at 12:31 PM
Bob Moffit,
"In any event .. while I realize we can't ask our two Presidential nominees ALL the questions we would like to ask them .. but .. WE CAN ASK THEM IF THEY KNOW OF .. AND .. ARE PREPARED TO DEAL WITH .. THE LOOMING CRISIS IN OUR COUNTRY AND COMMUNITIES WHEN THE PROJECTED 500,000 AUTISTIC CHILDREN BEGIN "GRADUATING IN RISING NUMBERS" .. FROM SCHOOLS DURING THEIR FIRST TERM IN OFFICE?"
Suppose you were able to ask them your question during the first debate. What credibility would you give to any response? Look at the shifting of positions they have done already on the campaign trail. If either one gets in office, what would prevent them from shifting back? Do you really believe Clinton's latest position on TPP?
The attention and emphasis that they have given to drugs in general and vaccines in particular on the campaign trail should tell you where they stand in no uncertain terms. They will stay with the status quo on drugs and vaccines unless and until a sufficient number of voters tell them they want otherwise. In truth, they have responded to your question by their actions and neglect; the words are not necessary!
Posted by: Ronald Kostoff | August 02, 2016 at 11:08 AM
Tom Clancy
Unfortunately, not showing this end.
JS (UK Editor)
Posted by: John Stone | August 02, 2016 at 10:03 AM
Thank You Bob for that last comment in your last paragraph.
But since both political parties have been involved that is not likely going to happen.
Oh, if only we did live in a reasonable and sane world - that is exactly the type of parent that would have been up on stage on both parties.
Strange, twisted, corky though - it is all related - if the truth be really known.
Mental health is probably worse in the blacks since it is related to the immune system - and it is -- and all of this is putting blue lives in harms way too.
And blacks I do think are having more trouble - with our immunization policies -- at first I did not think so - just a flux that was caught by the CDC. (Dr Thompson's admission that blacks up to the age of three have a higher incidence of reacting to the MMR than everyone else,; but hard to know since it is all in the trash)
Recently a study that came out that surprised me - that blacks have a worse outcome if diagnosed with melanoma than any other race. Coming in second was Hispanics, coming in third was those with Asian ancestors, and native Americans - and then whites.
They then threw out some theories of whay blacks have a worse outcome and came up with maybe: the medical people may not look, The blacks are poor and may not seek medical attention promptly, the darker skin they are harder to detect, the cancer appears on unlikely places like the souls of their feet and palms of their hands.
I don't think any of these are good explanations since the study said that in allllll stages of the melanoma that the cancer was caught at - the outcomes were worse than all other races.
There is something there that has to do with the immune system and the pigment of the skin ,
It was not lost on me that the pigment of the skin is also deeper inside you than just skin too - it is also at the hypothalamus ( I think that was the part of the lower brain it was in?)
My husband has terrible vitiligo, the immune system is attacking his pigment and leaving places on his skin without any pigment. This summer, I noticed that my childhood friend that made a doctor' and some years ago got another series of Hep B shots - has had a bad thyroid for years - it is worse but also she has developed this same condition as my husband except so far just on her hands.
Posted by: Benedetta | August 02, 2016 at 10:01 AM
I just wrote a longer comment. I *HOPE* it didn't just disappear! I might have clicked the wrong button when I "previewed" it....
Posted by: Tom Clancy, Jr., | August 02, 2016 at 09:58 AM
Anne, Thanks again for focusing on lifespan care. That prominent autism authorities are trying to dismiss the autism epidemic is a disgraceful outrage. President Obama and my senator, Elizabeth Warren, reply to my letters telling me we need to "level the playing field for all handicapped people." They see no need for scientific research to look for causes of any handicap.
In my response to the IACC Request For Information (RFI), I repeated what I submitted for the RFIs in 2008, 2009, and 2010:
Make long-term-care insurance mandatory for every child born. Actuarial scientists might more quickly determine the cause of autism than present-day medical experts.
Posted by: Patience (Eileen Nicole) Simon | August 02, 2016 at 06:45 AM
Anne writes:
"We need to be asking the people in charge of health care more than one that only gets a vague, shoulder-shrugging answer."
With all due respect to Anne .. for TWO DECADES .. I think we have been wasting our time "asking the people in charge of health care" to answer the many critical questions regarding "cause, cure, prevention, treatment .. on and on .. having received nothing but "vague, shoulder-shrugging answers".
In my humble opinion .. we have been asking the RIGHT QUESTIONS to the WRONG PEOPLE.
In any event .. while I realize we can't ask our two Presidential nominees ALL the questions we would like to ask them .. but .. WE CAN ASK THEM IF THEY KNOW OF .. AND .. ARE PREPARED TO DEAL WITH .. THE LOOMING CRISIS IN OUR COUNTRY AND COMMUNITIES WHEN THE PROJECTED 500,000 AUTISTIC CHILDREN BEGIN "GRADUATING IN RISING NUMBERS" .. FROM SCHOOLS DURING THEIR FIRST TERM IN OFFICE?
Was anyone surprised that NEITHER established political party even mentioned AUTISM in the four days of "self-congratulatory celebration"? I think that 1 in 45 children being diagnosed autistic EVERYDAY in this country .. should have JUSTIFIED "moms of autistic children" be given featured speaking roles .. as were awarded to other moms who suffered similar personal tragedies in far lesser numbers.
Posted by: Bob Moffit | August 02, 2016 at 06:36 AM