"My Son Has the Kind of Autism No One Talks About"

Post Reply New Topic

You are absolutely right. It was directed at people with no real understanding of autism. I wanted to show that it can look many different ways. I looked here because I used to post here and it came up in a Google search.

Thanks!

Bonnie

I love this forum. I do some training and always direct people here. This is a very special place and everyone here has been really great to me when I've had questions in the past.

People can say what they want about me. It's OK. I'm not unhappy at all. My son and I have an amazing life and I wasn't trying to cry about it. I just wanted people to wake up a little bit. But I have to tell you, I was so incredibly disappointed at how people view autism. I really thought people had more awareness even than they do. Some think it's a horrible thing to be cured, which it isn't. Some think people with more severe autism should be locked away. It's so awful. Every one of us has a gift to bring to the world.

Anyway, thank you all for your support over the years that I've been around Wrong Planet. Have a great day!

Bonnie

While I understand how she feels, the fact is that for the last 15+ years autism has been portrayed 100% negative by most parents and autism groups. Now that more success stories are coming out, they are bothered by it. Hey, I do feel for those parents, I still have no clue how my son will function, however, they don't seem the least concerned with how their stories affect the future of my son, but want me to be concerned about my son's story affects them? Sorry, there's a double standard here. In fact, my son was diagnosed with PDD-NOS, classic autism and AD/HD...today everyone says he is without a doubt ASPIE. There was a reason that we had multiple levels of autism before and those parents as a whole and the groups who claimed to be helping autistics were all against the different names for different levels of functioning...they wanted ALL kids to have the same diagnosis so that they wouldn't feel bad and so their numbers increased...now they complain? Yes, I do feel badly for some of them, but I'll worry more when I see the same from their side...at this point, I don't...never have...at least not with ANY of the parents of the autism groups I have belonged to.

Hi, Bonnie - so glad you are posting here and that you're replying to this thread!

I understand your intent now, and am glad you posted about it - my concern is that there are probably a lot more people who think "Rainman" when they hear "autism," than think Daniel Tammet; there are many people who are actively afraid of any kind of disability and move towards pathologizing. Sadly, instead of that making people realize how bad we are at supporting disability, it often makes them withdraw support.

I do agree with you, definitely, that there is a tendency to apply "magical" attributes to people on the spectrum, which is effectively just as damaging as pathologizing them, because most people with ASD don't fit that profile either.

As for the families in California, I am referring to this thread: https://wrongplanet.net/forums/viewtopic.php?t=289549 Especially if my hunch is true and this poster is one of the neighbors suing the family, I am fairly convinced that the parents were not really doing anything wrong, and that the neighbors are wildly overreacting and pathologizing fairly normal behavior.

Thank you for posting here, Bonnie. That was brave.

Momsparky, I don't know how I missed that other thread, but I am so glad I did. Reminds me of the kind of people who post on that forum that Cubedemon used to quarrel with.

It is true that there is no "one face of autism." The problem is, IMHO, that we have but one label. The medical community has, in effect, announced to everyone that it is all the same thing. Because the impact of autism can have so many different "faces," one label does not sufficiently discriminate to be useful to the average person wanting to use it in a heuristic way, which is often how labels are used...as a mental shortcut. It would be like deciding all mental illness would simply be called "Mental illness." It's not helpful. That doesn't tell you if someone is depressed and suicidal, or if they are paranoid and at risk of violence, if they hear threatening voices that command them to do unthinkable things, if they hear benign voices that simply comment on a variety of things, or if they are so preoccupied with cleanliness that they cannot leave their apartment in fear of coming into contact with germs.

Bonnie, the one thing I can say is that for a long time, the only image out there was that of the low-functioning autistic. That is why I originally thought my daughter was going to spend her life sitting in a corner somewhere rocking and headbanging. That was the only "autism" I had ever heard of. I had no idea that she could be mainstreamed in school, have friends despite her quirkiness, have talents that surpass those of the average NT, or ever be able to take care of herself. That message simply wasn't out there 8 years ago. I had to dig to find it. That is also why my son went so long without a diagnosis at all. There was clearly something different about him, but he was very social (though inappropriately) and highly verbal. So he went through years of struggle that would have been completely unnecessary had I understood that autism was something other than "detached, sitting in a corner rocking." I am happy that people now have a balance available to them in the media.

But I get your point. It is easy for people to say "I embrace autism" when they are embracing someone like my daughter today. There's really not that much not to embrace. She misinterprets other people's intentions and shuts down when she is overwhelmed, she has sensory issues, she draws 100s of chibis a week, sometimes for hours at a time, and she has a unique perspective. None of it is really problematic for anyone. So when someone embraces someone like my daughter they get to wave their "I embrace autism" card, when the reality is if they would have had to embrace my daughter when she used to bite and hit, when she would bolt into the street, when she was nonverbal and squealed and screeched at random intervals, when she would have meltdowns, and when she would headbang in frustration, they probably wouldn't have been as quick to "embrace it." By changing the "face" of autism to something more easily embraceable, we have allowed people an easy way out. THey don't really need to embrace it--all of it--they can just pat themselves on the back for being so enlightened when they invite my daughter to their kid's birthday party.

I think people are frightened by differences. Maybe they don't deserve kindness, but I don't see anything else reaching them.

Perhaps the intentions were good, but I find that none of them came through in the article, which is what people read on a popular site like huffpost, not the intentions that are not communicated in writing.

I think the article itself is negative and harmful towards the good intentions.

I wrote my perspective about this whole thing here:

https://mynoneabdlthoughts.wordpress.co ... ic-people/

I wrote about aggression and how people mostly think when you won't tolerate a certain behavior rather it's kids or pets or anyone with a disability.

Bonnie: OP here. I'm glad you took the time to find this thread and respond.

Your article made me think of the "opposite" issue I had growing up (InThisTogether mentioned this also). No one would have thought "autism" with me because the only "autism" anyone was aware of in the early to mid-1980s was LFA - "the kind no one talks about" today, to quote the article title (as misleading as it apparently was - thanks HuffPost ). I was called "shy", "too clingy to parents", "spoiled" (probably) and just plain "weird." I had trouble understanding the actions of other kids my age, had issues with food, felt ill a lot when I had to go to school (both problems related to sensory issues, I now realize) and preferred to keep to myself.

I think the DSM-V did a huge disservice when putting everyone on the spectrum in the same, larger category of "autism." Though technically true, labels do affect people's perceptions. "Asperger's" is different from "classic autism" (LFA), and both need to be acknowledged as such. One should not be "praised" while the other is "shunned", in either direction.

If we do "light it up blue" (sorry), it needs to be all-inclusive. Otherwise, we are not being inclusive at all.