I appreciate the views and perspectives of the adults on the spectrum who post here because it gives me a glimpse of what the future may hold for my own child, and does a lot to counter-act the negativity commonly presented in the media about autism. But I wish sometimes that they would appreciate that the parents who post here are trying to do the best they can for their children, and that even though they (the adults on the spectrum) might not agree with the parent’s views, we know our own children best. I’m not talking about the people who are trying the potentially harmful “experimental” treatments, but sometimes I feel as though by enrolling my son in an ABA program, I am guilty of some neurotypical plot to assimilate all autistics into mainstream society, and that’s just bunk. My son *loves* his ABA therapists, and loves going to his ABA program. One of his teachers recently described him as a “joy to work with”. Does this sound like a program that is “painful and cruel”?

There’s been a lot of discussion recently on inclusion and accommodation on this board recently, and whether or not an autistic child can help they way there behave in public, and what that child’s parents obligations are to society with regards to that behavior. Certainly I am aware of my son’s limitations, and what he can and cannot tolerate. Certainly I am aware that certain environments are intolerable for him, and I try to minimize his exposure to those environments (mostly for his sake). But I also know that he knows what our expectations are of him, and he’s intelligent enough and self-aware enough to know when he’s misbehaving. There seems to be the assumption that kids with autism can’t help their behavior, and while that’s sometimes true, other times they’re just being like any other kid, and need to be reminded of where the limits are. Saying that the world needs to accommodate them at all times is like saying that they can’t learn, and personally I find that incredibly insulting and condescending. (Sorry, I might have gotten off-topic a bit).

I completely agree with you, and this is how I am raising my son. I try very hard to listen to him and what he wants to do or not do.

He is quite game to try things and tells me what he wants to do. We tried the Circus Smirkus last Monday. He had his earmuffs on, and we sat near an exit to take breaks. He knew it would be loud but really loves the unicycles (wants to ride a unicycle one day). It was VERY LOUD! I could hardly stand it, but he wanted to do it, he said. We had to wait 45 minutes, then watched it for 30 minutes, and he wanted a break, then said he wanted to go home, so we did. He got to see the unicycles and some other stuff, he loved it! He got enough. That night he said he wanted to go back again the next day! But we couldn’t.

He just finished summer day camp, and absolutely loved it! He got two awards today! He is looking forward to going to a small production for kids of The Ugly Duckling, says as long as he has his ear muffs, he wants to see it!

I have never forced him to look at people in the eyes and specifically told the early therapists not to do that. He now understands that to get someones attention, he looks towards them, but it doesn’t have to be in the eyes.

I try to anticipate any changes or sensory stimulations that could be overwhelming and strategize with him on what will help or that he may not want to do something. But he has insisted on doing a lot of things that have surprised me, because they are very loud, but he wears earmuffs and takes breaks and sometimes cuts it short, and that’s fine with me, whatever he enjoys and wants to do.

And I would much rather have him be honest and frank.

Most of all, I want him to be happy. I want him to have a healthy good self-esteem.

Thank you so much!

Some matters are simple.

Stop equating eye contact with listening. Stop equating eye contact with “respect” as well. Making eye contact part of therapy is stupid. It is not an emotional problem — it’s you wanting my “complete attention” and signs I care about you.

Stop equating social mimicry / norms with some sort of intelligence. I hate the “multiple intelligence” people: “Oh, you lack emotional and social intelligence.” No, I don’t. And I am increasingly resentful of such claims. Mimicry of lies and social customs is not intelligence — it’s lying. Explain the need for therapies that teach lying, please.

Sensory integration? Again, this is like teaching someone to tolerate pain. They do this in the martial arts. I suppose parents are proud that their child can take being pounded in the stomach without complaining? Not complaining is a skill? Not admitting I’m in distress or pain is a good thing?

Sure, I bet parents are thrilled that I can “be with other people” and engage in those ever important “social events” that others value.

Such lessons cause someone like myself to think I must be “broken” and “damaged” because the best I can do is fake normalcy to make other people more comfortable.

People ask if I’m not better off with “skills” to deal with the world. I am if I think the world is better than me — which is a lousy perspective.

I’m sure people think the therapy is great because the patient is made to appear more “normal” of “loving” or whatever. That’s pretty selfish of other people.

My own research points to these problems existing online, as well, because social norms are simply recreated online in various forms. So, technology is not the answer — changes in attitudes will be.

Learning how to cope with stress is a good skill. Learning to lie about the stress is not. Avoiding meltdowns is good… being told you should never have them is not, since it ignores whatever the causes might be.

You want skills that do matter – communication. Honest, unfiltered, communication. In my case, I loved typewriters (and still do). Computers are almost as good.

But, people have to listen.

keep on writing——

ditto your last sentence a couple times over.

Essentially I think a lot of it comes down to fear, though. Some people seem to fear that IF autism is NOT “officially” defined as something awful, their children will not be granted the help they need. I have worried about this plenty in my own self-advocacy efforts, believe me, because I do NOT want to do anything that would hinder autistic kids’ or adults’ access to needed services. I have agonized long and hard over whether my publicly representing myself as an autistic self-advocate might undermine someone else’s efforts to deal with more “severe” issues than the ones I experience.

Initially I was very apprehensive *because* of this concern, but over time as I learned more about the variety of autistic experience and abilities and such, it became quite clear to me that the only reason to deny that in some ways I am indeed “like” some of the persons described as “severe” would be due to shame on my part — shame I don’t have.

I am not interested in claiming privilege garnered through pretense at disassociating myself from others who make sense to me in deep ways even though people would probably consider me “HFA” and them “LFA” based on things like language use and “independent living skills”.

I’ve fought long and hard to get the skills I do have in those areas, and whenever anyone tries to insist that people like me have it “easy”, that we don’t “deserve” any help, that we could actually do everything the “standard” way but choose not to out of malingering or some desire to be “special”, it feels like I am being kicked in the face.

I wish there was some way to prove empirically that by self-advocacy and fighting for a more tolerant, flexible, understanding culture, autistic adults who communicate online and elsewhere are going to be helping autistic people of all ability types/levels live better and less difficult lives, but it seems to be one of those things that either you see or you don’t.

All I can hope, I guess, is that eventually more people see that self-advocacy efforts by those autistics who can “write long Internet essays” are not, in fact, hurting their kids or them (if they are autistics who would take “cures” if available). And that regardless of one’s thoughts on “cure” and whether autism is a “difference” or a “disease”, a more flexible and tolerant society that understands the INTERdependence of all humanity will help all of us.

What I find disturbing is that such as you presumes to know what ‘neurodiversity’ is about, period. Those of us, associated with the Hub over many years have no such such guiding certainties, however comforting that might be as a substitute for thinking.

May I ask a question?

What could have been different about your educational experience that would have helped and not made you feel like you were “faking normalcy”?

Screw it. I might want to be “normal” but the pain of being “trained” to act normal is not the same as really being normal. Sure, it helps me professionally, but there is a trade-off no one seems to appreciate.

Then again, I have to be reminded that the world expects certain things and I must fit in or I’ll end up being dependent on others, sitting at home useless.

At least I can definitely earn enough to be independent… even if the cost is several lost days each month. Yippeee.

When I generate complex computer code in my mind, seeing it float in space, I feel useful. When I solve a puzzle concerning dithering ratios and visual perception, I feel useful.

My wife asks me if I would prefer to not read multiple languages. Maybe I’d rather not do boolean math in my head. Maybe I’d like to lose the extreme focus I can maintain on projects I love. And I suppose she is right.

Then, I realize I’m stuck at home most days. I am not “normal” and I do need to work around my mind / body limits.

I have one close friend. My wife. I don’t take walks, I can’t do downtown. I had to stop riding my bike since we moved to MN — but I do manage the scooter twice a week about 60 percent of the time. (My wife drives me when I can’t deal with the streets.)

I don’t do staff gatherings. I skipped several graduate school events. I am isolated.

So, gifts? I have some. Price for gifts? Long periods of being trapped, non-verbal, shaking, rocking, lost in my own overwhelmed mind.

Not a good trade. It should be, I guess, but it just isn’t. I’d rather trade my supposed high IQ for a few more social connections and the ability to walk downtown.

Just some random thoughts from an HFA individual.

One reason I can see what Charlie has, is, as not a tragedy is from the experience of life with my very ADHD husband. It’s not as simple as saying that ADHD is good or bad. ADHD causes Jim some profound and painful struggles and it’s affected much, and much more, in his life. But there is something about how his being able to pay attention, or not pay attention, to many things are once; to have his mind continually focused on the next thing, to rarely be able to sit down for long periods of time without lots of effort: These have had imperfect benefits.

@Emily, I haven’t seen the X-Men, though maybe I should think of our little family of 3 as a variant thereof.