A Look at the Spectrum

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..if you are lucky enough to be able to afford the "label"

I am an adult with a support network...but I worry about what happens when that support network goes away and i am left an awkward, quasi-unemployable middle-aged woman.

I have a son with PDD-NOS, had speech delay, and also relative with Asperger, the same age, who spoke early and had early intense special interests and a high IQ, but of course low Emotional Q, and temper problems. Both on the spectrum, but they are very, very different. They are about the same age. At a young age, my son with PDD-NOS seemed to have the most severe problem - he wouldn't talk for one, and he had sensory sensitivities, loud noises, sudden turn off of lights would make him scream. He did the old spinning wheels, flapping hands, and could have spent hours in the sink watching the water run. He started getting help at age 2. We then noticed he was also smart, but in a more spacial way. He was a visual learner. Could put together puzzles upside down very quickly, and he wrote his name at age 2 before he could really talk even. (we believe he has hyperlexia, also seems to be a math whiz). At school however, he could not name his classmates from their pictures, and had 'personal space' issues. He has been having intense help (mostly from me) to help with his shortcomings. One example - when he was learning to speak, when I would show him my fingers counting the syllables of a word as I said them, he seemed to understand better. Veg-ta-ble. I had a few Hellen Keller style breakthrough moments with him when he was little - it was amazing to see how differently he processes things!

The other seemed advanced for his age, and we thought all was well and we had a smart kid on our hands. Had a huge vocabulary at a very young age, and knew every detail about his favorite topic. We joked we could put him on Jay Leno and see who could name the most car models from a picture. He would have meltdowns and get angry at himself easily, but we chalked it up to being quirky smart.

Now as they are getting older, the one who was most behind is becoming better socially than the one who we thought was fine and was more advance early on. The PDD-NOS kid has seemed to have grown out of what we thought might be debilitating autism, and is able to make friends and joke and kid around much better than the now even more sensitive one that has Aspergers. The Asperger guy's special interests are all he talks about, and he doesn't look at anyone at all when he talks, forgets to say goodbye, doesn't register on his radar we don't want to know every detail about a president from the 1800s, etc.. but the PDD-NOS one who had help early-on seems to be more flexible now.

So - trying to keep to the topic - We were told they are both on the spectrum, but it's not like it's even a linear thing. They are in different places, and it seems like more of a 3-D or beyond model might explain the spectrum better than what color on the rainbow they stand. It also appears to be a moving target, at least for these young guys. One has moved "up" the other has slipped "down". There are really no two completely alike, or on the same developmental path. The hardest thing I deal with as a parent of a PDD-NOS kid, is dealing with teachers who work with my kid based on their experience of a different child that has come before him. I fight to have them reboot their thinking, and to take a fresh look, because what worked for others, may backfire with mine. They like to put 'procedures' in place for helping kids with "ASD" but it really is case-by-case, anti-intuitive. It takes an open-minded person to be able to work with these kids to help them get to their individual full potential.

I agree with you Willard that the brilliant dishwasher is disabled but I wonder if society didn't have so many social rules that he could function better in his field. I also do not agree with the idea that everyone is on the spectrum- How can you explain a different brain wiring that way? But my original question was not worded well. The thread had already started before I realized my curiosity mainly centers around the PDD-NOS diagnosis and why the language delay is so important in the distinction between Asperger's and Kanner's. Someone suggested earlier that maybe eventually there will be just a broad definition of Autism and people will be assessed at their level of functioning.

I didn't mean to come off as we are all different and yet the same la la la- I guess I went somewhat off topic even on my own original post- in the conversation with the family member that I had I was wondering how much of the disability is because society has such rigid rules for behavior. But that's a moot point because things are not likely to change.

I think the aspie numbers will increase dramatically for 2 reasons:

1. Awareness. We're still near the beginning.
2. It's transitioning from being defined by the impairment, disability, and disease features, to being defined by the neurological differences.

As the specific neurological variations are understood better, there will be more sub-categories identified, and there will always be a continuum based on the types of accommodation required. The whole idea of a 'typical' general population is becoming obsolete.

I think perhaps I misunderstood your reaction to the 'all people are on the spectrum' comments; my intent was to illustrate how convoluted a concept that is. In rereading, I think we're soundly in agreement. My apologies.


M.

Thank you guys for clearing that up...
I re-read it many times,
I thought I was crazy or something.

I think it will broaden over time as, there are so many different qualities that various people have within the spectrum therefore, one can't say that AS is this or that actually, everbody within the spectrum as a whole is not a mirror image of one another though, some characteristics are shown in some and not seen in others.. Still, the more that is learned the greater the understanding about AS and the entire spectrum!! !!

About 'we are all on the spectrum somewhere' - I know a lot of people who fit some of the criteria for Aspergers, but are so-called 'NTs'. Indeed, the impostion of routines on other people is a very 'NT' thing to do, despie it being in the criteria for Aspergers.