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Laugh or Cry: Researchers Catch Up With Autism Parents 25 Years Later

You don't sayDecades ago, a mentor taught me a saying, "Don't punish progress." It's pretty hard not to scream and shake my fists, "You SHOULD have listened to Andrew Wakefield instead of running him out of town on a rail."  Don't punish progress.  If young autism parents are still paying any attention to biomedical symptoms, causes and treatments, let's hope they read Safeminds' post from Monday.

May 15, 2022

A Bidirectional Relationship Exists Between Internalizing Behaviors and Gastrointestinal Issues

Researchers at the University of Missouri have recently published a study that suggests a connection between gastrointestinal problems, anxiety and social withdrawal for some children with autism. While conducting their study, the authors analyzed parent reports of gastrointestinal issues and internalizing behaviors of 621 minors with autism. The research team used path models in a structural equation modeling framework to further investigate their data. After examining the parental reports, the researchers believed the best-fitting model for this brain/gut phenomenon was a bidirectional model where internalizing behaviors (e.g., withdrawn and anxious behaviors) were associated with gastrointestinal issues (e.g., constipation, diarrhea, nausea and stomach pain). Sadly, this cycle then repeats, causing an endless loop of suffering for children experiencing both GI problems and internalizing behaviors. Co-author Brad Fergson expounds on his team’s work, stating, “Stress signals from the brain can alter the release of neurotransmitters like serotonin and norepinephrine in the gut, which control gastrointestinal motility, or the movement of stool through the intestines.” He adds, “Stress also impacts the balance of bacteria living in the gut, called the microbiota, which can alter gastrointestinal functioning. The gut then sends signals back to the brain, and that can, in turn, lead to feelings of anxiety, depression and social withdrawal. The cycle then repeats, so novel treatments addressing signals from both the brain and the gut may provide the most benefit for some kids with gastrointestinal disorders and autism.” Ferguson is currently involved in a clinical trial to assess how stress-reducing medication affects gastrointestinal problems. 

Original Article

Original Study Abstract

Comments

Maurine Meleck

Bill-this will be my last comment. Somehow I thought your original comment was dismissing all of the rest of us.. I am not dismissing you or your children. Please don't dismiss how others feel. Go back and reread your first comment. Free speech always wins.
Maurine

Maurine Meleck

Dear Bill, If vaccines don't cause autism, then please explain why in 1980 1 in 10,000 in the US were diagnosed with autism and today it's 1 in 36-actually 1 in 14 boys in New Jersey, in addition. Something must be causing the increase and it's not older father nor is it better diagnosing. What is left?
It's MAURINE

It's fine to believe what you do, but don't try to be a guru by telling everyone else what to do with their sick children.

susan welch

Bill, I am at a loss to understand why you think you experience is the only one.

Many of us have a child in our family who reacted to multiple dose vaccines, then regressed and those children now have an autism diagnosis. I am sorry you have suffered but it does not help our cause to have someone dismiss our experience and treat us as ignorant.

Please stop assuming we are wrong just because our situation is different to yours.

Kate C

Dear Bill, My son (37 years old) has had all of the procedures you recommend, with no results. I wish finding the causes for the huge increase was easy, but I fear it is not.

Bill

Carolyn the issue with PECS is that it is a Trade-marked product and not based on natural communication like sign language. How ironic if people with autism are supposed to have sensory issues then why the Velcro pictures ect? Velcro annoys and causes itching to non-disabled people. Most doctors want to treat those with "autism" but the parents and the child behavior get in the way
of diagnosis and treatment and so many here at autism are against restraint and seclusion which is needed to protect the child and the doctor from harm so the child can be examined. There are plent oif discount full body MRI clinics use them!

Bill

Mrs Mareen Meleck or whatever your name is you have no idea who I am. Trying to tell me I do not know what it is like to have a child with autism. My a young adult, I have autism and I know the vaccine played little if any role in my issues. I have a condition called Neuro-fibromatosis a genetic nerve tumor disorder. I do not care if you claim to have a child with a rare vaccine reaction most cases of autism are not caused by that vaccine reaction. If you cared about your child then all you need is less than $1000 which is the cost after insurance and even Medicaid will pay most of the cost. This is to get a colonoscopy and EEG/ECG scan along with a full body MRI scan of you and or your child. This will help find the main cause of you or your child's mental and medical woes.

Jenny Allan

@ Bill "Stop wasting money on quacks and less effective therapies like DAN "doctors" gluten free diets, ABA therapy, PECS and many others and get your child diagnosed and treated for with what they really may have conditions like: Tuberous Sclerosis, Chrohn's, Ulcertaive colitis, and many other then treat it with surgery and medicine that is needed."

Ah where would we be without the 'Bills' in this world, putting it all to rights. So simple (NOT).
My grandson was a 'Wakefield babe', or more accurately a patient of Professor Walker-Smith and his Royal Free Team. ( Andrew Wakefield was researcher NOT a clinician).My grandson was not one of the 12 children in the infamous Lancet paper, but one of around 50 more children diagnosed and treated for 'The Syndrome'. Without going into details these medical interactions were a life saver. The 'Syndrome' included microscopic colitis. This was soon successfully 'rubbished' by Brian Deer and his corporate & political sponsors. The Lancet article was retracted and Dr Wakefield was dragged in front of the GMC alongside Professors Walker-Smith and Murch. All were found guilty but Professor Walker-Smith was completely exonerated on appeal. Professor Murch was permitted to keep his Medical Licence being junior to Prof W-S.

Andrew Wakefield, oppressed on all sides could not afford to take on the world and relocated in the US, eventually becoming a film director/producer including the film Vaxxed.
My grandson and all the others were effectively 'cast adrift' when the Royal Free clinic was disbanded, but not before he was prescribed a gluten and casein free diet. At that time these foods were expensive. The diet made such a difference to my grandson's behaviour . I really believe he was in constant pain before it. He was now able to be educated in a normal infant class.

The CF/GF diet, much maligned by corporate sponsored sources is easy and cheap to administer these days, and is even quite fashionable. Every food store has a shelf devoted to 'free from'. Contrary to what some unscrupulous medical writers and broadcasters try to promote, this diet does not deprive children of essential vitamins and nutrients. Meat, fish, fruit and vegetables are all permitted. For very young children soya milk substitute is fortified with calcium and vitamin D. It makes excellent milk puddings.

My grandson will be 30 this year. He has done well but still has frequent pain in his gut. He bears this with fortitude. I admire him tremendously.


Carolyn

Gosh Bill, you make everything seem so straightforward and simple. Mainstream Drs have generally been dismissive of parents concerns when it comes to the medical side of autism, and mostly still are. This research is just coming to light, and most will be unaware of it. Before you start doling out advice about quacks and therapies, realize that in the absence of mainstream physicians believing parents and actually running those tests and making those diagnoses which is a long shot, remember that when they hear the word autism they almost always send you on your way. Autism is a "behavioral" diagnosis and they don't believe parents and don't think there is anything to be done even if it has medical basis. Diets, therapies and PECS (why would anyone not want to provide a child with a method of communication? Seriously?) are something that parents are able to do thanks to the parents and organizations started by parents that are there to help. And if you are still referring to DAN! you must be really out of the loop. In a perfect world. doctors would look for the medical underpinnings first and treat what they find. And even then, that isn't fool proof or a cure all. There is room for many approaches , especially because everything doesn't work for everyone. The bigger issue at hand can often be that some believe that if you just do X Y Z that will cut to the chase and the problem is solved. If only things were that simple when it comes to autism...and if doctors in general believed that these kids deserve to have adequate medical care and that autism is treatable, not just a "difference".

Maurine Meleck

We don't want to say "Chill, Bill," but I'd be willing to bet my new bathing suit on the fact that Bill never raised a child with autism. Don't be demure if you concur.
Maurine

Benedetta

and still Jill we have Bill! LOL
Bill ;
36 years here! Holding up hand and waving at you.
It does have something to do with gluten.
Bernard Rimland was not guessing. He was talking to the big guys at the NIH back in the day, and they were telling him this; he bothered to share.

I did not know this, I took a long time to see it.
When I started on this journey it was to save my children. And in a turn of kindness - I saved myself as well. My son is off his seizure meds for two years now, has it been two years? I think so.

As for myself; I can eat a piece of bread and three days later I have burning pain in my hands and feet. It takes three days.

Is there more going on here? A brain injury that messes up the sequences of the vagal nerve, maybe Auto immunity; a sick immune system allergic to other things - yeah. But gluten is a good place to start.

Then there was that Scientific American article back in 200? 8 maybe.
A scientist had been working on the cholera vaccine for 20 years, and all he got for his troubles was a vaccine that created celiacs; Yeah, something about Zonulin, gluten protein, and some thing that stimulates the the zonulin: like a vaccine?

Then there was the 2005 Cleveland study of low carb, Atkins; or slow release carb diet, or the keto diet and it controlled seizures.. Seizures- epilepsy now what percentage of kids with autism has seizures. I don't remember, but it is pretty high amount.

Jill in MI

Heal the gut. No sh*t Sherlock! I know, I know - progress is good. But it's 2022, not 1986. Jeez Louise, this is like Autism 101.

Bill

First thing First, if a parent believes their child has gastrointestinal issues and behavioral problems with a neurological cause the child need a thorough physical exam. Then the child needs colonoscopy and a brain MRI. Ulcerative Colitis and Chronh's disease are common as many as 1 in 100 people. Multiple Sclerosis and Transverse Myelitis less common about 1 in 300 according to Mayo clinic. Other possibilities that are quite rare are Tuberous Sclerosis, Gardeners syndrome, which causes brain tumors and several adenomas in the colon that will become cancer before age 40. Think about what could cause both neurological symptoms like seizures and gastrointestinal symptoms like diarrhea and abdominal pain. Autoimmune disease like Chrohn's disease effecting the stomach and cancer syndromes that cause cancer in the stomach at young ages are rare than diseases I said above.
Stop wasting money on quacks and less effective therapies like DAN "doctors" gluten free diets, ABA therapy, PECS and many others and get your child diagnosed and treated for with what they really may have conditions like: Tuberous Sclerosis, Chrohn's, Ulcertaive colitis, and many other then treat it with surgery and medicine that is needed.

Maurine Meleck

I still have notebooks from the first NVIC INTERNATIONAL autism conference in October, 2000. It was 4 months after Joshua was diagnosed with autism. The connection between the gut and the brain was formulated way back then. And the vaccine/autism link was part of the discussion. Were it not for autism parents and autism doctors, no doctors today would be recommending to supplement with vitamin D3 nor would they be testing for B12 in the body. Still, to belittle the vaccine/autism link, other researchers have ignored the gut/brain link.
Maurine

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