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Living with Autism

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November 10, 2015

What Parents of Autistic Children Often Encounter During Crisis

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Crazy things said and asked about our autistic child during a behavioral crisis in an ER or hospital setting:


ER doctor: “Doesn’t your autistic son always hit himself?”

Response:

No, he doesn't wake up everyday and hit himself. 

Self-injurious behavior is used to communicate something's wrong. When the self-abuse is mild to moderate, it’s behaviorally based. Maybe to escape something, but when he suddenly hits himself for hours, causing lacerations to his hands and biting pieces of skin off his fingers, presenting with facial grimacing, refusing to eat, screaming and crying, the severity of self-abuse tells us he’s in pain.  PAIN. You're a doctor. We're here to investigate source of pain. He can't talk. HE CAN"T TELL US where he's hurting. 

Until the unseen medical issue is diagnosed and promptly treated, the behavior will continue. When he’s properly and promptly medically diagnosed and treated, the behavior will return to baseline. 

Well meaning RN in ER room: “What do you normally do at home that would make him feel better?”

Response:

If what we 'normally did' at home made him feel better, we wouldn’t be here in the emergency room or have had to call 911. As if we didn't try everything before we called. This isn't an environmental issue. He's not upset he's not at home. He was upset at home. We're here because there's a medical issue causing extreme self-abuse. 

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Another nice RN who didn't understand autistic patients:
“Maybe he’s acting out in the ER room because he’s not at home. He’s in an unfamiliar place.” 

Response: Once again. For the 12th time. He was acting out AT home in his FAMILIAR place, and in his autism day program, another familiar settings.  It's irrelevant that he's acting out here at hospital. It's not an issue. Focus on treating what isn't being discovered while we're talking about whether or not he's not happy in the hospital setting. 

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After spending 5 hours trying to protect my son from smashing his head with his fists.

“Maybe he’s just having an autism flare," said a cordial, calm, middle-aged incoming physician's assistant.

Response: (As my adrenaline surges again. Heart races. Trying not to punch a wall, rip off my clothes and put myself on a 5150 hold). Calm face. Calm voice. ZEN. Excuse me? Is that like a gay flare? A diabetic flare? Doctor, I’m not sure what you mean. Breathe. Deeper. Deeper. Go to your happy place. 
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Another well meaning ER doc: “Have you tried antipsychotics?” Is he asking me? Yeah, sure please give me some opiates or something right NOW.....Glad you still have some humor left, Kim. Most people would've jumped off a bridge by now. 

Response: As calm as possible. "Doctor, as you know, or should know, Autism is not a mental illness. Nor is it a psychiatric disorder."

But yes, in good faith, we listened to well-meaning doctors and, in the past, have tried several antipsychotics. ALL failed. 

They caused extra-pyramidal side effects that increased self-injurious behavior and some triggered seizure activity. 

We wish there was a magic drug, but as of now, nothing has worked. 

Medical cannabis is looking more favorable at this point, though I didn't want to ever go there...

But even medical cannabis, like anti-psychotics, isn't a replacement for a proper medical diagnosis causing pain. 
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Snotty Emergency Room RN: “Don't you have medications at home to calm him down?”

Response: Depends what is wrong. Not so easy during a sudden behavioral meltdown rooted in pain when the person is NON VERBAL. For instance, in this current situation we tried, but he was biting himself, punching himself in the head and screaming for hours. He can't 'tell us what's wrong. IMAGINE being in pain or discomfort and you can't tell anyone where you are hurting. 

And you can't shove pills down someone who he won't swallow them during a behavioral meltdown. And forget an IM injection of Ativan, since Ativan is for seizures, not behavioral meltdowns and even if we had an IM injection of anything during an extreme meltdown, it would take up to 4 people to keep him still. The solution is to restore comfort. Get back to homeostasis. Baseline. His baseline is not sitting around punching himself all day unless there's something radically wrong, as in a headache, pinched nerve, gas, etc...

In past, we've tried to give an IM injection during a SIB meltdown rooted in pain, he was twisting and turning with such strength, the needle broke off in his arm. Not safe. Treat the underlying pain. Too many non verbal autistic people are overmedicated in the absence of a proper medical diagnosis and treatment. 

She still didn't get why we called 911. Didn't that explain why we called 911? Or would you prefer that we all lose our balance trying to protect him during a severe behavioral meltdown and fall through a window first? Then you can actually SEE us all bleeding. Would that be more acceptable to you? 

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A sweet RN in ER room: “Didn’t you say baths calm him down? Did you try and give him a bath at home to calm him down?”

Response: Yes, baths are calming for our autistic son during a mild to moderate behavioral crisis.

 Water therapy is an effective re-direction for many autistic people. However, it’s not always that simple.  

When a behavioral crisis reaches a certain level of severity, as in our autistic son twisting, turning, punching himself and arching his back while around a slippery surface, it’s dangerous to try to get him in and out of a bath or hot tub with only a few people to help. 

You need at least 3 people in a situation like this. Imagine yourself here in the ER dealing with someone on PCP alone. Not that our son is on drugs, we don't want your mind to drift that direction, but I'm giving you an idea of how strong he is when he's in pain or discomfort. 

There's been times a bath has resolved a meltdown rooted in mild pain, but not when it's severe. When it's severe, you can't risk the bath setting. Very dangerous. You need a lot of staffing support when you're handling a naked, wet autistic person trying to punch themselves in the head in a small bathroom, next to a toilet and sink. Think about it. Safety of all first. You wouldn't expect less here in the ER, right? 

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A sarcastic doctor after my son was admitted to hospital post ER room visit: “Why didn't you bring him to his primary care doctor? Why did you call 911?” 

OMG, I  nearly lost it with this question. Seriously? We've tried that in past. She sent us straight to the ER. DUH...she couldn't even examine him. 

So.....excuse me while I explain this one to you as calm as possible.  

When was I supposed to make this primary care appointment? In the middle of a his behavioral crisis? Just step away? Leave him with the one other caregiver, sitting on the floor struggling to protect him from self-abuse? And how would we safely transport him? 


It is DANGEROUS for a non-medically equipped car, driven by a family member, to TRANSPORT a 5'8" autistic person with the strength of 3 grown men, punching himself in the head in the back of the car for a 35 minute drive to the primary care physician visit. Or try to transport while the one caregiver is struggling in back to protect my son. They could go through a window. 

And you want parents of autistic children, teens and adults to take them to an ER alone? Trying to get him safely into ER room. Check in. Wait. Another waiting room. DANGEROUS for all involved. Please. You have no idea.....how dangerous this is. Of course we called 911. The firemen have the ability to restrain and safely transport, especially if he suddenly had a seizure. This isn't Rain Man. Or the high functioning cases you're used to seeing on TV and in movies. I'm trying to educate you, but I'm not your charge nurse or teacher. Educate yourself. Google is your friend. Google severe autism. Autism self injurious behavior. Autism and epilepsy. 

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At a new hospital. In another county. A mental health care worker who thought an autism patient is the same as a psychiatric patient:

 Incoming mental health worker:

"Hi, I'm here to talk to your son, James." Me: Huh? What? Who are you? Woman, confused look on her face, "I'm from mental health. Doctor said your son was having mental health issues." Me: WTH? Confused mental health worker: "Can I ask James how he's feeling?" Me: No emotion. "Get out".

Mental case mental health worker: "I feel offended."

Me: I don't give a shit how YOU feel. This moment isn't about you. My son just took 25 hits to his head during a behavioral crisis. He's got lacerated hands. We're still waiting for wound care. My brain is fried. I haven't slept in 72 hours. Go get yourself  evaluated for narcissistic disorder. You didn't even take the time to see he's non-verbal. Or autistic. Leave. I have zero tolerance for your fragile ego issues and autism ignorance. Bye, as I go to help LVN who is struggling to protect my son from hitting himself while we wait for the doctor and the mental health whatever, offers NO help or assistance. Useless. BYE. 

On a more positive note: Happy when charge nurse came by and actually physically helped us. She was a rare gem. Love RNs like this!!!

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Another professional I can't remember who: “You've been caring for your son for so many years...Have you looked into residential care?"

 Response: Oh God help me...as if this is solution to the immediate problem we are here for. This is called "avoidance" in psychology.....a defense mechanism used by people who have no idea what to say or do. 

Asking about residential care? Are you out of your mind? But since you appear to be out to lunch...let me help you understand. Yes, we did. In fact, we did place him in an ICF-DDH (a type of residential placement) years ago.

The staff couldn’t keep him safe.

They left him in his room, behind a closed door (while one caregiver assigned to FIVE disabled teens, snoozed on a sofa in the living room) to punch himself so many times he suffered a fucking hematoma to his ear, which is now permanently disfigured.

He then required emergency surgery to repair the ear. While he was getting surgery to fix the hematoma, the group home administrator casually handed me a 30 day notice, which said: he “now needs 2:1 staffing.”

That was 2009. 6 long years ago.

Since then, I've been forced to request several administrative law hearings to get the basic 1:1 24 hr LVN nursing care my son requires to keep him safe at home and in the community.

As of November 2015, we’re still fighting for necessary 2:1 staffing during behavioral and medical emergencies.

(UPDATE: We FINALLY got the 2:1 staffing support at home, in May of this year, 2016, SEVEN YEARS after he left a group home that said HE NOW NEEDED 2:1 care.)

Thanks San Diego Regional Center "decision makers" for all the traumatizing years in between when you IGNORED this known need. Sad.

And FYI to anybody who doesn't know:

Residential care facilities that take autistic adults with behaviors aren’t staffed with nurses to meet medical needs and rarely provide 1:1 staffing support, and nursing facilities that take autistic persons with medical needs don’t have staff that know how to handle autistic adults with self-injurious behavior.

California has a major crisis going on.

 A major shortage of adequate residential care homes to care for autistic adults with behavioral AND medical issues.

It seems hardly anyone operating a group home or controlling the funds understands this minority autistic population. I'm still convinced it's all about money, not about safety or disability rights, despite the great work of many disability rights groups fighting 365 days a year. Every year. Attorneys who take the time to learn this system are rare.

 Crazy, considering research shows 30% of autistic adults have epilepsy.

Here's a good recent study that talks about medical issues in adults with autism:
http://aut.sagepub.com/content/early/2015/07/09/1362361315594798.abstract