The perception of AS/ASD

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This weekend, I have really come to the point where I realize just how much people think AS and ASD is all about being disabled. I have to say this because it now affects not only my children but me as well.

When it was just my children and learning they had ASD, I did at first get sad about it, but then through a lot of self searching, and medical text searching, realized it wasn't so bad. Yes, there are issues with being ASD or being a parent of a child with ASD, but that child was no different from the day before he got the diagnosis til the day after. The only change was that all his behavior and language, what not were given a name.

But still, when I tell people that my children are ASD (I'm one of those parents that doesn't believe this fact needs to be hidden, but that culture should learn what they're looking at), they say "Oh, I'm sorry." "It must be so difficult." "How do you manage with two of them?" Okay. If I don't seem sad about it, why are you sorry? Why is it seen as difficult? They were more difficult when I didn't know they were ASD because I didn't know how to help them. And how do I manage with two? Because I'm their mother and want them to be the best they can be.

Okay. Now fast forward this year and a half, to what I was presented with this week. I have AS, no big deal. I suspected it myself, and even joined here with that self-diagnosed assumption. I decided to ask the listserv of parents with kids with ASD for a therapist, much like I did on this board.

After a few days of not getting any response, other than someone else asking who diagnosed me off the list, I get a response yesterday. It sent chills down my spine. Especially since I would much rather be AS than GAD, PD, SP, OCD, and Depressed.

She basically said, "Oh. I bet you want to be NT again." I wasn't NT to begin with! And shouldn't you be looking at me with admiration? (I don't mean that in a gloating way.) Look at all the parents on there that have kids with AS. Now look at me, I have somehow "succeeded" in finding a husband, and living a seemingly normal life, and even having kids. (And still not "recovered" either.)

Then she ended that paragraph, "No one thinks different of you now." (Again, paraphrasing because I can't reveal her exact words on the listserv's bylaws.) Well, why should they think of me different? People on that list have come to recognize me as a very contributing member of their group. I have often times gotten responses off the list thanking me for my words and eloquence. Why should that all of a sudden change just because I'm given an AS label?

Sorry for the rant, but it needed to be said to get it off my chest. I'm not upset about my diagnosis, dammit! I'm upset with the response I get when I tell people who I thought would understand. (So far only told one of the parents I know locally with a child with ASD, she took it in the manner I expected. I told my mom, and got asked "What is that?" followed by "I think your brother has autism too." Then my husband told my mother in law and she responded with "That explains alot." And then the autism parents list because I actually needed their help, and that's the response I get.)

The negative perception of autism is certainly a battle being fought. I think they even declared "war on autism". Sends a pretty bad message.

I'm happy to see you see things positively. I spent years of my life thinking I was less than normal, and had I known what I know now those years I would have been happier.

People will be patronizing, you can't blame them. They just haven't heard anything but the negative message, so it's up to us to show the positive one.

unfortunately, its "impossible" to be a "success" with AS. It is a hindrance, not something to be accepted and understood. This world is in a state of shock. It cant believe so many are so different, yet capable of overcoming such incredulous obstacles. Its unfathomable to them a person on the spectrum can speak eloquently, with conviction and purpose. After all, we're "disabled", "deficient", and at best "distracted". Its never occurred to this society that people who are different, are the same who push the generations forward.

Look at history and you will see it is the people LIKE us(asd in general), not different than us, that have broken down the walls of ignorance. It is the same people who "didnt fit the mold" who end up breaking it. People like Einstein and Leonardo Da Vinci, Sir Issac Newton, Charles Darwin, Samuel Clemens(Mark Twain), Thomas Jefferson, these people who refused to just believe what they were told.

These are the people the world admires, yet fail to realize their simple differences. It was the way their brain was wired that allowed them to reach such heights of greatness. Their legends were molded by their refusal to give in to society's norms. Their obsessions allowed them to reach answers and master techniques and thoughts none before them could comprehend.

The times we live in are unfortunate, only because those ABLE to be different, are condemned instead of commended.

I just saw a special called Autism x6 3 were Asperger's 2 Classic Autism and another PDD (or whatever it's called sorry WP members) Sadly the truth is people see/hear most of Classic Autism like this child who was 6 1/2 but cognitively less than a year old! She was still in diapers. I have a nephew who's 16 months and 2 siblings so imagining them behaving like he does would be sad to a point. You get used to it and accept there problems as a parent as with any physical/psychological issue. Sadly this Classic Autism non verbal blurting sounds etc. IS Autism to the mainstream people don't hear about Asperger's Syndrome as much or other less affecting disorders on the spectrum it's about blurting sounds and being cognively impaired. It's sad IMO that that's what they see.

Next time you tell someone that your children are ASD, and they say "oh, I'm sorry.", just look at them with an expression of amazement, like you think they are incredibly stupid, and ask "Sorry? What on Earth for???? It would be most interesting to hear their next response.....

And next time someone says "It must be so difficult", look at them with an expression of complete bewilderment, and ask "oh? Why is that?", or: "No actually, it is extemely interesting....I'm so glad I didn't have boring ordinary children".

As for other parents of ASD kids - well, a mixed response it to be expected really, especially from NT parents who believe ASD is a disorder/disability/disease/damage.

I decided to respond to the woman on the parents listserv. I did so in the best way I could explaining I knew there was something wrong with me, blah blah blah. I find it to be a line of hope, blah blah blah... Now I get to wait and see the responses to that. But it just irks me that people are like that.. Parents are like that.. Seems to be quite unbelievable.

If I sound judgmental, I apologize. After reading what you wrote, including the short bio, sure, you have something that deviates from the norm a bit. However, just by looking at what you wrote, you are not really what I would "label" disabled. You have a husband for one thing. Anyone who is married obviously has at least a mediocum of social skills. How else can you manage something like marriage? That takes some "ability".

Lots of married people have difficulties though, this doesn't really mean they aren't able to make it through. Sorry, I just don't like to see harsh labels.

As for the kids, I can only speak from the POV of being an "abnormal" child with a parent who was more "normal" (at least as far as the community was concerned) and functional than I.

One thing that drove me crazy was when my mother told people stuff about me. I really did not like that. The reason I didn't is because once she did it often made things worse for me, not better.

But remember, I am high functioning. I don't know if it's the case with everyone. All I can say is my mother talking to others about my issues and labeling me and talking to others about my label and why I was "different" made me feel much more anxious and worse about my situation, made it harder for me to adjust and "fit in" too.

My children are only 3 and 4 yrs old. Once they are old enough to understand their label, I will let them be the ones to say anything if they so feel it's necessary. At this juncture, I feel there are some really appropriate times to say something. I don't go blabbing it to everyone I meet or that they come in contact with. But when a little kid comes up to their mom whom I had already started conversing with, and said "I can't play with him, I don't understand him." I just carefully explain to their mom that he has autism so is delayed with speech. What happens in the majority of cases is that the mom will tell their kid that they don't have to talk with my son to play with him.

As for the marriage thing, it is pertinent to understand that my husband initiated, and not from a real world. We met online on a video game. The greater portion of our "dating" time was online. I am much better with words online than I am in real life. I also don't make as many obvious blunders in type than I do in speech. Also, my husband would not be considered NT either. He has ADHD. My continuous thoughts go with his scrambled thoughts quite well.

I do still have quite the difficult time making friends in real life. I would consider only a couple of people to be people I can talk with. One is my oldest son's best friend's mom. Of note, her son is also ASD, and she has many AS traits. I don't generally feel comfortable talking with most people.

I haven't ever been able to hold a job for more than 3-4 mos at a time. I wasn't able to finish college because of the pressure. I only learned how to drive this summer just before turning 26. These are all things I find to be "unsuccessful." Yes, I was lucky enough to find a mate, but there are still so many things I fell short of. Because of my persistance, I do plan on going back to finish college, possibly even get a master's or PhD. Hopefully, I'll be able to teach at a college or university so that all I really have to get by with is knowing the things that intrigue me the most. (Let's face it, most people don't go to their astronomy professors for a little chit chat.)

You get the point, I think. Just being married is not a measure of success. It's all of your life as a success. And marriage is only one aspect of it.

From what I have experienced, finding good friends is not easy anyway. Talking to everyone doesn't guarantee friendship with them for anyone.

I can talk to lots of people, will most of them want to be my friend afterward, most likely not. I just don't have that kind of luck, no matter what I do, and believe me, I have tried.

So, I don't decieve myself about that. I just think that if I can find that rare person I would be really fortunate.

Like I said in my other post, your life does deviate from the norm somewhat, if there is a norm, but it sounds to me like there are a lot of good things happening, shouldn't be overshadowed by other issues. I wasn't trying to discount your problems, just saying you can overcome them, I guess.

I think it's a good idea to see how the children react to the open discussions with others. Everyone is different. Maybe they won't mind and it will help them be accepted. I remember my mom's open discussions about me being very uncomfortable and had to mention it.

It's like that with all disabilities. And as with ASDs, people do not understand how people with these many other impairments are not deficient or lacking either.

I am convinced of that the perception of ASD can and should only truly change if the perception of disabilities in general changes for the better.

Just heard this today (it was said without ill intent or anything):
If people say 'the disabled and those with ADHD', just to stay clear of that ADHD can be disabling in our society, when met with common expectations, I think it's wrong.

I think that ASDs should also not be a 'special disability' that is actually not a disability and just a 'difference without the word disability', would be just turning ignorance and exclusion to personal profit. Like saying, well I have ADHD, or well, I have ASD, and while I have the right to be accepted as a variance of normality, you with your learning disability, motor disorders or your Down's are truly disabled and different from us.

Considering that, I think that before trying to change the perception of ASD before all, both attempts should be made -

to bring a change of understanding 'disability' and being 'disabled' and what, as a personal agenda, ASDs mean.

Well, it's not like the understanding of disabilities could be changed without pointing at those real people, showing just how normal-feeling and everyday like it is to work with dyslexia or a multiple disabled person.

In my country there's an agenda to make Asperger's (maybe classical too) a not-a-disability, while being ignorant of people with other disabilities. It scares me. I wonder if this is an expression of fear towards other differences?

I picked a voluntary job in which I'd have the time and the chance to meet people with just any sort of disability, work with them, help care for them, help educate them. So far, all us 23 or 24 people do not treat the disabled kids and youths - with disability of any kind - any other than, well, normal. It's just the kids to us - not the 'disabled kids', just the, dunno, Susan, Anne, Jerome (fictional names).

I like that. Disability understood as a term describing needs that are not normally met.

When for example entering a building that has stairs but no elevator in which a wheelchair or similar fits in, because people 10 or 50 years ago didn't consider this when building it. Or just remembering to think of that unlike the other 9 children, the 10th kid will not just stand and remain where you tell it to remain, but wander off unless for example you tell another kid to watch out for it. Or just accepting that someone can't speak and instead to pay the attention to how this person communicates. Or changing diaper and helping to eat, whatever.

Not people saying to parents 'Oh it must be so hard' but instead 'What are you doing to help with any difficulties and how can I help?' (by informing, helping by being accepting when a child's being difficult and overloaded in a shop, encouraging the own to child to invite the other child over to play like with any other friendship, stopping saying stuff like 'I can't imagine it' and 'I wouldn't be able to do it, I'd be scared!' or 'is he/she dangerous?' etc...)

But people hear, oh, disability, get the person out the room, I want nothing to do with it! (In front of the person in question and other people...)

Never get how it's acceptable to ask such question and making such remarks about how a person 'could never work with disabled people', but it's totally utterly not acceptable to say 'I could never work with Turkish, Greek, German, English, American, Asian, etc... people'.

Or 'how can you invite that Egyptian child into your home to let her play with your child? She must be so difficult!'.

Why is that not okay if 'you let your child play with the Down's kid?' is perfectly okay to say out loud!

Yes, I agree with Sora. People's reactions and perceptions need to change and the black/white thinking should be altered.

The attitudes can be defeatist, people trying to seperate themselves by saying things like "Oh it must be so difficult." How is that supposed to make a parent feel?

I also think way too much is put into labels, not enough into individuals. Is AS disabling? Can anything be disabling under the right circumstances? Anytime someone grows up in an environment of misunderstanding, rejection, frustration, confusion, stereotyping, stigmatizing, isolation, etc. it can be "disabling" this goes for anyone.


I still believe everyone is more capable than given credit.