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Aspertastic424
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29 Jan 2014, 11:14 am

I recently volunteered at an autistic young adults social group... I served as an employee/ volunteer.

It was sort of rewarding but also sort of depressing, since many of the peoplpe I worked with seemed to be worse on the spectrum than me and less capable in general (not to boast or anything)

this one individual I was assigned to was about 21 and seemed rather puzzling, even to a fellow member on spectrum.

His voice was sort of odd, kind of like a cross between Elmer Fudd and huckleberry hound ( old cartoon characters). What helped explain this is that he explained to me he was very into Hannah Barbera cartoons and cartoons from 60s-70s in general. He also had sort of an odd verbal tick, like he'd say "right here" every3-4 sentences or so. When I was "keeping track" of him at an event he walked really rapidly and fast "lost in his own world" and I really had to follow him for 5 minutes before I could really engage him.

What I wonder is, is his autism just a particularly tough kind? Or could it be that his parents just permitted him to sit in a room all day watching Hannah Barbera toons? not too judge I am just curious.

Oh by the way, I didn't care much for the two women running it ( though some of the other assistatns were good.) They seemed kind and well intentioned enough, but I got the sense they were just kind of "warehousing" the autistic individuals and not seeming to care about them as people. This often seems to be the case of people who care for vulnerable people, including nursing home and group home people. Like they cared about the kids but also thought the kids were kind of slow and stupid, and at times would just do the bare minimum to keep them quiet and out of their hair ( which seems like a terrible philosopy for working with autistics.) any thoughts?



Ilovemyaspiegirl
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29 Jan 2014, 12:06 pm

First I think it's great that you participated in this event.

I'm not on the spectrum but, my husband was (he died in 2011) and our 7 yr old is. So, I always wonder how others on the spectrum view each other. In the case with this one person you were assigned to, I'm not sure that his ASD was worse and/or better as much as it was just very different from your own. One thing we NTs are told early on is, if you've met one person on the spectrum, you've met ONE person on the spectrum. I doubt his parents allowed him to sit in a room watching cartoons but, that being his "special interest" they likely had little choice from time to time. I guess to answer your question, his level of function may have been lower than your own.

As for the women hosting the event, I'd so hate to believe that anyone would involve themselves with autistic children/young adults and not TRULY care about them. But, let's face it, it happens. But, it could also be that they recognized that some ppl do t like to be touched or interrupted or whatever. I've been at get together a where one autistic person starts flipping out and next thing you know if 5 then 10 and so on. So what you perceived as being a lack of interest, may very well have been an attempt to just keep things calm and enjoyable for everyone. At least that's what I hope it was and not their lack of feeling.



Aspertastic424
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29 Jan 2014, 12:20 pm

Im so sorry to hear about your husband. I dont think it was a lack of feeling so much and I dont want to judge anyone harshly. But I think sometimes people assume too much good about people who work with the vulnerable or disabled. Sometimes there may not be any special altruism, but merely a paycheck that people have in mind. That coupled with how frustrating and confusing people with number of disabilities can be sort of an unideal mixture.There is kind of a reason for the "nurse ratchet" stereotype of nursing home and group home workers.

One example though to maybe make my point a bit clearer. At one point the guy was mumbling quietly to himself, and the teacher asks him " so and so are you scripting?" I mean even if he is what is he supposed to say to that?

A better, more humanizing and engaging way to ask would be "What are you talking about? Or what are you saying I can't quite hear you." I was never a big scripter myself, but I can see that would just help engage someone.

Maybe part of it is they see some have such social difficulties that it is tiring to engage them always or "dont see the point?"

I had to do this as part of an Americorps volunteer requirement, but it was very rewarding nonetheless



Ilovemyaspiegirl
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29 Jan 2014, 1:48 pm

Thank you about my husband. He was undiagnosed and eventually it (the fact that I at least didn't know what was "wrong" or better yet how to handle some situations because I had no clue that he had Aspergers) destroyed our marriage. 7 months after we split up, he had already become involved with a younger girl that found his obsession with guns "cool" and the next thing I knew, my sister in law was at my front door one Sunday morning. She never even got the words out of her mouth I knew and my world shattered. He had sat up in the bed and shot himself after a night of fighting with the girl. I'm now raising, out two young daughters (7&5) alone and with my own physical disabilities.

He was misdiagnosed and mistreated by so many ppl he should have been able to trust as a child. Ppl often either don't realize or don't care that, neglecting, abusing, taking advantage of, etc. NT children yeah. However, what it does to those with special needs that are do vulnerable and either partially or largely lack the copacity to understand "normal" treatment by their loved one is way more damaging. He (in my opinion and now experience with out 7 yr old Aspie) was obviously HFA or had Aspergers (not sure what the difference really is there) but, as a child, his "issues" were way more noticeable than as an adult. He learned how to appear to be fairly NT.

The damage of his mom dying when he was very uoung and being raised by two older sisters one of which was married to a marine who thought that strict abusive structure (he just needs his ass beat then he'll act right type thing) was what was needed for behavioral issues. The other sister who babied and literally spoiled to the point he expected it because that "felt good" to him. A dad that was an alcoholic and illegal immigrant from Mexico and was eventually deported for DWI and hit and runn then running from the police. I realize all these issues would likely have messed up someone that wasn't on the spectrum but, to someone that was.... Well it sealed his fate and took him from me and his babies at the age of 26 way too young.

He was so smart yet lacked confidence. So loving yet totally unempathetic at times. I only wish I had known then what I know now. I'm not really sure that it would have changed anything but, I would have at least had a chance to TRY. So you are very right to have concerns about what motivates ppl. It's good that you are aware of the behavior of others as well. He was actually better than most about "reading" other ppl but, he often allowed his naturally negative thinking to keep him from assuming the best or at the very least not the worst in ppl.

I give you major props, requirement or not, for participating. I also urge you to see if you can do something like that regularly. Maybe even start your own little group so that you (having the ability to help watch out for others) can help make sure their not being taken advantage of. But, whether you do or don't, you've done an awesome thing and I just wanted to tell you my story to show you just how awesome. I'm not saying you prevented any suicides but, you never know what even one act of kindness can do for someone.