Aspies For Freedom

I have found from writing and discussing issues relating to autism on NT parents forums, that sometimes there can be such an underlying anger and hostility towards the people on the spectrum who post.
This happens quite a lot on some, though many are cordial and reasonable.

I have been wondering why, and now think that there could be two factors.
One is that particular parents are resentful of the fact that the adults on the spectrum who post are much more able than their own children (which is natural as we are older and more likely to be able) and they dont like the fact that we should comment on autism at all as we are not completely disabled.

The other factor is that we represent the autism that they fear and hate, one describes wanting to fight and battle autism, maybe they turn that anger with autism itself, against us.

It is strange how on the one hand some say that they want their children to be treated well in society, yet they cant see that their own kids will grow up and become adults like us, and they see no wrong in being hostile and critical, they are perpetuating the vicious circle.

Well in part its a culmination of having this happen numerous times, but one incident that happened today, of bitter anger being directed to a group of posters on the spectrum, and it made me think deeper about the causes, and any psychological explanations behind it.

we cannot speak for those who are lower-functioning because we are higher-functioning, but those who are not on the spectrum at all can

or even better...

no "AS sufferer" is qualified to help with our problems (rough quote from an actual conversation with someone)

The other option is that we remind them of their own mortality because we are something they cannot explain but still we are here. This might also explain why some are so quick to want a cure because it removes the problem so they don't have to think about something that is beyond their control. Insecurity about their own existence. Human nature basically, they are on the defensive. Which also explains why they lash out at us.

Maybe autistic adults get a negative reaction from parents of autistic kids because they have autistic characteristics themselves which they repress and wish to obliterate, and their own hostility towards some of their own characteristics spills over as negative attitudes towards others who display those characteristics. Some people from AS families make a conscius decision to aspire to be NT and embrace an NT type value system, which requires a lot of hard work if it is against their own natural profile of abilities. These people can have a hostile attitude towards people who don't spend a lot of time learning about social stuff and trying to build up a social network and social status. The attitude is "If I try this hard why don't you?" These people are like guitar strings that are ready to snap at any time. They aren't happy. I don't aspire to be as aspiriational.

I am sure everyone can remember a time in their life when they were mean to someone who was an outsider. When outsiders speak up for their right to be different and accepted as different that reminds us all of our own guilt, and obviously not everyone appreciates being reminded of their own guilt. It is easier to blame the characteristics of the outsider as the provocation for their teasing or bullying or discrimination, rather than themselves.

Maybe the two of you would have managed and 'grown into the environment'. But I think the mother was right. Personally, when I went out on my own without any support, I floundered. And I mean, totally and utterly floundered. I completely messed up in any job, did very poorly living on my own, and could have used a lot of help. It would have been great if I would have had somebody who would have coached me in daily living and coping skills, and slowly eased me into being part of the working world, smoothing the way for me. It would have spared me a lot of grief.

But since I didn't trust anybody, I put up a fake front, and let my family and acquaintances (I had no real friends) believe that I was doing fine. Even though I have a terrible marriage, I don't know what would have become of me if I had not married. At least I was looked after financially, had a place to live and children to look after who needed me. One reason I can't divorce Ken is, that I can't manage on my own. Who would look after me and deal with all the things I am incapable of dealing with myself? Of course, Ken is well aware of that, and uses it against me. It's a tricky situation.

I know a young man, who I believe is 28 years old as well, who sounds so much like this young man Mike, it's almost scary. This guy has never been diagnosed (he was dragged from Psychiatrist to Psychologist to counselors and back for years, without getting the proper diagnosis, until he gave up), and hates Psychiatrists so much, that he won't go and get diagnosed now. He obviously has AS, and he is so much like me when I was younger.

This young man never had any help, dropped out of high school at the age of 16, because he couldn't handle school any longer and has been working in his mother's bookstore ever since. He is very smart (but believes he is stupid, because of his poor achievement record) and has zero self esteem. His mother is retiring this year, and they have no idea what he is going to do. He has NO living skills, no education, no work skills, no social skills.

If he would be able to get the kind of help Mike got, that would be fabulous. I am working on this young man to get him to get officially diagnosed, so he can get some appropriate help. But he is so suspicious, that he has a hard time trusting anybody. Even though I was his friend before I even heard of AS (I always liked him, because I sensed we had something in common), he now thinks I am sent by our pastor or his mother when I go to talk to him.

Anyway, not everybody with AS is so high functioning that they are able to look after themselves and learn the skills to be independent enough to live on their own without help.

Okay, Stella, after understanding where you are coming from, your comments make more sense to me. You are right, a lot of that 'help' out there isn't very helpful. But at least the somewhat sheltered living conditions you (and this guy Mike) are living in are helpful. If I wasn't married, I'd probably would have ended up being homeless like you at some point as well, and would require assisted living, too.

As for your IQ, I don't know who tested you and what standards they used (and a lot of those tests, maybe all of them, aren't suitable for autistic people anyway), but after reading a lot of your very well written and well thought out posts, I don't believe for a minute that your IQ is REALLY 70. Even if the 'experts' say so. I don't trust any experts any more than my own research can confirm.

And your confusion with direction has nothing to do with IQ, as far as I am concerned. And neither do any of the other mental 'glitches'. They sound to me like 'crossed wiring' in your brain somewhere.

I sometimes have trouble with separating reality from daydreaming. I have to consciously remind myself that 'zoning out' and letting my eyes go out of focus while driving isn't safe, and have to force myself to stop it, often telling myself out loud. While that doesn't happen often (fortunately), it does happen. I find it so much easier to just live in a dream world and getting lost in it than dealing with reality.

I remember several times as a kid I'd get deeper and deeper, for weeks on end, into this dreamworld. I didn't hear what people were saying, and didn't talk to anybody. Nobody seemed to ever have wondered about that. Somehow I always managed to come back into painful reality, before I got lost forever. But it would sure have been easier to stay there and never come back. I wonder how many insane people are just people like me who couldn't survive in this harsh world any longer, and just slipped into their dream world to the point of no return.

I had the same problems (and many others) as a child, but nobody ever suggested that I might be autistic. And looking at my sister now, she not only acts autistic, but even looks very odd. All her mannerisms, speech etc. are so obviously 'off', that I am astounded that nobody ever suggested that she is autistic before I did. But since I can't observe myself, maybe I am not much different, I don't know.

I was always aware of the fact that I was different. When I asked her a month ago if she thought she was different from the majority of people, she really, honestly didn't think so. Despite being called stupid, clumsy, naive, weird all her life, being bullied and made fun of and misunderstood (leading to several family feuds with some NT brothers, who didn't understand her at all), she still thought she was like everybody else. Astounding.

Sassafrss said "This is what I think about the parents vs. adult autists issue: I wish we could all stop picking on each other."

I know what you mean, it would be good if everyone could get along, but parents are asking for a cure, and funding experiements and research for a cure and pre natal tests.
Adults with autism are not telling NT parents that they should change, be cured, or be wiped out, THAT is the big difference.

Its not dissimilar to saying to a racist group, and an ethnic group, lets get along and stop picking on each other. Until the whole basis of their views are changed, where one wants the eradication of the other, how can there be agreement?

hmmm... if autism is 90% genetically inherited, then IS there such a thing as an NT parent?  hmm?

Well one of them could be NT, and the other one be on the spectrum. But also you can be a carrier of something and not show it, like with Fragile x, many people with Fragile x have autism too, and it is carried genetically, with only some showing it.

As with many genetically inherited traits, I believe the autism gene will often jump a generation. I believe my husband's father might have been an aspie. Ken is definitely NT with maybe some AS traits (like no empathy at all), and his brother is NT as well.

I am an aspie (and inherited it from my father, along with three of my six brothers and my sister). Ken and I have five NT children (two with some AS traits).

With Ken's father it's skipped two generations already. I am watching my grandchildren closely. With five kids, we'll have quite a few grandchildren eventually (only the oldest one has kids this far, but the next two both got married last summer). I believe the husband of my oldest daughter has some AS traits. The next one certainly doesn't, he is a very sweet, considerate NT (and his wife, our second daughter, couldn't be more NT if she tried). My son, who has AS traits, married a girl who, in my opinion, has AS traits as well (they are both nerds, really, with IQs in the very gifted range, and very intellectual).

First I'd like to say one thing, I have thought of Stella as having an IQ well above average from her interesting and thoughtful posts; an IQ score of 70 is totally inconsistent with my idea of Stella. Having said that I have often been amazed at the things that aspies who write intelligently say they can't do.

I've got to make some comments about this section from the piece by the mother about her adult autistic son;

"By Fifth Grade he was fully mainstreamed with Resource Room. Yet he struggled. He never learned the skills that he needed, to be fully mainstreamed. He was lacking in many of the needed skills for doing higher-level academics e.g., research, writing a term paper etc. In addition he lacked Executive Function. Which means, difficulty engaging in planning activities, problems with organizational skills, impulsivity, preservation, lack of future orientation (transition problems) difficulty with self-monitoring, both in terms of accuracy and progress toward a goal. "

I often make critical comments about the idea of executive dysfunction, because so often I see characteristics that I have or once had listed as manifestations of "Executive dysfunction", but I am pretty sure those problems were the result of compleletly different causes. I believe, at least in my case, executive dysfunction is an incorrect explanation, one which has very negative implications as well if one considers the relationship between frontal lobe damage and anti-social behaviour.
When I was a teenager like the young man described I had a "lack of future orientation" and I wasn't organised or self-aware or goal orientated. But I don't believe this is because my brain is impaired in an ability to plan. I believe this was a result of a complete and utter lack of engagement in my own life. I had no sense of ownership of my life. I did not feel that I had any control over the things that happened to me. I was just along for the ride, I knew I would never get a go at driving the car, nor have any say in where we were going to go to.

Why did I feel so totally disengaged from my life? I'm not really sure, to be honest, it was such a long time ago. But I do know that I never felt much sense of kinship or closeness with most of my closest relatives, and I did not trust or respect the adults in my life much. Many of them did not live up to my moral standards, which weren't that unreasonable. I only had one trusted friend to talk to. I felt alone in a world run by irrational and immoral creatures. In such a situation it is absurd to expect a person to make plans for their own future. I didn't even feel that I had a niche in the present.

I was not motivated because the things that other people thought I would enjoy were not enjoyable for me, and the things that I did find enjoyable were nothing like the favourite activities or things of my NT peers. I had no interest in sport. I didn't care much either way what my teachers or parents or peers thought of me. My academic ranking in the class or achievement awards were of little interest to me. But I had a passion for certain subjects and things. So the rewards that others offered as motivation for me had no effect.

I know today that there are still some kinds of plans that I choose not to think about. I have the greatest trouble finding enthusiasm for making plans that involve NT adults. There is no predicting what silly thing they are likely to do or object to. They are not reliable. They have quite a different set of values as myself and my crowd, so I find I have to always be careful not to say things to offend them. My brain can plan and organise just as well as the average person, it's just the human element that is always the spanner in the works.

If NT parents think the words "executive dysfunction" give them the key to understanding their AS offspring, I'm afraid there could be a gulf a mile wide between parent and offspring that they still can't see.

I don't like when people tell me what my IQ "really" is or isn't.  It sounds as if they think IQ is a meaningful concept.  If they didn't believe in IQ tests, they wouldn't say "That's not your real IQ," they'd just say IQ tests are garbage in general.

I have been tested three times and the results were totally different each time.  Age 5 it was gifted, age 15 it was slightly above average, age 22 it was low average/borderline depending on who you ask.  All that I think this shows is that my ability to take IQ tests has not changed much over time, and that the ability to take IQ tests is all that IQ tests measure.  I don't believe it is useful to tell me that one or the other score was the "real" score.  None of them are real.  All of them are meaningless.  It is almost insulting to tell me that any one of these is or isn't my "real IQ", that makes it sound as if there is a "real IQ" out there to be found.

To be more on topic, I agree that one of the big problems is that we show autism is lifelong.  I have seen some parents be incredibly saddened when they meet autistic adults.  Because we are (in their minds) what their kids will be if they are not cured.  And we are not good enough, not cured enough.

Not that that mindset is universal, far from it.  But it's common.

to quote:  
no "AS sufferer" is qualified to help with our problems (rough quote from an actual conversation with someone)


For what it is worth, I'm aghast at this.  How ignorant, and what a terrible loss for the child who might have been helped by something you had to offer.

Mom of Hrick