Lack of information about AS?

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This just occurred to me.

I think it's funny that almost all of the pages and documentation given about AS list the symptoms and behaviour and how parents can cope with them but give little, or no explanation about WHY these children behave in such a way. My parents had a stockpile of information about AS. But it was all just lists of issues and symptoms and how to be prepared for them. Wouldn't it be easier to get them to understand the root of the behaviours rather than just be able to identify them? I have a reason for everything I do (reasons such as depression, boredom, shyness, jealousy, etc.) To me, everything has a logical explanation, but my parents didnt/dont listen to them cos they think I did these things cos I'm 'unbalanced in the head'. My dad WAS a high school teacher so he may have been like that naturally. Ya know, he was always a 'discipline first, ask questions later or not at all' kind of person.

The only problem that gets explained well is the sensory thing. In fact the vast majority of the symptoms I've read on lists are things caused by depression, anxiety and severe frustration arising from the condition. They are things that 'normal' people experiencing depression, anxiety and frustration for any reason may also do.

I only just had the Theory of Mind explained to me two days ago, and it made so much sense to me! This means I only just found out that one of the main problems with AS is the inability to read other people, something I dont remember ever having heaps of trouble with, but I can't judge if I had trouble with it at the time i was diagnosed cos I didnt find any info about it until now, 10 years later!

Should things like these be explained better so that people new to the condition can understand the reasons behind the things their child/loved one does? ARE these things explained well enough to parents and teachers? Or are they still being given a list of symptoms with no reasons behind anything?

This is a perfect reason why more attention should be given to AUTISTIC ADULTS...I remember watching 20/20 on ABC back in the 1980s, when reporters were making statements like "Researchers don't know WHY autistic kids rock and sway and bang their heads" and I was at home (in my early 20s, never having been diagnosed) screaming at my TV "I KNOW WHY THEY'RE DOING IT! - IT'S A REACTION TO SENSORY OVERLOAD!"

So much information could be gleaned from interviewing those of us who have lived with this condition for 50 years or more, if we weren't INVISIBLE to the media.

There are some things like stacking and ordering that I understand are satisfying and calming but I'm still curious as to why they are satisfying and calming. What basic need does it satisfy psychologically? What does stacking and ordering do to our brains physiologically? Once I asked a friend how a bomb worked and he said " It explodes". I said "I know that but what happens?" He said with frustration " It explodes".

I agree with you. I know some parents with a teenage aspie kid. The father was relaying a story to me that happened last weekend. Long story short, the family went out for an enjoyable evening. When they got ready to go home, their son threw a fit. They kept telling him to stop and the problem just escalated from there. I asked the father what upset his son to begin with. He said he didn't know. I asked if he tried to find out. He said no. I felt ackward explaining to him that his son didn't go crazy for nothing, something upset him, probably something that you didn't even notice and when you just kept telling him to stop it upset him more because he was unable to express to you what the problem was.

That kinda reminds me of my dad. I could be really annoyed about something. Nowhere near the point of flipping out, but then he always seemed to know exactly what to say to set me off. Telling me rather sternly that I need to "stop what I'm doing". Never asking or showing concern as to what the matter was, by the way. Then it becomes "calm down" which is one of the worst thing you can say to someone who's annoyed, because of the implications to their state of mind. Later it turns into "normal people don't act this way". Yep that's right, that's what he would really say! And he continued to say things like that AFTER I was diagnosed! And I'M supposed to be the cold, insensitive one... A lot of the time I just totally lost it, and I can't even remember what annoyed me in the first place cos I was more mad at him after his talks. Yeah, now that I think of it, most of the times I've flipped out, my dad ended up being the primary reason.

Hmm... I wonder how often that's the case with people...

Kamran Nazeer (in his book Send In the Idiots) uses the term "Local Coherence." As he sees it, people on the Spectrum (himself included) need to establish their place in their environment (i.e. "Local Coherence") - especially in times of stress. He gives several examples, using the people he profiles in the book.

For one person, it might take the form of running their fingertips back & forth across the nearest surface - for another, it might take the form of rocking back & forth - for another, it might take the form of putting things in order - etc.

I notice this all the time in my own life. If I'm going to a place for the first time, I will do "reconnaissance" - I'll drive around the area to check it out, then I'll walk up to the building - maybe look in a door - if everything looks & feels right, I go in - but if something seems wrong to me, I'll leave. Often, if I'm just feeling stressed out, I will sit & rock for a while - I guess it makes me feel more in control to do something with my body that is controlled & repetitive.

So (with me, at least) there are physical & mental things going on - in varying degrees. But it all seems to boil down to trying to establish a sense of order in my immediate surroundings (or at least feel like I understand what the situation is.)

That is a big part of why I'm here (that and the the excellent philosophical debates). After (and slightly prior to) my daughter's diagnosis, I loaded up on the usual library of books that parents whose children get an autism diagnosis devour. Some of them are very helpful (I especially liked "Quirky Kids") but none of them really knew why the autistic kids (always kids) did what they did. Only that they did and the parents should have a heads up. My next stop was memoirs and blogs by autistic adults. Temple Grandin was illuminating but is markedly different from my daughter.

When I finally found WP, the sheer number of adults posting here meant that I was bound to read posts from adults with childhood memories that shed light on my daughter. She can't really explain to me what is going on in her head. But there have been enough adults here with posts starting out "when I was a kid..." that I am getting at least a rough idea of some likely possibilities.

Much could be learned from the media interviewing adults on the spectrum (on beyond Temple Grandin, who they have interviewed many times) and I think more helpful info for parents could be written. Writing by adults on the spectrum is currently in the memoir-only stage ("Look Me In The Eye" etc.) but hopefully somebody can write something more generalized from an adult perspective. Because that kind of info is certainly not going to come from the doctors, nor from Simon Baron-Cohen, no matter how much he tries.

Thank you zeichner I'm going to find that book.

Janissy I think your presence here is highly valued. Just saying.

I could certainly use more information. I've been diagnosed over ten years and had remarkably little in that time. I know next to nothing about my disability and how it affects me, or what is different for me than for others around me, or how to explain those things. I'm picking it up a little at a time but I really could use a better knowledge base, as right now I'm having problems at work.

Hi, C-57D,

Have you heard of Tony Attwood?
http://www.tonyattwood.com.au

He's written comprehensive account/s of AS:

"The Complete Guide to Asperger's Syndrome" and much more...all on his site.

A sample of people contributing to our knowledge bank on being Auties, Aspies:

Donna Williams; Genevieve Edmonds and Luke Beardon; Yvonne Fast; Wendy Lawson; Temple Grandin; Marc Segar; Stephen Shore; Liane Holliday Willey.

There are heaps more
Look for free online journal articles for news/latest info/profiles on ASD's + the science mags can have useful stuff too. I read them for free browsing at the newsagency

Me too! I never thought of that before, but I do that. A new gas station was built nearby, but I won't be able to use it until I've walked up to it and reassured myself that everything is as it should be. That example is one that I'm consciously aware of; I don't want to drive up to the pump and discover it has some kind of new feature that I don't know how to operate. But I do it in other situations, too. I need to be sure that I won't end up in a situation where I don't know what to do.

Years ago, I was stationed at Plattsburgh AFB, NY. I decided to drive my car to the ferry that crosses Lake Champlain, and then drive over to Burlington, Vermont, which is very pretty. I had done it as a passenger with someone else several times, and had made an effort to memorize how to do it. I was pretty nervous, but I managed to get there all by myself. But when I got there, there was no place to park, except in parking garages, where you take a ticket, and drive up the ramp. I hadn't practiced that, and didn't have a mental image of how I would do that, so I passed by all the parking garages. So, I turned around and drove home, without getting out of the car. That pretty much sums up the story of my life, come to think of it.

Thanks, Bonny - that all sounds really useful. I have a lot of reading to do..!

I thought I'd heard of Tony Attwood, but it may be a different person by the same name - he can't be the same one who wrote the Blake's 7 novel "Afterlife", can he?

No, C-57D, this TA is not the Sci-Fi author.

Just after I posted my reply to you, I found a Tony Attwood thread here on WP.
Can't remember where though-sorry.

Yes, the quantity of reading is massive on the topic.

I dip in and out of a lot of the ASD readings.

I think I do "recon" too...but not the way everyone else here does it.

I do insane amounts of research when I need information on something; I ask a thousand and one questions, and look up every possible nook and cranny.

If it turns out to not be what I expect, though, I don't dash home; I just take a chance, hope for the best, and do what I can to make it thru successfully.

I encounter a lot of the same problems with my family, and people in general. It surprises me that nobody ever stops to ask me what was going through my head. People have a bad habit of making assumptions when the real answers are readily available.

That's the problem when NTs write books about us. They see us from the outside and can describe how it looks like but they have no idea what we think or feel or react and why.


Willard wrote:

Sometimes rocking means it's simply comfortable, like when listening to music and enjoying it. Or, like other stims, it can be a sign of discomfort, relaxation, nervousness, thoughtfulness or simply something one do because it feels good in some way.
Banging of head or other ways to harm oneself can also be an outlet for rage and frustration.