Expectations for people posting in the Asperger's/PDD Group

[bloom]

1. That Asperger's is recognized as something that exists. That an "autism spectrum" is recognized.



That's not too much to ask, is it? (ie. "The short story is that, despite what everyone hears these days, it's not clear that an "autism spectrum" exists.")

If people want to raise and debate such things as whether Asperger's exists or not in the Health section, for instance (or the lounge :shrug: - then there would be no group sort of thing to stop them.


I think it's like people debating in the Atheists group whether Atheists exist. I think it's absurd.

[Kajsa]

1. Thank You, Bloom.

I feel most of us are here to get support, links to services
and talk with people who understand what in the hell we're
going through.

Like I said in my introductory post, I can be surrounded by
caring people but unless they or someone they love have PDDs,
they really don't understand what it's like. How can they?

It's hard to believe some people don't think the autism spectrum exists.
Some have even called it the "disability du jour"! Argh!

I just try to ignore those people.

[bloom]

4. "I feel most of us are here to get support"

Yes, I agree.

While I think it's good to see the positives about it - when that is possible - it seems that people would probably experience some degree of difficulty or they wouldn't bother thinking of themselves (and/or their children) as being on the spectrum.

And we don't come here to have people pretend it's nothing. I can't imagine someone doing that in the mental health support group, for instance.

[thedeadchicken]

7. Likewise

It's to the point I don't even tell people anymore: part of the time they don't understand what it is and the other half the time they'll say I'm just shy. Shy is not starting a conversation because you're anxious; for me, I don't start conversations because I either don't know how or really don't want to.

Sorry, irritated today.

:grr:

[hunter]

8. I don't start conversations because I don't want to talk to you.

Well it's the truth, and there really are no positive or negative connotations that go along with that. I just don't want to talk to you, that's all it is, there is nothing more to it.

But you quickly learn that most people see avoiding small talk as a very negative, even insulting kind of thing.

Myself, living by the golden rule, I'd be sort of happy if you didn't talk to me when you didn't feel like talking to me. So the golden rule doesn't always work. You have to play by the social rules, even if they don't make any inherent kind of sense to you.

[idgiehkt]

10. I am sort of that way too

I do not like to 'make nice' and talk just for the sake of talking. Some people I don't like to talk to at all, either. This is terrible, but I usually don't enjoy conversations with my Dad, ever. So most of the time I try to avoid talking to him if at all possible. I know that it hurts him, but his coversation skills are very lacking when it comes to his family. With strangers he is fine, asking lots of questions and stuff, a real social butterfly, so to speak; with his children, he wants to talk about what he wants to talk about, and if you say something he will interrupt you most of the time with his own thoughts or subjects, or point at something and say 'look at this' or change the subject entirely. This irritates me to no end and I find it exhausting. I now realize I am supposed to play along with this kind of thing, as a female, but I have no desire to do so. Probably 50% at least of the negative feedback I've gotten in my life has been from being true to my emotions and not acting the way a female is required to act. Oddly, I attribute this to my aspie-ness and my aspie focus and just having my mind on other things and not learning these social 'skills' when I was growing up. Now it's too late and I have no interest in learning all these fake modes of behaving for conversation and what I consider 'ass-kissing'. My father and I basically don't communicate because of it.

[idgiehkt]

11. welcome to DU

glad to see you posting here. The aspie group really seems to be taking off.

I am similar about conversation as I shared below. It boggles my mind how as a female how much 'facilitating of conversation' I am supposed to be doing. Maybe it is different elsewhere, but in the South it is an effing lot of work, and I ain't interested. So I basically try to stay out of conversations unless something I am interested in is being talked about, which is rare.

[Stargazer09]

2. Thank you!

Bloom, I appreciate your post. You're absolutely right. I know that not everyone agrees that such a spectrum exists, but from what I've read (as a mom, not a doctor), there seems to be varying degrees of autism, and some people, for whatever reason, have more severe symptoms than others. Matthew seems to be on the less-severe side of the spectrum, but anyone who has ever had to take a child like him to the doctor or dentist knows that it can be extremely challenging. It's not just a lack of eye contact we're talking about here. It's a full-blown, "There's a stranger coming near me, and I absolutely can't handle it!" tantrum.

I came here for support, even though Matthew has not been formally diagnosed with anything. He has symptoms of Asperger's/PDD, and it was my hope that others would share their experiences with me while we wait until our screenings in February. If it turns out that there is something completely different and unrelated that he has, then I can go elsewhere. In the meantime, it's nice to read about other's experiences with this, so I know what I might be able to expect in the future.

Thanks again.

[bloom]

3. You're welcome.

I was just thinking about dentists (from another thread) - because that was something the my daughter had big issues with. I think she may have even bit one of them once - and she was the kind of person who was very shy and rarely gave anyone any trouble.

And so today I googled dentists and autism and all these sorts of things came up:

Medical & Dental Procedures & Autism

http://www.neurodiversity.com/medical_dental.html

_____________

It rather ticks me off to have people trying to pretend that there is no spectrum - because I raised my daughter not having a clue that there was any sort of thing like this to explain her behavior - until she tried going off to school (at 16). I think it would have been really helpful to know. I didn't really even have enough information to guess until she was at least 19 and had been the hospital for depression.

I have a son who could be on the spectrum - but it makes little or no difference to say that he is - because he doesn't (as far as I know) have any serious problems. At that point - I think if it helped him to know about some of these things, fine, if not, fine. (His field is physics).

I think that some people may know that they and people they know have some of these traits - and they don't want anyone calling it a thing. That's my guess, anyway.

[Stargazer09]

5. Great website!

Thank you very, very much!

I spent Saturday night in the ER with Matthew. His reflexes are not good at all, and he smashed his nose into the wooden accents on our couch. The doctor says his nose may be broken, but they can't do anything with it until the swelling goes down. It took me and two aides to hold Matthew down long enough for the doctor to look into his nose and mouth. He just can't stand to have any strangers near him, and he literally freaks out when he needs to be examined. The poor kid looks absolutely awful now; the bruises are spreading and growing darker. Thankfully, he doesn't go out much.

This morning was Matthew's semi-annual dentist visit. The cleaning area is comprised of three chairs in an open area, all with TVs in front of them, and Matthew's older sister and older brother were in the other two chairs. We let Matthew sit on my lap while the others were being cleaned, and we honestly hoped that Matthew would be calm when the dentist came in (she's a sweet younger woman, and the older kids love her). Unfortunately, he still reacted negatively whenever anyone outside of the family looked at him, and we ended up restraining him while the dentist did a quick exam and flouride treatment. Next time, the dentist and I have decided to try nitrous oxide ("laughing gas") on Matthew; we would have tried it today, but with Matthew's nose still being so swollen, it would not have worked well for him.

I am so glad that you pointed out that website, Bloom. I'm going to gather some information for next time, and hopefully, we'll be able to get Matthew to relax around his dentist and regular doctor, at least. Now, if we can just get him to relax around all of the doctors, that would be ideal.

On the other subject, it bothers me when people tell me that all of this is just a made-up disorder. I know it seems like a fad diagnosis, but I think that scientists are finally figuring out that everything is related. I personally think there is an underlying cause for this spectrum, and some people are just more affected than others. I understand your frustration about your daughter. You always want to do what's best for your children, but it's not always easy to figure out when something isn't quite right. Then you have to try to figure out what's wrong. It's not like this spectrum was even recognized until recently, so you had no way of knowing while your daughter was younger that this is why she acted the way that she did. It's good to know now, though, because even if it didn't make your life easier as a parent, it will make your daughter's life easier from here on out, especially if she has children of her own that are on the spectrum.

I know that labels can be hurtful, but sometimes, you have to use them constructively.

Good luck and thanks again!

[Kajsa]

6. I hope Mathew's injuries heal soon.

Using nitrous oxide was the only way my son would
sit still in the dentist chair. I highly recommend it.

Take care of yourself, too.

:hug:

[Stargazer09]

9. Thanks!

It's great to hear that the nitrous oxide may work for Matthew. I wasn't sure about it; I typically don't have my children use it unless it's really necessary, but if it will help Matthew relax, I'm all for it. I just wish our insurance would cover it, but I guess it's a small price to pay for him to get through the exam without destroying the dentist's office.

Matthew is getting better. He looks even worse now that the bruises have darkened and spread across his face, but he's in good spirits. Ever since the first night it happened, he's been sleeping on a large bean bag pillow on the floor at naptime and at night, instead of in his bed. I guess he needs the extra comfort right now. Poor little guy. I feel so badly for him.

I'm trying to take care of myself, but sometimes, I feel really worn out. He is just so challenging sometimes, especially when he refuses to go to bed at night. I usually take a short nap while Matthew is taking his during the day, and that helps. (No, the naps during the day are not keeping him from sleeping at night. We tried eliminating his daily nap, and it wasn't pretty. He just has trouble settling into a deep sleep, and he wakes up too easily.)

Thanks again!

[Skinner]

12. A note from admin.

Your expectations for this group are totally reasonable. The DU Groups are supposed to be safe havens, where people can discuss common interests without having to constantly defend themselves from people who insist on questioning the validity of that common interest.

If someone comes to this group and tries to question whether an autism spectrum exists, they are completely out of line -- and they are in violation of the group's mission statement. Click alert to let the moderators know. We have the ability to block people from any DU group, and we would consider such behavior grounds for blocking.

[bloom]

13. Thanks. nt

[Stargazer09]

14. Thanks, Skinner! :) n/t

[LWolf]

15. Having taught some aspies, I fully concur.

Asperger's exists. It's real. It's clearly different than other forms of autism. There is an "autism spectrum."

I don't have any autistic family members or students at this time. I may check in now and then, just because I think of my former Asperger's students frequently, wonder how they're doing, and I miss them.