Autism Vox

32 opinions for Dangerous Ideas About Autism

• Tanners Dad
  Dec 4, 2008 at 6:40 am

  I agree that is a dangerous social endorsement. I do not believe that it should be swept under the carpet. If it is really happening then we should wake up as a society and do something to support these families in need…

  Warrior Dad Gives Up FIght Takes Sons Life
  http://www.causecast.org/member/tanners-dad/blog_posts/406

• bonnie
  Dec 4, 2008 at 7:11 am

  Wow, that description sounds like something out of the 1950’s….”maddening disorder”…reminds of terms such as “refrigerator mother”….hhhmmmm….what was this writer thinking?

• navi
  Dec 4, 2008 at 8:42 am

  I’m sure the writer was more interested in using colorful language to prove his point, rather than accuracy.

• alyric
  Dec 4, 2008 at 9:17 am

  About the rates of abuse - I’ve quoted from the APA (the psychiatrists) who stated that children with deveopmental disabilities are abused at the rate of 7 times what normal children are as compared to 2 to 3 times the rate for children with other kinds of disabilities. Now, where are their figures coming from? I wouldn’t necessarily judge them correct, ever since I found that Digby Tantam was spreading the ‘autism as violence’ in adults based on his anecdotal ’study’ of children hitting. He’s a psychiatrist and that seems to be his version of data, which is pretty disgusting.

• Liz Ditz
  Dec 4, 2008 at 12:26 pm

  Also see Bev’s post at Asperger Square 8:
  Later we hear this: “Autism is a maddening disorder of scrambled brain development that can lead some parents to snap, experts say.” Who are these experts who use terms like “scrambled” to describe a differently developing human brain? Who sanctions this “snapping?” I want to know. I want this to stop, this unconscionable victim blaming. Throughout history, people have offered many poor reasons for killing. This is among the weakest arguments I’ve heard for murdering a child. But for a so-called journalist to endorse such garbage by focusing on the cost and the stress associated with autism, this is beyond the pale.

  “So Jacob became another statistic in a sad, pressure-cooker reality for families with autistic children.” No. He became a victim of murder. But because he was autistic, that’s not how the story is told. He deserved better, and so does his memory.

  III

  He could only eat with plastic forks and spoons. I can’t wear silk or polyester or be in the same room with styrofoam. Earlier, a reader sent an email asking me to write about Jacob. I thought I couldn’t do it. I was too angry, too sad, too ready to give up. Having the physical ability to write is not always the only prerequisite to using language. Sometimes I make strange noises, too.
  If I had twelve hours to explain, it wouldn’t be enough. There is no hard and fast line. Jacob Grabe’s diagnosis was Asperger syndrome. So many others have died for no reason. Autism isn’t a tragedy, but catastrophic thinking can open the door to such unthinkable events. There is more, so much more to say but this…today, this was most important.

• Kristina Chew, PhD
  Dec 4, 2008 at 12:28 pm

  @alyric,
  do you have a reference for those figures?

  dangerous, yes.

• CS
  Dec 4, 2008 at 1:02 pm

  “Warrior Dad Gives Up FIght Takes Sons Life”

  I’ll never understand this concept, Warrior Dad or Warrior Mom. Its almost a cry for help in some ways. Tanner’s Dad, I hope you are ok.

  As for myself, I’ve seen my role as a father to do for my son what I would have wanted done for me growing up. I expect no thanks, I expect no congratulations from others and I expect no indebtedness from my child for being his father. I don’t want anyone to tell me how good a father I am. This is the role I took on at conception, I’m not doing my son any favors for fighting for him, I’m doing what is right by my son and I should be expected to.

  When my son accomplishes something, I don’t take credit for his accomplishments. It doesn’t enter into my thinking. The progress he makes is his own, I just supplied the materials, support, education and guidance but its up to him and if he accomplishes something, the credit should be his, it does not belong to me.

• xtiluv
  Dec 4, 2008 at 2:28 pm

  @CS

  My sentiments on parenthood, exactly. If only more parents shared that philosophy, what a world of wonderful, well adjusted people we would have. I know your son will do well in the world. Everyone should be so lucky!

• siliconmom
  Dec 4, 2008 at 3:08 pm

  @CS - well said.

  Parenting any child is difficult, in different ways. I think that’s one of the things I find so dangerous about the whole “Cure Autism” ideology. You have parents who place all their hope and faith in the idea that autism is curable, money in to treatments that supposedly cure your child. And then a year goes by, and then two or more and you’re not seeing the grand recovery that was promised and you start to despair. And that’s when these horrors happen, when innocents are killed. Because all your hopes have been dashed

  Why are we so slow to accept difference in this country?

• So MAD
  Dec 4, 2008 at 3:24 pm

  This kind of thing makes me so mad. I hate to get political, but this is the exact reason I am anti-abortion. I am not religious, I just see such a slippery slope with abortion. First we kill inconvenient fetuses, then babies, then inconvenient three-year-olds with autism, then inconvenient 60 and 70-year olds. It is all acceptable b/c of the suffering. Plus, they didn’t want to live anyway, I mean they had AUTISM for pete’s sake. I am sorry for the rant, I just cannot take this guy being labeled a warrior.

• Timelord
  Dec 4, 2008 at 4:45 pm

  The bottom line on this - as already mentioned - is support. The health system (in particular the mental health system) must be better funded. Parents like these need to be educated and supported through the tough times. The mercury militia blame other things and are a threat to the needed support structure.

  Frankly, the US needs universal health care across the board so everyone can access it and then the support can be provided to show that Autism is NOT all of the things the Denver Post has made it out to be. Difficult yes - but not impossible.

  Alex Grape - you are a failure as a father because you gave up.

  America - you failed Alex Grape because you allowed him to give up (and that’s not an excuse for what he did by the way).

• JoyMama
  Dec 4, 2008 at 4:50 pm

  Thank you for this. I was having some similar thoughts (but Icad says it so wonderfully and clearly) reading a guest column in the Wisconsin State Journal this morning, Empathy for a tormented father regarding Ryan Dutter who killed his son Kyle and then himself last month.

  Where does one cross the line between acknowledging and encouraging despair?

• Shash
  Dec 4, 2008 at 6:21 pm

  The article alone was appalling and offensive, but then I read the responses to it and was sick to my stomach. I need wonder no more why assistance and support are in short supply for people on the spectrum. I also have every right to be deathly afraid for my son as he ages. Not from ME or my HUSBAND, mind you, but from society. There are some truly hateful people out there.

• Daisy
  Dec 4, 2008 at 7:01 pm

  Thank you for making these strong statements. Comedians may joke about “eating their young,” but killing a child, any child, is no joke.

• Harold L Doherty
  Dec 4, 2008 at 7:31 pm

  I believe you too should be more careful with your language Professor Chew. Labeling as dangerous the free discussion of possible causes or factors involved in the development of autism disorders and insinuating that such discussion is related to the deaths of autistic children is bizarre.

  Not your finest moment.

• CS
  Dec 4, 2008 at 7:49 pm

  Harold, your boring.

• Kristina Chew, PhD
  Dec 4, 2008 at 8:54 pm

  CS wrote,

  As for myself, I’ve seen my role as a father to do for my son what I would have wanted done for me growing up.

  A tall order! Trying hard here and stumbling along (and learning and enjoying it)—-

  @TannersDad,
  That headline about the “warrior dad” has bee on my mind all day—-Jim used to point out to me that I was in “warrior mom” mode, a kind of us-against-them mentality. It was never effective; it led to too much “I can do anything in the name of helping my child”—–glad to be a pacifist now.

• mayfly
  Dec 4, 2008 at 9:39 pm

  Autism is a significant developmental disorder affecting the brain which often leaves it sufferers incapable of surviving without continual and significant help from others throughout their lives.

  Are these dangerous words? Are we a society than cannot state the above for fear that such an assertion will bring violence upon those in the above condition because they will be seen as less than human?

  I pray not.

  Children are indeed murdered in cold blood. The crimes are often planned, and afterwards there is damn little remorse from the killers, but often a claim that the killing was an act mercy.

  Do you think these children would be alive if everything written about autism was positive?

  People are better helped by others talking about the full gamut of emotions of raising a special child where joy and hope go right along with angst and despair, and exhaustion is perhaps the most common feeling of all.

  The truth will prevent more of these crimes than denying the difficulties of autism.

• CS
  Dec 4, 2008 at 10:19 pm

  “Autism is a significant developmental disorder affecting the brain which often leaves it sufferers incapable of surviving without continual and significant help from others throughout their lives.”

  Yes, autistic people do suffer, but its been my experience both as one and watching my son that what he suffers from the most is prejudice and indifference. The prejudice of the uninformed that wouldn’t allow him to attend a preschool, after finding out he was autistic. Prejudice from educational psychologists who were looking to make him fail rather than succeed.

  Yes, autism is a lifelong disorder, but I hope prejudice isn’t. While I disagree with your outlook, I share your concerns in regards to my son. Not because of who he is but because of who we are as a society. I’m concerned with the sympathy expressed for people who do grave injustices to autistics.

  “Are these dangerous words?” If viewed in context and in reality, I don’t think so. If viewed through the lense of prejudice and ill will, yes I do think they can be dangerous. They can be used to deny an education, deny freedom and choice, they can be used to imprison, torture (JRC) and even kill (subject matter at hand).

  “Do you think these children would be alive if everything written about autism was positive?” We don’t know do we? I’m certain it wouldn’t hurt.

  “People are better helped by others talking about the full gamut of emotions of raising a special child where joy and hope go right along with angst and despair, and exhaustion is perhaps the most common feeling of all.”

  I have a difficult time with the concept of public therapy. I’ve never felt the need for it and its probably due to how I was raised. In our home we had lots of arguments between family members. Some of my family absolutely hated each other, but there was always a united front to the community. I can remember my mother crying at home or becoming very angry for me, but I’ve never heard her say a negative word about me to anyone. In a strange way it actually can be a bit frustrating because the way she tells it, I never did anything wrong in my life, which I know not to be true as does she but she would never admit it to anyone outside the family.

  The idea of publicly complaining about my child has never occurred to me so I can’t really comment to the need for public angst among some parents. Its just not how I think. I wish I could understand this need better so perhaps I could help, but I’m at a loss.

  “The truth will prevent more of these crimes than denying the difficulties of autism.”

  I agree but I suspect for different reasons. I tend to recognize that many difficulties with being autistic are imposed by outside the autistic community.

  Sadly, there will always be parents who kill their children and vice versa. There are certainly more neurotypical children killed by their parents than there are autistic children. Some folks just aren’t able to be a good parent and we should look to see how we can help these parents and also look at changing the prejudice experienced by autistic people. Every child deserves a parent that loves them unconditionally and every child should feel safe in their own homes.

• Roger
  Dec 4, 2008 at 11:57 pm

  Prevalence
  Davis [citing Valenti­Hein & Schwartz, 1995] reported “more than 90% of people with
  developmental disabilities will experience sexual abuse at some point in their lives.” Sobsey
  [2000] noted that “as many as nine out of ten women with developmental disabilities will
  experience sexual assault at some time.” However, these statistics cannot be substantiated based on the current body of research reviewed for this summary. No other article reviewed for this summary presented a 90% prevalence rate for either all people with developmental disabilities or women with developmental disabilities.Other prevalence rates cited were: 39 – 83% of females with developmental disabilities will be sexually abused by the time they are eighteen [Davis]; “close to” 80% of women with developmental disabilities have been sexually assaulted at some point in their lives [Protection and Advocacy, Inc., 2003]; 32% of males with developmental disabilities are victims of sexual assault [WCASA, 2003]; 16 – 32% of males with
  developmental disabilities will be sexually assaulted by their eighteenth birthday [Davis]. The range of prevalence rates illustrates the complexity in forming an accurate picture of the extent of sexual violence against people with developmental disabilities.

  In fact, an accurate prevalence rate will be difficult to determine considering that a number of authors [Davis; Petersilia, 2001; WCASA, 2003) noted only three percent (3%) of sexual abuse
  cases involving people with developmental disabilities are ever reported. Other authors noted that 75% of sexual abuse cases against people with developmental disabilities are not reported [Horner­Johnson and Drum, 2006] and 71% of crimes against people with severe mental
  retardation go unreported [Protection and Advocacy, Inc, 2003].

  The research shows that all forms of violence, including sexual violence, against people with developmental disabilities is underreported. Petersilia [2001] noted “few cases of violence and abuse perpetrated against people with developmental disabilities get reported to the police and even fewer are prosecuted because officials hesitate to pursue cases that rely on the testimony of a person with a developmental disability.”

  Many researchers confirmed the greater extent to which people with developmental disabilities
  are at risk for sexual violence. Elman [2005], Horner­Johnson and Drum [2006], Protection and
  Advocacy, Inc [2003] and Sobsey [2000] all noted that people with developmental disabilities
  are 4 – 10 times more likely to be sexually assaulted than people without developmental
  disabilities. Several authors [Horner­Johnson Drum, 2006; Protection and Advocacy, Inc, 2003;
  Powers et al, 2002] noted that people with disabilities (not specific to developmental disabilities) are 2 – 10 times more likely to be sexually assaulted than people without disabilities.

  Other areas where the reviewed literature shows agreement are in the duration of abuse and
  offender characteristics. Horner­Johnson and Drum [2006] and Elman [2005] cited women with disabilities experience abuse for significantly longer periods of time than women without
  disabilities. Sobsey [2000] and WCASA [2003] cited 49% of people with developmental
  disabilities are assaulted ten or more times.
  A number of authors noted between 95 – 99% of the offenders of sexual violence against people
  with developmental disabilities were known to the victim [Davis, Nosek and Howland, 1998;
  Protection and Advocacy, Inc., 2003; Petersilia, 2001]. Collier [2006] stated “offenders are most
  often known to the victim and hold positions of trust and authority; for example, caregivers,
  attendants, family members, drivers, etc.” Much of the literature reviewed showed that 44% of
  the offenders had relationships with the victim because of the person’s disability [Davis; Elman,
  2005; Nosek and Howland, 1998; Petersilia, 2001; Powers et al, 2002]

  http://www.oregonsatf.org/prevention/docs/DD%20Literature%20Summary.pdf.

• Roger
  Dec 5, 2008 at 1:28 am

  While I have a lot of bones to pick with neurodiversity people,I do think there is a valid argument,to be made that this is the sort of results you can expect,when most of the talk you hear about autism is about a cure.It can plant seeds in the minds of the more unstable parents out there.

  Dr Michael Fitzpatrick,in his excellent article,over at “spiked” tells proves “Tannersdad’s” point about the use of the word “warrior”.I think in that context the term is correct.Perhaps on a subconcious level,Grabe thought he was “curing” his son.In a way,he is no different from the parent whose kid dies from chelation or DAN! treatments.

  I can certainly understand how a parent might be driven to this,but much of the fault lies with the rest of the family for not coming in to take some of the burden off of the father.Where were the aunts,uncles,grandparents,etc. of Allen Grabe,or Ryan Dutter? Why haven’t they been caring for the boy as well ? This was a big problem with my family.They wanted nothing to do my mother,as she had an autistic son (me),and a daughter,who was both autistic AND bipolar.This is one of the hidden stories of so many families like this.It is all usually dumped on one parent.

  My mother had been drumming that into my head my entire life,but it has only been recently that it finally got through to me,to the point where I decided to investigate it myself,and this is quite a common problem.

  There is a problem with the language used in this article “maddening disorder”,”Autism can make normal family life impossible.” and such,but this is probably because of the biases of the woman who wrote thew article.She may be a DAN! mother herself.You ought to ask her,Kristina.

• Mike McCarron
  Dec 5, 2008 at 12:41 pm

  I am keeping the boy’s mother and the remaining family members in my thoughts and prayers. This mother had to bury her son alone. Hopefully there were family members there to support her, but she was in an emotional place that offers no solace and does not allow comfort to enter. I am truly thankful that the vast majority of people will never need to experience that pain.

  While there is a good deal that troubles me about the news paper article and some of the comments here and elsewhere on the web; for the moment my thoughts remain with Jacob and his mother. What happened to Jacob was very wrong, he was not killed by autism, not by using plastic forks, and certainly not by anything one would call a warrior; no he was killed by a man he called dad. A man that reportedly blamed his actions on the mother for ruining the way Jacob was being raised.

  The courts now have to determine if that man is fit to stand trial.

• matt
  Dec 5, 2008 at 1:22 pm

  I wasn’t beaten or abused by my parents, but by schoolkids that i went to school with.It seemed they thought it fun to hit the “weird” kid.

• Phil Schwarz
  Dec 6, 2008 at 1:44 am

  It’s not the accurate description of autism that Kristina is calling dangerous. That’s a strawman argument.

  What Kristina correctly calls dangerous, are the overstatements of autism-as-tragedy rampant in the media (because they boost ratings and hence advertising revenue), and the false sense of urgency to find and apply the latest interventions at any cost (that only feeds the burgeoning quack-cure industry).

  Parents who don’t have the means to engage in such goose-chases are led to believe that they are failing their children, that time is running out, that there’s no hope. And that’s why some of them crack and turn homicidal.

  Now, if our autism organizations were more responsible, they would instead use their authority and leverage with the media to make sure that the messages broadcast about autism were (a.) that although autism can involve severe handicaps, significant progress in mitigating those handicaps can be made if one is willing to engage in a long-range, step-by-step response that involves first establishing reliable, trusted, and respected means of expressive communication, and then step-by-step educational interventions focused on skill development rather than “looking normal”; and (b.) that time is not “running out”, at least not in the childhood years: it is never too late to start doing the things that will produce progress and improved quality of life.

  Our autism organizations do need to focus more on pushing for adult services and supports; the one sense in which it’s not counterproductive alarmism to declare that “time is running out”, is the transition to adulthood. Because there’s been so much focus on childhood issues and on causes and “cures”, not enough has been done to build up the infrastructure of adult services and supports that are needed.

  But these murderers of their own children, with rare exception, are not killing adult children, they’re killing young children. It isn’t transition to an adulthood lacking in services and support that’s causing these parents to become homicidal. It’s the messages of hopelessness that the media continue to spew, aided and abetted by the big autism organizations’ penchant for playing the pity card.

  Why can’t the fundraising message of the big autism organizations be instead, “it’s a big challenge and a long road, but your help will make that long road lead to successes, one day at a time”?

  That’s the real story of Autism, Every Day.

• Phil Schwarz
  Dec 6, 2008 at 1:47 am

  @Mike, thanks for continuing to speak out, and remaining connected to our community.

• David N. Andrews M. Ed. (Distinction)
  Dec 6, 2008 at 8:29 am

  CS: “Harold, your boring.”

  @HLD…

  Yes. And you’re and arse: all you come out with is shit and wind.

  At every opportunity, you come up with one logical fallacy or another, after having failed to read properly what someone has written. You need corking.

• Dedj
  Dec 6, 2008 at 10:16 am

  I wouldn’t have put it so dramatically but, yes, Harolds claim that Kristina is against ‘free discussion’ is not:

  A: supported by anything she has written, as per Phil’s explanation.
  B: realistic. A lawyer of all people should know that you can constrain and direct thinking and attitudes by your use of one word over another. E.g. “alledgedly mentally ill muscleman with multiple court appearances” sounds much more negative than “ex-football hero and veteran actor”, yet both describe the same person.

  Discussions that bandy about words like ‘toxins’, ‘damage’ and ‘tragedy’ trigger off our schema associated with those words. ‘Toxins’ triggers off ‘cure’, ‘damage’ triggers off ‘treatment’ and ‘tradegy’ triggers off ‘pity’. Any discussion that front loads its’ own end result is anything but ‘free’.

• Kristina Chew, PhD
  Dec 6, 2008 at 3:09 pm

  And certainly Harold Doherty is, like everyone else, always welcome to comment here.

• Arthur Golden
  Dec 7, 2008 at 3:17 pm

  As the father of a 36 year-old son with autism, I would like to express my appreciation for the comments of Phil Schwarz, especially:

  “Our autism organizations do need to focus more on pushing for adult services and supports; the one sense in which it’s not counterproductive alarmism to declare that “time is running out”, is the transition to adulthood. Because there’s been so much focus on childhood issues and on causes and “cures”, not enough has been done to build up the infrastructure of adult services and supports that are needed.”

  Since I now live in Israel (my wife, my son Ben and I moved here over 12 years ago from Boston, Massachusetts), I am focusing my efforts within my own small country, which I describe as “Planning for a good life for persons with disabilities.” Although many of my contacts are with adults with autism, here in Israel “to build up the infrastructure of adult services and supports that are needed” requires a broader effort for all disabilities. Fortunately, good ideas are universal and I am trying to network around the world. Again, my thanks to Phil Schwarz.

  Arthur Golden

• Emily
  Dec 7, 2008 at 9:42 pm

  Phil Schwarz, well articulated. Harold…perseverate much?

• Tanners Dad
  Dec 7, 2008 at 11:37 pm

  You folks really like to write stuff. The human element in this entire discussion is the fact that we are human. Eventually, everyone has a point of breakdown from stress. We do not come with a little geiger counter that tells us when we have experienced too much. The sad realization is we have to have a total paradigm shift to make people realize the breaking point for many parents have come and gone.

  Thank you for asking CS. I do not know anymore if I am OK. It does make me feel more human that somebody in this great list of words decided to ask. Last week a kid killed himself online while others just watched. Nobody cared until it was too late. We all need to be kinder to each other.

  My use of the warrior term is to generate a sense of urgency. My son is 15,001 on a waiting list to get help and services. Basically right now people have to die to move up. There are no plans for expansion of services and personnel. This is a tragedy of epic proportions. It deserves to have some flag waving fanatics moving the agenda forward. I am up for the job.

• Kristina Chew, PhD
  Dec 8, 2008 at 12:12 am

  @Tanners Dad,
  Amid all the back and forth, I think we forget that we’re all in it together, differences and differences of opinions and all. Many regards—–

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