Autism Behind Bars: Johnnie B. Goode
Johnnie,
I opened the prison ministry box, first time, and found my name on your file. I expected maybe a murderer or a drug dealer, not a transgendered Christian minister re-incarcerated for possession of a firearm. Anyway, you’ve been assigned to me, your volunteer pen pal.
I know that there are many ways to be a prisoner. I have a 25-year-old son, Ben, severely autistic. My experience as a single father and caregiver opened my heart to the pain of the least, the lost, and the lonely. I’ve learned that some of the “least” have what the world needs most: the gift, as Jean Vanier says, of leading us gently into the depths of our own hearts, there to find patience, acceptance, and love. After reading the letters in your file, I believe you have that gift.
There’s another connection, too. Last summer I helped found and facilitate AIM Ranch, a residential campus for young adults with autism. One of the campers, a 21-year-old nicknamed Zero, told me that he’d been in every mental hospital, juvenile detention facility, and group home in the vicinity of Dexter, Missouri. Zero’s dad, a professor of agronomy and plant pathology, wanted him to be a missionary, but that didn’t work out so well. In fact, with one important exception, almost everything Zero tried -- to get a driver’s license, sustain a friendship, get and hold a job – didn’t work out so well for him.
My first night on duty at AIM Ranch, I was working on my computer in the common area when Zero passed through on the way to the kitchen, dressed for bed.
“I’m gonna kill myself tonight,” he said. “Yep, tonight’s the night.”
“How are you going to do that, Zero? Rope, knife, gun, pills?”
“I’m gonna slow down my hawt until it stops.”
I could have called Shoal Creek and had him taken to the state hospital, but I’d seen the term astral projection in his email headers, and I had my doubts. “So you’re gonna stop your heart, leave your body, and come back a better person?”
“I’m not comin’ back.”
“Leave your feet sticking out the end of the bed,” I should have said. “Tomorrow morning I’ll tickle your toes. If they don’t twitch, I’ll call 911 and tell them to dump your body in the creek. We have another camper waiting for your bed.”
Zero survived the night, and so did I … but not without checking on him every few hours.
As the summer wore on I became intrigued by this smart, funny, engaging young adult who seemed to have so much going for him, but who couldn’t pull his life together or make anything go right for long. Why couldn’t he live independently? The camp supervisor summed it up: “There is only one reality,” she told him, “and you aren’t in it.” Zero’s tenure at AIM Ranch ended in chaos under threat of violence. He was taken into custody and is serving a sentence in a state-supervised ward.
My heart goes out to Zero. I’ve continued my research into autism and psychosis, and discovered that he and Ben have a lot in common: what Dr. Bernie Rimland, founder of the autism recovery movement, called “dyslogic.” Both Zero and Ben are challenged to think logically, plan for the future, control aggressive impulses, learn from their mistakes, and understand the consequences of their actions. And if Rimland’s associate, brain researcher William J. Walsh, is right, Ben and Zero share a similar biochemistry. I’ve also learned that there are many people like Zero in our jails, mental institutions, homeless shelters, and prisons. Where, under different circumstances, Ben could be too. And that’s why I’m writing to you, Johnnie. I hope to learn how better to help my son.
BTW – about Zero, the exception I mentioned? He’s a terrific salesman. At the Austin Rainbow Pride annual celebration, he outsold every other soft drink vendor five to one.
Johnnie, I don’t know you well yet, but it’s possible that you, I, and my son Ben and Zero are already connected in ways I don’t fully understand. If you’re interested, I’ll send you Bernard Rimland’s “lost” book, Dyslogic Syndrome, published two years after his death. Rimland points to ways that both autism and dsylogic can be treated by nutrients, supplements, and food to balance biochemistry and nurture growth toward a more mature brain. He believes that pharmaceuticals should be a last, not first, resort. It’s a fascinating read, full of hope.
I look forward to hearing from you again.
Yours in Christ,
Dan E. Burns
Dan E. Burns, Ph.D., is the father of a
25-year-old son on the autism spectrum and the author of Saving Ben: A Father’s Story of Autism.
Through his new dba, Appleseed Ventures, Dan empowers parents to organize
communities where their adult ASD children and friends can live, work, play,
and heal.
Aye, and I wonder about horses with cushings. Cushings is a disease of the endocrine system too.
"Diet Recommendations for Equine Cushing's and Cushing's Like-Syndrome, AKA Insulin Resistance"
https://www.foxdenequine.com/About/Articles/Diet-Recommendations-for-Equine-Cushing%E2%80%99s-and-Cush.aspx
and dogs -- plenty of them with endocrine problems now. AND CATS -- and now we see PIGS too. So not just Lab rats.
But humans cannot possibly have problems with the endocrine system.
Endocrine problems- AKA - hypothalamus damage.
Posted by: wondering too | June 18, 2013 at 02:16 PM
Wonder if combination of vitamins might help, similar to this situation?
http://www.healthwatcher.net/quackerywatch/Synergy/report-th.html
http://discovermagazine.com/2005/may/vitamin-cure
http://www.truehope.com/new/
Posted by: Wondering | June 17, 2013 at 11:52 PM
Lisa;
You may find this interesting. There is a biochemcal pathway in the hypothalamus that triggers inflammation.
Kawasakis my kids had was inflamaation.
They think they can give a horomone to cause this pathway to shut down.
http://www.scoop.it/t/amazing-science/p/4000882974/hypothalamus-may-hold-one-of-the-keys-to-aging
Posted by: Benedetta | June 17, 2013 at 10:39 PM
I suffered--and I mean suffered--from ASD and mental illness for many years. I had innumerable treatments, virtually all worthless. Now I have almost completely recovered from all "mental" symptoms, though I still have some neurological problems. What worked best for me was intensive sauna treatment, vitamins, thyroid, methyl folate and B12 and chelation (all types). I have to conclude that this extreme illness was a form of toxicity. The symptoms I had started very young and got worse in adolescence. I think the books of Abram Hoffer and Carl Pfeiffer are useful. You can also get help through the International Schizophrenia Foundation, based in Canada, which is holistically oriented. These are biological illnesses triggered by our environment and heavy metals in particular, I believe. I am not sure that everyone can be cured but I think a lot of people can be improved to at least a level of comfort.
Posted by: Lisa | June 17, 2013 at 08:31 PM
I totally agree with the logic theory. There is a genetic disorder called Prader Willi, where the hypothalamus is affected, causing problems with logic, appetite, etc. I did some Googling, and it appears that mercury and measles have affinity to the hypothalamus. Thus, my vote goes to the hypothalmus not working correctly as a core reason for such symptoms. I totally recommend all those who don't respond to autism biomed favorable, to get tested, and frankly, I think most should be tested that have issues in this area. Heck, they test for PKU, so why not?
Posted by: Heidi N | June 17, 2013 at 08:30 PM
The info from Ed Hanmer is interesting - I've had my identical s tested for some things - out of pocket -
So limited - the one test they were polar opposites - despite being genetically the same was the flight ir flight - the one with asd was off the charts for that while the nt one was normal. My asd kiddo has tons of trouble at birth trying to breathe - assume his nervous system was underdeveloped due to prematurity & never developed properly
Posted by: Diane | June 17, 2013 at 08:09 PM
How many prisoners would respond positively to nutritional supplementation, as per the research of Carl Pfeiffer, MD, PhD and William Walsh, PhD?
In our overpopulated society, too many people are considered throwaways. They stagnate in a medical stasis, while the gatekeepers to their care focus on outward behaviors rather than their biochemical origins.
Paul Offit's latest book bashing nutritional supplements benefits insurance companies that strangely would rather fund psych meds instead of vitamins, minerals and probiotics. What a waste of money, health and potential.
Posted by: nhokkanen | June 17, 2013 at 04:40 PM
Thanks Dan touches a lot of bases..
Angus
Posted by: IAngus Files | June 17, 2013 at 04:07 PM
People with autism are just not understood well enough. Worst is the lack of help and training for parents and caregivers and lack of support to carry on. The more severe individuals like my son need one on one and my son who is now 39 years old is getting the help he needs. Dan is so right in his thinking. Speaking of thinking, my son has an odd way of seeing his world. One part has to be not forgetting stores and businesses that close and, while he points out bridges, trees, sky, and roads being fixed or not, I wonder if he understands what is happening in his world that seems to consist of many bits and pieces. Medicines can complicate things too...do they really fix the perceptions of what he sees? Do they sabotage his true emotions? Are we too dependent on them?
Posted by: Martha Moyer | June 17, 2013 at 02:45 PM
Dear Jillba,
Many of us understand what you describe. If your son has an autism diagnosis, he may also have PANDAS or PANS. Many of the kids can have behaviors like this, OCD, tics and aggression. Much of these diagnoses are tied up to the immune system and infections. Is it possible your son has a history related to that?
Some are seeing infectious disease doctors, immunologists or specific Pandas doctors.
There is a list from the Saving Sammy website.
http://www.savingsammy.net/providers.php
Posted by: Teresa Conrick- To Jillba | June 17, 2013 at 01:02 PM
@ Vicky Hill: EXACTLY!
Posted by: Zed | June 17, 2013 at 12:07 PM
Thankyou for writing this. My community has been devastated and I doubt if one soul except me understands why.
Research papers fills volumes of science magazines on findings on what damages the hypothalamus of "RATS"
Research papers fill volumes of science literature on finding of what are the results of damage to the hypothalamus of "RATS".
And yet - silence from the government, federal agencies, pharamas.
While damage is being done to the hypothalamus of and the rats come out fat our first lady makes it her goal to teach children to eat healthy. The goal post have been moved on that one a long time a go.
Drugs have ruined our community. Parents lives are haunted by what they must have done as parents that was so wrong to raise a prison dwelling drug addict (well they did get those vaccines - didn't they).
Posted by: Benedetta | June 17, 2013 at 11:35 AM
There is a more critical issue than pharmaceuticals versus supplements at play here. Numerous studies show that at least 30% of adults with autism also have a mental illness. If this is approached from the psychiatry side, the professionals don't have expertise in dealing with the autism features. If this is approached from the autism side, the professionals don't have expertise in dealing with mental illness. And so these adults fall into the crack between mental health treatment and developmental disorder treatment.
Mental health treatment is not simply pills; it is also therapy. But the therapeutic approach normally used is ill-adapted for those with autism. On the other front, the typical long-term therapies used for autism are not appropriate for dealing with someone who is suicidal or acutely psychotic.
Instead of pointing fingers, we need to find ways for the two sides to work together, to learn from one another, so that people like Zero are not left in the lurch.
Posted by: Vicki Hill | June 17, 2013 at 08:05 AM
I sent a draft of “Johnnie B. Goode” to Ed Hammer, Ph.D. Clinical Professor of Pediatrics at Texas Tech, and he replied with some useful information. Ed studies brain development in children with autism and physical disabilities and provides interventions based on neuroplasticity, neurogenesis, and non-verbal communication.
Ed writes, “You need to consider brain growth and development when you speak of aggression and other automatic behaviors both in prison and in autism. The most primitive form of brain development is in the Autonomic Nervous System (ANS). That is the part of the brain that develops first and controls heart rate, breathing, digestion, and many other automatic behaviors. You don’t usually sit around and think about keeping your heart going (like Zero did), because we do not control the ANS. It is the brain that has a brain. One of the key parts of the ANS is the Sympathetic Nervous System and that is best known as the "fight or flight" system of survival responses. This system is where much of our aggression comes from. It is automatic and we can learn to calm that impulse which is lacking in most persons in prison and many individuals with ASD.
Another part of the ANS is the Parasympathetic Nervous System. That is the part of the ANS that clams us. This is where we learn to self-regulate automatic behaviors. It is also involved in sleep, brain repair, and thinking before doing. We switch from the Sympathetic to the Parasympathetic non-verbally. Breathing techniques work well. Thought stopping works well. Cognitive Behavior Therapy works well. Dialectical Behavior Therapy works well. Counseling and group therapy work well.
So, we have lots of proven methods to help people control aggression and impulsive behaviors. Prayer started out as a form of meditation and it works well when the person knows the benefits of prayer as a calming technique.”
Thanks, Ed.
Posted by: Dan E. Burns | June 17, 2013 at 07:58 AM
I am in a different prison as well. My 14 year old son with severe autism cannot control his impulses. If he is out in public, he runs towards babies and wants to tap or even slap them. I finally had the courage to take him to the YMCA with two therapists and he ran and tapped a baby. The mother was furious and went back to my son with baby in hand and yelled at him. My son thought it was hilarious and started kicking her while my therapists (and YMCA personnel) were asking her to back off. She still went to the police and reported the incident. The police were understanding and told her that the police do not throw children with autism in prison to keep them isolated from the public (apparently she demanded that he go to prison). The police officer told me that she had never heard of autism (my therapist told me she was foreign but had no idea what country she was from). Apparently there are people out there not familiar with autism. Anyway, I have yet to hear from the YMCA to see if my son is banned but I am not going to go back. Five years ago, my son was swimming, taking gymnastics, playing Miracle League, going to school. Now, at 14, he is home schooled and no longer doing community outings. His brother and I now also have our lives limited to activities outside the home. We have our own prison.
Posted by: Jillba | June 17, 2013 at 07:39 AM
Thanks for putting this in writing, Dan. I listened to your interview on @ autismone and came away thinking that the research he has done is critical and both his book and Rimland's "lost book" could really help folks understand the wide reaching effects on our society. It reminded me, also, of research I had read a few years back regarding vitamin D3 supplementation in a prison population and its positive affects on behavior, and I couldn't help but think, like a prison, schools could really benefit from families understanding these types of connections. What factors cross over families, schools, and prisons and can confound and render ineffective or inconsistant the benefits of even the most dedicated support system in each place? Environmental effects on biology.
Posted by: Jenny | June 17, 2013 at 07:35 AM