A question for parents with a child with Autism

[daughtersrus]

A friend of mine has this posted on her facebook account. She doesn't have a child with autism so I'm assuming that it's one of those messages that gets passed around.

My wish for 2010 is that people will understand autism is not a disease; people with autism are not looking for a cure but for ACCEPTANCE.... 93% won't copy and paste this, will YOU make this your status for at least one hour?

My child doesn't have autism but she does have a genetic disease. Of course I want people to accept my child but I also want a cure! So my question is, if you have a child with autism do you want a cure?

 

[m&m's mom]

OMG! I JUST posted the same thing to my friend that posted it on her FB page. MY DD is a tiny, tiny bit on the spectrum and I definitely want a cure!! I can't imagine anyone wanting this if they had a choice.
Acceptance is good too, but give me a cure anyday.

 

[KirstenB]

With every fiber of my being!! I get very frustrated, because people sometimes speak of their child being a genius who having some special skills they attribute to autism, like it's a tradeoff.

Our dd is not some little genius in a karma tradeoff for brains, vs. social/communication skills. Quite the opposite. Autism interferes with her ability to pay attention and learn in school. Add to this the obvious social/communication issues, and you have a child who is overwhelmed by this condition every day.

 

[JerseyJanice]

Autism is so misunderstood that I guess acceptance is all some families are looking for at this point.

I mean, we don't really know what causes it or how to prevent it. We're only beginning to understand how to treat it, so I think in a lot of people's minds, acceptance is the first thing to aim for.

 

[s&k'smom]

It burns my butter when people call it a disease, do I want a cure, IMHO no for me, my son is who he is and I love him for who he is, but I am suffering because he's also a 13 year old teenager who's driving me crazy!

 

[Pembo]

I didn't read the replies but as I understand autism it is a brain development issue so a "cure" would mean discovering when, in utero, the brain development issue occurs and "curing" it.

My ds has Asperger's. I know he will never be "cured" he just needs to learn how to function as best as he can in a neurotypical world. Teaching tolerance and understanding is what I would like to see more of.

Would I want to go back and change my son to not have autism? I'm not sure, then he would not be who he is and I would not be the parent and teacher that I am. Would this have been an easier road? Sure but it is my road.

 

[iwrbnd]

I saw that on fb, too. I actually didn't copy and paste it because I didn't agree w/it. I have a son w/mild autism and a son w/mild aspergers. Do I want a cure? ABSOLUTELY!!! I love my boys exactly who they are, too, BUT I also want them to have the best life possible and this is not it!!!

 

[okeydokey]

That's weird, just today I saw the same message on facebook but not with autism, with Down's Syndrome.

 

[Nik's Mom]

I have 2 autistic children. I love them dearly and cannot imagine my life without them. But without a doubt, I want a cure for autism. I see my children struggle every day to do things that neuro-typical children can do so easily.

There are days when it is so hard to deal with. I can only imagine how frustrating it is for my kids to cope with autism. While I am proud of how hard they are working to over come their disorder, I still hope and pray for a cure.

 

[Nik's Mom]

I saw that on fb, too. I actually didn't copy and paste it because I didn't agree w/it. I have a son w/mild autism and a son w/mild aspergers. Do I want a cure? ABSOLUTELY!!! I love my boys exactly who they are, too, BUT I also want them to have the best life possible and this is not it!!!

Well put!

 

[Minnie*J*]

A friend of mine has a child with autism and a child with down syndrome. She has said that she does not want a cure for either because they are part of who her children are.

I don't know how I would feel as neither of my kids have a disability but I think I would want a cure.

 

[Val]

My youngest DD12 has hearing loss and wears bilateral hearing aids. She has a slight speech impediment as a result, but is a straight A student. Do I accept her for who she is- special ears and all!?! Of course!!! But I would be overjoyed if they came up with a cure for her hearing loss. It pains me that she has extra challenges that most others don't have, and that sometimes she is teased or excluded because of those challenges. If would be wonderful if she was "perfect" so she could sail through life. OTH, learning to deal with these challenges has made her who she is, and she is one tough young lady.

I guess my point is that I would love to have a hardship taken away or lessened for any of my children, but I also recognize that sometimes those hardships can give them insight that they otherwise might not have had. But don't we all wish that our children had the easiest go of it? So yes, I would love a cure, but I am also realistic in realizing it won't happen.

I think the issue is how accommodating we expect others to be. Yes, people should accept her, and make some accommodations. The school has an obligation to allow her to sit up front, to use close captioning for movies, and to provide the assistive technology she needs to succeed at school. Her peers have learned to face her when speaking, and to pass the FM microphone around during discussion time. At the same time her behavior must be appropriate and as close to her "normal" peers as is reasonable. Behaviors such as yelling and being too loud with her voice, sitting too close, grabbing people's faces so she can lip read, and interrupting conversations because she couldn't hear that two people were talking is inappropriate. She needs to understand social nuances if she is to make it in the "real" world.

Both "sides" have an obligation- society to accept differences, and those with differences to try somewhat maintain appropriate social behavior in mainstream society as best they can within their abilities. Finding where the two meet is the difficult challenge- neither side should do all the adapting! Unfortunately, there are individuals on each side of the proverbial aisle who want everyone else to do the changing. Now.....whoever comes up with the perfect solution to this "meeting in the middle" will be one very, very rich individual!!!

 

[Luv Bunnies]

My husband and I both pasted that statement onto our FB pages today. Our 14 year old has Asperger's. The older and bigger he gets, the more people seem to expect of him. We just want him to be accepted for who he is and all the wonderful qualities he has. Autism is not a disease. Researchers still aren't exactly sure what causes it. I would love to be able to give my son a pill or a shot that will cure his autism. But, realistically, I know that's not likely to happen in my lifetime or his. So, the best thing I can do for my son is to help educate others and strive for acceptance of his quirky behaviors. Rather than pushing him to act "normal," we choose to embrace his differences.

 

[TheZue]

Would I want to go back and change my son to not have autism? I'm not sure, then he would not be who he is and I would not be the parent and teacher that I am. Would this have been an easier road? Sure but it is my road.

That is always my question too. I'm not sure my son wouldn't lose a lot of who he is if we waved a magic wand and took it away. I guess it's a real question of wondering where the autism begins and where Adam begins and I'm pretty sure there is some overlap there because it profoundly affects how he percieves and interacts with his world. I too would like acceptance. I guess if there was a cure I'd have to think reallly hard about what that would mean for him.

Also if you talk to a lot of adult autistics they aren't fond of the idea of a cure. That really impacts my view of it.

 

[KirstenB]

That is always my question too. I'm not sure my son wouldn't lose a lot of who he is if we waved a magic wand and took it away. I guess it's a real question of wondering where the autism begins and where Adam begins and I'm pretty sure there is some overlap there because it profoundly affects how he percieves and interacts with his world. I too would like acceptance. I guess if there was a cure I'd have to think reallly hard about what that would mean for him.

Also if you talk to a lot of adult autistics they aren't fond of the idea of a cure. That really impacts my view of it.

Yes, but remember, these adults with autism can communicate. They have the ability to process what autism means for them. They have the ability to self-advocate. By definition, I would argue that makes them pretty high functioning. When I pray for a cure, I'm definitely thinking of those who are more severely impacted.

 

[Judy from Boise]

My DD who is high functioning would not want to be cured, because it is who she is. What I think many more people could agree on is not a cure, but a prevention. If we could prevent new cases that would be ideal.

My DD was about 8 when the whole diet treatment thing came out, I talked with her and basically asked "would you be willing to give up potatoes the rest of your life to be "normal"? She thought I was crazy!

 

[Aisling]

I honestly never knew that children/people with autism weren't "accepted".

 

[TheZue]

They can have a heck of a time getting a job. I once had to listen to a rant about the "retarded" kid taking up the teacher's valuable time by one of the parents in my son's kindergarten class when she wasn't aware that I was his mom. My son has a normal IQ, brought an extra staff member into the class room who actually helped the teacher a lot with the other kids as well, yet that perception is still out there. There are still some major acceptance issues.

As for the adults self advocating, some of them can't communicate without a computer or assistive device which would put them in the heavily affected category. Not only that there are a lot of adults that didn't talk until they were almost 10, or were instituionalized as teens who went on to function somewhat well as adults who wouldn't want a cure. They just didn't like how they wee treated.