Age of Autism Weekly Wrap: Outcomes
By Dan Olmsted
It's often said that the worst fear of parents with an autistic child is this: What will happen after we're gone? This week brings the reminder that there is an even worse fear: What happens if my child dies before I do?
The death of Avonte Oquendo, whose remains were identified this week, brings that fear into high relief. The only good is its reminder, if one were needed, that "being autistic" is not the same as being "differently abled," and that the autism community cannot simply fend for itself. I remember sitting next to Bernard Rimland as he told the mother of a high-functioning young man -- a mother who felt her son was humiliated by the depiction of autism as a disability -- that if her son was content and capable, more power to him. That was not the kind of autism Bernie was talking about.
Nor was he talking about the kind of "autism" on display among certain high-functioning self-advocates and celebrities whose "coming out" only serves to diminish the seriousnesss of the real autism epidemic. (I'm reminded of Tracey Ullman's skit in which she played a minor, over-the-hill starlet who tried to stage a career comeback with a book titled something like, "My Lifelong Battle With Drugs, Alcohol, and Depression." When all else fails, talk about your heroic personal struggle.)
It's also often said that autism does not shorten one's lifespan, but I'm beginning to wonder. As more and more kids with the severe, immune-compromised, physically ill kind of autism age out into adulthood -- "after the bus stops coming" -- the prospects look bleaker, not better, for so many. The denial of the epidemic has allowed planning for the tsunami of young adults headed our way to fall into abeyance. Puberty seems to hit many children not only with new and sometimes disturbing behaviors, but with seizures and other new and frightening problems.
One biomed pediatrician told me that she feared some kids are like AIDS patients -- they have an acquired syndrome that can be progressive and end in multiple medical problems and, in some cases, death. One of the 11 original "Kanner kids" born in the 1930s died at 29, presumably of a seizure; he had suffered from them on a daily basis for years.
And another almost died in his early teens. The first autism case, Donald Triplett, now 80 and living in his original home in Forest, Miss., staged a remarkable improvement when treated with gold salts for a life-threatening case of juvenile rheumatoid arthritis. Who among us thinks that the disorder that threatened his life was unrelated to the cause of his autism?
So that's 2 out of 11 with not just autism, but something fatal or potentially so.
Better is a relative term. We also ran a piece this week by Wendy Frye, whose son James is a talented artist and much, much better overall after, his mother says, $90,000 in debt accrued to treat him (with one trip to Disney thrown in before the credit cards maxed out).
"We are 'winning'-ish," Wendy wrote. "But is winning symbolic as a 'recovery'? No, winning for us is a continued road to 'betterment'....at whatever level. And yes, we are better...for that we are thankful."
But the toll on families just seems to mount. On Facebook recently, this was posted. "Autism is devastation. We had to put the house on the market tonight."
Dan Olmsted is Editor of Age of Autism.
Eileen Nicole Simon:
Your story is so heartbreaking, and I commend you for keeping up the good fight. Babies every single day are being subjected to these lifethreatening decisions so save nothing but a few minutes of bed time on a hospital's profit budget.
Here is a new article, you are probably are already familiar with it, about how boys are more susceptible to a more violent form of cell death due to oxygen deprivation/brain injury, than girls. Couple that w/a neonate getting a HEP B shot on day of birth and the ramifications are horrifying. At least the article mentions the possibility of how to recover.
"Sex-specific patterns of recovery from newborn brain injury revealed by animal study"
January 30, 2014
Johns Hopkins Medicine
Posted by: Jenny | January 31, 2014 at 10:06 AM
Eileen Nicole Simon - Thank you for sharing your story. It is heart-breaking and it scares the hell out of me. There are real stories out there that are being silenced. As you said, the idea that autism is just a difference needs to be strongly opposed.
Posted by: Nancy | January 27, 2014 at 12:06 PM
Thank you! I have many wordless worries about what my daughter experiences internally unseen or what, in her distress, she is unable to communicate. Most people don't see her distress though. She is so excited to go out and interact with others, they see her at her best usually, though I often see her quickly tire and worry that as she becomes more cognizant of reactions and expectations she may not feel so outgoing. I desperately want her to be cognizant, but also free of the physical burdens that intensify the pain of some things. In a way there are two worries, that her life will be short and that it will be long but painful.
It seems to me the vaccine mantra "the benefits far, far outweigh the risks" has given way quite a bit to now "vaccines save lives." It's kind of like an unstated admission that the risks may just have shifted or even the suffering increased possibly, but without studying it "we" (the collective authorities) are sure we are at least saving lives. It almost sounds to me now like they are desperate to convince themselves. What if "we" are wrong again? We already know that many suspected and known vaccine "side effects" increase mortality. We are now talking about the likelihood of the boomer generation facing a shortened life-expectancy than previously seen. I look at our highly vaccinated youth, admittedly environmentally assaulted from many directions, but seemingly worse off than my generation as children and teens in ways that can't be pinned on all the things the mainstream wants to blame, and so worry about the toll this huge immune-system manipulating experiment has taken for all of us. I don't understand how they can be conscious of the changes for the worse while having changed how much intervention happens in "healthcare" and not have enough conscience to call for study of the "dark side" of this intervention.
Perhaps, with an awareness that keeping one side of the equation undone or unseen as much as possible is violating individual rights to give informed consent, there is desperation to the hope that the ends will still justify the means, but I think the means in great part have determined the ends. There may really be ways to improve our existence with the use of vaccination, but certainly that is much less likely if we are allowed to walk blindly into the vaccine pitfalls and left to struggle to figure out both what is going on and how to get out, often being told we were destined to fall in the pit because of genes or whatever and to accept it and/or to be proffered help that just widens and deepens the pit.
Posted by: Jeannette Bishop | January 26, 2014 at 02:45 PM
My sister has true high functioning autism,not Asperger's.She attempted suicide twice in her 20s.She fits more into the subtype of autism that has minimal medical problems,"just" epilepsy,no regressions,and multiple psychiatric diagnoses.
We don't need to hear any more feel good stories from the likes of Dan Akroyd,about their accomplishments of passing for normal,with very high functioning autism.I would much rather see someone uncover all the stories that no one knows about,of people like Martha Moyer's son.People with severe autism who are shut away in homes with little or or no proper medical care,or even the right diet.
As someone who has folate receptor autoantibodies,and regresses or gets seizures if they eat any dairy.I am angry and disgusted over the idea of giving someone with severe autism chocolate pudding as a "reward".It is well known dairy contains opioid peptides,and is as addictive as heroin.It is one of the most toxic substances you could give to someone with autism.
Posted by: Roger Kulp | January 26, 2014 at 01:28 PM
David Adrian Thomas Esq,
the report you present is very disturbing and it does seem novel- the idea that suicide does not necessarily depend on IQ level. More and more we are seeing the reasons why autism is just not affordable for our governments- either economically or emotionally. We are seeing far too many breakdowns/deaths/murder/suicides in our youth. I wish you well, my friend and thank you for sharing.
Posted by: Truthseeker2 | January 26, 2014 at 11:59 AM
Texas seems to be in denial about more severe adults with autism. At the age of 75 I am still trying to hold my son together. He has had seven crisis incidents and his Depakote has been doubled. This state believes in sovereign immunity of state agencies. One such agency neglected the toileting of my son so now he also has paralyzed bowels but no one was held accountable because the "King" has privileges of abandoning their own and denial if anything happens such is the politics of Texas. I wonder how the battle for caring for my son will end. I can not live forever.
Posted by: Martha Moyer | January 26, 2014 at 09:17 AM
Heck - I even self induced severe bouts of retrograde, anterograde, psychogenic and dissociative amnesias to kill off the old me, once at age 15 and again at 38, because I failed to commit suicide despite pretty determined attempts in my infancy and childhood
Posted by: David Adrian Thomas, Esq, M.C.I.H.T. | January 26, 2014 at 07:10 AM
Is it taboo to speak of Autistic children being at greater risk of suicide ideation and attempts than non-Autistic - I attempted suicide five times before I reached the age of 8 and my last attempt was age 55 - the last one before age 8 ended in a 48 hour near death coma hiding in an industrial cold store at 30 degrees below zero - the one at age 55 in an 8 hour near death coma hiding in a bedroom from family members partying downstairs on a Boxing Day evening/night
Check out this recent scientific report if you dare http://news.psu.edu/story/267913/2013/03/11/research/autistic-children-may-be-greater-risk-suicide-ideation-and-attempts
Posted by: David Adrian Thomas, Esq, M.C.I.H.T. | January 26, 2014 at 06:45 AM
A tough article to write...and the problem is not fixed, so...Coming from getting it all handled...I am ALL for helping to recover and taking care of the ones who are already affected by vaccines and have autism, autoimmune disorders, allergies, neurological disorders, but I truly believe this nation has to face the denial of vaccine cause so that we can deter the onslaught of family medical burden. Families have the right to raise healthy children.
Posted by: MotherofPossibility | January 26, 2014 at 02:07 AM
Thanks for saying what I couldn't, Dan. I've been pretty much speechless after the news of Avonte.
Posted by: Adrana | January 25, 2014 at 08:32 PM
Autism is devastation indeed. Thank you, Dan, for continuing to acknowledge this.
I think the worst part about parenting a child with severe autism is actually the hope that they DO die before you do, since this seems to be the only way to guarantee that they will be safe and well cared for. And that is the saddest, sickest truth of all.
Posted by: Anon | January 25, 2014 at 08:11 PM
nhokkanen and Andrea, I think the autism epidemic is in part due to the obstetric protocol for clamping the umbilical cord immediately at birth, even before the first breath. Traditional textbooks of obstetrics used to teach that the cord should not be tied or clamped until pulsations in it ceased. Pulsations of the cord provide evidence of blood flow to and from the placenta continuing after birth. Placental circulation can continue for 20 to 30 minutes or more in some cases.
Transfer of blood to the lungs initiates breathing. Oxygenated blood returning to the heart from the lungs causes the fetal shunts in the heart to close, and the cord will then stop pulsating.
Back in the 1950s avant-garde obstetrics began including things like episiotomy, for which clamping the cord quickly was adopted to maintain a “sterile field” around the birth canal. Then articles began to appear like that of Desmond et al. “The phases of ‘transitional distress’ occurring in neonates in association with prolonged postnatal umbilical cord pulsations.” Journal of Pediatrics 1959;55:131–51.
The cord stump continued pulsating after being clamped off, and was associated with prolonged neonatal respiratory distress. This happened to my son Conrad, who had a “collapsing trachea” for months after birth, also very scary. A cord that does not fall off after birth may still contain fetal vessels.
Clamping the cord immediately after birth is a serious medical error that was instituted as protocol in the mid 1980s, about the same time the vaccine schedule was ramped up. Infants over the last 25 years have been subjected to many wrongs.
Posted by: Eileen Nicole Simon | January 25, 2014 at 07:51 PM
My son, Conrad, died in a group home from a prescribed overdose of Thorazine. The staff at the house kept telling the psychiatrist he needed more and more to control his difficult behaviors. For starters he was refusing to take the medication, so they crushed it and mixed it into his favorite dessert, chocolate pudding.
Conrad was minimally verbal, so they hired a “facilitated communicator” for him, and she informed the staff that he told her he had been sexually and physically abused by me, his mother! I was therefore banned from visiting him. The last time I saw Conrad, he was standing on the front steps of the house in his purple ghost costume for Halloween, and he said to me, “I love you Mom.”
19 years ago last Friday, Jan 17, Conrad was found in the morning by staff dead in his bed. He was 31 years old. I am sure he suffered terribly. I sought legal help, but could not take time off from work for appointments with the lawyers. They warned me that I would end up fighting the state of Massachusetts, and yes they met with me many times very anxiously. I heard that the state sued the group home vendor, but the vendor is still in business.
Conrad’s older brother now lives in a group home. He is very high functioning, and has co-authored two ebook memoirs with me (on amazon.com and Barnes & Noble bn.com). Still, he is not employed, though he is capable of useful work, but might need too much supervision for a real job. Now at the last Community-Based Flexible Supports meeting we attended, we were told that the Department of Mental Health (DMH) can no longer guarantee housing for all “consumers.”
I am worried sick, especially in this very cold weather. DMH has a despicable slogan, “Recovery is Real.” I keep saying “Progress is Possible.” My son’s writing abilities are an example of this. But, yes, I am fearful of what the future holds.
Autism is a serious neurological disability. The idea that autism is just a “difference” must be strongly opposed.
Posted by: Eileen Nicole Simon | January 25, 2014 at 07:16 PM
Andrea, we had a similar situation -- though not of that duration.
The umbilical cord would not detach and the physician said I was not being "vigorous enough" in my treatment. I remember wondering why someone would want to rush the healing process by applying more force, potentially exposing unprotected skin in an area that was once the fetus's main conduit of life support.
The entire institution of medicine is based upon observation -- but why is more theoretical weight given to input from people who see kids for 10-15 minutes over months and years, rather than parents who watch like hawks 24/7?
The reports of hundreds and thousands of families gets funneled, filtered and distilled through the subjective attitude of one physician, whose investment is in dollars and reputation rather than the spiritual/ethical connection of family.
Posted by: nhokkanen | January 25, 2014 at 03:13 PM
Always well written items everywhere... will post this here.
This mother has the vaccine program pretty well figured out.
Posted by: cmo | January 25, 2014 at 01:16 PM
The minimization of autism as a disorder and as an epidemic is part of a planned and well coordinated public relations effort.
Our opponents know that if the American public understood the level of suffering, they would demand answers to its' cause and justice for the victims.
Posted by: Louis Conte | January 25, 2014 at 10:29 AM
What caught my eye about your article is the pediatrician who said our kids are lke aids patients.
my son had an unusual situation as an infant. I had mentioned it to David Kirby many years ago and he said he would like to look into it's occurrence further but has yet to. Also, Dr.Sears via email gave me a medical explanation but I am sorry to say I can't locate that explanation so any medical opinions would be appreciated.
As a newborn my son's umbilical cord did not attach in a "normal" time frame. I wss told the detachment usually takes anywhere from several days to around 4 weeks. Despite several return trips to the pediatricians office for applications of silver nitrate it hung on for an unprecedented eleven weeks! On one of my visits one of the partners called the entire medical staff into the exam room and informed them that this is quite unusual and something normally seen in a child with a serious immune deficiency like aids. He does not have aids.
I am curious if any other child had a similar situation. I regret not realizing this revelation probably should have alerted me to proceed sith caution with the vaccines. After his 12 month shots he regressed and by 2 was diagnosed wih autism. He's had many immune issues and the therapy he responded to the best was IVIG that he got for 18 months after a PANDAS diagnoisis.
Posted by: Andrea | January 25, 2014 at 10:00 AM
Great weekly wrap. And when I read the comments on articles that Anne posts, I always have to respond to those that say we are killing other children by not vaccinating ours. Well, hello---autism kills in many ways- from drowning, eloping, seizures. We don't know yet how many of our children will die young from complications of autism due to their poor immune systems because most are still so young.
Posted by: Maurine Meleck | January 25, 2014 at 09:09 AM