"My Daughter Is a Gift, But Her Autism Is Not"

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http://www.huffingtonpost.com/ravishly/ ... 63052.html

I found it interesting that in her final paragraph she eloquently puts the case for a central part of the neurodiversity idea [my bolding][I guess I can't bold in a quote, so I will offset the sentence with some asterisks *** ]:

Background: I'm NT with a mildly-affected autistic daughter. I agreed with most of this article, except I cringed at the word "cure." I've been reading a lot on what seems to be the overwhelming majority vocal opinion of autistics, about how if parents of autistic kids try to change them it means they don't accept them, don't love them, might as well be those murdering parents. I'm trying to understand. But I'm feeling defensive. I love my daughter and I'm an excellent mother. Ok, nobody feels THAT confident. But I'm a good mother.

Like the author of that article, I too am struggling to understand the idea that embracing neurodiversity suggests we not help our children. I know there is a big divide between autistics who expect parents to embrace autism without question and those of us who dare question whether our children might be helped with therapies.

I feel as though I'm a respectful parent, thoroughly vetting therapists with mama-bear on high alert, and doing my best to demonstrate patience at all times with my daughter. I try not to complain in her or her siblings' presence. I don't blog my woes for her to find a decade from now.

But here's the thing: parenting is hard. One day we were regular people leading our lives and then BOOM! Now we're in charge of ensuring the safety, health and happiness for other peoples' lives, too. We're all just figuring it out as we go. It's accepted that parents of all children seek comraderie through moms groups, roll their eyes and smile with another parent at preschool, and vent about newborn sleep patterns. They might try timeouts and find another "gentle parenting" method works better for a rowdy 3-year-old, changing their plan as they learn about their child.

But with an autistic child, I'm judged every day by strangers outside or at the grocery store. Can I vent? It's hard. For me. I know, it's about my kid and YES I'm doing all I can to ease the meltdowns FOR HER. But it's still hard for me. I'm new, I don't get it, trying to figure it out is scary. Why am I not allowed to vent like a parent of NT kids?

My daughter screams for hours each day. The poor baby! It's also hard on me. Not nearly as hard on me as her, I'm sure! But I try, I try. I grind my teeth and cry in private and hold on to her to keep her from hurting herself. Why can't I seek help for her without judgement? I will try ABA. Do you know why? Because it's covered by insurance. Money is tight. My capacity to learn to implement my own ABA, PRT, RDI, or whatever else exists is limited because I'm in the thick of the meltdowns all the time. I have my concerns with therapy and address them daily. But yes, I'd like to change something about my daughter. Maybe I'm wrong, but I think she would be happier finding ways to not scream for hours every day. Am I doing it the right way? I have no idea. I'm trying, I'm paying attention, I'm being respectful to her. I would also like her to stop screaming. For my sake. I exist, too. I'm still a human. A human who hasn't slept through the night in 4 years. Yup, neither has my daughter, and that is so hard for her, it makes me ache for her.

And I hate the added guilt I get for ever thinking about me.

And now that I got my defensiveness out of the way, my ears are open -- shoot, no idioms? I'm listening and would love to hear differing opinions on the HuffPo piece.

I was using mild to mean high functioning. The diagnosis is HFA. She is verbal with a high IQ and doesn't have the big motor stims or verbal tics I would associate with low-functioning autism (I could be totally and embarrassingly wrong about my expectations of what autism looks like.) Unless she's in a meltdown, she can appear typical - maybe shy or odd or having a grumpy day - but the assumption is typical. I've been made to feel bad about claiming the ASD label by parents of low-functioning kids, which is why I clarified that she's only mildly affected. I'm sure our troubles are laughable to other families.

I wrote something here early and deleted it because I knew I needed to adjust the tone.

I don't know if the OP is or is not a parent, but I question the intent of dropping this in the parent forum. I do not really understand the purpose.

Is it:

1) Trolling/Clickbait for the purpose of riling up the sub-board.
2) A "gotcha" post designed to get a certain type of a response, and then return to flame it.
3) A genuine desire to see how parents feel about things without having to ask directly?
4) Someone planting it here because he/she has had a painful childhood and thinks that by observing what happens he/she will have some cathartic moment.

I don't understand.

I am not a "Mommy Blog" kind of person---this is not a criticism of those who enjoy the medium---it just is not my thing--whether NT or AS. I know there are elements that cross-over to a forum because I suppose each post could be looked at as a mini-blog post, but to me they are different things.

I really hate Mommy War stuff, too. This seems like a thread designed to start one.

As parents we are damned no matter what we do. I have the luxury of probably caring less about what people think than most people. Many parents here, especially the ones that identify as primarily NT do not. And even I feel a sort of pain inside when some slack-jawed idiot glares at my son for something that if he did it at home, would be A. OK. Like it or not, kids' behavior reflects on the parent and a lot of parents if not most are going to care when they get unsolicited comments or "advice" or glares from people.

Many of us also have families and/or friends or professionals who constantly push us to do more to help change our kids regardless of whether we think a particular intervention is necessary/helpful or not.

The parents who come here, are generally mindful of whose house they are visiting, and generally respectful of the concerns of adult aspies. I don't think we also need to pass some kind of ideological purity test. We are looking to solve challenges with our kids in an AU/AS friendly way, or we would post elsewhere.

I know that some of the adults on here think parents are the enemy because of their particular childhoods. We are not all the enemy, if that was the thought behind this thread.

If the OP wants a dialog, I think the OP should be more direct about what he/she is seeking.

I don't think posting the article is designed to start some argument, that seems to be reading too much into things.
The article is about how a parent thinks of her autistic child and autism in general, so it is natural to post it in the parents forum so other parents can comment on it and say how they think of their children and autism.

I think that this mother's misunderstanding is most clearly seen in the part of the article where she describes a birth defect and a physically disabling genetic disease she has, then follows it up with this:

"Perhaps this is why I simply do not understand the push for autism to be considered just another variation of normal. Or something to be merely accepted, without searching for treatment, prevention or even a cure."

Perhaps the thing she is missing is that autism, being neurological, pervasive, is not comparable to her medical conditions. It is not merely something that happens to the body; it is a part of the self because it is the way the mind is built. So when people talk about autism being a negative thing, they are necessarily talking about somebody's personality and interface with the world being negative. She's not understanding that other people see autism as something they are rather than something they have.

Autism cannot be compared to localized conditions. The only proper comparison is another sort of neurology, and when you look at neurotypicality (meaning non-autistic in this case), it has problems associated with it as well, but people work to fix the specific problems rather than condemning neurotypicality itself. When the NT "mindreading" goes to far, and people start imagining sinister motivations that aren't there, no one says being NT is a disorder that needs to be cured; they say that that person needs to stop reading into things so much. When NT social preoccupation leads to social hierarchy, no one says that there is something wrong with being NT, but that social relations need to be improved. This needs to be the attitude towards autism as well; not condemning the whole neurology, but working to fix the problems with it.

That attitude is inclusive of some therapies, but it is not inclusive of any sort of cure. The crux of this attitude is the belief that autism itself is not a problem. This belief is what some of these parents are lacking; instead of seeing a mix of neutral, positive, and problematic symptoms, instead of recognizing that some symptoms only cause problems because society caters to the majority, instead of understanding that cognitive disability and other co-morbids complicate autism (but are separate from autism), instead of considering that how autism looks from the outside is worse than what the child actually experiences, they seem to have a simplistic view of autism as One Big Problem.

Dispelling that sort of simplistic perspective is precisely the purpose of the neurodiversity movement.

I appreciate your viewpoint. ^

I will think on the comparison of neurology vs defect. First impression, you're right. It's obvious. Second, autism is often caused by genetic abnormalities. Defects.

The important piece here, as I see it, is what you've brought up about seeing "autism" (the overarching, broad description of all related strengths and troubles) as the problem, rather than specific problematic symptoms that make life difficult for an autistic child and her family. It is indeed also important that autism not be used as a bad word.

I take issue though with the automatic judgement some have for the author or my wanting to change some aspects of my daughter's life for the better. I'm really trying to understand this point.

Is your criticism of the article the use of the word cure (I agree) and the comparison of conditions (I see your point)?

Sent too early.

While I appreciate the inclusive ideology behind "neurodiversity," the most vocal proponents of this new-to-me term do not approve of mothers like this author. To choose to help a child pushes us out of acceptance with the neurodiversity folks. If there's no room for problematic symptoms and therapy among those people, it's difficult to join them. Perhaps the problem is just how vocal the extremists are. I value differences. And I want my family to be happy.

It sounds like we have the same ideals. I just fear being surrounded by a push to just accept the bad parts of autism in my house.