Katie Wright: An Open Letter To NIH & Autism Research Community -- Watch CD Foakley, Broken Nights and Lost Days: Inside World of Severe Autism
By Katie Wright
Over the past weeks we have heard genetic researchers hailing the discovery of the latest (I have lost count) autism “gene.” We have heard how “exciting” this discovery is, what a “breakthrough” this is. All their hard work is paying off, and so on and so on…
I am sorry to say I am not excited in the least. These “breakthroughs” seem to appear with great regularity yet make no impact on the lives of anyone actually living and suffering with autism. Neither do these “breakthroughs” elucidate the cause of autism or treatment options. They merely describe the genes involved in a tiny population of ASD people with a chromosomal abnormality. This minuscule group has almost nothing in common with comparably huge population of those affected with severe regressive autism.
Here is a video of a California family struggling to care for a severely autistic 17-year-old boy.
CD Foakley Autism Broken Nights and Lost Days
I challenge anyone to live through this. I have seen and experienced many of the worst aspects of autism but this family truly humbles me. They are heroes in every sense of the word. The Mom introduces the family by stating it is Sunday and they have been up since 4:55 AM. This 17-year-old boy is in pajamas, a diaper and is wearing protective headgear. The boy repeatedly trying to strike himself and the Mom is attempting to hold his hands by his sides. She has the resigned, heartbroken voice of a parent who has been through too much and lives in constant emotional pain. The Dad is behind the camera.
The Mom describes how her son suffers from “savage self abuse” and has badly damaged his ear. The boy is walking in circles attempting, over and over again, trying to strike his head. The Mom reels off a laundry list of the medications they have tried, all of which have failed to help her son. In a desperate attempt to stop the self abuse she ties the boys hands behind his back. Over and over again this Mom says, “I don’t know what to do. I don’t know what to do.”
The boy is clearly ill, probably chronically so. He is emaciated. His Mom describes how he has suffered from impacted bowels. This is an extremely painful, yet common problem among the regressive autism population. Little to no research monies have been invested by the NIH towards uncovering the cause of bowel disease in these children.
In 2009 the NIH invested $6,059,000.00 in face processing, eye gazing research.
The Mom knows her son is in pain, probably constant pain, and states she has been taking her son to doctors for 17 years. “I can’t seem to get any doctors to figure out what the hell is wrong with our son.”
“I have to spend 19 hours a week researching …because no doctor will put in the effort, time or compassion to help him…they just throw drugs at him.”
There is a direct correlation to GI disease and regressive autism. I don’t know the specifics of this child’s autism, but in most cases regressive autism occurs after a series of infections, precipitated by an adverse vaccine reaction. A common denominator among these families is a history of autoimmune disorders. These children, like mine, are born with more fragile than average immune system and cannot safely tolerate the challenge of numerous viruses and dozens of toxic adjuvants. 80% of the immune system is in the gut, hence the prevalence of GI disease in this population. If untreated, as it usually is, the brain is damaged via the immune system, which directly connects the gut to the brain.
No human being, no animal, should have to live with the kind of suffering this boy endures. What happened to this child’s brain when he was a baby to cause this degree of autism? Why isn’t anyone asking this Mom what she thinks?
How is it possible that helping these children is such a low priority at the NIH and among the autism research community? Why are we celebrating the finding of the hundredth autism gene while doing next to nothing to helping autistic children living in agony? Why are hundreds of millions of dollars being spent on genetic research that just might, someday, elucidate “pathways to treatment” when we can could just listen to these families and start studying and treating these children today?
I want to thank this incredibly courageous family for sharing a day in the life of their son. Their son cannot speak for himself. Posting this video is a way of making his severe autism visible. Children like this do not attend IACC meetings, they do not lobby their congressperson, and they do not give uplifting speeches about how they are “different,” not “disabled.” These children will not develop computer software, they do not have savant skills, and they cannot speak or care for themselves. No playdates, no sports teams, no drivers license, no prom, no college, no sleeping through the night without a diaper and no freedom from pain. Everything, but the love of his family, has been taken away from this boy.
It is inexcusable that the medical and research community has failed so abysmally to help this child and all the autistic children like him. I hope every researcher reading this has the courage to take a good look at this boy’s face and imagine what his life is like and what autism has done to his family. Then think about how you can work with parents and make serving these children a priority.
Katie Wright is a Contributing Editor for Age of Autism.
Dear Family, we are partents of a boy who had a severe autism and recovered it. Now he is 10 years old. Unfortunatelly our scientific practical research community Social Autism is in Russia. But we help such kind of children and families without any medication and ABA. If y are ready to really change your life and make your son healthy, please let me know on my e-mail and I shall tell you about our family project technology with 6 year experience in all details. We are ready to help y and any parents who are ready to change their lives by themselves. My name is Anna, mail - [email protected]
Posted by: anna | July 04, 2011 at 12:17 PM
I have been in brief contact with the family, and the mother expressed her happiness in finding out about this discussion and comments. She said that she had an RN give her son a B6/B12 shot (the RN is working for a new DAN! doc,) and that he didn't even flinch. She said that she "should have done this a long time ago." I sent her the link to TACA and also some yahoo groups that could help her. I have hope that her son will get better soon as it sounded like she was wanting to go this route.
Posted by: Julie Leonardo | July 03, 2011 at 09:17 AM
Media Scholar
Your link leads to a good thing, right?
Something that you should join instead of Autism Speaks?
Posted by: Benedetta | June 26, 2011 at 02:34 PM
Call it the way you see it. This is exploitation most likely relating to money-grubbing people attempting to grab additional hush money from the federal government via the re-authorization of Autism Speaks' "No-Show" cream puff A.K.A. the Combating Autism Act.
If you support Autism Speaks you support the CDC anti-litigation bloc of Autism research and you support their strategic plan of genocide. You support Autism Speaks and you support Paul Offit.
http://caacoalition.org/index.php?option=com_content&view=article&id=47&Itemid=53
Amazing that these "non-profit" organizations are the same organizations that accepted the zero option and decided to profiteer by taking money the first time around.
They flaunted themselves by telling parents "A billion dollars is a billion dollars".
While they claimed at one time the voices of our children have been silenced by Thimerosal and vaccines amazing how quiet it became after the first Combating Autism Act went through.
Posted by: Media Scholar | June 26, 2011 at 11:15 AM
The Doctors have let our children down. I find nearly all of them useless and a waste of our time. And if your child has seizures, forget it. you are totally on your own. I know more about my child then they do and I wish that was not the truth. They discriminate against children with autism.
Hopefully, someone will see this suffering and do something. I have seen this family's You tube videos before and could not sleep for weeks after. It breaks my heart.
Posted by: Maria | June 25, 2011 at 09:16 PM
There is some excellent wisdom and advice in the previous posts. I too would urge these parents to move away from standard-care physicians and psychotropic medications. Autism is a disease of the metabolic/immune systems and the first place for healing is the gut. My 12 year-old son, with "severe" regressive autism, was greatly comforted by the GF/CF/organic diet and by selective attention to the DAN protocol.
Many blessings to all of our children.
Posted by: Sarah L'Heureux | June 25, 2011 at 09:00 PM
My son also hit his ears like that exactly like that. He had ear infections and toothaches. Stop all the useless tests only putting him through more stress. Check ears and teeth right away. Only medicine that works is Risperdal Not the generic kind. Use name brand. It will stop self abuse and get the weight on right away. Hope this helps.
Posted by: minnesota | June 25, 2011 at 01:08 PM
We strongly applaud Katie Wright's open letter.My husband called it "the most touching article (letter)about autism we have ever read".
Our son has severe autism too. Every single day, he is suffering and we are struggling.Who can help us???
Posted by: Jenny Zheng | June 24, 2011 at 01:11 PM
I am so sorry for this boy and his family. Someone suggested making this into a testimony to show at the next IACC meeting - very good idea. There was also another video recently of a boy in police vehicle... Ari Ne'eman& co should be made to watch these every day. Those who fund eye-gazing studies should be made to watch this.
Posted by: Natasa | June 24, 2011 at 06:56 AM
I sent a message to the mom through her youtube account and told her to see this post so she could see everyone's suggestions. I hope she reads it.
Posted by: Julie Leonardo | June 24, 2011 at 06:46 AM
Australia
Anne McElroy Dachel- it is interesting your point about studies taken from 8 years ago back in 2006 identified that the rate was 1:110.
Our studies here in Australia dates back to 2004 whereby the rate was determined 1:160. This rate is constantly quoted by our government's when in actual fact we should be looking at a closer rate of anywhere between 1:90 to 1:100.
Our governments will not conduct any current studies, perhaps they are too frightened of what the results may be!!
Elizabeth-AussieMum
Posted by: AussieMum | June 24, 2011 at 04:59 AM
Thanks you very much Katie for writing this post and bringing more attention to this family. Inexcusable indeed that no one gives them answers and care- Inexcusable that still many families across countries experience near similar daily distress and continue to be essentially ignored by mainstream health care services. The arrogance of those denying this reality is criminal. Most parents in similar situations are too drained to report to the rest of the world what they experience and the issues are left unnoticed, conveniently hidden. But this family is not alone. Time for more lobbying and petitions, perhaps bringing this to the direct attention of M Obama or H Hilton?
Posted by: Lorene Amet | June 24, 2011 at 04:55 AM
Ho to the Amen Clinic to get a pet Scan of the brain and they will look for Brain injury. Get teh porphoryn study to check for methl mercury or other heavy metal poisoning. Give him lotd of Omegas a combination of EPA and DHA that equals to 8oo mg of each per day. Metagenic has a liquid one that has a lemon flavor. 1.4 tsp of that a day really help himhave better eye contact and purposeful interaction. It also helps the mood swings.Give him sublingual b12. Get him om the Gluten Free and Casein Free diet. GABA calms anxiety. Triptophan helps sleeps. If he tolerates it, give him compressions and scratchy scratches to center him, get him a body sox as a sensory integration input. It will ground him. He may have excitoxin cells going to his brain making him agitated, impulse control issues and doesn't look in the eye anymore. With the impacted stool that went up to his blood stream and those excito toxins are getting him violent. It's like it burning his brain. Use ketokonozole (an anti yeast) and eliminate it out. It will give him a head ache with the sudden surge of dead yeast, but ride it through and you'll see. That is why he is attacking back where he is hurting. Get Sacharomyces Booulardi from KLaire lab. Also get Therbiotic complete to help reestablish his gut. That will help his gut to kill the candida infection. In conjunction with detoxing him with B12 and folinic acid (leucovorin) you will be helping him detox and build and heartier immune system. Check his vitamin D3 many kids on the sprectrum don't produce enough. Also check his iron levels low iron may produce seizures. Check DR Woellers websites.
Posted by: Melanie Medina Metzger | June 24, 2011 at 01:18 AM
Amen Katie. My heart goes out to this courageous family and the thousands like them. They deserve treatment and support.
Posted by: Lisa @ TACA | June 24, 2011 at 01:16 AM
I see this everyday at my son's school (exclusively autism) and my heart breaks every day...and I WISH so much that all the children I see, who are in excruciating pain, could see a DAN doctor, because we have had AMAZING results (my son was a previous head-banger, so we've been there!!) we treated pyroles, a systemic yeast infection, fixed the gut dysbiosis, removed the allergens (wheat, dairy, phenols, etc), cleared the mercury and other toxic metals, and the remainder is to balance his immune system and possible chronic viral infection...the last pieces of the puzzle...but we have a very happy boy now who sleeps all night and has a sweet disposition (without any medication at all). there IS hope, and healing.
Posted by: Janet S | June 24, 2011 at 12:10 AM
Born in the mid-90's, I would guess he was given the full load of hep b shots and 100+ micrograms of mercury by 6 months. It is beyond belief that no one knows the cause of this national disaster. How many gene machines have been sold so every lab can seek out grants to look for the Autism gene ???
Tens of thousands of American homes have become "small institutions" staffed 24 / 7 / 365 by one or two parents.
Posted by: cmo | June 23, 2011 at 10:17 PM
ugh, the video brings back memories...sometimes a cry for help is really a cry for help. Lamictal almost sent my kid to looney land, and all the antipsychotics. My son clearly had gut related encephalopathy, as this child, and I hope the mom gets help on that front. He also has PANDAS, and that could explain a lot for this child, as well as SEVERE nitrotyrosine levels, indicating BRAIN immune INFLAMMATION, aka, meningitis ongoing. If the medical community doesn't understand this, they are as archaic as cutting open someone with a blunt tool with no anesthetics or cleanliness. Seriously, get your heads out of your asses AMA and DO SOMETHING for our children!
Posted by: kathy blanco | June 23, 2011 at 09:17 PM
This was filmed on February 1st 2009. The mother said that right at the start. I wonder if they ever got him onto D.A.N and off the cocktail of big pHARMa drugs. Anyone know?
Posted by: Paul Stefanovic | June 23, 2011 at 08:35 PM
Thank you everyone for all the help you have offered this family.
I will let this Mom know about all these generous offers.
Once again I want to thank this brave family for sharing their story on youtube.
Posted by: Katie Wright | June 23, 2011 at 07:36 PM
My heart is broken and my stomach is sick for this child and his family. But worse is that my blood pressure is through the roof! Has this boy been to a DAN! doctor? Functional medicine specialist? Naturopathic doctor? Homeopath? Or any practitioner who is not of the "western medicine" mindset? This poor woman "doesn't know what to do", well, this is what to do!! I assume there is some reason for this, but if the reason is skepticism, doesn't 17 years of doing the same thing and expecting different results cause a person at wit's end to say, "well, it can't hurt"? I'm sorry if my tone sounds callous, but seeing a story like this gives me a brief look at what life might be like right now in my home had I not thought, "well, it can't hurt". Also, I am curious as to what type of research this poor mom is conducting for so many hours? Seems to me to be the wrong kind.
Posted by: whatever | June 23, 2011 at 06:41 PM
katie,
Please tell this mom that I would be glad for free to review her son's labwork and add any insights...mainly I can interpret organic acid tests and amino acid tests, and standard bloodwork (like a complete blood panel). I taught the Labs 101 course at AutismOne, and have recently had a HUGE breakthrough in understanding a new and common pattern on that test in autism and in chronic fatigue syndrome that has taken me back to Bernie Rimland's work on B6 and magnesium, and realizing that a lot of things compromise the ability of that to work, but I can see it in labwork. Any mom who is researching 17 hours a day deserves a bit of help!
Susan Owens
Head of the Autism Oxalate Project at ARI
DAN! thinktank member practically since it started
Posted by: Susan Costen Owens | June 23, 2011 at 06:17 PM
To this family: you are heroes. The day will come, very soon, when the doctors will rue the day they ever met you. Do not give up. Listen to yourself. And, if at all possible, consider an alternative treatment/practitioner. IMHO, western medicine has failed me & my family. I have no idea why it is a crime to help a child who is suffering.
Posted by: Margaret Burns | June 23, 2011 at 05:52 PM
The point to all this is that we parents are having do the work the doctors are suppose to be doing. We have to research, etc. We learn that picking the right doctor is very important. But, more important is the diet and the environment. We have to painstakingly learn which foods they benefit from and which make them worse. We have to filter air, water, buy organic, etc. because it does help. We find ourselves researching and then directing the docs on which tests to perform. Truth is, we have to recover our own children, learning more than our local doctors do. I recovered mine and one I adopted. I wish I didn't have to quit work and spend all my time learning to do it, and now I spend all my time making everything from scratch, and administering the supplements that keep my kids in regular school. My local doctor asks me questions. I don't mind that doctors don't know, what I mind is that they say nothing can be done, when lots can be. My children's previous docs, neurologists and psychiatrists, said "no one could help," as if we were in the 1950's. I thought doctors were taught to do referrals. If your a doctor and you can't help, then admit it and refer your patients out. Quit acting like you have all the answers. Only doctors who have actually recovered children have some of the answers.
For the lady in the video. Digestive enzymes and gentle herbs for inflammation worked better than all the psych meds we tried, and they worked so much better that I cried for months at the disbelief of how come none of the docs we saw knew this. My children could of avoided many years of suffering.
Posted by: Heidi N | June 23, 2011 at 05:40 PM
KDM, I was wondering if the kid had either
1) migraine
2) Meniere's Disease
3) adrenal exhaustion
Migraine disorder and Meniere's "Disease" are often diagnosed as each other, but are both syndromes, which means a cluster of symptoms of unknown origin. Migraines can happen with or without headaches, and Migraine-Associated-Vertigo shares the following symptoms with Meniere's "Disease" (which is officially a syndrome in site of the moniker "disease"):
dizziness/vertigo/vestibular issues
tinnitus
fluctuating hearing loss
These symptoms can be caused by many things (which doctors NEVER look for, because they'd rather diagnose a "disease" and hand out prescriptions or offer surgery), inlcuding
Vitamin B12 deficiency
systemic candida infection
celiac disease
thyroid disorder
cervical misalignment
vaccine reaction (there are cases written up on PubMed caused by hepB vaccine)
Gee, anybody notice any overlap with causes of autism symptoms here?
Posted by: Taximom | June 23, 2011 at 04:48 PM
PS. I interviewed four or five gastro specialists before I found one I liked who would scope Ben. Autists, it seems, are an anasthesiologist's nightmare, the exception to every rule -- they get about 8 miles to the gallon on Verset -- and most clinicians simply are not equipped or inclined to do anything but routine assembly line work. I finally went to a teaching hospital and found a gastro near retirement who welcomed us and put together the right team.
The lesson: shop around for a doc who will spend the time to do the job right. Google her. Network. Ask for references. Chat up the appointment booker and send your son's medical records on ahead. Fill a 3-ring binder with info on your candidate docs. Have a Plan B in place in case your first choice doc chickens out and cancels unexpectedly. Use the word "autism" up front in discussions with the booker to avoid wasting time. Spend as much care shopping for a specialist as you would shopping for a new car. You are the customer, and your business (endoscopy plus colonoscopy)is worth $5,000 to $10,000 to the hospital and winning team of clinicians you finally select to help your suffering child.
Posted by: Dan E. Burns - SavingBenBook.com | June 23, 2011 at 04:15 PM
Ben was like the 17-year-old boy (Jamie?) in the video. Endoscopy revealed H. Pylori, which can also be diagnosed with a stool test or breath test. The infection is well understood by mainstream gastroenterologists, is treatable, and is covered by insurance!
At age 23, Ben still has occasional episodes of maniacle laughter late into the night followed next day by SIBs. Then three or four SIB-free weeks and restful nights. We suspect systemic yeast triggered by lapses in his diet, and we are treating the yeast overgrowth with antifungal rotations and good-for-ya food (GFCF and no sugar). Drs. Jepson and Kotsanis took the time to help. Thanks be to the good doctors; there are a few out there.
Foakley family, you are not alone. Thanks for sharing. It can get better. Blessing on you and your son.
Posted by: Dan E. Burns - SavingBenBook.com | June 23, 2011 at 02:04 PM
My son is also on the more severe end of the spectrum, but until we know what causes autism there can be no treatment or cure. I have the same cynical attitute about these "genetic breakthru's" which could only account for 1 or 2% -- but clinicians have to demonstrate progress (even if there isn't any) in order to keep the funding coming to conduct more research. I'm not sure what the author wants people to "do" - I wish I had a treatment plan for my son which would make him normal (at least talk) but the reality is that there isn't one.
Posted by: Emily Tuck | June 23, 2011 at 01:29 PM
"In 2009 the NIH invested $6,059,000.00 in face processing, eye gazing research.
Conversely approx $500,000.00 was invested in studying ASD children with GI disease."
This will go down as the darkest time in medical history. It's no wonder mainstream medicine is fighting us with everything they've got. They're responsible for the atrocity of Jamie's condition, and now, for dismissing his suffering.
God bless Jamie and his family. Let's hope the awareness raised by this article will result in meaningful help for him. Jamie should be first in line for biomedical treatment - perhaps one of our doctors will reach out to his family.
Posted by: Madvocate | June 23, 2011 at 01:23 PM
How about getting them into the Autism Speaks ATN? Or the 2 year Trailblazer GI study AS is funding; where in CA are they? Can they travel to Davis?
Posted by: Garbo | June 23, 2011 at 01:22 PM
PS.... To the family of this boy... I'm sorry your son is sick. What a handsome young man he is!!
Posted by: joyous | June 23, 2011 at 12:44 PM
Again, I say..... It is up to parents to sue doctors who label children with autism before they properly diagnose them for medical issues. Until this happens daily, the A word is a handy way for the medical community to keep kids like this in the closet only to see the light of day on websites trafficed by their peer families. Sue the doctors for misdiagnosis and demand proper assessment. Surely a few self paid tests from metametrix or great plains will reveal signs of disease. Sue the doctors!!! It is the only way this abuse will stop as it will then and only then make doctors wonder if they are right or wrong and how they are going to get out of trouble.
Posted by: joyous | June 23, 2011 at 12:35 PM
This is absolutely heartbreaking to watch. How is it ever going to change? The testimony below from Congresssman Dan Burton is almost 10 years old. People who are listening are crying. And yet nothing was done. If he as a respected, long term member of congress could not affect change what is it going to take?
http://www.youtube.com/watch?v=5SsyZ8lMWGU&feature=related
Posted by: Marykay | June 23, 2011 at 12:16 PM
I wonder have they tried GFCFSF diet, Houston digestive enzymes, probiotics? I wish they could take him to a knowledgeable gastroenterologist such as Dr. Timothy Buie or Dr. Arthur Krigsman. I wonder if a good DAN! doctor could help them, such as Dr. Jerry Kartzinel, Dr. Elizabeth Mumper, Dr. Bryan Jepson. I hope they will investigate alternative biomedical treatments, as clearly mainstream medicine is completely failing their son.
Thank you, Katie, for your passionate advocacy, and for sharing this vivid story. My heart goes out to this family and I hope that somehow things get better for them!
To these parents, I would like to recommend Karyn Seroussi's book "Unraveling the Mystery of Autism and PDD". It is such a good starting point.
And these books too:
- David Kirby "Evidence of Harm"
- Dr. Bryan Jepson "Changing The Course of Autism"
- Dr. Jaquelyn Mc Candless "Children with Starving Brains"
- Dr. Robert Sears "The Autism Book"
Posted by: Lilly | June 23, 2011 at 11:28 AM
God bless that family. The mother’s quote, “I have to spend 19 hours a week researching …because no doctor will put in the effort, time or compassion to help him…they just throw drugs at him” is exactly what we have gone through. How in the world can anyone look at the boy’s emaciated body and not understand he is literally starving?
Our son had that same look. The most telling sign was the utter lack of muscle mass. We ensured he was eating plenty of high-quality protein, yet his muscles continued to waste away. The doctor’s were uninterested. My own research led me to conclude that his body was catabolizing his muscles in a desperate attempt to obtain essential amino acids, enough to barely keep him functioning. Google “kwashiorkor”; it’s a condition that happens to some 3rd world children after weaning. It is caused by prolonged protein malnutrition from an inadequate dietary supply. It causes the same “wasting” look and also causes neurological symptoms. Among other things, children with kwashiorkor are described as apathetic, uninterested in their surroundings, irritable, and petulant (the same symptoms that got my son labeled as high-functioning autistic).
My son can’t digest protein, but digestive enzymes and supplementing his meals with an elemental amino acid formula has literally changed his life. My research has led me to believe he has a condition related to celiac disease, but caused by molecular mimicry of certain vaccine components to wheat gluten (primarily those in DTaP and PCV). I’ve documented my findings here:
http://www.scribd.com/doc/58122226/Celiac-like-Disorder-in-Developmentally-delayed-Children-from-Bacteria-Surface-Proteins
Posted by: Jeff C | June 23, 2011 at 11:09 AM
I am disgusted to be part of a society that turns it's back on children like this boy. This is an atrocity, plain and simple. It is time to stop asking and to start demanding that our kids medical issues be a top priority. This boy is not a statistic, he is a real, living, breathing human being who is suffering, and deserves all of our help and concern. And that is especially true of the medical community. We can not allow them to ignore this boys massive pain and suffering any longer. Geraldine Dawson of Autism Speaks bangs down half a million bucks PER YEAR working for a charity that is supposed to help children with autism - what the hell can she say to this family to justify her lavish lifestyle? It is time for all of these fat cats of autism research to answer to these families.
Posted by: Sylvia | June 23, 2011 at 10:45 AM
Who sees Buie or Krigsman...can you help them get in?
Posted by: Helen | June 23, 2011 at 10:35 AM
kid could have a headache
that's what I feel like doing when I have severe headaches (cluster headaches/migraines). I just don't act it out. I also get sensitive to light and sound.
sound familiar?
Posted by: KDM | June 23, 2011 at 10:28 AM
The attitude of so many within our own community is if you are lucky enough to have a form of autism that isn't quite so disabling and depressing to deal with or even look at. Too bad Jamie has such crummy luck. They espouse an attitude of wondering why should Jamie's kind of autism punish those with a more desirable form? A manageable form. Some autism isn't so bad...stop feeling sorry for yourself and get over it.
People say Jamie should get proper medical treatment. But, as you can hear from his mother they have been trying for seventeen years and have yet to find it. For many they will never find the help. And all the drugs could be complicating the medical issues. Parents are literally between a rock and a hard place.
Two questions:
I thought Jamie was older. Is this a video from a couple years ago. Is Jamie still losing weight? My own son experienced rapid weight loss and he was diagnosed with h pylori. The stool can be tested for this. It's been a rough road getting him healthy again but he is getting better.
And has anyone asked Ari Ne'eman to watch a video of Jamie? I am interested in what he would say. If he would say Jamie should get proper medical treatment than he is not understanding what many families are facing. I suggest a viewing at the next IAAC meeting.
I too am humbled by what Jamie and his family endure. In my opinion, his situation is critical and deserves the most attention and resources. Not to do that is just being inhumane.
Posted by: Lucky or unlucky? | June 23, 2011 at 10:20 AM
It is hard to have words for this. Please note that doctors and health officials have no explanation for why this boy is like this. We now have a million children with some degree of autism and no one in charge can tell us why. And no one really cares. Neither the American Academy of Pediatrics nor the Centers for Disease Control and Prevention has ever called autism A CRISIS. Something is causing a generation of children to be sick and disabled and no one in charge gives a damn. They can't even give us the current numbers. The rate of one in 110 comes from studies of eight year olds back in 2006--kids born in 1998. That's how much they care about autism.
Posted by: Anne McElroy Dachel | June 23, 2011 at 10:17 AM
All the way through the video--I kept wondering if he can see Dr. Krigsman. Simply heartbreaking.
Maurine
Posted by: Maurine Meleck | June 23, 2011 at 09:30 AM
I don't know what to say except our medical community is failing these children in every way they possibly can. What the hell ever happened to "first do no harm". Not only are they doing harm, once a child is damaged, they are then saying, "Not only can't I fix this, I'm not even going to pretend to try."
We have 2 sons with high functioning autism, and except for some minor social impairment and minor sensory problems we have a normal life (well except for the part where I can't send my son to public school because I live in West Virginia which won't allow philosophical vaccine exemption and now won't even take my son's medical exemption).
A few weeks ago, we fostered a 17 year old young man with severe, non-verbal autism. That was my glimpse into the other side of autism. He was only with us for 3 days (because it was only a temporary placement so his mother could have a minor surgery done). Those were probably the three longest days of my life. He was a sweet boy, when he wasn't head banging or pacing. I cannot imagine doing that type of care day in and day out. My heart grieves for these families.
Posted by: Kim Davis | June 23, 2011 at 09:04 AM
Katie asks: "How is it possible that helping these children is such a low priority at the NIH and among the autism research community?"
Answer: Because the solutions and helpful treatments would implicate and stigmatize the holy grail of medicine - vaccines.
It really is that simple imho.
Posted by: Parent | June 23, 2011 at 08:50 AM
I cannot even watch the video. Thank you to the family and thank you Katie for saying what needs to be said. When is the next round of research determined/awarded? Is there any way to limit psychiatric research and shift toward non-genetic, biological research? Can we get our hands on the actual criteria they use for determining grant awards?
Posted by: mlinn | June 23, 2011 at 08:50 AM
THANK YOU, Katie. And thank you, AofA, for posting this here. I have no words...just thank you.
Posted by: Donna L. | June 23, 2011 at 08:26 AM
What a handsome boy. So much potential lost simply because no one in a position to help cares. You can tell as he shuffles around the room that he's there; that he's trying to 'get out' and into the world. How can doctors miss that? How can they not care? I really have no words. I only have prayers that this family finds an answer, that this handsome boy finds peace and comfort and a way to live in his body happily. God bless him and his family.
Posted by: Concerned Mom | June 23, 2011 at 08:16 AM
Katie, thanks for your well-expressed outrage. As parents dealing with a terrible affliction we are looking for everything we can find on what is known about autism, and the specific issues that are most troubling. In our case it was language development. My second son did have "multi-organ" intestinal and especially respiratory problems, which he eventually outgrew.
Academic researchers must gather "new empirical evidence" for publication to promote their careers. As parents we often come across evidence published decades ago that remains relevant to understanding autism and language development. In reviewing the literature of the past it is clear that autism has many causes. All causes must affect a "common final pathway" in the brain that prevents normal development of language and social awareness.
Phenylketonuria (PKU) was probably the first genetic disorder associated with autism. Most genetic disorders are likely to affect the "common pathway" in the brain required for language development, but genetic anomalies clearly are not responsible for the increasing prevalence of autism.
Parents need to demand that the vaccine schedule be changed. Hep B vaccination in the neonatal nursery must be stopped. Synthetic vitamin K injections had to be stopped in 1961. See the series of articles on errors in neonatology by AF Robertson (J Perinatol. 2003 Jan;23[1]:48-55, Mar;23[2]:154-61, Apr-May;23[3]:240-9)online at:
http://www.nature.com/jp/journal/v23/n1/full/7210842a.html
http://www.nature.com/jp/journal/v23/n2/full/7210843a.html
http://www.nature.com/jp/journal/v23/n3/full/7210873a.html
We also need to demand that all obstetric interventions be investigated. The worst is use of a clamp on the umbilical cord before a baby is breathing. Too many medical innovations are proudly promoted without adequate investigation of possible harm.
Posted by: Eileen Nicole Simon | June 23, 2011 at 08:16 AM
My daughter's eyes "pupils looked just like that when she had her psychotic episode.
I googled bipolar pupils eyes or something and there they were.
I have not been able to see it since.
I wonder if he has had any blood test for his SED rates?
Esp during the times of self abuse or when those eyes are weird looking?
Posted by: Benedetta | June 23, 2011 at 06:47 AM