You’ve probably seen the story floating around in your newsfeed about the 13-year-old boy with autism who, in the midst of a mental health crisis, was shot as he ran away by the police who had been called in to help.
My post today isn’t about the actual incident (which is ridiculous) but rather comments I’ve been reading from people about “Why would the mother call 911?”
Even people in the autism community are perplexed as to why a parent would call 911 on their own child, particularly one who is relatively young. Today’s comment: Why call 911 when nothing illegal was happening?
You call 911 when you need help and intervention.
You call 911 when your safety is at risk.
You call 911 as a last resort.
The fact that people don’t get how violent autism/PANS/PANDAS can be for some kids, firstly, pisses me the fuck off. Because I know many of us parents have been screaming about this for years. The kids get aggressive and violent not because they want to but because they are in such a state of dysregulation and their brains are so inflamed that they have no other tools to deal.
Cognitive Behavioral Therapy is great if you have functional communication and, you know, “regular” cognitive abilities and time. For the nonverbal kid with autism going thru puberty it’s not an option.
So you learn to manage as best you can—tweaking the diet, adding in supplements, trying some prescriptions if your current doctor is willing to prescribe, learning how to manage the violence and aggression in a way that contains it and keeps everyone safe. And then you don’t talk about it because you are isolated and ashamed and tired.
I’ve shared before about my son Spencer’s struggles with PANS and aggression. It started with the start of puberty. Testosterone is the kerosene to everything that is already on fire in the body. We pleaded with his primary care doctor to prescribe some things that might help. We asked for an appointment at the end of the day because we weren’t sure how Spencer would or could handle waiting in the waiting room with other people. They said we should try to make an appointment with a psychiatrist then. We were literally in a crisis situation in that moment asking for help, and they told us to get a psychiatrist (for a kid who couldn’t communicate with another person).
At that point my options were: continue to deal with it ourselves or call 911 which would likely lead to inpatient admittance. Failed once again by a medical system that is paid huge amounts of money to provide service to me but does anything but.
And for those who do not know, PANS/PANDAS happens very quickly. You can go from having the most docile and compliant kid to having a raging and destructive maniac the next. There is no warning. That’s pretty much the definition of crisis.
Many kids are connected to different therapies like behavioral therapy, speech therapy, occupational therapy and school-based services. They are discharged from such therapies if they are aggressive. So even with those specific avenues of assistance, they are unwilling or unable to help when things start to go sideways.
And for the kids on the moderate to significantly affected spectrum, a lot of psych units won’t even admit because they can’t “participate” in therapies. So they are sedated at the ER until they calm down and discharged back home.
To close the loop for you, Spencer is in a great place now. Intensive treatment for Lyme, discovering he also has hemochromatosis and managing that, continuing with clean diet, lowering the complexity of his world, building better brain connections thru Dr. Amy Spoelstra’s FOCUS program, etc.
When you live your life as a parent in such a state of stress and hypervigilance, your body and your brain break. You just can’t anymore. And sometimes there’s a perfect storm of everyone being broken at the same time. So someone calls 911 to deal with the person who needs extra assistance to remain safe. But in this case that person got shot by the people who were called to help.
So much in our systems of care and support can be reworked and made so much better. And we can do this without defunding one entity to create another.
Instead of asking “Why did the mom call 911?,” which is mom-shaming BTW, your question should be “Why are there no other options for that family?”
~ Raven
Amy Yardley and her partner Dr. Amy Spoelstra have teamed up to help parents of children with autism, ADHD, sensory processing disorders, learning disabilities, and behavioral challenges Navigate Your Healing. They are your virtual GPS to help you navigate the complicated and overwhelming world of neuro-behavioral challenges. They provide a roadmap of foundational strategies, including nutrition education, brain –body movements, and stress reduction action steps that you can do in your home TODAY to help your child.
For more by Raven, click here.
Raven image courtesy of Victor Habbick at FreeDigitalPhotos.net.
My first thought was “Sky Walker.” Tragedies both.
https://www.ageofautism.com/2009/02/18-year-oid-with-autism-faces-murder-charges.html
https://adventuresinautism.blogspot.com/2009/12/story-of-trudy-steuernagel-and-her.html
You call 911 when someone is hurt and you need help. A child with autism having a violent meltdown is in severe pain. This needs be conveyed to the 911 operator and first responders. Deadly force is not needed. If responders are informed and have been trained to handle those with autism, things should be less traumatic. We as a society need to stop judging why the person is acting this way, why did the Mom call 911, why did the responders shoot a weapon? People who ask these questions or report these incidents are not informed about autism and how it affects everyone. Education is key at a very young age and training is essential for all educators, health workers, law enforcement and the public.
WELL DONE! We too know exactly how you feel and think. My son grew to over 240lbs at 13 and I, Dad was maybe 150 with a walker from back injury when my son started stalking us in the house. I said to my wife WTH do we do. We called 911 and that began setting the scene of them looking at us as if we had some terrible disobedient child on our hands. Sheesh! Really long story short – my son took our mini bus and crashed it and the cops took him to the hospital for “treatment” even though he was not hurt. Then the “psychiatrist” threatened us with CPS for our other children if we dared try to bring him home. After a week of being tied to a hospital bed waiting for a bed at the State hospital we went on the offensive – contacted admin and got him released the next day. We learned causes real fast and slowed his aggression now to a point where it is virtually non-existent. You are correct – there is nothing out there for parents in a situation like that in the medical nausea system except networking with other parents. Police NEED an course on handling these children. FAST!
What did you find were the causes for your son? If they were dietary I would love for you to do a guest blog for Moms Across America!
We KNOW the cause initially as a baby was his MMR but it was not as severe a reaction to warrant any return to the Dr. Then at age 10 or so he had 10 cavities filled w/amalgam fillings. (the tooth rot from baby to then is attributable to toxins from vax plus bad diet). Within a year of fillings he went completely insane and gained over 100 lbs. We were pulling our hair out as to what was happening. After burying my head into why, I initially found Dr. Hoffer and got him on high dose niacin and this really was the first help to stop the violence (he came at me with a butcher knife on a full moon at midnight after crawling on the floor like a lizard – yup – you wanna talk about a nightmare… Anyway we slowly got him completely off of Gluten and then off dairy about 6 mos. later. Still not knowing the cause (toxicity). He developed constipation and we battled with that for years. I finally put my foot down and got my other sons and wife and we forcefully administered his first enema at 19 yrs old (he lost a lot of weight by then thru good real food dieting). After the enema we no longer had to force it b/c he felt so much better after. Back to the moon – my research found the parasite connection and I administered all protocols to myself first – to know how they worked. I found pounds of parasites came out of me and knew in an instant that was what grew in him over the years to a systemic state of toxicity along with the mercury in the vax and fillings. (confirmed via muscle testing). He lost his speech along the way and he lost his ability to take pills but is calm now. He is not cooperative enough to do a full parasite elimination protocol but recently we have found suppositories to be THE MOST effective treatment since most anything going through the stomach is destroyed before it gets to where it is needed since the stomachs of these kids are toxic. I have administered last week a suppository called Glytamins which has EDTA (metals puller) and Glutathione (brain help) once per day and on the 4th day after his enema we FINALLY got out some large helminth parasites in his stool. This week I have received probiotic suppositories and will keep you posted. I apologize for the long post and yes I would love to share my/our experiences to help other children where ever God so asks me. Peace, Jim I can be reached at [email protected]
To date, I read that the child was recovering from the inflicted gunshots. This commentary used “shot and killed”. I am praying this isn’t the case; can you clarify?
Sorry, Becky. That was my fault. Amy’s post was originally intended for her Facebook page. I added the context to the paragraph. I thought I had read that he was killed.
You are correct.