Austim One & Generation Rescue

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Is anyone attending the conference in Lombard, IL at the end of May?

I'll be there on Saturday and Sunday, wondering if anyone else is attending...

http://www.autismone.org/content/autism ... conference

Oh dear, I had to laugh to myself a little when I stumbled upon this, since as an adult with ASD who manages to be pretty happy and functional in her day-to-day life, I can't imagine how those folks would react to me if I did attend. I might blow some minds!

Personally, I would approach a conference like that with an open, but discerning, mind. And, I hope you'll discuss any of their recommended biomedical interventions with your pediatrician before using them on your child/children.

I don't even know what to say to your comment. Not all people affected by Autism are lucky enough to even be able to wipe their own butt, let alone be happy or functional.

Yes, that is exactly the reaction I would expect to get, should I attend something like this. I attended a parent-oriented event once and was honestly suprised at the open hostility I received from some individuals, only for being myself.

It's unfortunate because I care a great deal about improving the lives of people with autism and I've been in shoes similar to those of their children before, so I do actually have some perspective to offer. (The reaction of my own mother, who understands where I've been in life at other points in my life, was priceless when I told her about it).

I'm very sorry I've offended you; that was not my intent. (I'm not always good with words, for sure!) But, maybe you can try to put yourself in my shoes, at least a little? If that is hard to do, this is primarily a support site for adults with Asperger's and, if you visit some of the other forums and interact with us, it might help put my initial reaction in perspective.

blueroses had a good point about the open but discerning mind.

I know you figured this out a long time ago, bjtao, that generally the membership at this site isn't into the concept of "curing," since members generally don't see themselves as ill. Comorbids can be a horrible problem, the people around them who don't try to understand them are a problem, but the unique way their minds are wired? Not a problem, for the most part. So, words like "rescue" are a little touchy, since it suggests that a child with AS must be rescued from himself. And we do have members who are entirely non-verbal and unable to function in anything resembling a normal way ... but they learned to type and communicate here. Organizations like Operation Rescue have a reputation here, right or wrong, as pushing things like chelation, a practice that most of the membership here strongly opposes. I think blueroses caution is strongly linked to that possibility, that someone at the conference might be selling a hocus pocus solution that could actually be harmful to your child or your family. There is, simply, plenty of that in the autistic services community.

But, you have also posted with us here long enough to know that there are nuances in all of this that transcend the "us" v. "them" mentality and that putting everyone's heads together creates amazing solutions for unique families. We remain very interested in hearing your experiences and progress because the broader this site can cast it's net for families, the better. There are no one size fits all approaches here. We all just want our kids to be their best selves.

I think another point blueroses makes is that it is very hard for a parent that has autism to attend parent support and research groups. They do get looked at with a skeptical eye; that has been the experience of those who have tried, even if they are there to talk about their kids. NT parents don't seem to know what to make of a functioning person raising kids who claims to have the same condition as their child. One would think they would jump at the opportunity to hear what it is like from the inside but, generally, that has not been the case, according to our AS parents who have tried. Still, I do see it all evolving; perhaps everyone can work on dropping assumptions?

Yes, exactly... A lot of the time, they will push quack cures, using the idea that this is the only way to "rescue" your child; only the cures don't work, and the only thing you're doing is taking your child's time to be a child, be himself, and using it for things that are anywhere from annoying to outright harmful.

Time to be oneself, to be a child, is important no matter what kind of autism you have. Even a profoundly autistic child needs to be accepted for who he is and taught in the way he learns best, rather than having people attempt to turn him into someone he is not.

I'm not saying autistic kids don't need therapy; in fact, I'm saying the opposite: I think the best way to help an autistic child--even a very, very autistic child, even one with lots of problems in addition to just autism--is to teach him useful skills, teach him to communicate, find out how he thinks and how he learns and use that to connect with him and teach him to manage a world that's set up for typical kids. Trying to turn him into a typical child is not the best way to teach him; it is probably one of the worst ways, in fact. It can set him back years. Many of us were subjected to that sort of thing, and had to spend time actually unlearning the things we were taught before we could learn things that were useful and allowed us to be more independent.

Neurodiversity doesn't just apply to those who have mild-to-moderate disability. It applies for everyone. It means accepting people as they are, no matter how different they are or how differently they think. It means taking into account how someone learns when trying to teach them. It means teaching people skills that are useful to them and help them do more useful things, rather than simply teaching them to blend in and "look normal". It means accepting our neurological differences and learning to work with people who are different from us. And all of that applies whether you are a nerdy Aspie engineer with a wife and family or a non-verbal five-year-old who hasn't got the hang of potty training.

So what would they say to someone who sometimes talks coherently and sometimes hoots and flaps her hands? Because obviously, you can't have both in the same person. Flapping one's hands just isn't something done by someone who can speak...

They've got this stereotype of autism that's just not realistic... I wish parents of newly diagnosed kids got to talk to autistic adults more often. All kinds of autistic adults, too, not just the Aspie types who are fluent speakers, nor just the nonverbal folks you can meet in a group home or an adult day care, but everybody with all sorts of autism. Teach them that there's lots of different expressions of autism; that everybody learns; that their child will learn, too, and that happiness is possible for everybody, whatever the severity of their disability. I wish that there weren't this adult/child divide, where people with little autistic kids never get to talk to the adults like what those kids might grow into one day. There's this idea that if your kid is autistic, they can't learn; but that's just not true. Meeting adults who obviously have learned things since they were little would be a good thing for parents.

i think we stray into dangerous territory when we make broad assumptions about groups of people. you cant assume all people attending such conferences or parent support groups have this same attitude, you would simply be wrong. its hypocritical to stereotype people because you think they stereotype others.

are we suppose to avoid parent oriented support groups because some people have a negative view of autism or are distrustful of adults who say they are autistic? where do you recommend people go for support? would nt parents be welcome at autistic-oriented support groups, or would they just be looked down upon as the views in this thread describe? support is practically non-existent in some communities. parents are often forced to wade through what is available to find what is applicable, we cant all be choosy because for many of us, there are no choices available. i would probably go to a support group even if it was biomedical friendly, not that i can even find one of those.

it IS important to realize that autism comes in many shapes and sizes. but its also important to remember that because it is so varied, and we dont know what the causes are, that some things work for some people and not for others. that means that each family needs to research and evaluate for themselves. every parent should do their due diligence before engaging in new therapies. certainly there is a lot of quackery out there, but i think you should be careful before you say, with a neurological disorder with such variance and NO KNOWN ORIGIN, that any specific therapy is of no use to anyone with that disorder. and every parent has the obligation and the right to research these things for their family's unique situation without ridicule.

as for discussing any treatments with the md, my 5 yr old autie knows more about autism than his own doctor. we have found the medical community locally is even more ignorant than the school administrators, who are pretty ignorant themselves. we are finding ourselves having to educate the educators and professionals, which makes for a very unsupportive environment for us parents.

i kinda wish i was closer to chicago so i could look into this conference. there are some sessions i would like to see. not because i believe in the biomedical treatments, personally i think the vast majority of that is hooey, but this particular conference does have some SpEd Law and Advocacy Training sessions i would be very interested in. thats me wading through what is available to find what is applicable for my family's needs.

I think it is such a shame that so many of these Autism organizations are so misunderstood. I do not personally know of one single autism organization that pushes any one type of treatment. The organizations I am familiar with offer information on all aspects of treatment and assistance. There are members of these organizations that push 'cures', that is true. But just like any other organization, you can't judge it by a few members. I do not believe autismone pushes biomedical or cures. They offer information. You take what you want and leave the rest.

I am personally going to see the vendors and listen to speakers that I am interested in. I am an adult and able to decide what appeals to me and what doesn't. I do believe that every suggested treatment, therapy, biomedical, diet, supplement, etc...has helped some people to live more functional and fullfilling lives. What works for one person, does not work for another.

I think any person with ASD, no matter how high functioning would be welcomed with open arms at this conference and would be a value to it. I do get offended when these organizations are mocked or vilified because they do offer information on treatments that some people laugh at, and that is all they see, rather than seeing the full picture of what the organization has to offer.

My father, we have recently found out, has autism and has made it through life in his own way. He has struggled. He is a fully functioning adult and owns his own business. Everything he has accomplished has been a hundred times harder for him than it was for other people, and he could never figure out why. He is so good with my son. He is able to intuitively know how to talk to and explain things to my son in a way that I am not naturally able to. My point being, that very high functioning ASD people that have overcome things in their lives are fully welcome.