shooting of boy with autism

[kbutton]

https://www.washingtonpost.com/nation/2020/09/08/linden-cameron-utah-autistic-shooting/?fbclid=IwAR2YTgOXTIE5fmbJJHhV-AssMn4Du-FsvdKaKtth-rLQM9zGlThZzyGBmuk

Ugh. 

[PeterPan]

https://besafethemovie.com

And yeah, that's what I was told. If you call the cops, your ds could end up getting shot. It's not a joke. We might put blue lights on the white house, but I think sometimes the world doesn't care if some kids are dead.

And what does it mean when it's THAT HARD to get help? On the lists I hang out on, it's pretty regular with people saying they can't get mental health providers to help with their kids. 

https://www.amazon.com/Dangerous-Son-Liz-Garbus/dp/B07CVN4Z4D/ref=sr_1_1?dchild=1&keywords=dangerous+son&qid=1599617853&sr=8-1  This documentary was crushing, it haunts me.

[PeterPan]

11 minutes ago, happysmileylady said:

I can't read the article but I read a couple others about the situation.

The ones I read....I felt they were pretty short of details.  The one thing that stood out too me in the article I saw was that the mom was NOT in the house/room while the police were dealing with the child.  Which is not to blame her in any way, it's only that I wonder what part of the story I am missing that had her not present after the police arrived.  Did they request that she leave the room?   

 

Yes, I was told they would separate you. So if your dc is poor at processing language or his ability to communicate drops when stressed, you now have them dealing with someone who CANNOT communicate and you can do squat, jack, nothing about it.

 

[PeterPan]

Basically, I was told if we don't know what to do (and we as parents know the dc best and are in the best position to know what the dc needs), then neither will the cops. 

And I've been in that position where I just wanted SOMEONE to help and to know what to do. It was a real bootstraps thing for me, like suck it up, figure it out, when I realized if I don't know, neither will they when they come. 

That was why I ran genetics and stayed up every night looking for something, anything. I repeated it to my ds again today. People who hit people GO TO JAIL. That's what I tell him. I've been telling him for several years now. People who hit need medication. People who hit go to jail. Take medication, don't hit, don't make your mother sad and end up in jail. 

Not the way you want to live, sure. But, I don't know, it is what it is. We're walking into puberty right now and I'm having to keep a *very short leash*. Everything we got stable can get ugly super fast. That kid in the story is 13, so it's not rocket science. When you gab with people privately, that puberty time is when MANY people will say they first hospitalized their kids. 

[PeterPan]

1 minute ago, happysmileylady said:

kids who were throwing school desks/chairs, punching/hitting/kicking other kids, etc.

I was told in our district the rest of the kids leave the room and they let the kid throw things till he calms down. 

Yeah, that mom seemed to be living in De Nial.

It's real hard. When that kind of behavior is occurring, it creates trauma in the parent that has its own consequences. So the parent is dealing with their own trauma *and* trying to figure out how to help their dc.

[matrips]

I read that story earlier today.  Along with the one in Rochester with the naked man spitting on cops and shouting that he had covid. That was back in March when Covid was super scary as an unknown.

I wouldn’t think police are trained to properly deal with mental health issues, and therefore shouldn’t be called. Some departments give police just 6 weeks of training.  Some give a few months. But don’t many in that field have a doctorate degree or many years of study?  It does lead to the issue that mental health help is needed.  And some situations do turn violent if someone is going through a crisis. So who do you call?  Who answers and go to a house?  Would they be safe?  

[Ausmumof3]

This is probably a dumb question but would it be possible to set up or maybe does there already exist some kind of police unit that’s designated for mental health care that gets higher quality training for dealing with these diagnosis.  Even if each station had one or two officers with that higher level of training and they were dispatched by default to manage any mental health situation that arose?

[matrips]

13 minutes ago, Ausmumof3 said:

This is probably a dumb question but would it be possible to set up or maybe does there already exist some kind of police unit that’s designated for mental health care that gets higher quality training for dealing with these diagnosis.  Even if each station had one or two officers with that higher level of training and they were dispatched by default to manage any mental health situation that arose?

With money disappearing from police budgets across so many cities, I can’t see that happening. It would cost more money.  

I happened to catch a piece of Geraldo’s 50 years in journalism and that overcrowded abusive school for the mentally ill in NY was one of his first stories. It doesn’t seem like much has improved since then on how to handle them.  I’d love to see more research done on the brain.

eta- this may be very simplistic and naive, but when mynkids were going through OT and exercise for retained reflexes, I often wondered how many others out there with violent tendencies or adhd or other issues would have benefitted from early intervention.  It’s not the cure all, but I believe it could help many. 

Edited September 9, 2020 by matrips

[Tree Frog]

41 minutes ago, Medicmom2.0 said:

The stories I read indicated the mother was not home. It was her first day back at work and the son was having severe anxiety.

This article says she called about 10 pm. When police arrived, she told them he was unarmed. They told her to wait outside. 😞

 

[PeterPan]

24 minutes ago, Ausmumof3 said:

This is probably a dumb question but would it be possible to set up or maybe does there already exist some kind of police unit that’s designated for mental health care that gets higher quality training for dealing with these diagnosis.  Even if each station had one or two officers with that higher level of training and they were dispatched by default to manage any mental health situation that arose?

We have officers trained here, and the Be Safe The Movie that I linked has an officer training program. It IS happening, but it needs to be more widespread.

10 minutes ago, wilrunner2 said:

This article says she called about 10 pm. When police arrived, she told them he was unarmed. They told her to wait outside. 😞

 

Again, the problem is no one told her this would happen. She had no clue when she called them, and her doc, county board, nobody TOLD her. Or maybe they did and she forgot. But I'm just saying, nobody told me until after we had issues and I started asking. They were like be thankful you didn't, because that IS what happens. Known gig.  It's not like they violated protocol. That is what will happen. They can't tell who the problem is and who is feeding what. Sometimes the kid is pissed and being aggressive toward the person who is MOST helpful to them. So the cops will separate everyone.

Fwiw, walking away (assuming the dc is not in physical danger) IS an option. Give space, walk away. Some of our problems have been when people *wouldn't* give my ds space. Sometimes I'll also call in a trusted person and see if they can use their fresh, positive energy to get some medication into him. So having enough access to mental health care that you HAVE a medication dose like that (something that will zonk them or tone it down immediately) helps. 

Where was the school system for this child? The mom is back at work, but what is his school doing to get him services and continuity and stability? This is what is so immoral about the way schools (open, tele, etc.) have done. There are kids who DESPERATELY need the stability of placements, in person care. So let's make sure we throw some shade the direction of the school system there while we're at it or ask why he didn't have that care.

[PeterPan]

29 minutes ago, matrips said:

OT and exercise for retained reflexes, I often wondered how many others out there with violent tendencies or adhd or other issues would have benefitted from early intervention.  It’s not the cure all, but I believe it could help many. 

It's an interesting question, sigh. And the retained reflexes hold back the *language* which then affects their ability to communicate, problem solve, and self advocate in the moment. 

Ultimately, I think the majority of it is a sad convergence of genetically driven chemical instability, social thinking deficits, and language/communication problems. You get the three together and it's UGLY. And actually, I read some studies on sociopaths and what the profiles were. I think that's the term I was googling. Anyways, it was occurring at the convergence of social thinking disability plus language disability plus tendency to aggression plus high IQ. That convergence, where the language issues make EVERYTHING so much harder was the lynch pin. Harder to work, harder to understand, harder to self-advocate, harder to communicate when you're having big emotions. and the social thinking deficits drive misattribution and misperceptions and poor problem solving. And the chemistry makes them unstable. 

It's why, for me, I decided I was all in on language. It seems to be the only thing, besides keeping his chemistry stable, that has logic that it will help. My theory was to pull one brick out from that tower and see if I could make it collapse a bit, maybe into a puddle. So EVERYTHING is about language here. If it means short shrifting math, history, anything else, we're all in on language.

It's a really negative thing to do to him btw, working dominantly on his disability. It would be more positive/fun/uplifting to do I don't know, something else. But based on my data, those are the only two things I think I can reasonably do to keep my ds out of prison, out of harm, and on a good path--build language and stabilize brain chemistry. And for me, with language, I'm throwing in social/emotional language, because for him that is part of language. Narrative language. Syntax, all of it. 

Edited September 9, 2020 by PeterPan

[sassenach]

56 minutes ago, Medicmom2.0 said:

The politically incorrect truth is that nobody wants to deal with violent, mentally ill people, and we don’t have any good system to do so. Police are not trained for it. EMS are not trained for it. Social workers didn’t sign up to be physically assaulted. ER nurses are pressing assault charges against mentally ill patients who hit them. Many times there is a substance abuse component as well like the guy in Rochester; I’ve seen it take six cops and three paramedics and a lot of sedatives to safely sedate a guy on PCP so we could transport him to the hospital and stop him from running into traffic on a busy road.

They wind up in prison Mental Health Unit or spend their lives heavily sedated in a state psychiatric facility. But we closed so many of those that they get discharged and eventually overdose on heroin under a bridge. I work in an area with a state psychiatric facility and two prisons.  I see this every day.  For the people who are developmentally disables and violent or severely mentally ill, we have no good care systems.

I'm doing clinicals at our county psych unit and when a patient gets out of control, the solution is to call the onsite deputies in to physically subdue them. All this defund talk and yet even in the hospitals, police are expected to be the last line of defense. 

[MercyA]

Awesome John Oliver show on what "defunding the police" really means:

https://www.youtube.com/watch?v=Wf4cea5oObY

(Warning, language.)

He explains that the police have been responsible for way too much, including things like mental health crises, and they should not be sent into situations that do not involve crime and where guns and force are not appropriate. We need separate public health and safety departments. People are not advocating doing away with the police, but starting over and narrowing the focus of what police actually should be doing, which I am all for.

[kiwik]

2 hours ago, matrips said:

I read that story earlier today.  Along with the one in Rochester with the naked man spitting on cops and shouting that he had covid. That was back in March when Covid was super scary as an unknown.

I wouldn’t think police are trained to properly deal with mental health issues, and therefore shouldn’t be called. Some departments give police just 6 weeks of training.  Some give a few months. But don’t many in that field have a doctorate degree or many years of study?  It does lead to the issue that mental health help is needed.  And some situations do turn violent if someone is going through a crisis. So who do you call?  Who answers and go to a house?  Would they be safe?  

6 weeks training on mental health issues or 6 weeks total?  If the latter the shootings lately make more sense.

[Innisfree]

6 minutes ago, kand said:

 

I really wish the phrase "defund the police" wasn't the one that got the most traction, since it sounds like it means something different from what was intended, and I think it has caused a lot of distraction when I think more people would agree about this than they think. I think people on "both sides" would largely agree that it's worth having some money previously designated for policing go to an agency set up to deal with people in mental health crises, so that is no longer falling on the police. They aren't well suited for it, but it's a huge issue and we need a better system to handle it.

Yes! This.

But also

2 hours ago, matrips said:

I wouldn’t think police are trained to properly deal with mental health issues, and therefore shouldn’t be called. Some departments give police just 6 weeks of training.  Some give a few months. But don’t many in that field have a doctorate degree or many years of study?  It does lead to the issue that mental health help is needed.  And some situations do turn violent if someone is going through a crisis. So who do you call?  Who answers and go to a house?  Would they be safe?  

Regarding this: I completely agree with funding a mental health unit to respond to situations where mental health is known to be at the root of what's happening.

But also, I think we need to recognize that probably the vast majority of the situations police face have mental health issues at the base. Undiagnosed, untreated, everything from executive function issues, adhd type impulse control issues, lack of emotional regulation, to actual mental illness. So expecting the police to be trained in de-escalation techniques is hardly unreasonable. Yes, it costs more. I would be happy to pay more if it meant tragedies like this were avoided.

1 hour ago, PeterPan said:

Fwiw, walking away (assuming the dc is not in physical danger) IS an option. Give space, walk away.

Walking away is an outstanding way to manage some situations. Bt, dt.

 

[gardenmom5]

4 hours ago, matrips said:

 

I wouldn’t think police are trained to properly deal with mental health issues, 

IME - there are MEDICAL personal whose ***Specialty*** is mental health who don't know what the bleep bleep they're doing with kids with mental health issues!

What calms one - antagonizes another.

[Laura Corin]

The below is an outdoor incident where actual harm was threatened by an adult, so different from this case, but it does show that de-escalation is possible.  The UK police actions have been very variable, particularly where Black members of the public are involved, but this time they got it (mostly) right:

 

[Ottakee]

This is all so sad.   I work with special needs young adults.  I parent special needs young adults.   My friends parent special needs young adults.

The availability of mental health services stinks.   Parents sit in ER for days just trying to get an evaluation, let alone hospitalization.   It can take months to over a year just to get in to a psychiatrist.

Many more pediatric and adult psychiatrists are needed.  If we could access first line services easily then maybe we could avoid some of these situations.

Then we need well trained police and mental health crisis teams that can come on and then actually access services, not just get to a hospital, sedate and discharge with no change in treatment plan.

The mentally ill and special needs are far down on the priority list.

[Teaching3bears]

Maybe police officers should not be dealing with children? Maybe not individuals with developmental disabilities either?

Training is good but is it enough? Can we expect every person to have all skills? Someone might be an excellent musician but will ever be an excellent writer even with training and vice versa?

To be a police officer you need a lot of physical strength to be able to chase and tackle criminals but does everyone with that kind of "brawn" also have the "brains" to deal with other situations? I have met police officers with excellent people skills but I read so many articles where the police officers just seem to be missing so much up there. Or maybe they are just stuck in the mode of "I have to get this guy no matter what".

[EmilyGF]

58 minutes ago, Medicmom2.0 said:

 

I follow a FB page of a family with a severely ID and autistic son with very violent and self injurious behaviors.  They had to search for years for a placement that would take him, as most group homes refuse anyone with a history of violent behaviors.  It is a very very real problem, and our failure to have safe places for mentally ill people to live and get treatment is just one of many systemic failures.

 

Yes, this was my friend's situation. They have a very violent, 200+ lb 6'+ autistic son who likes to run into the street and has literally torn apart all their furniture as well as attacked his mother and siblings. They were on the "emergency" waiting list for a few years before they finally found a group home that would take him. But it literally takes multiple grown men to care for him when he is upset, which could be for anything. He's been in the group home now for two years. His mother is now finishing up a master's in special education. So because he is in a group home, she can work for the first time in twenty years. They never contemplated moving out of state (maybe because he had torn up their house to much to sell?), but I would have.

But the emergency list for multiple years? That's ridiculous.

Emily

[TCB]

1 hour ago, Medicmom2.0 said:

Another issue I see is society’s lack of understanding about certain developmental disabilities and severe mental illness.  When you think autism, you think Rain Man, not a 22 year old man who chases his mother around with a frying pan trying to hurt her, or someone who self injured and has dangerous meltdowns.  When you think Down Syndrome, you don’t think of the 25 year old man I had to treat recently who was on a trip to a pizza joint with his group home and freaked out and started throwing tables at patrons.  When you’re thinking of de-escalation techniques and mental illness, you might be thinking of the depressed person going to jump off a bridge that the police try to talk down, not a 54 year old in a psychotic break who is screaming incoherently as she walks naked down the street and spitting and biting and hitting anyone who tries to touch her. All of these are patients I’ve had in the last WEEK, and I’m only working part time.

But the video linked above shows that de-escalation and containment is possible. And when you contrast that video and result with the photo in a post above of the man lying on the street with his arms up, who still ended up getting shot, I think we need to consider our approach. 
I realize you, Medicmom, deal with way more difficult situations than we do in a hospital, but I have seen many situations even there where de-escalation was possible but instead a pretty aggressive tone was used right away. I work with some really great nurses, but they often seem to feel that they don’t need to put up with this BS and react accordingly. I agree that we shouldn’t have to also, but that approach has limited success. I have, at times, asked them jokingly if they have heard of the term de-escalate, and we all have a laugh, but I do think it has to be a mindset that we need to have to maybe be able to handle some of these things in a better way.

[sassenach]

8 hours ago, MercyA said:

Awesome John Oliver show on what "defunding the police" really means:

https://www.youtube.com/watch?v=Wf4cea5oObY

(Warning, language.)

He explains that the police have been responsible for way too much, including things like mental health crises, and they should not be sent into situations that do not involve crime and where guns and force are not appropriate. We need separate public health and safety departments. People are not advocating doing away with the police, but starting over and narrowing the focus of what police actually should be doing, which I am all for.

I think this sounds great in theory but in practice all that has happened is our special victims unit got shut down, including the social worker dedicated to working with sexual assault victims. So that’s how defunding is going around here. 
 

I think my point is that if even in the hospital, we are relying on police to handle situations that no one else is capable of, we have to recognize that there are elements to this that literally no one else can or will deal with. You’ve got a whole psych team trained in deescalation but if that doesn’t work, they call in the deputies. 
 

As for this situation, I agree that it shouldn’t have happened and we need to do something different. Special response units, more training, etc. I just don’t think we can pretend that there is this special group of people who will handle the most combative patients and not ever rely on the police (though I’m positive that the police wish those people existed). 

[sassenach]

21 minutes ago, Plum said:

This mother will never be able to call the police again. No matter what her son does, she won’t be able to bring herself to call the police for help and that is a huge deal. 

(((Hugs))) My best friend’s son has autism and is black. We’ve had this discussion many times. It’s just too risky. 

[PeterPan]

2 hours ago, EmilyGF said:

They were on the "emergency" waiting list for a few years

I've seen articles online of families who asked their loved one on the spectrum to be PUT IN JAIL, because everyone involved was safer that way. 

[SKL]

My cousin with autism is institutionalized because he suddenly beat up an old lady who was his good friend.  He has walked/run away from "school" a few times and had to be brought back by the cops.  It is so sad and scary.  But he is incredibly muscular (was since early childhood), and frankly dangerous.

[PeterPan]

20 minutes ago, Medicmom2.0 said:

Another consideration in this topic is that many of the meds people are put on for mental illness/emotional stability, including the developmental delay population such as autism, have weight gain as a side effect.  That is why many of this population are large people, which makes containment even more dangerous and difficult.

Definitely. And that it's hard to find recreational sports after a certain age. My ds got bullied out of his competitive sport. I've looked at getting him connected with Special Olympics, as they are pretty active around here. I'm not sure if he'll fit in with that but I was told he would. They have track, bowling, lifting, all kinds of stuff. I let the idea slide with coronamess but it's on my list of things to try.

The other thing though is that there does seem to be this profile of HUGE kids on the spectrum. And I think it's a variant, a type, not everyone. We'll see if the SPARK study sorts it out eventually. They're running genetics on people so doubtless they're trying to sift through these trends. But it's something people comment about, the BIG kids on the spectrum. They also talk about some who have unusually nice eye lashes, wide eye spacing. There are physical traits that go with some of the types. I've heard scientists are trying to work on those subtypes, but I'm guessing it's evolving with the ease of genetic testing.

[PeterPan]

Ok, I have a little aside to throw in about some of the real hard cases. I have an acquaintance friend who has one of those nonverbal, unpredictable, very large, level 3, never going to be independent dc. He's probably about to age out of his IEP at this point (approaching 21). She does a controversial approach with him (RPM) that is a form of facilitated communication.

There have been double blind studies now that show it not to be authentic, not to be coming from the dc. But to me, and this is just me, I DON'T THINK IT MATTERS.

She attains a level of love and interaction, of calm, that I think many people with challenging kids aspire to. She gives herself devotedly to this, burning herself like a candle. It's very hard to get that level of interaction for your dc. 

My ds EATS UP interaction and attention. Thrive on it. I think sometimes with these calls to the police, that's what they really wanted to have happen long before. And it's just the reality that it's almost seemingly impossible to make happen the consistent, high quality interaction at that level of support.

[wendyroo]

1 hour ago, PeterPan said:

I've seen articles online of families who asked their loved one on the spectrum to be PUT IN JAIL, because everyone involved was safer that way. 

This is where our team feels we are heading.

Right now DS is 9, and I can still barely restrain and move him as required...but it is just a matter of time until I can't.  He is a danger to all other family members, and will not be able to safely live here for more than a couple more years if this behavior continues.

Our team has told DH and I that we have to plan ahead for when things are getting too dangerous.  When we determine that stage is upon us, then our safety plan will change to calling the police each and every time DS assaults someone.  Currently, this would be 4-5 days a week, often multiple times a day.  Police will come, call EMS, and help get DS into the ambulance (in restraints if necessary) for transport to the ER at the children's hospital; this we have experienced twice.  Unlike the two previous times, however, we will decline in-patient mental health, because that made the situation worse both times (and is ghastly expensive).  According to our case worker, eventually the police will "get annoyed" with the daily rigmarole and will ask the court to send him to juvenile detention...but first they have to do a competency hearing, and if he isn't deemed competent, then he cannot be held responsible for any behavior (unlawful or assaultive) and we are on our own.

[SKL]

I agree that we should have a highly trained group of officers (or whatever you want to call them) who can deal with these individuals appropriately.  They need to be calm, intelligent, highly educated, big and strong, highly trained in various physical management tools, with excellent problem solving skills in a crisis.

How many people do you know who have those qualities AND want that incredibly thankless job?  That is the problem IMO.

I also want to send a shout-out for the millions of times bad situations were solved without unnecessarily hurting anyone.  The times that don't make the news because things handled right never do.

[fairfarmhand]

Just now, SKL said:

I agree that we should have a highly trained group of officers (or whatever you want to call them) who can deal with these individuals appropriately.  They need to be calm, intelligent, highly educated, big and strong, highly trained in various physical management tools, with excellent problem solving skills in a crisis.

How many people do you know who have those qualities AND want that incredibly thankless job?  That is the problem IMO.

I also want to send a shout-out for the millions of times bad situations were solved without unnecessarily hurting anyone.  The times that don't make the news because things handled right never do.

Yes, and I live rurally. So it seems that each and every police/sheriff's department would need at least one, more likely 2-3 of these officers? That's going to be like finding unicorns. 

[SKL]

While I am sure the linked article leaves out some information, I wonder why the mom felt the need to dial 911 over screaming and yelling?  I have a child with some mental health issues, and she's had episodes of yelling (and screaming when younger) and having zero sense.  Even if an episode had me thinking "we need outside intervention," I'd wait until the episode was well over and deal with it when everyone was calm.  That said, I suspect this was really about more than "screaming and yelling."  And on that note, a mom telling the cops that her kid does not have a weapon does not prove anything.  Parents don't always know that their kids are in possession of weapons.

[freesia]

3 minutes ago, Medicmom2.0 said:

At least one on every shift.

I could see a police officer/social worker team to handle mental health calls.  But then you run into the fact that finding a social worker who wants this kind of job is a unicorn too.  Because social work pays such crap that I actually make more as a paramedic than I did as a social worker, and EMS doesn’t pay well either.  
It takes money and no one wants to appropriately fund mental health programs.  Like severe autism, we want to pretend that severe mental illness doesn’t exist.  There is nothing cute or pretty about it; it doesn’t make good TV shows or feel good news stories.  

I agree.  I also wonder how we solve the problem that there would be enough social workers trained and willing to do this all over the US--particularly as there are places which don't even have enough counselors/psychiatrists.  Where are the people and the money going to come from?  I think better training for the police and EMTs is more realistic.

And let's be honest here, I think the mother called the police because she was scared for her safety.  I have scars from being attacked by a nine year old with autism who attacked suddenly and without provocation.  There was no chance to descalate anything.  If one of the adult size men had attacked me, I would have been hurt far worse.  When I was working in a school for autistic individuals, there had to be an adult male in the room when I was with one of the clients.  The elephant in the room to me is that in order to keep family members safe from an adult sized person having a violent meltdown stronger people (and sometimes multiple people) are needed.  That's why the police are called because they are the strong people who can keep people safe. Now, I am NOT saying that shooting a 13 year old autistic boy who was unarmed is the right solution, but I am also unconvinced that some type of force isn't necessary to keep others safe or that more social workers is the solution.

[SKL]

12 minutes ago, Medicmom2.0 said:

At least one on every shift.

I could see a police officer/social worker team to handle mental health calls.  But then you run into the fact that finding a social worker who wants this kind of job is a unicorn too.  Because social work pays such crap that I actually make more as a paramedic than I did as a social worker, and EMS doesn’t pay well either.  
It takes money and no one wants to appropriately fund mental health programs.  Like severe autism, we want to pretend that severe mental illness doesn’t exist.  There is nothing cute or pretty about it; it doesn’t make good TV shows or feel good news stories.  

And honestly, even if you paid well into the six figures, how many truly qualified people would want that job?  Money is part of the issue, but I think it goes way beyond that.

[Ottakee]

37 minutes ago, wendyroo said:

This is where our team feels we are heading.

Right now DS is 9, and I can still barely restrain and move him as required...but it is just a matter of time until I can't.  He is a danger to all other family members, and will not be able to safely live here for more than a couple more years if this behavior continues.

Our team has told DH and I that we have to plan ahead for when things are getting too dangerous.  When we determine that stage is upon us, then our safety plan will change to calling the police each and every time DS assaults someone.  Currently, this would be 4-5 days a week, often multiple times a day.  Police will come, call EMS, and help get DS into the ambulance (in restraints if necessary) for transport to the ER at the children's hospital; this we have experienced twice.  Unlike the two previous times, however, we will decline in-patient mental health, because that made the situation worse both times (and is ghastly expensive).  According to our case worker, eventually the police will "get annoyed" with the daily rigmarole and will ask the court to send him to juvenile detention...but first they have to do a competency hearing, and if he isn't deemed competent, then he cannot be held responsible for any behavior (unlawful or assaultive) and we are on our own.

This is so sad....but the reality on many/most places.   These kids need mental health help, possibly a treatment facility, etc ...they don't need jail....but far to often that is the only choice.

[fairfarmhand]

4 minutes ago, SKL said:

And honestly, even if you paid well into the six figures, how many truly qualified people would want that job?  Money is part of the issue, but I think it goes way beyond that.

If you (general you, not you specifically SKL) have a person who needs mental health stuff, you find out exactly the abysmal state of psychiatric medicine in this country. Unless my loved one was in danger for her life or  was endangering someone else's life, the waiting list for a Psych doc was three to four months. Three to four months when this person was dealing with debilitating panic attacks and unable to work, drive, or go to school? AND WE HAVE FABULOUS INSURANCE.  And Psych docs do make decent money. There are just not enough of them! And we live within 3 hours of 3-4 major cities. I can't imagine how much worse it is for those who live in way more remote areas. 

I wonder why there are so few medical drs who go into psychiatric medicine?

[SounderChick]

It's all a mess.  I truly pray for all who of you have sons.   My sister has mental health issues and my parents had to call the police on her.  She was just as aggressive with the police as she was with my parents.  Luckily in the officers words she was just a little lady and no real threat.  Even though she injured someone badly enough they needed stitches. 

[PeterPan]

29 minutes ago, freesia said:

a nine year old with autism who attacked suddenly and without provocation.  There was no chance to descalate anything. 

Not to play too much devil's advocate, but I get this all the time with people saying ds has a short yellow zone and what it really was was that he was SO MUCH in yellow zone that they didn't recognize it and realize he was about to go red. Even where training in the zones and these antecedent behaviors is happening, still people don't recognize it. 

Someone had mentioned what could be done before, and interoception work, mindfulness, then zones/emotion training, to where people can SAY or SIGNAL what zone they're in and be part of the solution helps. We had this with my ds, where he was coming out of therapy sessions and we thought his behaviors were a problem with waiting. It took an entire year of working on it for him FINALLY to be able to say that the reason he couldn't use our "waiting" strategies was because they were green zones strategies and that he was coming out YELLOW, ready to blow! So we made yellow zone strategies, literally with two bags, green and yellow, so he could just choose which zone he was in. THAT finally got us breakthroughs, when HE could understand his own body and self-advocate and say he was yellow zone and needed to make choices that fit that. HUGE.

So whatever, not disagreeing. Just saying these best things are *new*. Kelly Mahler's Interoception materials are new on the market in the last 1-2 years, and they were a BIG PART in getting us that breakthrough. Many are trained on Zones and using them superficially, without building body awareness first. So then yeah, it turns into this big surprise. 

[Teaching3bears]

Sometimes the best solution to a problem is not a bandaid but treating a problem at its source.  I have 2 teenagers with severe autism.  Although sometimes their behavior seems violent, it is not really.  Sometimes they experience agitation and their gestures are bigger.  They experience a lot of gatrointestinal pain and discomfort.  This can cause more agitation.  But above all they experience an unimaginable amount of sensory discomfort/pain that they try to cope with every minute of every day.  They are not meaning to hurt anyone.  They have hearts of gold and are full of love.  They just don't have a lot of control over their bodies.  More than anything they want their pain and discomfort to be alleviated.  In my opinion, the root of the problem in many cases is gut dysbiosis (not enough good bacteria in the gut).

As a mom who has looked into a lot of things to help my sons, here is what gives me the most hope right now:

https://www.gofundme.com/f/microbiota-transplant-for-children-with-asd

Consider this if you want to help with this problem.

[Paige]

29 minutes ago, fairfarmhand said:

If you (general you, not you specifically SKL) have a person who needs mental health stuff, you find out exactly the abysmal state of psychiatric medicine in this country. Unless my loved one was in danger for her life or  was endangering someone else's life, the waiting list for a Psych doc was three to four months. Three to four months when this person was dealing with debilitating panic attacks and unable to work, drive, or go to school? AND WE HAVE FABULOUS INSURANCE.  And Psych docs do make decent money. There are just not enough of them! And we live within 3 hours of 3-4 major cities. I can't imagine how much worse it is for those who live in way more remote areas. 

I wonder why there are so few medical drs who go into psychiatric medicine?

It's a catch 22. If you are in an immediate emergency you can be hospitalized but if you have been hospitalized recently- or sometimes EVER- then many psych doctors don't want you as a patient. They have so many potential patients that they can only take easy cases if they feel like it and many do feel like it. 

[freesia]

11 minutes ago, PeterPan said:

Not to play too much devil's advocate, but I get this all the time with people saying ds has a short yellow zone and what it really was was that he was SO MUCH in yellow zone that they didn't recognize it and realize he was about to go red. Even where training in the zones and these antecedent behaviors is happening, still people don't recognize it. 

Someone had mentioned what could be done before, and interoception work, mindfulness, then zones/emotion training, to where people can SAY or SIGNAL what zone they're in and be part of the solution helps. We had this with my ds, where he was coming out of therapy sessions and we thought his behaviors were a problem with waiting. It took an entire year of working on it for him FINALLY to be able to say that the reason he couldn't use our "waiting" strategies was because they were green zones strategies and that he was coming out YELLOW, ready to blow! So we made yellow zone strategies, literally with two bags, green and yellow, so he could just choose which zone he was in. THAT finally got us breakthroughs, when HE could understand his own body and self-advocate and say he was yellow zone and needed to make choices that fit that. HUGE.

So whatever, not disagreeing. Just saying these best things are *new*. Kelly Mahler's Interoception materials are new on the market in the last 1-2 years, and they were a BIG PART in getting us that breakthrough. Many are trained on Zones and using them superficially, without building body awareness first. So then yeah, it turns into this big surprise. 

Oh, I agree with you and this was way back in the 80s.  What I'm talking about is once there is a full blown melt down, I don't think  a social work alone is going to cut it.

[freesia]

13 minutes ago, PeterPan said:

Not to play too much devil's advocate, but I get this all the time with people saying ds has a short yellow zone and what it really was was that he was SO MUCH in yellow zone that they didn't recognize it and realize he was about to go red. Even where training in the zones and these antecedent behaviors is happening, still people don't recognize it. 

Someone had mentioned what could be done before, and interoception work, mindfulness, then zones/emotion training, to where people can SAY or SIGNAL what zone they're in and be part of the solution helps. We had this with my ds, where he was coming out of therapy sessions and we thought his behaviors were a problem with waiting. It took an entire year of working on it for him FINALLY to be able to say that the reason he couldn't use our "waiting" strategies was because they were green zones strategies and that he was coming out YELLOW, ready to blow! So we made yellow zone strategies, literally with two bags, green and yellow, so he could just choose which zone he was in. THAT finally got us breakthroughs, when HE could understand his own body and self-advocate and say he was yellow zone and needed to make choices that fit that. HUGE.

So whatever, not disagreeing. Just saying these best things are *new*. Kelly Mahler's Interoception materials are new on the market in the last 1-2 years, and they were a BIG PART in getting us that breakthrough. Many are trained on Zones and using them superficially, without building body awareness first. So then yeah, it turns into this big surprise. 

Also, another thing I've noticed that I'm not sure how to solve is this--parents who are working with their ASD child (In my world they are mostly boys), but not as intensively as you are (sometimes bc things were really bad when the child was young and then got better so, bc they so want the child to have "grown out of it" they think everything is heading in the right direction) and then puberty hits and WHAM--all of a sudden there is this teen who is adult size and cannot regulate.  I'm just not sure how to help others understand the need to do this type of interoception work early on.  It's not like parents are always receptive.  So there will be ones who need strong help.  Even if they do do the work, I still think strong help will be needed.

[SKL]

23 minutes ago, PeterPan said:

Not to play too much devil's advocate, but I get this all the time with people saying ds has a short yellow zone and what it really was was that he was SO MUCH in yellow zone that they didn't recognize it and realize he was about to go red. Even where training in the zones and these antecedent behaviors is happening, still people don't recognize it. 

Someone had mentioned what could be done before, and interoception work, mindfulness, then zones/emotion training, to where people can SAY or SIGNAL what zone they're in and be part of the solution helps. We had this with my ds, where he was coming out of therapy sessions and we thought his behaviors were a problem with waiting. It took an entire year of working on it for him FINALLY to be able to say that the reason he couldn't use our "waiting" strategies was because they were green zones strategies and that he was coming out YELLOW, ready to blow! So we made yellow zone strategies, literally with two bags, green and yellow, so he could just choose which zone he was in. THAT finally got us breakthroughs, when HE could understand his own body and self-advocate and say he was yellow zone and needed to make choices that fit that. HUGE.

So whatever, not disagreeing. Just saying these best things are *new*. Kelly Mahler's Interoception materials are new on the market in the last 1-2 years, and they were a BIG PART in getting us that breakthrough. Many are trained on Zones and using them superficially, without building body awareness first. So then yeah, it turns into this big surprise. 

And it depends on the child deciding to rely on the adults' help, which is developmentally not really happening at certain ages.  "I've got this" is the norm, even when they actually haven't.  Kinda like a person who is getting drunk thinks he has things under control.

[PeterPan]

56 minutes ago, Teaching3bears said:

They experience a lot of gatrointestinal pain and discomfort.  This can cause more agitation.  But above all they experience an unimaginable amount of sensory discomfort/pain that they try to cope with every minute of every day.  They are not meaning to hurt anyone.  They have hearts of gold and are full of love.

I have no doubt it's part of the problem for some of the profiles of autism. It's something they ask about in the SPARK genetic studies, because they know this is occurring. But honestly, that's not our issue. I had gut problems years ago, started with a nutritionist, began food combining (which improves digestion and gut clearance), ate organic and plenty of the right stuff during my pregnancy. My ds is fed well and food combines. I even give him D-Mannose and occasional inulin, just to keep feeding the good. It's not his gut. His brain chemistry is just a hot mess.

And frankly, my ds isn't that loving either. He can be, but it's not his overall presentation. He's frustrated a lot and angry. He's mean to people and then doesn't understand why he doesn't get treated the way he wanted. It's part of the plight of a high IQ. His little brain is whirring, trying to figure out the world, and he doesn't figure it out correctly.

It's just different profiles. Again, it's why theories on what should be done are so limited. If people think they know autism and meet my ds, they're in for a very unhappy surprise.

[PeterPan]

59 minutes ago, Paige said:

It's a catch 22. If you are in an immediate emergency you can be hospitalized but if you have been hospitalized recently- or sometimes EVER- then many psych doctors don't want you as a patient. They have so many potential patients that they can only take easy cases if they feel like it and many do feel like it. 

Oh wow, I had not heard this. Sounds like a word to the wise.

Of course, frankly, the psych who wants "easy" doesn't want us anyway, lol. 

[PeterPan]

Total aside, but this could be a good moment to plug Kelly Mahler's Interoception materials. She's doing a webinar 9/24. https://autismawarenesscentre.com/shop/webinar/interoception-the-eighth-sense-a-focus-on-assessment-evidence-based-strategies/  It's $60 and assumes you've already covered the material from the more intro level https://autismawarenesscentre.com/shop/webinar/interoception-the-eighth-sense/ $20 (recorded, ready to view). 

Kelly's work made a HUGE difference for us. It's pretty much the missing piece with self-regulation and behaviors. It merges with communication and helps the student self-advocate. 

[GoodGrief]

8 hours ago, Ottakee said:

This is all so sad.   I work with special needs young adults.  I parent special needs young adults.   My friends parent special needs young adults.

The availability of mental health services stinks.   Parents sit in ER for days just trying to get an evaluation, let alone hospitalization.   It can take months to over a year just to get in to a psychiatrist.

Many more pediatric and adult psychiatrists are needed.  If we could access first line services easily then maybe we could avoid some of these situations.

Then we need well trained police and mental health crisis teams that can come on and then actually access services, not just get to a hospital, sedate and discharge with no change in treatment plan.

The mentally ill and special needs are far down on the priority list.

 

We really need to be incentivizing education/work in mental health services. The shortage is severe. The help needs to begin as early as possible, and it is incredibly difficult to access.

In the last month, I called (for the first time) one of the much published 800-numbers trying to find local mental health help for a suicidal (and potentially violent, though the threat wasn't immediate) young man. He had become very focused on the idea that the police posed a danger, so involving them was almost certainly going to escalate the situation in an ugly way. The only advice the gentleman answering the phone could give me was to bring the person to the ER. He could not tell me if there were inpatient beds available. No potential referrals for immediate outpatient help.

In the end, there was no getting the guy to the ER. The police did end up at the home, because he called them and said that if they found his body they should not blame or abuse any innocent bystanders. He left and hid, so they never talked to him and no other help was offered. He's hanging in there, but this is obviously very difficult for his family. You fear forcing any course of action because you really do not know how it will play out.

I've had a very ill daughter successfully treated within the system but it was no easy thing and involved constant advocacy on my part, and some risky decisions, frankly. I've got another dear friend whose mentally ill son is in prison and will be there for years. It did not need to end up that way for him, but the help is just not there.

[fairfarmhand]

8 minutes ago, Medicmom2.0 said:

It’s super common here.

And almost impossible to find a child psychiatrist. We had to travel two hours to see one. The whole thing is just absolutely exhausting.  Fortunately Abilify and a strict routine has helped DS immensely, but school has always been where the meltdowns mostly occurred, so we’ll see how this goes.

My uncle was a child psychiatrist. He worked until he was 80 years old because he loved his "quirky" patients so much. He was the only child psych within 4 hours of his office. And he didn't live in a tiny no-name place either. He had to quit because malpractice insurance wouldn't cover him anymore because he was "too old" I read the comments on his obit and his former patients and patient's parents just GUSHED over how helpful he was. The average age of a psych dr is like in the mid 50s I think. Which is about a decade older than the average age of a family practice doc. We're in for an even greater crisis in about 10 years if the situation doesn't change.

[ktgrok]

My guess as to the lack of psychiatrists is that many insurance companies do NOT have good coverage for them. And out of pocket it too expensive for many. Many don't want that struggle to be fighting with insurance companies constantly. (more than in other fields)

[gardenmom5]

16 hours ago, Teaching3bears said:

Maybe police officers should not be dealing with children? Maybe not individuals with developmental disabilities either?

Training is good but is it enough? Can we expect every person to have all skills? Someone might be an excellent musician but will ever be an excellent writer even with training and vice versa?

To be a police officer you need a lot of physical strength to be able to chase and tackle criminals but does everyone with that kind of "brawn" also have the "brains" to deal with other situations? I have met police officers with excellent people skills but I read so many articles where the police officers just seem to be missing so much up there. Or maybe they are just stuck in the mode of "I have to get this guy no matter what".

The irony in this post . . 

My son had a better experience dealing with the school SRO who came out to our house than the child psychiatrist WHO IS TRAINED IN CHILD MENTAL HEALTH!

eta: I just wanted to add, my son has ASD, ADD, CAPD, Anxiety, and school refusal.  He's in public school (they're paying to send him to a private school this year) because I can focus on his medical/emotional needs or his academic needs - I can't do both.

Edited September 10, 2020 by gardenmom5