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Autism Is Different Not Less like Equating a Broken Finger with Being a Quadriplegic

Monty_python_hg_002_black_knightManaging Editor's Note: James Terminiello has nailed the white washing that is Autism "Acceptance and Awareness" month in his editorial in New Jersey.com. What began as Leo Kanner's diagnosis of a whole body, thoroughly debilitating diagnosis has been broadened to include the quirky guy who doesn't talk much at parties - and this hurts those people with full blown autism - who are no longer the face of the diagnosis and who have the greatest needs.  I'm reminded of the Monty Python Black Knight scene, " It's just a flesh wound!" Except it's not at all funny.

By James Terminiello

Special to the Times

In 1991, a torpedo blasted the engine room of our little family when doctors confirmed that our 3-year old son Alex was autistic. They said: “The little boy you knew is dead, but a new one has come along whom you will also love.”

That rather oblique optimism was tempered with warnings that Alex might throttle his baby sister in her crib.

Fast forward to today. I recently saw a t-shirt that read “Autism, Different, Not Less.” Clearly, times have changed, and so has what we call autism. The definition of “autistic” has expanded beyond reasonable bounds, leaving those who truly suffer in the dust.

That clumsily worded t-shirt speaks directly to a rebranded autism. The media are full of stories of the “autistic” who writes plays, achieves marvels on the basketball court, or gets swindled by a used car dealer.

What do these items have in common? They have no bearing whatsoever with the experiences and suffering of those who must daily face what I can only call “autism prime.” Such people exist in a swirling, nearly impenetrable world of their own punctuated by violence, lack of articulate speech, weird obsessions, incredible indifference and a hundred other heart-breaking negatives.

When my son was born, autism was still a largely unknown, baffling condition that effectively destroyed the lives of three in 10,000 children. Today, autism has become a Hollywood-fueled, pop-culture phenomenon purportedly impacting as many as one in 95 kids. The attention it gets drives funds in the direction of research and has begotten programs that will give my son some semblance of a life after my wife and I are gone.

So, what’s the problem? It all sounds positive.

Yes, but really no. Today, autism seems to encompass individuals with personality quirks and slight disorders who otherwise carry on with their lives. That fastidious guy in the office who lines his pencils in size order and has no friends may be lightly tinged by autism. On the other hand, he holds a job, owns a car, pays rent and earns $75,000 a year. Should he really be placed on the autistic spectrum?  Read the full editorial Opinion: Expanded definition of 'autism' goes astray.

And thank you to James Terminiello.

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You downplay the challenges that high functioning kids with autism and their parents face. Their challenges are different...not less.

Thanks again for the link to this excellent article. It’s clear, from the responses here and at NJ.com, that a lot of people have problems. Many of these problems however are not autism. Many people need help, but this help should not be compared to what is needed for people who have autism. Autism diagnosis is made in early childhood, almost always because of problems with language development. Language development is not normal for children with Asperger syndrome either. See the articles by Gillberg and Cederlund:

[1] Gillberg C, Cederlund M. Asperger syndrome: familial and pre- and perinatal factors. J Autism Dev Disord. 2005 Apr;35(2):159-66.
[2] Cederlund M, Gillberg C. One hundred males with Asperger syndrome: a clinical study of background and associated factors. Dev Med Child Neurol. 2004 Oct;46(10):652-60.

Also, on NJ.com I notice posts by the pharma-funded committee, lilady. They scorn the comparison of autism to a torpedo hit, and refer to AOA as an anti-science blog. In attempting a discussion with them last year, I quickly realized that they have zero competence in science, especially not in neurology. I am glad to see they are not posting comments on AOA.

I have two children who are on the spectrum, both considered by local medical/educational authorities to be "high functioning". However, the co-morbid conditions, like ADHD, OCD and Anxiety are the most debilitating for my children.
I worry about depression, as both have stated that they are lonely, and both really do not have friends. I am not talking about the facilitated friendships that we do in the community, but real, connected friendships that are the stuff of life. We do social skills training etc,but when compared with typical kids their age, the differences are so real. I understand why other kids shy away from them. I cannot force other kids to interact with my kids, it is that simple, even in spite of Autism Awareness month.

Maybe, my kids will have jobs one day, but to me it is the relationships that you develop, and the mark that you leave on the world is what matters the most. Being able to make friends and have sustainable relationships is a very important life skill, and to not have that ability, to me, in my humble opinion, is a very serious challenge and should not be trivialized or marginalized into not being that important.

My kids are part of the typical world and the autism world, but are not accepted by either. That is my opinion and how I feel at this time.

Please understand that persons with Aspergers do have their challenges and they are serious ones. We have to work together as one united autism community if we are going to affect change for the severely impacted persons with autism.

Donna - no worries and thank you for the compliment.

FWIW - my wife once lost it in a school setting - I think they were still shell shocked weeks later. She apologized to me an hour after the carnage, for going nuclear in a hallway full of kids and other "innocent bystanders". She always had a short fuse - and even though we had a great teacher, at that particular moment, everyone who needed to really tune in to what she'd been saying for a long time just seemed to be oblivious. I don't even recall which particular words or phrases or whatever set it off. The whole thing probably came to a head only because I didn't have the guts myself to scream when I probably needed to, much earlier on. I told her later that although there have probably been a few bridges she didn't need to burn in the past, this time it was OK. She did what she needed to do. Even the teacher agreed.

She's a lot more careful now about her temper, but we both learned something from that experience. You're an autism Mom, you have great powers - use them wisely ;-)

'the person wearing the shirt that spurred the piece could have been me, or you, or someone anywhere the "awareness spectrum"'
Wise and compassionate words, indeed, Shiny Happy Person. And so very true how we all seem to be walking on broken glass lately. I know for certain my frustration with this whole ordeal is making me lash out at inappropriate targets and I need to take it down a notch.

Kim, if I might add, I think you've done a great job at moderating this really volatile subject matter.
Now, off to find me some anger management classes! ;)

Thanks, Shiny - may I call you Shiny? :) These are not easy topics and we try to tackle them as best we can - and we all bring our own personal perspective.

Donna and Kim - thanks for the replies. I also didn't mean to do a knee jerk or step on anyone. I think we're all walking on broken glass here, somewhat. You wanna scream, understandably, because it is crazy how devastation can somehow get packaged up as something almost cool and trendy for public consumption. But sometimes the people you're not screaming at, actually think you are. As was the case here with me, for a moment anyway.

Please be careful that we don't start painting blue targets on everyone who speaks awareness. I know that's not the intent, and you guys probably do make that point over and over again, more eloquently than I ever could. All I can say is that one of my first thoughts while reading Jim's article was that the person wearing the shirt that spurred the piece could have been me, or you, or someone anywhere the "awareness spectrum" (almost feel like apologizing for the choice of words there).

BTW, Kim, the song (it was a few years ago now) was Rigadoon in A Minor. Still my favorite. Sadly we've been struggling to find the help we need to really keep the whole thing going, but we haven't given up. I hope your daughter "finds her chops".

Alain

Stagmom was being ironic.

Stagmom, A dx of autism ain't a dx of psychopathy and as for hitler, his ability to speak in public preclude a diagnostic of autism; he never had any social problems as indicated by his spectacular ability to convince an entire population of a country to assist him to do an holocaust.

May I recommend reading a good book by Robert Hare in order to know the kind of dangerous people which can make life hell for anyone including autistics, The books listed on this page:

http://www.amazon.com/Robert-D.-Hare/e/B001H6N9DG/ref=sr_tc_2_0?qid=1367995741&sr=1-2-ent

are good books and this book in particular:

http://www.amazon.com/Snakes-Suits-When-Psychopaths-Work/dp/0061147893/ref=la_B001H6N9DG_1_2?ie=UTF8&qid=1367995751&sr=1-2

This book saved my life when I used to live with a real psychopath who wanted me dead.

Alain


Kim,
Is John Elder Robison "brushed with autism?" He's married with a kid and has had at least three successful careers.

Shiny Happy Person,
Just wanted to clarify - I only made that remark about the GFCF diet because I see so often in articles about kids on the severe end of the spectrum, so many people make comments like "they should just try x,y,and z and their kid will get better", when in reality, most parents who are in the position of the author of this article have already tried 245 million different things and they did not recover their kid. I didn't mean to bash the diet (we've been GFCFEFCFWTF for over a decade) but I can see now how my comment looks like I'm bashing it. Sorry for the confusion!
(and very happy for your son, as well!)

Hi, Shiny Happy - no if my girls wore Different Not Less it would take on a very different meaning - sounds like similar for your guy and congrats in his successes. Jim is talking about the "Brushed with autism" sorts that take on the label and push their agenda in the media so that kids your like son, my girls, are excluded. What song did he play at his recital? My middle girl loves music and just asked for guitar lessons. KIM

I'm not sure where I stand on all the comments here. I agree with pretty much everything that this author has to say about the forgotten "prime". And yet my son has a t-shirt that says "different, not less" - because he is (as is blatantly obvious to anyone watching him) very much different, and although he is different (severe), he is certainly not less that anyone else in the realm of humanity, in any respect, other than his inability to break free of the anguish of autism. He is on a GFCF diet - because we discovered very early on that it helps immensely with bowel issues. And he learned to play the piano, to the point of playing a classical piece at a recital (for kids). In almost 17 years I have not had a conversation with my own son. I get it. He is severe, but he is also talented; he will always be different, but he is definitely not less. I don't put that shirt on him to try to obfuscate anything. Just the opposite - it sends a message to anyone starting blankly at the poster child for "prime", the kid flapping his hands, hunched over, facial expression twisted into a knot, staring at the floor, over in the corner of the room - whenever you see this shirt, remember "different" is this kid. This is the real deal.

The shirt sparked a great article, and many good points, but I'm not a clueless idiot for using it to make a valid point, which seems to be suggested here. I'm sorry if my POV offends anyone.

Stagmom,
Did a kid do that in Mass. too? Alyssa Bustamonte, two miles down the road from where my parents used to live in Missouri, murdered nine-year old Elizabeth Olten to see what it felt like. She said it felt great. I have no words, and don't know if it was from vaccine brain injury, drug injury, or natural meanness.

The basic problem is that there is just so much money that society is willing to allocate to autism, and just so much compassion anyone has to spread around among all those who suffer. All decent people are kind and helpful to anyone with problems who comes into their ambit, but once it reaches the point of one in twenty-five with autism, and you still have all those who have all the other kinds of problems, there's only so much it's fair to expect either of the individual or society. Society is already performing triage to determine the wisest allocation of time and money: my daughter had a full-time para at school for five years, but nearly two years ago, the number of autistic children at my daughter's previous school severely affected enough that they couldn't cope without a para doubled in one year from four to eight. They decided that my daughter had probably improved enough that they could give her para to someone needier. But my daughter hadn't improved that much, and was so disruptive that she was sent to the principal's office nearly every day, and locked in an isolation room. The autism resource specialist intervened to send her to another school and a loving, supportive self-contained autism classroom.

That is the problem. With the number of autistic children doubling every few years, does anyone think that society is going to abandon the neurotypical in public schools as less needy, or the highways or public libraries, to devote every cent of public revenue to one massive problem? Most people can't even begin to comprehend the idea of drug companies having created such a public health epidemic unimpeded.

Then we have the question of whether it's wiser to try to serve the high-functioning autistic kids whose lives may be salvaged to some degree, or the lower-functioning whose conceivable improvement is very limited, absent effective biomedical treatment. We're used to thinking that there's enough for everyone at the table of everything necessary: but what happens in a crisis situation like this vaccine holocaust when there are ten clamoring for attention but only one service available?

I doubt even half the loud minority of adult self advocates with "HFA"-- the ones promoting the whitewashing of the condition-- even have childhood onset autism. Some are but I think that movement is speckled with prescription drug injury collateral who've recast themselves-- or been recast by shrinks-- as having autism.

We now have a whole generation under 40 who've been drugged with Ritalin and other meds since childhood-- a population which has now being conveniently turned into "proof" that autism exists at the same rates across age groups. If incarcerated, as hacker stool pigeon Adrian Lamo was (when he was turned into a govt. informant and ratted out Bradley Manning), these tic-y, obsessive, empathy-impaired paranoid prescription speed addicts may be rediagnosed as having Asperger's. Lamo, after an overdose with prescription psychostimulants and after making it to adulthood without an autism dx, suddenly became an Aspie in jail.

You don't argue with a prison shrink if you want to see the light of day again and the more the dx is Hollywood-ized as the author pointed out, euphemized as the "Einstein disorder," it sure sounds better than "brain damaged by scrip drugs" and they can join a whole astroturf movement of self-designated neurodiverse "geniuses" who are deeply invested in denying the existence of the 85% afflicted with the less pretty form of the condition.

There were stories of systematic rediagnosing in Illinois prisons-- diagnosing adult inmates en masse with autism. It's as if someone on a federal level cried, "We need more adults with autism to disprove the existence of an epidemic!" And voila.

don't forget about Jeffrey Dahmer.

David Moore, Absolutely no one is saying, 'suck it up' to parents who have children with milder autism. It IS absolutely fair, though to be upset and even angry that autism in general seems to be glorified almost and represented by just the 'neurodiverse' people who would even vote against wandering codes (Ari Neeman). I'm sorry but I work in special Ed classes with children who are severely affected and will never be independent. Yes, I can say that is tougher.

John, funny, he never makes the T-shirt, does he? :) K

The description above is one that many of us recognize. It's a great description of a day in the life of a family with an autistic person.

The added problem is that all of this is considered “mental” when the well-meaning? doctor gets into the act. When it comes to actual physical expressions of effects of let's say inflammatory bowel disease the medical professional's mind shuts down. Stomach things are then also “mental.” You can see it in the lack of recommended diagnostic procedures.

At that point there is no such thing as what would normally be seen as deficiency diseases resulting from malabsorption, i.e. 100 broken bones because he can't absorb Vitamin D, or confabulation due to Vitamin B1 deficiency, or seizures that might be the result of potassium deficiency that are treated with seizure medication (Dilantin, Phenobarbital etc.; note: those medicines make the Vitamin D deficiency, rickets, osteomalacia worse) because kids with autism have seizures. I could go on and on. All these things happened to my son. So I know what I am talking about.

David - No, it's not a contest. And we acknowledge every day the worries and very real fears of parents of children with Asperger's who, but virtue of their abilities, are often far MORE exposed to danger than our kids who are sheltered in classrooms and with aides as youngsters, at least. Like the kid in Mass who stabbed a classmate to death to see what it was like. No one wants those worries. We're talking about the campaign to convince the world that autism is Mozart and Einstein - which is malarkey. If they are going to go all revisionist and diagnose post-posthumously, why not diagnose Hitler - he perseverated and had a black and white plan. Why not embrace Jack the Ripper? How about Vlad the Impaler and every despot and dictator who demanded conformity to his set of rules? You can't color this into "us" being the bad guys with our severely affected kids. You can not compare troubles with social life in college, as heart breaking as they might be to a parent, and we agree that they are, to a life in a dayhab with total dependence on poorly paid caregivers.

"My pain is worse than your pain."

Really?

That's what the op-ed by James Terminiello reminded me of. Two or more people trying to claim that their pain, or situation, is worse than somebody else's.

Pain is subjective and only quantifiable and qualifiable by the person experiencing it.

The degree and severity of Autism is subjective as well. That's why it's called a "spectrum."

I agree that those more severely affected should have priority for health services, but that does not mean that we should ignore the needs of the less severely affected, i.e. Asperger's Syndrome.

Try and explain to a parent of a child with Asperger's Syndrome who is constantly bullied, beaten up, ridiculed, called all sorts of names from "retard" to "freak", that their child should just "suck it up and deal with it," and I suspect you're going to have one very angry parent.

I believe hat concentrating on the very high functioning is a way for people to ignore what is really happening with the epidemic. If they paint autism with happy(but different) colors, then nobody has to take responsibility for damaging so many children. No need for safe vaccines, real causes, real cures, necessary services, insurance payouts and in the end--jail time for dozens. It's government, doctor and media deception
Maurine

It surely would be nice if somewhere, some org, some autism group acknowledged the ENTIRE spectrum, including those who have significant challenges but are not considered severe. Seems as if the only appreciation some have for those with higher functioning autism is when they get to include them in their 1 in 50 stats for pushing their agendas. Welcome acknowledge, try to help the entire spectrum from severely affected to mildly affected, ah a mom can dream.........

The reason the public is so complacent and accepting about autism is because they've been brainwashed about it. April is used universally to sell autism as just a condition that's not so bad and that no one is really worried about. The children we see on the 2 minute news stories about autism walks look happy. Their families look happy. They're all having a good time. And we are being duped by this. First of all, even kids with high functioning autism have severe limitations. They're the ones who appear normal, but can't fit in entirely. They're the ones who get arrested, bullied, and can't hold down a job. The parents of severely autistic children never get their fair coverage either. Reports about autism would be truly disturbing if we had to watch kids beating their heads on the wall or chewing on furniture because of pica. The bombshell will be dropped when massive numbers of very disabled autistic children in need of care 24/7 become adults. We are totally unprepared to deal with the autism flood we're facing in the U.S.

Tell it brother! As someone who works with children, I don't like this trend of discussing autism as though it's no problem at all. I often work with children who cannot communicate. Period. And who cannot toilet themselves etc. That's what I did appreciate in a recent autism series in Canadian newspapers. They did, at least, use the example of a child with severe autism and did mention environment as being important as to cause.

Hallelujah! Somebody finally has the guts to come right out and say it. Now cue the clueless idiots who will ask him if he's ever tried the GFCF diet or perhaps taken his kid for violin lessons.
I never thought I could scream this much in one lifetime.

This is a great opinion piece- thank you AoA and NJ.com for this post

Thanks for pointing out this excellent article, and to Bob Moffitt for your comments below on needing to look for the disruption in the brain. I have spent autism awareness month finishing up a second memoir with my 50-year-old son, in which I continue to urge consideration of brain impairments underlying developmental language disorder. With some difficulty, I was finally able to post the following on nj.com:

Many thanks for James Terminiello’s description of autism. I wish I could learn to write that well, and describe what we’ve suffered for most of our lives now with our son who is now 50. He is high functioning, and at age 7 we thought he was cured. By age 17 we realized he would not go to college or be able to achieve any semblance of a normal life.

He speaks and writes well. We just published a second memoir together (available at http://tinyurl.com/d3hqlye ). Still, he stands out like a sore thumb. He is too anxious and hyper-reactive to hold down a real job. That’s why I hired him as a writer, and take him out for a few hours every week from the dismal group home where he lives.

I am the target for a lot of blame, but have not found anyone able, willing, or interested enough to try to help him achieve a better life.

James writes: "I recently saw a t-shirt that read “Autism, Different, Not Less.” Clearly, times have changed, and so has what we call autism. The definition of “autistic” has expanded beyond reasonable bounds, leaving those who truly suffer in the dust."

Recent "60 Minutes" program reported on veterans who have been diagnosed and treated for "post traumatic stress syndrome (PTSD). The program showed the latest "brain scan" (MRI) technology that has opened the "eyes" of doctors .. allowing them to view damaged brains that were never before possible to view. As a result of this new technology .. one veteran who had been diagnosed, treated for PTSD for years .. was relieved to finally be diagnosed with Traumatic Brain Injury (BTI)which was clearly made visible by the new technology. This vet's newly identified brain injury was severe, and, hopefully his new diagnosis will provide him with the treatment and limited expectations his INJURY requires.

The new diagnosis of Traumatic Brain Injury (TBI) does not make the diagnosis of Post Traumatic Stress Syndrome any less serious to those without the brain injury .. but .. those with TBI will now receive the treatment and expectations of recovering from their INJURY.

Hopefully, technology will continue making extraordinary progress .. such as .. MICROARRAY (?) technology that allowed visible discovery of Sutterella bacteria found in the gut of children with autism .. and .. the new MRI imaging power that may hold the key to providing a CLINICAL diagnosis of "prime autism" in our children.

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