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.

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 ;-)

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.

Alain

Stagmom was being ironic.

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!)

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.

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?

don't forget about Jeffrey Dahmer.

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.

"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.

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.........

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.

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

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.