Some more info here:

http://www.parentcentral.ca/parent/familyhealth/article/821063--toronto-...

Dream Map to a Mind Seized

The animal scientist, activist, and autism memoirist Temple Grandin likewise described how she had to study hundreds of pictures of dogs before she could generalize what the word "dog" meant. Was this what my son experienced? And if so, why not accept things as they were? I could not let it rest, because he kept regressing, and something seemed to be gnawing at his myelin sheaths, his gray matter, his white matter, his guts and blood. I kept having a nagging feeling that to ignore what was happening, or to accept it and work with it, was to enable a potentially progressive illness and give it leave to ravage my son. Day Mom tried to be in the moment and enjoy her son's ever-evolving neuroverse; Night Mom raced against the clock.

I began to feel like Penelope, weaving and unweaving her handiwork each day, making and unmaking her message, waiting for a return. In our house, we learn how to roll a car back and forth with each other, we lose this ability, we learn it again, we lose it again, we put the car back in its box and wait for health to return so we can start all over once more. My son's speech progressions and regressions began to seem as predictable and intractable as the moon cycles. Each month I would wait for the murmurs to begin again and gradually become a babble, a fragment, sometimes a word or even a phrase—only to hear them falter and fade once more before flickering out again altogether. I became so desperately sad each time his voice died away again.

"Our boy sure is cute," my husband said a year ago, watching our child play in a cardboard box decorated with ABC's (the Alphabox, I called it). "Yes, he's very cute," I concurred. My son, excited to hear his beauty thus praised, jumped up and exclaimed proudly, "I'm cute!" A month later, he was struggling even to make an "m" sound and remained nonverbal for eight long weeks. Sign language also came and went, so we began to rely on a series of symbols called the Picture Exchange Communication System.

Last year, the same writer wrote about her son's frightening transition: Little Boy Lost

Memoirs on autism also frequently mention the parents' distress at seeing the spark gradually go out of the eyes of their child as language skills regress and he or she retreats into a self-enclosed world—the dreaded prison of autos, the root meaning of autism.

We took my son on a pilgrimage to the Bronx for an evaluation three months after he had a frightening regression in March. He had been receiving early-intervention services for three months and was improving, and then the light in his eyes began to go out. He stopped looking in my eyes, and when I caught his chin in my hand to look in his face, there was nothing there. He was irritable and spun in circles most of the time, and when he did sit down, he kept pushing the same button on a musical toy over and over and couldn't be engaged. He didn't even like his beloved books anymore. My son was gone—there was no spark in his face, no sign of life, just dead eyes.

The worst part was that I knew he sensed it, too. In the same way that I know when he wants vegetable puffs or puréed fruit by the subtle pitch of his cries, I could tell that he also perceived the change—and feared it. At night he was terrified to go to bed, needing to hold my fingers with one hand and touch my face with the other in order to get the few hours of sleep he managed. Every morning he was different. Another word was gone, another moment of eye contact was lost. He began to cry in a way that was untranslatable. The wails were not meant as messages to be decoded; they were terrified expressions of being beyond expression itself.

The parent of one child whose skills disintegrated when she was 3 recalls his little girl waking up in the middle of the night screaming, "Daddy, can't talk, can't talk!"—and she never spoke again. I thought of this when I heard Julian cry in that way; it was the sound of terror from the edge of the abyss. Every night when his wailing stopped I cried and thought to myself, I am losing him. He is losing himself. And we both know it.

 

 

This is such a heartbreaking condition. I have worked with parents for several decades whose children have autism.  Both these articles talk about genetics. One of the main issues seems to revolve around the issue of children making all their developmental milestones and then becoming autistic. That of course would suggest some environmental trigger. This is where the anti-vaccination crowd steps in. Some have sugeested that many of these children are not makig their milestones and parents just miss that. The other interesting development is the dropping of Aspergers in DSM -V. It will now be simply classified as autism.

As a parent of a child with Aspergers the DSM-V change is of interest. Aspergers has always been considered an ASD so I doubt this change will have large scale ramifications.

I have heard that dropping Asperger's from the DSM-V has implications for American parents, who need officially sanctioned diagnoses in order to access resources and get coverage.

A close friend has Aspergers, as does his eldest child. I have always been mystified by the inclusion of Aspergers in the same class as people who are profoundly disabled, non-verbal and can't live independently, though my friend says that's why it's called a spectrum.

Part of the rise in autism spectrum disorders is the rise in diagnosis, though it's a subject of heated debate on medical boards just how much. In the US, sometimes kids are diagnosed as "Autism spectrum disorder - NOS [not otherwise specified]" even though the drs aren't really sure just what is wrong, so that the parents can get coverage for finding help for their children.

And the whole vaccine thing is so done. That dog won't hunt.

I agree with you on the vaccine thing. It is my understanding that instead of a diagnosis of Aspergers kids will be diagnosed as Autistic. Parents should still be able to access resources.

maybe theres more HMO coverages that include Autism generic; than Aspergers specifically

reading the DSM-5 wiki entry gives out all sorts of conspiracy theory bad vibes from non-disclosure

Part of the difficulty is that unlike conditions such as cancer, diabetes, or heart disease, there is really no physiological way to diagnose autism, it's more on the behaviours, and there certainly is a spectrum.

The other thing is that sometimes we focus too much on labels, that once we have them, it's a case of "okay, now what?" Is the label really helpful in all cases? Where do these labels come from, and who defines them? There are more labels for "psychiatric disorders" than there were before. For example, we don't have shy people, they have "social anxiety disorder," and need to be treated with medication. Or take the example of a student who struggles academically in school and is considered to be "learning disabled," but perhaps this person does really well as a skilled tradesperson, so when you move from one context to another, in some cases you fit in and in others  you don't. Or what about children's entertainers at a street festival? How many of them would be considered to have ADHD, and yet in the context of that street festival, they fit in just fine? None of which changes the fact that these people need support, but then again each one of us needs support in our own unique ways.

Speaking of labels, there's a disturbingly high incidence of people who are Neurologically Typical

Here's a related conversation, although not current

Good stuff - including all those links by Hephaestion, R.I.P. Brings back memories.

Yes. It's high time that medical "science" started looking at some differences as differences, not pathologies. I believe that every single one of us is in need of "treatment". It can take social or individual or chemical or other forms. The key thing is that society should care, in concrete terms. In a particularly anti-human society like the United States, it's astounding that fiddling with diagnostic criteria determines whether someone gets care or not.

Temple Grandin spoke about this (and much else) this morning on CBC Radio 1's The Sunday Edition.

For those who missed this brilliant interview, you can hear it here:

Temple Grandin - The Autistic Brain

ETA: Of course, anyone west of Thunder Bay can still hear it on radio if they prefer!