Parent Driven

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So I overheard a customer today talking about their child getting diagnosed with AS, and that it's only "getting worse" as if it's some huge tragedy!

It made me wonder if this whole cure movement is driven by parents who haven't progressed to the acceptance stage of grief. They can't make the connection that being different isn't "wrong" and want to fix it so their broken child is normal? Just look at people like Jenny McCarthy, claiming her child was cured. You don't usually hear people with autism desperately seeking a cure.

Although I get low moods and wish I was normal now an again, I think I am slowly progressing toward acceptance for myself. Like many autistic people I want acceptance from others, not a cure.

Odd, when I was diagnosed with AS my parents were somewhat indifferent about it (though not uncaring) while I was terrified about losing my individuality. I only started to be more positive and even proud (though I use the term loosely) about it a couple of years afterwards.

Well, it probably is harder than usual raising a kid with AS. That doesn't mean that the parents won't support of love them. I don't think parents should be slated for expressing difficulty; they're not saints.

I love my AS son very much. He is the most interesting person I have ever met and I would change a thing about him...

That said...

AS gives him difficulty, and he feels things deeply. Kids pick on him, leave him out, treat him differently because of his quirks, his language and his difficulty keeping up sometimes. This hurts him...and subsequently hurts me.

When he is happy, I'm happy, when he is hurting I'm hurting with him. I would do anything to take that hurt away but all I can do is help him cope. It breaks my heart when he says he's stupid when I know he isn't at all. He says this all the time. He says this for a lot of reasons.

I understand why parents say it's getting "worse". AS is hard to understand, you have to take your conventional thinking and throw it out the window to try to understand a mind that is foreign to your own, and then learn to guide that person. It's hard, and painful for you and your child.

I don't think it's always an acceptance thing. Everyone wants their child to be happy. It's hard to watch your child struggle and hurt. Those who are looking for cures want their child to have normal, independent, happy lives. Sometimes when you have a child with any kind of challenge, you want that to go away because of that. This goes for anything that gives your child difficulty, not AS.

I'm not a curbie, but I know that people want what's best for their kids and I understand why people are looking for a cure. I also understand why those with AS don't want one. Neither side is wrong.

What I don't understand is why, when it comes to ASDs or any other disability or congenital condition, a lot of people jump first to changing the victims of discrimination to make the normals more comfortable with their existences rather than trying to make the world a more tolerant place overall, where being neurotypical and able-bodied isn't the only valid option or path to happiness. People of other sorts of minorities - racial, gender-based and sexual, to name a few - have been able to make strides in order to make society accept them and treat them better. There is no good explanation for why we are not just as worthy of making for ourselves and having an equal place in the world as the aforementioned groups are.

This makes me happy that I was born in the 70s, before that whole parent driven cure movement started. I was allowed to be a kid, and I wasn't forced through the ABA system, like a sheet being squeezed through an old ringer machine from the 50s. How could today's parents be so full of hate? They seem to be a bunch of high society model wannabes who dream of having perfect children. If any of their kids turn out to be *gasp*, on the spectrum, they're willing to put every cent into any type of cure that they can get their hands on. I long for the day that all kids will be free to be, just as they are, and that they're born to the right parents, instead of being born to the ex-high school bullies, who see people with any type of disability, as being so-called ret*ds, who ruin life for their families.

That's a good point... I've known kids with learning disabilities who had the misfortune to be born to Mr and Mrs popular. When Jock and Jill grow up and realise that life isn't as pretty as they were promised, it can lead to them taking their frustrations out on children who, if they'd been their contemporaries, they'd have given swirlies to. NT children can suffer too, if they're not the kind of person their Mommy and Daddy wanted. But I shudder to think the kind of life an aspie might have if born to some of my old bullies.

It is very parent driven. I have come to the point where I think for the advocacy purposes it is best to kick the parents out.

The problem is very neurotypical parents who cannot accept thier child is different. And when it gets down to it, its different, thats all.

The other reality is many neurotypical parents are absolutely clueless about raising ASD kids. I see it all the time on this board. Instead of turning to adults with ASD for personal experience growing up, they turn to NT parents for support and advice, the result is an echo chamber of cluelessness or worse.

The truth is these parents knowledge of parenting comes from being NT, and do know how to raise NT kids. But once it comes to ASD kids many are in fact terrible parents, because much of it is completely beyond thier own personal theory of mind of how children work. The folks from autism speaks and the pro-cure people are the worst of the lot. The reality is the problem is the NT parent, who wants a normal kid and life, and yes, that IS A PROBLEM. Because it signals a lack of tolerance or acceptance of thier own child...and to me a lack of real love. The people that need a cure are those advocating for one. Autism is not cancer, it does not need a cure. It needs some treatment for some issues related to it, and it needs acceptance from other people, and it needs strong advocates who are not looking for a cure, but equality and justice.

BTW: The bullying and autism PSA produced in the UK is a good example of what should be coming out in the US. Not the Autism Speaks garbage.

[quote="Lene"]Well, it probably is harder than usual raising a kid with AS. That doesn't mean that the parents won't support of love them. I don't think parents should be slated for expressing difficulty; they're not saints.[/quote]
Of course it is difficult for parents watching their children struggling in life. However, a lot of the struggles we experience are caused by other people, e.g. bullying in school. Some parents seem to realise this, and learn to accept the AS, whereas others seem to blame AS for all the struggles and want a cure.

Is AS the cause of these difficulties, or are they caused by other people's inability to accept people who are different?

Maybe parents who put so much effort into seeking a cure would be better channeling that energy into promoting acceptance?

I agree 100% with this and I think some parents actually do both. Sometimes though, when you know that this kind of acceptance is a long time coming, if ever, if a cure would give that to your child sooner wouldn't you at least consider that as an option? I know people who every day deal with kids that bully their child, teachers that don't understand and don't have time for your child so their child gets sent to the office because of behavior problems when they are actually good kids, when they are put in an environment that is not conducive to their learning and they aren't getting the education they deserve when they are trying their hardest and struggling when you know they are capable learners. It's hard on them, it's hard on my son and he's in a wonderful school where they absolutely love him. I don't know how I would feel if my son was in public school where they don't have this kind of environment and he was coming home crying every day because he doesn't understand why he is treated the way he is. I would like to change society, but I see the impact is has on these kids every day and it's damaging. And I know from personal experience that what happens as a kid can stay with you for the rest of your life. Or moreso even, when a child will never be able to live an independent life because their symptoms are so severe that they can't fully function, and who is going to take care of them, and what are people going to do to them when your gone? My solution to these issues for my child was to put him in a school where people love, accept, appreciate and nurture what these kids bring to this world. Not everyone has that option and not every child is that lucky.

I am all about awareness and education and I spread that as much as possibly can, but I understand the other side too because I see kids and parents who hurt, and who are afraid because of they way their child is treated, by everyone, even family. I think the point I wanted to make is that not everyone want's a cure so their child can be "normal". I think there is a lot of that unfortunately, but it's not everyone. Personally though, I would like to be able to cure the sensory issues. That has to really suck to live with. I can work with the other stuff.

One thing I will say about the awareness/acceptance side, I do think that's where the cure movement does the most damage is with the negative vibe it gives out. I think that it is counter productive to the awareness efforts and that is to me what is unfortunate. I had a shirt on with the logo from our local autism walk and a lady asked me if I work with autistic children. I told her that my son was autistic and she said "I'm sorry". I told her not to say that because my son is wonderful and it's nothing to be sorry about.

That's the sad part for me.

You can accept your child the way they are and still want a cure, at least for some symptoms. It's not that they blame AS necessarily. There are a lot of great things that come with AS, but there is a lot of difficulty that comes with it too. Parents by nature want their kids to be pain free. It's a curse

I wonder if society changed and accepted autistic people the way they are if the cure movement would even be there at all?

What is this?

The reason that we have less acceptance than other minorities is in the very nature of AS: we lack social influence.

It just so happens that the NT parents of AS children and Autism Speaks have a decent amount of social influence.

edit: I thought the conclusion one might draw from this would be obvious, but I think I was excessively vague, as often is the case. I believe that we should be willing to collaborate with Autism Speaks instead of insisting that they function in ways that only people with AS see as appropriate. If we want to change the world, then we need power, and if we want power, it's probably going to be easier if we work with NT's and let them use their black magic.

Last edited by hrmpk on 07 May 2010, 9:25 am, edited 1 time in total.

I love my son very much. That said I don't believe he enjoyed pooping 12 times a day. I did not enjoy my diarrhea and constipation, rashes, and constant sickness. I am not diarrhea and constipation and it is not how I define who I am. We are both doing biomed. Now that said I have different goals than most parents with a child on the spectrum. He will not be cured but his (and my)GI problems will perhaps go away and he will not be sick all the time. We are both going through chelation because we both have lead poisoning from my husband doing lead soldering without proper ventilation when I was pregnant and when my son was a young baby. I expect that my son will poop one to two times a day and that he will feel better, I expect his rashes and vomiting to go away. I have the reasonable expectation that both my son and I should receive proper medical care despite both of us being on the spectrum. Anything else is garbage...telling parents feeling miserable is part of ASD is just a cop out to avoid providing proper medical care.

It has done nothing but help me to do biomed but I still have AS. It has also helped my son however he still has ASD. I believe that the biomed helps with GI problems, improves health but does not remove the child off the spectrum. We are also doing ABA but only so that my son knows the basic information he needs to be in regular classes. Special ed. classes were hell for me growing up. I do not want my child going through that and I'm willing to have him sit for 5 minutes everyday and work with him so that he learns his shapes, colors, and alphabet. My parents had to sit and work with me to keep me caught up in school and I will be happy to help him so that he doesn't end up in a miserable special ed class. I think all children should use the toilet and the ABA therapist is helping me to potty train my 4 year old. I don't believe requiring a child to poop on the toilet is parental abuse or unreasonable of me to expect. I also feel that teaching a child to wait in line and take turns is important.

Being differents fine, being disadvantaged isn't fun.