The 12 Days of Skyhorse Publishing Day 5 Denial by Olmsted and Blaxill
Khali Raymond: Author and Blogger Talks About His Asperger's.

Violent Aggression and Autism: The Hidden Shame, Secret, Cover Up

Angry kidNote: Many AofA families have children whose autism includes severe aggression toward him/herself and others. For every pie in the sky feel good story, there are families openly swearing about the reality of autism under their roof. Or, in many instances, at their child's residential school, a placement made necessary by the violence. Each time The Good Doctor comes on TV, or Sheldon makes a funny comment, parents want to throw a dish at the screen to shatter the TV and the illusion that autism is a Swiss army knife of skills and gifts. Do our kids have skills and some sort of gifts? Honestly, only some. 

Below is a common story. Of love, exasperation, desperation and a plea for help. Families snap.  Mothers murder their kids. Fathers commit murder suicide. It's a horrible outcome for some who reach the end of their rope. We never condone killing our children with autism. At the same time, we can say that we understand the raw, visceral despair and fear that strikes - when our children strike us with ferocity. Autism and violence is an ugly secret. These children will not be able to live in group homes. They will not be able to hold even a volunteer or sheltered workshop job. Gone are the days of a day program populated by placid, cognitively disabled but socially able adults. Autism will devour current programs whole - and spit out the bones. Get real, America. GET REAL.

Atlantic CTV News

HALIFAX -- A heart-rending case involving a Halifax-area boy has triggered new calls for a national strategy to help families with children who can become violently aggressive because of severe autism.

The case of nine-year-old Callum Sutherland illustrates what happens when families can't get crisis assistance, according to Autism Canada and the Canadian Autism Spectrum Disorder Alliance.

Carly Sutherland took the rare step last week of holding a news conference to plea for help with her sometimes violent son, who is due to be fully released from a confined hospital unit on Thursday.

Sutherland told reporters her son, and her family, are frightened by how they will cope.

Cynthia Carroll, the chairwoman of the alliance, said families across Canada are reporting more severe cases of aggressive behaviour, and a lack of help.

"As we continue to work in silos across the provinces and territories, the risk increases and everybody holds their breath that for each case that hits the media that it's not a fatal case," Carroll said.

Carroll said the Sutherland case is one among many showing the need for a national strategy, and she asks why the federal Liberal government hasn't adequately responded to the Senate's call last spring for a federal plan. The upper chamber also issued a report titled "Pay Now or Pay Later: Autism Families in Crisis," calling for more assistance a decade ago.

Carroll said the goal is to hold a first ministers' conference, agree on the key needs, and get funding.

Both national groups say some health regions within provinces have behavioural therapies that are available to older children, but there are generally long waiting lists and shortages of trained therapists across the country.

"Parents aren't getting the supports they need, and it escalates and gets into crisis situations like the Sutherlands," said Laurie Mawlam, executive director of Autism Canada.

Sutherland said she has been inundated with emails and phone calls from people from across the country who are in the identical situation as she and her husband John Sutherland.

"What this has shown me above all else is we are not alone and this is not an isolated incident. This is something that needs to be addressed at a much broader level."

Sutherland said her son slept at home Sunday night as part of the transition process that will see him fully released from the hospital on Thursday. The family has also taken steps to shatter-proof glass in the home given Callum's violent tendencies.... Read more here.

Comments

John Robison

John Stone I did not mean to ignore you, I just wasn’t sure what to say. Even when we disagreed I liked Lynne as you may know. Today I focus on quality of life and adult issues. I’m keenly aware of the issue with higher support autistic people - if I can be oblivious to the idea that my family GI or anxiety issues are not shared by all humans, what else do autistic people suffer with either from ignorance or inability to communicate or get help

I wish we were more effective but there’s only so much I can do. I speak out but don’t call the shots on policy

dude

This is just going to be used to push toxins like risperdal and crap like electroshock.

John Stone

John Robison

I note you did not respond to my comment though you did respond to Linda's. I am somewhat sensitive to your point if it is that you are hanging in there even though things are difficult or worse, and I don't entirely know what the answer is -Lynne Redwood, of course, sat it out for years. I think from the outside all one can do is complain (and yes, accuse). As long ago as April 2010 I wrote that that IACC was the longest filibuster in history, and things are so much worse now - on that occasion Mark Blaxill addressed the IACC about a 1 in 100 figure for autism, and now it is 1 in 36: peoples lives are being trashed on an industrial scale and still the time wasting goes on. It is a slow genocide, or not so slow - it is economically insupportable - but nothing seems to prick the conscience of your colleagues.

John Robison

Linda1, what makes you think I am oblivious to all insincerity? I see the limited interest some people have in the public comment, but what else would you have me do? It's party through my efforts that public comments are summaraized out loud. I've said I'm committed to helping people be heard and I do that.
I stand by what I said about doing my best to support reswearch to relieve suffering and help autistic people with challenges at all levels.
Feel free to join me, as a commenter, or as someone nominated for the committee, or as a volunteer on other government committees.

Linda1

John Robison,
I do not mean this as an insult in any way, but I think it is possible that your autism is preventing you from picking up on the insincerity in other IACC members. That insincerity was very obvious to me in the meetings I watched online. Public testimony was treated like a burden that the committee had to suffer through. Those testimonies, mostly from parents, should have been the central focus. Severely affected individuals have never been adequately clinically studied and there is a reason for that. Conflicted interests do not want the cause(s) to be officially acknowledged.

Having an autistic person who has trouble interpreting behavior on IACC, a committee rife with potential for political manipulation and abuse, doesn't make sense. It is good that you are at an intelligent and honest voice on that committee, but political savvy is also essential.

John Stone

John Robison

Thank you for coming here and commenting.

Perhaps your acknowledgment of GI issues has something to do with this - supposing you were non-verbal or semi-verbal (instead of being extremely articulate) how would you deal with the distress? But that is not what the IACC has confronted. And hanging Wakefield out to dry has not helped:

http://ahrp.org/laffaire-wakefield-shades-of-dreyfus-bmjs-descent-into-tabloid-science/

As to Alison Singer I don't think anyone here would regard her as an honorable advocate for the problems of lower continuum autism. When Autism Speaks were forced to sling her out over what can only be called duplicitous behavior she started a new "autism" organization with leading vaccine advocate Paul Offit, who knows nothing about autism and makes fraudulent claims on behalf of his products.

http://www.ageofautism.com/2009/01/alison-singer-no-longer-speaks-for-autism-speaks.html
http://www.ageofautism.com/2011/02/alison-singer-autism-mom-pharma-wife.html

http://www.ageofautism.com/2017/03/paul-offits-10000-vaccine-doctrine-and-deception-on-every-child-by-two.html

This stuff is surely indefensible.

To put it another way, what if millions of autistic people suffer perpetual pain and gastric distress in order to maintain the political order?

I do take the view that you are a conscientious person trying to do good, but the IACC as presently constituted is a distraction and an obstruction.

John Robison

Good evening,
Several of you have mentioned me and I’d like to address some of your concerns as a private citizen. These are my views, not official positions IACC.
First of all, several of you have asked “why are we ignoring severe autism and injurious behavior?” You’ve also said, “IACC is dominated by neurodiversity proponents opposed to cure.” With all due respect, both those characterizations are inaccurate in my opinion. First of all, one of my fellow IACC members is Alison Singer who is most assuredly focused on individuals who are more impacted by autism and have much greater support needs than, say, me. I also speak out for more research into people with greater challenges in language, cognitive function, etc.
At least one of you mentioned Kim, and I think she knows that I have been 100% steadfast in advocating for solutions to the challenges her girls face in life. That belief applies for all autistic people, not just one group.
As for “ignoring injurious behavior” we have had several presentations on that in the past few years. The sad truth is, we do not know much more about how to mitigate injurious behaviors than we knew a decade ago. We are not ignoring that; we have not made meaningful progress. I for one have said progress is needed and that should be an area of focus. I’ve also called for more research into the needs of our higher support population. See this years strategic plan update.
You suggest some of us are “anti cure.” I think that is a misinterpretation. I do not believe it’s realistic to “cure” someone like me of autism; a difference I have lived with 60 years. That said, I am disabled even now by a number of aspects of autism, and in many cases I’d love to be cured of those. For example, I’d love to be cured of anxiety. I’d love to be cured of the GI issues that plague me. When I talk about that I say I don’t think autism cure is a realistic goal, but I absolutely and strongly support research aimed at relieving suffering caused by autism. To say I am anti-cure in the sense that I oppose developing therapies to help autistic people is simply wrong. I believe my fellow committee members share my commitment to develop therapies to help all autistic people.
Saying I believe some of us were born this way naturally is not the same as saying we are disability free. Saying we are exceptional in some ways does not mean all of us are exceptional, nor does that deny we also have disability. Standing up for our human rights does not mean we don’t also want medical help.
You may have a range of ideas about where autism came from. I believe I was born this way and I believe my son and father were too. If you hold a different view I’m not here to challenge you. Rather, I say you and I should agree that we both want the best quality of life for the autistic people in our lives, and we should work together in pursuit of that goal. Between needed therapies, respite, housing, jobs and relationships we have many areas of shared concern. No matter how disabled or independent we seem we all have needs that are not met by current medical science or social services.
I hope we can find our areas of common ground and pull together for a better life for all autistic people and their families.
Best wishes
John Elder Robison

Martha Moyer

Severe autism is often not just autism but a combination of issues including such as mental health, language issues, intellectual disabilities and OCD. My son age 44 still exhibits violence and there is little help when he goes off the deep end and destroys, putting holes in the wall, and with his terrific strength he throws chairs, stools, and breaks glasses. Recently mine broke a window too. Our adults are overlooked and they need help. We can train police in dealing with those with IDD or autism but when crisis intervention is needed and hospitals refuse to see these individuals then what can we do? Yes, I wonder what will happen next. He has thrown things at me too!

Sylvia

Big Government (CDC) paired with Big Industry (Pharma) have embraced, promoted and pushed the Neurodivirsity movement because it let's them off the hook; the more people who believe autism is just "wired differently", the less people will want to prosecute them for the autism epidemic.

No crime, no punishment, they are free to keep on keepin' on. Now it's rare to see anything BUT the ND point of view in media or government panels.

Parents who speak up about the horrible truth are told to stop being so negative. It is truly a world gone stark, raving MAD.

Aimee Doyle

@Joy B -

Actually, the neurodiversity movement - and its influence- is much more than the media. You're right that the media likes to print shiny, happy autism stories, and tends to ignore individuals with autism who are non-verbal, self-injurious, or aggressive.

But, neurodiversity proponents also influence policy and research directions. They dominate the IACC (the Inter-Agency Autism Coordinating Committee) which funnels funding from the Autism CARES Act (used to be the Combating Autism Act) to agencies for research. The neurodiversity proponents tend to be anti-cure and anti-prevention, so no money goes for prevention or cure of autism. There's not much spent on treatment either - there hasn't been a single new, effective treatment or therapy for autism for at least a decade.

Neurodiversity advocacy forced Autism Speaks to change their mission statement so that AS is no longer looking for a cure. Prominent neurodiversity proponent Ari Ne'eman used to sit on the President's Disability Council. Neurodiversity proponents have co-opted almost every major autism organization. Books like Neurotribes, by Steve Silberman, celebrate autism and ignore its deficits.

Neurodiversity proponents do advocate for supports and services, but in my experience, the best supports and the most effective services tend to go to the top 10% of the ASD spectrum. I asked an advocate on time what the plan was for severely impaired individuals. I was told "that's what group homes are for."

I guess my point is there's a lot going on behind the scenes - and the media is only one of the factors that influence our thinking about autism.

Joy B

Aimee Doyle, this might be stating the obvious but the "neurodiversity movement" IS the media, who have farmed a few token "differently abled" to be spokesmodels for the project/campaign. Why does the media exist? To promote products. It's all the same product being promoted in the end, whether it be Dorit pushing memes on social media and advising mommy bloggers and industry "science writers", or large media companies tasked with painting an absurd fictional personalization of actual iatrogenic fallout. Pharmaceuticals.

The cumulative effect of capture, and not just regulatory capture but cultural capture, is a population of philosophically captured citizens. "Consensus" is the new religion, but it's also just a new costume for a very old one; Authoritarianism.

Aimee Doyle

Kim -

I know you're friends with John Elder Robison, who sits in the IACC and is an activist within the neurodiversity community. What is the IACC position on severe autism? Are they addressing the issue at all? What are Mr. Robison's solutions to the problem?

Would really love some insight...even more would love some solutions. So many families are suffering.

My son was violent, aggressive, and self-injurious in adolescence - he punched holes in the walls. He hit his leg so many times he developed permanent bruises and the hair fell off. He would scream for hours between midnight and 3:00 a.m. He gave me and my husband bruises (fortunately he wasn't a biter). The psychiatrist had no answers. I understand some of what these families go through. No one wants to end up like Trudy Steuernagel, beaten to death by her severely autistic son, Skye Walker.

Barry Stern

If they would only do so, Autism Speaks is well positioned to help families whose autistic children manifest occasional meltdowns and aggressive behavior. Our 18 yr-old daughter has both autism and Lyme Disease and rarely sleeps without tearing her sheets and blankets. We just paid an enormous amount to a highly specialized lab for blood tests to help diagnose what is going on with her. These tests were not covered by insurance. Thankfully, the results gave some clues that a specialized doctor could use to fashion a well-targeted treatment protocol. There are only a handful of doctors with such capabilities. We know who they are, and none accept any insurance let alone Medicaid. Autism Speaks could be helping families like ours afford treatments with doctors that could help our daughter. Otherwise, we're faced with placing her in an institution, which in our state is a life sentence of dependence, psychotropic drugs, no friends, no job or hope for the future.

Hans

@ Aimee Doyle

I do not know why they ignore severe autism but it is probably because it isn't pretty and not compatible with their ideology/worldview. They live in fantasy land.

The series on TV aren't interested in reality either. In the real world someone with autism would very unlikely become doctor even with savant abilities. They would not be able to handle stress, lack social skills etc.

Also the doctors that we see on TV are usually brilliant or geniuses while they are often brainwashed morons in the real world. If they weren't the current fraudulent healthcare system would collapse.

The media might give exposure to various movements as long as they do not threaten profits while ignoring anything that could harm the bottom line.

This leads to the promotion and spreading of ideas that have little to do with the real world.

Christina

My 23 year old son (286 lb) is very high functioning (straight A's in some junior college courses), and he can still have the very sudden violent outbursts.

It's a good thing that we are having snow in Houston today; the long sleeves cover the 2 inch black-and-blue bruise on my arm. He bit me through a sweatshirt jacket at the video arcade, after losing a video game.

Educator

I see and hear of this often in the educational system. For whatever reasons, there are several students on the spectrum that can truly become a danger to self or others. Even the school system is guilty of minimizing the problem, possibly not wanting to admit that they cannot handle some situations. Group home staff and parents want the child at school, understandably.

Ann Millan

I know many families with autism in this same situation. They have honestly followed all the scientifically approved...and alternative treatments for their child...diet, supplements, drugs, removing metals, ABA, etc. Nothing helped.
If I won the lottery, I’d love to have an extended living situation to help these individuals with aggressive autism. I truly believe they can be helped if only ‘we’ could find their key. I know one family who is succeeding by reducing the testosterone in their son. Is agression more prevelant in boys than girls? We need a focus on helping these families and giving true hope. They do love their child and we all need to work together.
I look back on my own child who had, what I called, ‘good day and bad day’ syndrome. My goal was more good days. It can be that simple.
Each child is different and their needs are different.
We have to stop looking at autism as ‘one size fits all’. It is critical we listen to the parents as the baseline and move forward.
We can never give up.

Aimee Doyle

@Hans - "Interesting that the entertainment industry is whitewashing autism."

It's not just the entertainment industry and the media. How about the neurodiversity movement? Why aren't they helping families who have children with severe autism? After all, individuals in the neurodiversity movement claim to understand autism better than anyone else. Why are they ignoring severe autism? And why do writers like Steve Silberman (Neurotribes) ignore severe autism?

bob moffit

"As we continue to work in silos across the provinces and territories, the risk increases and everybody holds their breath that for each case that hits the media that it's not a fatal case,"

The word "silos" is a perfect description to describe the deliberate "isolation" by which .. cold .. indifferent .. impersonal .. public health bureaucracies, elected politicians and medical health professionals .. with great assistance from a main-stream media .. can continue to IGNORE desperate "calls for a NATIONAL STRATEGY to adequately assist the GROWING NUMBERS OF FAMILIES WITH SEVERE AGGRESSIVE BEHAVIORAL PROBLEMS.

Again .. Sol Alinsky's "Rules for Radicals" ... which recommends "isolating" the target ..

RULE #12: Pick the target, freeze it, personalize it, and polarize it.” Cut off the support network and isolate the target from sympathy. Go after people and not institutions; people hurt faster than institutions. (This is cruel, but very effective. Direct, personalized criticism and ridicule works.)

In other words .. create "SILOS" ..

Hans

Interesting that the entertainment industry is whitewashing autism.

Only focus on the gifts not on what has been lost.

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