Book Review: Finding Lina A Mother's Journey from Autism to Hope
Dachel Media Review: The "Mystery" of Autism

Lost & Afraid: Where To Turn When Autism Turns Violent

PreventionEditor's Note -- Every so often a reader will comment on a story we've published some time back, and it's easy for those to disappear without being noticed. So we thought we'd call attention to this new comment to a post we originally ran in 2011, "The Dark Side of Autism -- Violence, Assault, Police Interaction." (You can read that story below the jump.) This new comment, by Lost and Afraid, captures the desperate reality of autism for so many even as we keep hearing about the small proportion with higher functioning lives ... suicide, violence, family stress, profound disability. What fun. -- Dan Olmsted.

Managing Editor's Note: I extend a personal invitation to autism self advocates to reach out to Lost & Afraid through Age of Autism with their useful insight as to how to prevent the situation from escalating.  Please leave a comment with your suggestions as to how to ensure a safe outcome for all.  And for families like Lost & Afraid,  perhaps the autistic self advocates at ASAN, including their leader Ari Ne'eman who sits on the IACC in DC can assist you. They are always concerned following a tragedy and I'm sure will have concrete resources and personal assistance to help their autistic brethren and sisters.  You can reach them at info@autisticadvocacy.org. Thank you.

I have a 16-year-old brother-in-law with severe autism, and he gets very violent on almost a daily basis. I didn't have any experience with autism before him, and my wife and mother-in-law seem to forget this, as now I'm not even allowed to say anything to him when he's doing something wrong. I've been accused of being at fault for his outbursts of violence, and I've been threatened by members of my wife's family with physical violence if they hear about me treating him that way again.

His father took his own life last year, and since then it's gotten worse and worse. Now this kid who can't even communicate that he has to go to the bathroom until he's shit his pants, has this huge emotional trauma to deal with. And since his mother had to go to work to provide for the family, my wife got stuck watching him almost every day, so now I have this violent person in my home at least four or five days a week. I fear for the safety of my one-year-old daughter, who he has already hit once before (and I got blamed for that incident). There are no resources for people in my position. I've tried doing research online about the link between autism and violence, and how to deal with it.

Everything I've found is useless.

Some of the articles sugar-coat the problem by coming out with statistics about how violence is only present in 3% of autistics. Well, that's fantastic for the other 97%, but what am I supposed to do the next time I get head-butted in the chest because I won't let him run out of my apartment before everyone else is ready to go? The rest of the articles I've found are terrifying, like the story of Trudy Steurnagel, who was beaten to death by her autistic son. I don't know what to do.


My wife and mother-in-law think that he'll come out of the autism to a degree, but I don't see it.

They're basing this hope on my sister-in-law coming out of her shell to a degree, but she only has Aspberger's and not full-blown autism. On top of that, in the eight years I've known him I've only ever seen him get worse. It has me wondering what would have to happen before they finally admit he's dangerous.

Does someone have to get seriously injured in one of his attacks? I'm trying not to resent him, but it's becoming increasingly difficult. His violent behavior towards everyone around him has me afraid for my daughter's safety. Because my wife is stuck watching him constantly, she can't get a job, and we're struggling financially. Any time I try to talk to her about the situation, I'm either met with hostility or silence.

Police-Crime-Scene

From The Washington Post, a frank look at the reality of autism for thousands of families.  As the teens with autism age out this problem is going to grow. Cute little boys who punch are a far cry from adult men (and women) who can injure and even kill. Ask Trudy Steuernagel. We need better treatments so that our boys and girls, men and women on the spectrum receive proper care. We need to train law enforcement. And we need a national alarm to sound that the autism epidemic is very real.  The coming years will bring grave challenges. Violent does not mean criminal - but is our system able to tell the difference? And how do we teach and  protect our kids from the backlash?

In Va. assault case, anxious parents recognize 'dark side of autism'

The issue resonates not only with parents but with police. Every year, the International Association of Chiefs of Police picks one major issue to address at a national summit. In 2010, it was improving police response to people with mental illness and such conditions as autism.

"It has been a huge and significant part of our conversation in the last couple of years," said John Firman, director of research for the organization.

Firman, who participates in the Big Brother program, has a "little brother" with Asperger's. He said that when he goes out with the youngster, he sometimes wonders, "If anything would happen here, how would police deal with him?"

Among the summit's recommendations, Firman said, were that all officers be trained in how to deal with such people and that police work closely with families and community organizations.

Latson's case, however, was not a matter of a law enforcement officer being untrained, the prosecutor said. "This deputy has a 33-year-old mentally retarded child," Olsen said. "So the deputy is very sensitive to dealing with children with disabilities. He's lived it every day for the last 33 years."

Pained parents

On March 4, the jury found Latson guilty of four charges, including assault of a law enforcement officer and wounding in the commission of a felony. On May 19, he is scheduled to appear before Stafford County Circuit Court Judge Charles Sharp, who can accept or reduce the jury's recommended sentence.

Last week, prosecutors tried Latson on a breaking-and-entering charge related to an incident in 2009. In that case, prosecutors said, Latson rang the doorbell at a teenager's home. When the teen opened the door, Latson hit him and followed him inside. Latson pleaded guilty to assault last year. On Thursday, he was found guilty of breaking and entering.

"I'm not here to try to paint a pretty story about my son," but he is not the violent individual that Stafford authorities have depicted, said Latson's mother, Lisa Alexander. "Neli is not a danger to society. He doesn't belong in jail. He belongs at home."  Read the full article HERE.

Comments

TLS

This is such a difficult topic. We don't want our children stigmatized and thought of as "violent", but the reality is that autism and unplanned, spontaneous, violence often go hand in hand. 3% sounds pretty low to me. I think it's higher than that. In order to avoid the stigma, for the most part, we keep it under wraps. WE send out happy stories about the quirky kid that is a music prodigy or the computer whiz. This is not the reality for many of our families. Acceptance will not end the violence. We need prevention and a cure! I feel for this guy who wants to keep his marriage together, but finds risking his daughter's safety is equally unavoidable. A social worker needs to get involved here.

Martha Moyer

My son with autism is 6 ft. 2" and we have had violent episodes. What helps is for the ABA person to come and assist. We found he was on the wrong meds too so some have been taken off. We know that we can not restrain these big people but, with my son, redirection helps.

no vac

Turn to endocrinologist. The levels of androgens in plasma or saliva should be measured in aggressive children. If they are very high, the physician may recommend a treatment to decrease the levels of these hormones. It should help reduce aggression.

Angus

more confusion how can someone newly diagnosed make sense of all this...you cant and it is deliberate confusion to have all these stories out..but the problem is on here ,most and all are true...

Cheryl Dieter


I am sorry that you are in such a difficult situation and a applaud you for trying to figure out what is best for all involved.
It seems to me that your first obligation is to your daughter and to make sure that she is safe.Is your BIL receiving any services? Is he on meds? Is there a local day care program he can be enrolled in? A group home?I am not sure what your wife and her mother mean by they think that your BIL will come out of autism? I would say based on what you have shared it is doubtful.
It is not your obligation to take care of your BIL. Your obligation is to your daughter. I think in this case that your daughter comes first and with that in mind you need to help find the resources that your BIL needs and if those are met with anger and hostility from your wife and MIL then you may have to remove yourself and daughter from the home.

Leslie Phillips

I'd like Ari to spend a week taking care of one of these kids, all by himself -- no relief. Then he can write a blog about how autism is "the new black" and shouldn't be prevented, treated or cured.

Carol

You have a responsibility to protect your daughter, even if it involves removing her from the situation.

John Stone

Benedetta

Truly I fear that Autism Speaks have not added to the reality, and as you know it's the doctrine of "greater awareness": when it was 1 in 10,000 people weren't so aware! And at least if it is now 1 in 38 (just to mention the AS cooked Korean figure) it is jolly good news for the pharmaceutical industry. Just imagine if we had had proper old style news reporting of the problem since 1995 and not "light it up blue"! The reality of too many people's lives is 'Lost and Afraid' and Bernie has lost the plot.

Benedetta

John Stone - it is always interesting to see where the rich men of our country came from. I would not have thought that Bernie Marcus would have started out a pharmacist and then turn that around to end up as the CEO of Home Depot.
I wonder what lead him to open up a place to treat kids with autism in Georgia, that would be interesting to know?
So, he gave 25 million to Autism Speaks -- trying to get autism to become a familiar word-- to draw in more money from the government and other sources.
He believes if you get a child by 2 you can save it but it is too late at 3 or 4-- that is not true, but I understand what he means -- you have to start working on it early and hard. .

Vaccines damaging kids, and developmental delays--- were put under the banner of autism -and Bernie Marcus and Autism Speaks has made autism a very familiar name so - might in the end - of a very long story in medical history indeed help.


Depression is a big thing in all of this mess. If no one has every suffered real depression, they think it is just the blues -- 0hhhhh that is like comparing a scratch on the knee to slowly sawing off the leg.
The Abillify advertisement says that depression hurts -- that mean just that.
As my daughter said a couple of weeks ago after a two week bout of it -(she was getting off of proztac by the way! : ) It is just like a physical pain-- it is no less than that!
And you know -- it might just be - we have tried to separate the brain/endocrine/immune system off from basically muscle pains, and that in itself is insanity of the whole human race to do that.

So even if a kid ends up not having autism--(a kid with autism can have depression too) but what we think of as normal kids ends up having bipolar or depression in their teens -- they are angry, irritable,--- worse--- maybe turns to drugs and alcohol, is that a typical kid?.

This country thinks typical teenagers are just moody with all the hormones. My doctor friend when I told her about my daughter said - that just sounds like a typical teenager stuff, and then explained to me how her daughter got mad one time, and shoved her fist into the dry wall. They made her fix it .

I am sorry - but when I was growing up *typical teenagers* - to my knowledge did not punch holes in the walls, even the most fiery - tempered ones. .
I also remember when the suicide rate in teenagers began to rise too (no one had a clue) - that is actually suicide by guns - not death by drugs-- which is pretty high too.

I am always so curious about Ari Ne'eman - any problems with being irritable, depressed and -- one of the biggest is being anxious.
Anxious to the point it cripples?
As in those with Aspergers become so unsure of themselves that they are unsure of spelling simple words, and have to ask how to spell the word "Dollar" or have to pull of on the side of a busy interstate because they are over come.

Ari Ne'eman - is trying to separate Aspergers from mental illness or should I say mental injury and calling it -- what -- neuro diverse.

I am for him though when it comes to standing up and saying I am differnt, but I have the right to be here just the same as anyone else.

It is not alright to claim that they are different and they enjoy their handicap.

Anne J.

My 20 year old daughter is one of the 3% with violent, aggression problems. We've been doing biomedical interventions for over a decade (often with great results). Our problem is that every time she has to undergo anesthesia, she comes out worse. This last year, she came out of dental surgery extremely violent (one of her rages involved a broken foot for me). We have found Dr Amy Yasko's protocol to be extremely helpful. We've recently tested her for her genetic mutations/SNPS (through Dr. Yasko's site), and feel we are finally on the correct path for her. That detailed "blue print" of her unique genetic make up, combined very targeted supplements has brought about an incredible turn around, and we are SO thankful! We still have a ways to go, but she is no longer violent each and every day. She is regaining speech and language, her seizures and stims are dramatically decreased, and we have a glimpse of her former darling self now starting to shine through again. In short, we have renewed hope we can turn this around. In my opinion, waiting for these kids/young adults to simply "outgrow" their symptoms, especially when there is violence involve, is a horrible idea. Someone could get hurt (and the person with the violent outbursts is probably really suffering from an actual medical problem that requires proper treatment). My heart goes out to all those families dealing with aggression. It's very difficult to find any help. We are pretty much on our own to figure this all out. It's tragic.
I'd really recommend checking out Dr. Yasko's information (she has lots of free "webisodes" on her site you can watch and see if you think her approach might make sense for your child). It's been a true life saver for us!

Theresa 66

We think Pandas/ Pans has brought out a very violent streak in our child. There is now a test for it with Moleculera labs. I can't imagine the pain some of these kids are going thru, so its very possible they are acting out of that frustration. Do any of us know how much it hurts if Your own immune system is attacking Your brain ? Or the immense pain of the GI problems some have ? I'm sure there are other reasons for violence, but can't some issues be treated and eliminate the source ? I wish I knew who to turn to for help, but most doctors/ treatments are out-of-pocket and unless Your wealthy or very lucky, its going to be difficult.

No answers

Surely you were joking when you said to contact ASAN. They don't care until a tragedy occurs and their concerns don't seem to gel with the part of the community who can either relate or at least empathize with people dealing with violence.

I strongly support Libby's comment. My son's violent self-injurious or agressive behavior has always came from illness. The task is to figure out what is the source. Ear infections and bowel issues (being the most prevelant) have been the main culprit. Identify and treat and luckily things have always improved. But, he will be sick again and he will lash out because he can't express his pain or deal with it in a more appropriate way. So, the pinches, bites, hair pulling and wrestling to the ground, and escaping and hiding behind a locked door will happen again. When? I have no idea.

Also, depending on how these behaviors are managed they may be being reinforced. So whatever started them may not be what is maintaining them. Illness meets behavior analysis.

This man is right it's a dissmal situation. I have no answers. At one time I thought training the police was a good solution. But, I personally would feel afraid to call them wondering if that could shake out like the story you shared with charges being pressed against my out -of-control upset man-child.

Libby

The worst violence my daughter demonstrated was when she was passing kidney stones. Of course I didn't know that at the time. All I knew was that I was getting hit, kicked and bit several times a day for months.

My daughter violently banged her head on the floor exactly two hours before a bowel movement. I would lay under her to prevent her from injuring herself.

Severe bowel disease is well documented in autism. Crystals in the urine are also a common find. Once we corrected these problems, the aggression ended.

Autism is medical, not psychological. If a child with autism is acting violently, they are communicating that there is a problem. Insist that doctors run every available test to identify what might be causing the aggression.

It took nearly two years for me to get a doctor to run tests for kidney stones. Keep fighting. Demand they treat the child.

John Stone

I stumbled at the weekend on this very interesting clip of Atlanta tycoon, former chairman of the CDC Foundation (1998-2001) and now emeritus board member, Bernie Marcus, who recalls how in 2005 he recruited Bob and Suzanne Wright to found Autism Speaks.

http://www.youtube.com/watch?v=gg9mN3aCukY

It is remarkable for how movingly (and realistically) Marcus talks about the devastation on families of autism (physical, mental, financial) and his acknowledgement that the numbers keep on swelling (which is so very different, of course, from the endless disinformation in the media). What is also tragic is how his intevention has led us down the wrong path so that nearly two decades on from his first involvement nothing has happened to stem the flow. He says we know much more about it now, but if we do I doubt if it is in the way that he means. AS have of course commissioned some good work but we have this endless heap of data to do with autism which is of no use whatsoever, plus the giant pharmaceutical companies plotting with AS a new generation of psychotropic drugs (and IACC taken over by people whose day job is to promote vaccines).

Perhaps he should have paid more attention to the other Bernie (Rimland): then the people would have been genuinely helped.

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