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What do you think of autistic culture? - Page 3

post #41 of 59
Everybody take a breath. There is some good discussion going on in this thread, I don't want it shut down.

WTH, I don't think Hala was accusing you of calling your child a vegetable. I think she was just saying that it brings up images of people like Terry Schiavo, etc., and that that is not what autism is. She wasn't attacking you, please don't attack her.

It's tough for all of us as moms to hear, I think, what the autistic adults here have to say. It makes us feel as if they are pointing fingers at us, shaming us, telling us that we are bad parents like the ones back in the day who did all sorts of horrible things in the name of "treatment," when that is the very thing that we as special needs parents are trying to avoid. We don't want our children to grow up like the special needs children of the past...institutionalized, ostracized, degraded, humiliated. We want our children to be loved and whole and full of life and to be as independent as they can be and as they wish to be. We want them to blossom and flourish, and we as their parents would walk over hot coals if that's what it took to help our children achieve this. Nothing we do comes from a place of malice or wanting to make our children "appear NT." We are not trying to get our children to "pass."

This journey is very different from a parent's perspective versus the autistic person's perspective, and a very emotional and challenging journey, hence the reason we all get so passionate about our point of view.

Please, lets all take a breath. Stephmomof3 is right, when it comes right down to it what we all want is for our kids to be loved and to be happy. It shouldn't be an us versus them. Autistic adults can offer so much insight into a very private world that is so hard for us to understand sometimes. On the same turn, parents can offer insight into what the struggles a family goes through in their quest to help a child with autism. We want our kids to be loved and happy. How we feel we should go about reaching that goal differs from family to family, parent to parent. No one has all the answers. No one even has a very good idea at this point, there are so many hypotheses being thrown around. We are just doing our best with what resources we have, for the sake of our children, whom we love.
post #42 of 59
Sort of off topic, but since I am still reasonably new to this, I am curious...has there always been an "autistic culture" or is it a fairly new phenomenon?

I sort of knew there was a "Deaf Culture", but only from things like storylines on Law and Order, which lead me to learn a bit more because it sparked my interest, but didn't even realize there was a "autism culture" until I had been in it a while.

What advice you get when you first start down the road to diagnosis is largely dependent on which culture you happen to step in to, and for me it took a while to realize that people had specific, almost political, opinions on how to proceed.
post #43 of 59
Quote:
Originally Posted by Jennifer Z View Post
What advice you get when you first start down the road to diagnosis is largely dependent on which culture you happen to step in to, and for me it took a while to realize that people had specific, almost political, opinions on how to proceed.
This is such a good observation. I actually think the two doctors who evaluated my son (one said mild to moderate autism and one said not autism at all--not even on the spectrum) have different "political" views on autism. It makes it very difficult as a parent to sort out what's going on and what to do.
post #44 of 59
That is soooooo true! I didn't really even realize it until I just read it here, but is absolutely a fact.

A frustrating fact as well.

:
post #45 of 59
Yep. You have to watch what you say to certain parents, because certain beliefs about autism and its' treatment are like a religion almost to certain sects of folks. I have to keep my mouth shut at my local autism society meetings because I don't share their beliefs on the cause of autism, and they will literally corner you and try to ram a certain book down your throat if you don't agree. It can be quite dicey.
post #46 of 59
Quote:
I'm not entirely sure where some of the anger on this thread comes from... I'm going to guess that parents of autistic children have had to deal with "unhelpful" attitudes from other family, friends, school authorities, and so on.
Part of the thing for me is that I don't feel that an adult with autism necessarily has better insight into DD's needs than I do just because they happen to share the same poorly defined label (being applied to everyone from people profoundly affected to people with mild personality quirks). DD and I have a close relationship and I understand her quite well so it does anger me a little when people who have never met her (or who have spent a couple of minutes with her, in the case of the school district) think they can make sweeping generalizations and tell me I'm wrong about what I'm doing for her. It's as annoying as mainstream parenting mags that claim all babies need to CIO to learn to go to sleep.

I don't think anyone can make generalized claims about all kids with autism any more than you can about all NT kids. They're all individuals with different needs and different strengths and challenges. I am starting to feel that the ASD label is doing a disservice to DD, especially in terms of her medical care and the school district services, because people are seeing her as "an autistic child" and then nothing else. I have never seen an "autistic child" when I look at her. She's much more than a label. The label doesn't even describe her all that well; it's just the only available one that fits at all so we use it.

Yes, I had a bad meeting with the school district this week. I'm at the point of wondering why I even bother. They misunderstand her on such a fundamental level that I'm second guessing that I entrust DD to them four mornings a week.

And on the vegetable issue, I think that if anyone were to uniformly say that all children with autism should be taught only basic self care skills and then nothing else, that would be kind of disrespectful to those children. Some children with autism honestly WANT to learn to communicate and some have a blast in OT or other therapies. All therapy should be decided on an individual basis. Supposedly I thought that was what IEPs were supposed to be for, but apparently a lot of school districts think otherwise.
post #47 of 59
Schools are really pissing me off lately. Ds's school sent him back from 2nd to first grade b/c they REFUSE to evaluate him. He has been diagnosed w/ AS, but no evaluation but theirs counts when it somes to IEP's, etc. He is not disruptive and is very well behaved, so they decided he does NOT have any problems at school and just moved him back a grade. All he needs is OT to help him w/ writing, imo, at least for now. He can't write for very long and when he does write, he writes VERY slowly.

I have an online friend whose 12 yo has AS. THey just moved to another state and in the new school, the therapist kicked him out of a social skills class b/c he would shut down when she tried to FORCE him to roleplay and make eye contact. She said if he refused to participate, then there was no point in coming. I am still FUMING w/ his mom over that. He went to I think 3 classes and had been enjoying them and learning a lot until she started trying to force him to do things he wasn't (yet maybe?) comfortable with. What kind of people do they hire for these jobs? You can't FORCE an autistic kid to make eye contact and role play!
post #48 of 59
I just want to say that this discussion is awesome. I'm learning SO much from everyone, and am reading and :.

I would love to hear more about these political divides. I love to hear all these different opinions and points of view. In fact, I'm off to my very first meeting at the local autism center (the waiting lines are nuts there), so it's like my first formal step into the community (other than here online, of course). I am nervously and excitedly wondering what to expect!
post #49 of 59
Quote:
Originally Posted by teasdone View Post
I just want to say that this discussion is awesome.
!
me too - I dreamed about this thread last night! I'm off to a conference (integrated play groups) so I hope this thread is still here when I get back.
post #50 of 59
Quote:
Originally Posted by wendy1221 View Post
THey just moved to another state and in the new school, the therapist kicked him out of a social skills class b/c he would shut down when she tried to FORCE him to roleplay and make eye contact. She said if he refused to participate, then there was no point in coming.
I don't think this is specific to ASDs. If a parent, regular teacher or resources teacher wants to force children, then she does, period. Non-ASD children go through this. I was always the one forced to participate in sports that were almost certainly going to get me killed due to my two left feet. You also hear about "sports parents" who scream at their non-ASD children from the sidelines, or parents who give $20 for every A and take away privileges for a month for every C. There are mothers who were social butterflys and can't stand that they have shy daughters, so they bribe or force their girls to go to dances, have large playgroups that make them uncomfortable, etc.

I don't like the situation posted above, but I wanted to point out that while many people may be of the belief that ASD kids are forced to be main-stream, so are many non-ASD kids. I don't think it's specific to the syndrome; I think it's specific to the immaturity in general of the teaching adults around the child.
post #51 of 59
Quote:
Originally Posted by krissi View Post
Part of the thing for me is that I don't feel that an adult with autism necessarily has better insight into DD's needs than I do just because they happen to share the same poorly defined label (being applied to everyone from people profoundly affected to people with mild personality quirks). DD and I have a close relationship and I understand her quite well so it does anger me a little when people who have never met her (or who have spent a couple of minutes with her, in the case of the school district) think they can make sweeping generalizations and tell me I'm wrong about what I'm doing for her. It's as annoying as mainstream parenting mags that claim all babies need to CIO to learn to go to sleep.
Yes, this is it for me as well. I resent people who don't know or have never met or lived with my child telling me I'm harming him by giving him OT and ST and play therapy. : I always tell people that autism isn't a cookie cutter diagnosis, and it's not. That, and it is such an entirely different experience to parent an autistic child as opposed to being the autistic child. Parenting one is a whole 'nother ball game. Until you've walked that walk, I really don't think you should be passing out criticism and wagging your finger in judgement. JMO.
post #52 of 59
Quote:
Originally Posted by teasdone View Post
I would love to hear more about these political divides. I love to hear all these different opinions and points of view.
Well, these are just my thoughts, based on my experiences. I've copied and pasted a link below to my first post in this forum and it lays out DS's evaluation history pretty well.

The quick story: He has had two private evals with completely different results. One (neuropysch) said mild to moderate autism, one (developmental ped.) said not autism at all, developmentally delayed though.

I think DS is a very borderline kid for this kind of diagnosis. He exhibits some of the signs, but far from all. He is very funny and engaging and smart. He's really good at compensating for his weaknesses (or even covering them up for evaluators). He also has a history that complicates things (adopted, first year plus in an institution).

Given this kind of ambiguous situation, I think professionals tend to (maybe not deliberately) default based on their training and professional views on autism.

I think the neuropysch's training and professional work is all autism. I think he believes strongly in ABA and thinks of it as a cure. (I also think he's a UA violation but that's probably not relevant to this discussion). I also think he believes strongly in getting kids services early and is willing to push diagnosis to get the services. (I'm all for services, don't get me wrong.) I also think he wants kids who are not as severely impacted by autism to recieve ABA therapy so that he can use them as examples for how wonderful ABA is. (I'm not saying ABA isn't wonderful, just trying to explain what I think this particular professional's agenda might be.)

I think the developmental ped we saw sees a much broader range of developmental issues. He's interested in autism and does work in the field, but does other things too. I don't think he sees ABA as useful for kids like DS (he specifically said he did not think we should do it for DS). I got the feeling that he is opposed to broadening the label of autism. I'm not sure why. Perhaps he feels the diagnosis becomes less meaningful and less useful if it is applied to more and more kids with less and less severe issues. Maybe he feels it isn't helpful in getting the right kind of help for kids with mild symptoms. . . . Just not sure.

Ultimately, I care about the label only if it guides us in helping DS and or helps us predict how well he'll be able to function ultimately. I want to help him NOW and I want to know what sort of plans we need to make for him after we are gone and no longer able to help him. My efforts to get a diagnosis helped a bit with the first as I am sure the autism diagnosis has helped us get services. None of our services are specific to autism though and autism has never been formally used to establish DS eligibility. And the diagnosis, or lack of clarity around it, has been of no help in planning for the future. Fortunately, DS has made huge progress and I now believe that he will be able to function without us at some point.

Wow, that got long. I hope I have not offended anyone, I'm sure not trying to. I also hope it's not too far OT.


(Here's the link I promised at the beginning. http://www.mothering.com/discussions...d.php?t=541953)
post #53 of 59
Quote:
Originally Posted by Welcome2Holland View Post
I don't think this is specific to ASDs. If a parent, regular teacher or resources teacher wants to force children, then she does, period. Non-ASD children go through this. I was always the one forced to participate in sports that were almost certainly going to get me killed due to my two left feet. You also hear about "sports parents" who scream at their non-ASD children from the sidelines, or parents who give $20 for every A and take away privileges for a month for every C. There are mothers who were social butterflys and can't stand that they have shy daughters, so they bribe or force their girls to go to dances, have large playgroups that make them uncomfortable, etc.

I don't like the situation posted above, but I wanted to point out that while many people may be of the belief that ASD kids are forced to be main-stream, so are many non-ASD kids. I don't think it's specific to the syndrome; I think it's specific to the immaturity in general of the teaching adults around the child.

I never said it was specific to the syndrome. I should have said FORCING an autistic kid to make eye contact and role play isn't HELPING him. That's really what I meant. It's wrong to force any child to do anything, imo, and that's why I don't really like public schools. Unfortunately, my son chose to go to public school this year. I didn't even think he would ever ask, but after a few months of homeschooling (after 2 years of charter school) he told me he wants to ride the bus and go to school w/ all the neighbor kids. (and a lot of people think I'm wrong for letting him make his own choices about things like this. THey say he's SPOILED not autistic and it's b/c of the way I parent. I am not permissive at all, but I do let him take part in decisions that affect him if possible.) Anyway, I'm hoping that we will be able to find schools that are more understanding, especially now that dh is graduating and we will actually be able to afford these schools if we find them. I'm hoping this is ds's last year in public schools, but who knows where life will take us. He actually LIKES school, which I can't understand at all. I think it's b/c he happens to have a super great nice teacher this year. But I'm scared knowing that most teachers aren't this helpful to kids who are different. I know b/c I was one.
post #54 of 59
Quote:
Originally Posted by Individuation View Post
[B]Like PP said, I want our son to be him and be happy being him, but there are some basic things I also want for him that might not come as easily for him, like an ability to be empathetic and compassionate.

You know, I'd really like the "no empathy" stereotype to go out the door with the "refrigerator mother" stereotype. There is a difference between not being able to express empathy in ways that people accept, and not actually feeling that empathy. I've never met an autistic person (who wasn't traumatized by abuse or institutionalization) who truly lacked a deeply emotional relationship with the world around them, even if it was experienced on a more internalized level than others.
Yes! I have a friend whose dd has autism & she is VERY empathetic. The way she used to show her empathy, when someone cried, she would hit them- but she has definitely grown to have better ways to show her feelings. She is also developmentally delayed so in that respect "different" from a kid who is solely on the spectrum. But she shows love & gratitude & happiness & even though she is non verbal it is VERY clear what emotions she is feeling.

RE: the op- I think autistic culture is fascinating- I am somwhere in the middle as far as MY feelings on it- I work each year in a fundraiser to raise money to cure autism, but as far as the individual kids I personally KNOW who have autism, I would not want them to be different. I want them to be able to dress & feed themselves, say, but NOT to be so therapied out that they act like little robots, imitating "typical" kids- if that makes sense...
post #55 of 59
Really what I want for my ds with ASD is what I want for all my kids. I just want him to feel at peace with himself (whoever he turns out to be). How do I help him get there? Who knows.

To not have him access therapies or be in classes with NT kids seems kind of cruel. He LIKES other kids. All kinds of other kids, not just ASD kids. And if we hadn't worked with OT/ST for his oral sensory issues he very well could have died of malnutrition by now. I am not being over dramatic, his difficulties were severe and required drastic measures on our part. Sometimes kids (ALL kinds of kids) need a little extra help. It isn't about changing who they are, it is about helping or empowering them to be who they are. And about keeping them alive and healthy. He eats a whole lot of different foods now and ENJOYS them. And he isn't so malnourished that he can't get off the couch! He has the energy to ride his bike to school. He may keep the training wheels on forever though

The hardest part *for me* is that I see him (quirks and all) as absolutely perfect. He is my boy after all. But I also see how some of the difficulties he has (because he is ASD) are crushing him. He wants to be able to do certain things, but just can't handle it. Or he doesn't know how. He is struggling so much right now that he is becoming sad and withdrawn. So what do I do, should I avoid all therapeutic approaches in the name of "accepting him for who he is"? Or do I try to help him so he can function in these situations so that life is a little less terrifying for him? I do what I do FOR HIM, not for me.

I would help ANY of my children through difficult times using the approaches I felt would help them best. Period. Is that not being respectful of his ASD? I don't care, I want him to not suffer with crippling anxiety as it gives him no quality of life to fear leaving the house. I would rather work with him so that he feels more control over his life.

I do have a problem with a lot of the "therapies" out there. I do not agree with the token system or "training" of any kind. I don't agree with "training" any children. I would rather work with the whole child.

It is a fine line between accepting autism and all its elements and helping a child overcome these things. It all comes down to motive. I have no interest in the idea that ASD needs to be cured, but if something presents an obstacle in life then you work to find a solution (whether that is accepting and understanding the obstacle or finding a way to remove it). The guideline we have always used in life (for everything) is if it doesn't affect our quality of life then leave it. If it does work on it.

How that fits with the ideas within the autistic culture I don't know. We are fairly non-interventionist compared to most parents of autistic children. I just hope we can give our ds (actually all our children) a strong sense confidence in his ability in life and a strong sense of support regardless of where that will lead him.
post #56 of 59
Quote:
Originally Posted by FreeRangeMama View Post
The hardest part *for me* is that I see him (quirks and all) as absolutely perfect. He is my boy after all. But I also see how some of the difficulties he has (because he is ASD) are crushing him.

... I just hope we can give our ds (actually all our children) a strong sense confidence in his ability in life and a strong sense of support regardless of where that will lead him.
That said it so well for me; it's exactly how I feel.

And thank you, crl, for explaining your experience of some of the politics.

This entire discussion is wonderfully timed for me -- I (finally!) got to go in for my orientation at the local center here, and it was *so* wonderful. This discussion was in my mind as I listened (somewhat nervously) to the presenters describe their approach. I was hugely relieved to find that this place is falling solidly on the side of accepting our kids for who they are, and changing their environments to support them and make their lives easier, rather than the other way around.

So, for example, I'm going to put visual labels on things, clean all the clutter off the kitchen table (who knew clutter was hard for the ASD kids to deal with?), break ds's tasks into lists (and present the lists in concrete, visual terms), and when the time comes, we can work with teachers to tailor his homework to make it easier for him to understand, etc. etc. etc. At the same time, though they didn't press it, they do seem knowledgeable about things like the GFCF diet and enzymes and other things that (I think?) are more from the "cure autism" side of the divide, which is exactly the line I'd like to walk. Horray!

I was walking on air when I left this place. And I have a lot to go do!

Yay!
post #57 of 59
Thread Starter 
Teasdone, that sounds really nice. You wouldn't happen to have a list of those "things to do to make your house autistic-friendly" things you mentioned, to maybe post here or at least PM to me?
post #58 of 59
Teasdone, perhaps you could post that in a different thread under a title like about what things can make a home more friendly for kids on the spectrum. I'm sure that much varies from kid to kid, but I think it could spark a fabulous discussion.

(Will it be enough to bet ME to declutter? Argh!!! I wish I could say yes--maybe if I got medication for myself once the kids wean).

Sherri
post #59 of 59
A new thread is a good idea, I can put some of the ideas I got, and other people can add other good ideas and things that have worked for them.

I wish I had a whole list, as it is I'll just have to do it from memory. They were just giving examples of things, it wasn't meant to be comprehensive, they were just demonstrating their approach, and the kind of things we will learn when the actual sessions begin. So I'll have more to write after the actual sessions -- of course, the waiting list for those is another whole year, ugh!!!
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