Parents of AS and AS themselves at odds? Why?

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I'm a member of Cafemom, which is pretty much like a MySpace type thing but only for moms. It's one of my addictions...it has a lot more inviting atmosphere because there's not people just going around insulting each other in the discussion groups like on MySpace LOL. People are a lot more mature....either because they are all women or because they are all moms? Not sure.

But anyway, ever since I found out I have Asperger's, I've been looking at the autism groups on Cafemom, of which there are LOTS, but all I get from reading the posts is a defensive reaction, not supportive at all. All the groups are for moms of kids who have autism. There wasn't one for people WITH autism...actually, I ended up making one. But why is it that I get the feeling that parents of autistic kids are "the enemy"? I guess enemy isn't the right word...but I cannot join in a conversation with them because they are so set in their opinions of autism that they don't seem to want to know my input. They talk about their kids like the kids are so helpless, they don't have any input...even teenage kids are talked about like they're 2 year olds. If I give advise about how I felt as a kid in a situation and what I think would rectify it, no one replies, they just go on making their false generalizations about their kids like I'm not even there.

My question is, shouldn't the parents of autistic kids and those who ARE autistic be "on the same side"? Why does it seem like they're just as much "the opposition" as ignorant people who don't know anything about autism? If your kid has a disorder that you couldn't understand, wouldn't you WANT to find out what they're thinking?

I have one friend on there who is a parent of high-functioning autistic teenager. She is the ONLY one I've found who is actually fascinated with learning how autistics themselves view things so that she can help her daughter. She has been a great friend, and she actually lead me to finding out I had Asperger's. She agrees that she can't stand the parents' groups too, so it's not just me feeling this way because I have AS.

Ideally, yes. NT parents of autistic children should welcome input from autisitic adults to get the "inside scoop" about what may be going on with their kids. As an NT parent of an autistic child, I have no idea why these moms aren't turning to you for helpful insight. Myself and lots of other NT people here on Wrong Planet are here mainly for that reason. (Although I do love a good philospohical debate over in the Philosophy section.) Why do these moms discount your insight into their kids? I have no idea. It seems so counter-productive to ignore somebody with true "inside scoop" experience.

I've been to sites like that before and they seemed like such a downer because everybody was throwing up their hands in despair and nobody had any answers (since everybody was NT). I came here wondering about things like meltdowns and self injury and actually got answers from people who could say "this is what it felt like to me and this is what helped me". That's info I can take to the bank, so to speak. These moms don't want that? Oh well. Not much to be done about that. I have no idea why they do that.

ah a great battle between NT and AS. well first, I doubt they really want help since serious help and changes are usually very demanding. thus they probably just want to have a chit-chat and some kind of relief on that forum.

anyway, the discovery of my life was when I finally got that I will never comprehend my NT mother but still can love her and appreciate her. she never got me but like i said that makes life interesting. appreciating diversity pays off eventually.
my little boy has AS traits and I think he will benefit greatly for having AS parents however you can not imprint your knowledge on others if they do not want it or can not accept it.

When a mother finds out there child is autistic there's usually a lot of emotions, especailly if the child has been diagnosed late. It's a lot easier to deal with the shame by branding autism the enemy, picturing the child as lazy or not bothering. Likewise, when dealing with the fact that their child might not achieve as much as others, it's easier to just write them off instead of giving them an atmosphere where they have a chance. Put simply, many adults with autistic children are more concerned with protecting themselves, than their child.

For the same reason that some AS folks complain incessantly about NTs: they're unwilling to yield and try to learn anything from the other side. People think that they're the only ones who are the "victims".

I can understand the mentality of mother's with autistic kids that OP described. For one, these kids are probably a lot more severe and require more care. They have to deal with a lot more because their child is autistic.

It's just a few, very few parents that are like that. The problem is that they're loud and noisy about their opinions unlike those parents who get along well or do not get along well but fight with motivation, sometimes despair instead of spending their time talking about how bad autism supposedly is and what strangers may not have autism and what other strangers are idiots or 'faking it'.

I got the impression that a group of parents really doesn't want anybody who can write intelligently on the Internet shouldn't be associated with their children who never will because anybody who can write intelligently on the Internet can't possibly have symptoms similar to their children or of the same severity.

This generalisation is plain ridiculous, of course. Just because you can talk well doesn't mean you don't for example injure themselves and people and punch holes into walls whenever you have a meltdown/alternatively and especially in childhood, this may occur daily or weekly even if you're.

Or that you have to have some ability to read body language and understand others and be 'in touch' with them just because you talk and interact with people.

Or that you can't have serious sensory issues because you talk and write intelligently no matter that your diet is restricted, that you are affected by your sensory issues literally 24/7 in several ways.

And I know non-autistic kids with a bit of a social/emotional disturbance who colour the walls and - excuse me - piss on the carpet frequently and bite into furniture, eat everything (no matter whether it is edible) and do okay in normal ed in a normal school and need no intense assistance.

So this stuff is not exactly a 'profoundly autistic problem'.

And also, the 'not toilette-trained' argument annoys me because before I got into the whole 'autism community' thing, I was pretty much talking to parents of kids with AD(H)D. Seriously, even quite a lot ADHS pre-teens don't make it to the toilette in time for everything, so whatever. And I think the people who hate AS/HFA/autism with speech being associated with profound autism/MR would totally freak out about ADHD being associated with their kid's 'autism' for whatever weird issue.

Then I also noticed that some people think that those with Asperger's 'aren't really disabled' or 'aren't really impaired'. Especially when they know kids and teens with autism who 'only seem to have mood disorders, perhaps anxiety, maybe OCD too'.

That's such an uneducated opinion! Asperger's so if a kid only has anxiety and compulsions they're NOT AS. They're misdiagnosed. And stating they have AS is spreading wrong information and giving the wrong impression about the people with real AS who may or may nor also have to fight with anxiety and others on top of their Asperger's.

I also got the impression that especially children with 'profound autism that doesn't improve' shouldn't be diagnosed with classical autism. Because a professional just cannot differentiate severe/profound mental retardation from autism and thus is most likely to mistake normal symptoms of especially profound MR for autistic symptoms. Is it autism or MR when a profoundly mentally ret*d kid with autism in some severity that can't be measured accurately doesn't use words or understands most words? Right - nobody knows so it's a 'not otherwise specified' but not a 'we know exactly what form and severity of autism this kid has' diagnosis that is medically correct.

My GUESS is that NT parents of autistic kids want to see them CURED someday. They don't really want to think of their kids as always being autistic.

By extension, you would represent something they don't want to accept.

My guess is that there is at least a small element in some parents where they very much see themselves in their children, particularly in the MFA/HFA cases. If they haven't come to terms with some of the autistic traits themselves, the easiest thing to do is attempt to destroy them. Most likely the parents don't even realize that they are doing this.

Then they're not thinking too clearly, because I'm intelligently debating them and I'm on a parenting site, so I have a family and a kid. That means there IS hope for their kid if they would think about it.

MetalCowgirl34, I totally identify with you and think your friend with the teen daughter has the right idea! I am an Aspie mom with two daughters (one AS the other very AS-like). I have been frustrated because autism is such a male dominated field of study, so I started a site for women and girls with AS. This obviously includes Aspie mom's!! You are MORE than welcome to check out my site (so is everyone else). I would warmly welcome any discussions like this in my forum. In fact, I just posted a blog about "Traits" of a Positive Parent that focuses on being a great mom and a person with AS. At the end of my blurb I have requested that other AS moms share their experiences. Check it out! I bet you have some really great things to say!

www.aspiegirls.com

There was one post in one of the autism groups the other day that I had to reply to. It was an article about the "new theory" that Aspies actually DO have emotions! *shock*, but just have a hard time SHOWING it....as uposed to the theory that they just don't have emotions at all.

I commented that the article is right. I can't speak for all, but I DO have extreme emotions, I just don't know how to express them or I get so much anxiety from the emotions, that I can't communicate.

One of the other moms disagreed with me and said Asperger's means you don't have emotions!

Well damn, I didn't know that! I better stop feeling emotions then!

Yes, and that's true with any group really. Religion, politics, whatever....the dumbest most close minded ones are the ones who feel the need to speak out. I wish those who disagreed didn't do so by staying quiet about it

You are so right! I have really intense emotions, but I keep them to myself a lot of the time.

I am going to go look at your site. I only have 9 members so far, I just started mine on Cafemom....you'd have to join Cafemom first, but you're welcome to join mine too (or anyone else who is a mom with AS). It's called "Moms on the Spectrum" if you search for it....otherwise here is the link: http://www.cafemom.com/group/momswithautism Most of the moms in my group only recently found out they had AS, like me.

I can only speak for myself. When I found out that my son was on the autistic spectrum, I was elated! He was such a fascinating, bright, wonderful baby/toddler. But as he got older, things started happening that were so confusing to me. He became so full of anxiety that he couldn't function. He had extreme, violent meltdowns if I turned left when he was expecting me to turn right. He'd run into the middle of a neighbor kids' ball game and shout strange things, and then laugh uncontrollably when they got irritated at him. At dinner, he would grab handfuls of food and smear them on the table. He would start crying and talking about wanting to disappear because the whole world isn't red (his favorite color). In kindergarten, he crawled under the desk and licked the teacher's leg. And yet he was reading at a fourth grade level, and coming up with stories and ideas that showed how brilliant he was.

I looked everywhere for what might be the problem. No one understood. I bought every flipping parenting book I could find. Surely, there must be a reason why my kid was doing these strange things, and why no form of discipline seemed to work. It didn't occur to me or anyone else (teachers, doctors, relatives) that there might be some neurological reason for his behavior; it must have been my parenting. But, I had devoted every moment to doing my best, and I had tried all the different things that work for other people. I had nurtured him and played with him, and encouraged his creativity. What did I do wrong??

Autism was an answer that make sense, once I learned that it means more than just a kid in a corner, rocking and flapping. My son being wired differently is an answer that not only makes sense, but also makes me kind of proud. I like that my kid is "special" (in the positive sense, not the insult sense) and unique. It took a long time before I began to seriously consider that I might be on the spectrum myself (had to learn more about autism first), but I've always known I didn't fit in with the rest of the herd, and it was just fine to know that my son didn't fit in either.

It was also a HUGE relief to have someone validate what was obvious to me all along. He wasn't a bad kid. His behaviors were really bizarre sometimes, and made people uncomfortable, and if we yelled at him to stop, the behaviors would escalate, which made him look like a bad kid and us look like bad parents. (I still can't face the neighbors.) But I knew he was a really, really, GOOD kid; I just didn't understand what was going on with him. Autism made sense, and gave us a framework from which to understand him.