23 Apr 2009

Horse Mum gets in touch

I was very interested to read a few comments on my "Horse Boy" blog post from Kristin Neff, the mother of the child featured in the book. I don't think she likes what I had to say.
I am happy to respond to her comments but since she wrote so much, I thought it warranted a separate blog post.
My comments will be in red below.

Comment 1

Might be a good idea to read the book before slamming it.
I have not slammed the book so much as the media articles I have read and listened to about the book and by the book's author. I have read several long excerpts from the book in a UK newspaper and listened to a detailed and uncritical radio interview with your husband on Irish radio. I have made it clear that my criticisms are based on all these.
It's amazing how quick people are to judge things, with almost no information to go on.
I disagree that I have judged with "no information". The book has featured prominently in many major newspapers and magazines. All the information made public in these gives me plenty to make a judgement on.
I am Rowan's mother, subject of the Horseboy, and I can tell you that I feel like I used to when people would judge me at the supermarket when Rowan was having a tantrum, assuming I was a horrible mother and Rowan a brat, without knowing anything about us at all.
Do you really call your son "Horseboy"? [Edit, she never called him "Horseboy", I made an error and apologise for this.] Wow. I'm sorry that you are upset at my criticism's of your husband's articles and what I have read of his book. It appears from what I have seen, that most people think what you've done is just great and admirable. I don't. When you decided to make your story so widely known you must have expected there would be some people who would be shocked and offended at what you have done and have said. Neither do I agree that this is comparable to strangers making snap judgements in supermarkets.
I hope people take more time to learn about you and understand your personal stories before making such harsh and unkind judgments.
People are free to judge me based on what I have made available in my writing here. I have a few detractors, but this is a blog of little importance so I am ignored by most. Whether my criticisms can be deemed harsh and unkind is, I think, a matter of opinion.
And in fact, based on ther viewpoints you've expressed here, I think many of you will actually find resonance in the book. We've had hundreds of e-mails from other autism parents (those who have actually read the book or seen the documentary) who've expressed their gratitude that we were able to raise awareness of the incredible struggles but incredible love we have for our wonderful children.
That's nice. I think there's already plenty of awareness of our struggles and love and not enough about respecting autistic people and their needs.
(In fact, this is why our next book will about about the Gifts of Autism, because we believe that for every problem posed by autism there is a corresponding gift that us supposedly "normal" people can learn from.)
Smart move, I'm sure there will be a market for it too.
By the way, the first thing we did when we got the advance was to open up a non-profit riding center for families who couldn't otherwise afford hippo-therapy (soaking up a huge portion of the advance). We wanted to give back to the autism community for our incredible good fortune.
Cool, so the poor children in the area can ride for free or at a greatly reduced cost? Do you offer shamanic healing at your centre or is it more like the many great equestrian centres already out there working with disabled people?
I hope all of you also find happiness, fulfilment, and prosperity in your lives. Autism parents are some of the bravest and most loving people around. Can't we support each other?
Thank you for your kind wishes. Some parents of autistic people are brave and kind, some aren't. I'll support those whom I think are working to make life better for people like my son and I'll speak out against those who I see preaching nonsense and disablist language about people like him.

Comment 2
Also, since I suspect that the views expressed in this blog will make it unlikely many will actually read the book, you might be interested in this passaage from the end of the book (p. 348-349).

"Rowan is still autistic - his essence, his many talents, are all tied up with it. He has been healed of the terrible dysfunctions that afficted him - his physical and emotional incontinence, his neurological firestorms, his anxiety and hyperacivity.
Kristin, I consider the expression "emotional and physical incontinence" to be a revolting way of describing a child. What do you mean also by "neurological firestorms"? Could this be temper tantrums? I agree we all wish for our children to grow out of incontinence, have much fewer tantrums, be less anxious and hyperactive. I also agree that such development, which usually takes longer for autistic children, does not mean that the person is no longer autistic.
But he has not been cured. Nor would I want him to be. To "cure" him, in terms of trying to tear the autism out, now seems to me completely wrong Why can't he exist between the worlds, with a foot in both, as many neurotypical people do? Think of immigrants to the United States, living with one foot in their home language and culture, the other in the West, walking in two worlds. It is a rich place to be. Can Rowan keep learning the skills necessary to swim in our world while retaining the magic of his own? It seems a tangible dream.
I like this sentiment a lot.

Comment 3
And one final thing. One of the sad aspects of many people's dismissive reactions to the idea that we consulted traditional healers and shamans to help our son is the incredible arrogance and ethonocentrism of Westerns who believe that no healing tradition has any validity except their own.
I dismiss that which has never been shown to work. If shamans can prove their effectiveness then let them do their healing thing everywhere. That's not arrogant "ethnocentrism" just applied reason.
Humans had to find ways to improve well-being and happiness for thousands of years before modern science came along, and many of these healing traditions are very effective.
That something has existed for a long time is no proof that it is worth continuing with, especially not when dealing with health and medicine. If the ancient remedy is shown to work (like willow bark) it is used in modern medicine. There is just medicine that works and that which doesn't.
(Not saying that science isn't also wonderful of course, and by the way we do use traditional therapies such as ABA as well, but do we have to restrict and limit our options?)
Yes I read an article about your son 2 years ago in the Times, that you used, "speech and occupational therapy, applied behavioural analysis, chelation to get rid of toxins, supplements to adjust the child’s chemistry this way or that." These techniques were not based on science either, chelation in particular is potentially fatal. Still you make out that it's the horses and shaman stuff that has wrought this amazing, no, miraculous change in your son? How do you know? It's nice that you think science is wonderful. I think so too and apply a bit of scientific thinking in weighing up stories like yours.
If you were to spend any time around traditional cultures, you'd observe their beauty and integrity for yourself. My husband has been a tireless advocate for the rights of indigenous cultures, spending years of his life, without pay, to advocate for their land rights (he played a key role in the San of Southern Africa winning one of the largest land claims in history.) But people are so quick to ridicule and dismiss what they don't understand.
I'm sure there are many fascinating, beautiful and wonderful aspects to cultures you have been around. I am happy that your husband works to advocate with these. I do not ridicule the people, but I do not wish to adopt methods of medicine that have no basis in evidence, no matter how lovely the people practicing it are nor how long they have used it.
As parents of autistic children we understand this attitude all too well don't we, when people make fun of and dismiss our children without bothering to try to know or understand them? Isn't there a better way? A way where love and tolerance and patience and compassion allow us to open our hearts and minds to each other, rather than viciously attacking what is different and unfamiliar?
Not similar at all. The people are not being dismissed, just their non effective medicine. I do not viciously attack them at all, they perhaps are limited in the medicine available to them in far flung corners of the world. I have not viciously attacked you or your husband either, but I am irritated that you who should know better can believe in magic, can use your son to market a book in a dramatic way that jumps on the autism bandwagon, choose to use offensive and disablist language in describing autism and your son and promote nonsensical healing "exorcism" ceremonies that can only be described as abusive.

18 comments:

Jax said...

I'm not getting any red, which is making this rather difficult to follow I'm afraid.

And I'm not sure your blog is of quite as little importance as you think any more :)

Sharon said...

@Jax, thanks for letting me know, and the ego boost! I'll try to change it to be clearer.

Jax said...

much clearer, thank you :)

and I have to say, that I didn't think your original analysis of the book seemed particularly harsh, nor do your comments here.

3laine said...

Sharon, well done for stating the obvious once again. I don't think your commentary here is really harsh at all.

If this woman is so worried about how people judge her as a mother, what her son must be going through is even worse. Part of having autism to me, is the constant fear that you are being 'judged'. In a way, it is exactly like being on Big Brother.

I am horrified to see the lengths this woman and her husband would go to, just so they would have a nice, 'normal' son, who is now 'cured' of 'emotional incontinence'

In college, I would have learned about a lot of 'natural' healing therapies, used to cure diseases. Most of them are unproven.

There are a few drugs like Aspirin, Digitalin and certain chemotherapy drugs, which originate from natural sources. Unlike the shamanic rituals outlined in the book, these have actually been proven to work scientifically. It can take up to 10 years from the time the natural resource is discovered, until the time it is actually sold in the marketplace, as a drug.

In between, there are lots of clinical trials, to see whether or not these natural products have any effect. It is very rare that something will actually make it to the marketplace, before it has been proven that it is 100% safe and there are NO side-effects. It also has to be approved by the Medicines Board, etc. before it is sold.

My apologies for this terribly long comment, but I'm trying to explain how myths are different from actual science. I certainly don't believe in 'miracle cures'

Sharon said...

@Jax, great. I'll remember not to use that technique again. I'm glad my comments don't come across as too harsh. I'm not trying to be contentious or hurtful, but I feel the need to express my disagreement.

@3laine, don't worry about long comments, they are always welcome. I like it when someone has something to say, especially when it's so well worth listening too. Thanks for outlining the huge amount of effort and time taken to bring a drug into use. I don't believe in miracle cures or 'healings' either.

Gonzo said...

*sighs*
You have an incredible patience, Sharon! :D
Unbelievable, how some people are so completely free of self-doubt, that they are actually surprised and deeply offended by being criticised.
When I ridiculed Jenny McCarthy's books, I didn't nearly research as much as you did, I only had a quick "look inside" on Amazon to realise what drivel they are.
Then there's the "I wish my Kids had Cancer" book, that one doesn't even need to be opened, to make a judgement!
To manage to "read the whole book", it would actually have to be literature.
Damn the ego of some people!

Chun Wong said...

She's obviously feeling very hurt and got at by people and so is lashing out, a common and understandable reaction I guess. As soon as you put anything out onto a oublic forum - book, blog, blog comment, TV appearance, radio appearance etc. - you're going to get criticism or adverse reactions from people who don't agree with you. It's hard but it's the way things go.

kathleen Leopold said...

I am just waiting to see "Shaman in a box" being pushed on cure sites...Or better yet-"Train at home to become a Shaman, in 3 easy lessons..vision quests and autism cures can be yours for only $19.95!"
I thought that both your original post and this one were actually very well thought out..

The Biologista said...

I find it rather difficult to read the Horse Mum's comments without becoming angry. In particular, the plans for a second book seem fatuous and wilfully ignorant of reality. We are not all equally apportioned defects and gifts whether we be autistic or not. Silly quasi-spiritual and wishful thinking is completely counter productive.Some people live with real problems and no special gifts to serve our sense of justice. Ignoring that fact helps nobody.

Jean said...

Hear hear Sharon!
It would take me about 6 months to construct an argument like that. I can't help feeling a little sorry for that lady though...she must be a little naive not to expect ridicule from any half-rational parent.
I wonder what the next Cure will be??? We should set up a poll!
p.S can't believe she calls her son Horseboy...i sometimes call mine The Toad, but i'm not gonna make megabucks out of that
XXX

lisadom said...

1. Dang! she has beaten me to the charge with Hippo-potamus - therapy. Well I will have to go back to my original hypothesis, Zebras it is (are you listening JKP?)

2. Is emotional incontinence when you piss yourself laughing?

3. and this one is serious. How do these people work out which one of the therapies they try worked?
I heard the same shite in an IAA meeting where a women explained that while her kid was going to an ABA school for 2 years, it was the trip to Philidelphia and subsequent bio meds that helped him "recover", She was also certain that those unexplained "giggles" he got on the way to school in the morning was due to yeast in his gut. Not "finding something that she couldnt understand - funny" but Yeast for sure.
That kind of thing makes me a bit emotionally incontinent I must say!

Well. must go, off to research the zebras and Botswana a bit more. I can smell the advance already!
xx

Clive said...

Read about your blog on the IAA blog and just dropped over to add my comment that I so agree with you.

I can't stand all those autism cure books out there.

We have the dog, we do the horse-riding, we've even taken our son swimming with dolphins - but just because they happened to be there not as dolphin therapy - and yes he gets huge enjoyment from his dog/his horse-riding and they have helped a huge amount in lots of ways but no its not cured him of his autism!!

But I guess if you were given a $1 million advance you have to come back with a good story - please don't tell me there is a film though!!

coffee? said...

I too followed the link from IAA and wholeheartedly agree with what you have written

Crystal Jigsaw said...

Maybe by putting herself out in this way she is leaving her son to be judged anyway. It is only human nature for people to judge. We all do it, whether we realise it or not.

I haven't read the book but have heard so much about it. Autism has no cure. Nor can it be healed.

I consider your blog to be very important, I always find the information you give to be excellent.

CJ xx

AnnB said...

I suppose when you write an exotic journey, cure against all odds, faith in humanity type book, you become the toast of the talk show, glossy Sunday supplement set. Criticism is usually in very short supply on this love in circuit. It can leave an author shocked, indignant, and prone to lashing out. Nice ducking of the punches though Sharon!

jazzygal said...

I've only now caught up on your posts. I'd heard nothing about this book.

I have to commend you on your original post and on your totally reasonable response to the Author's wife, and the mother of the little boy. Everyone is entitled to their opinion and there's enough excerpts/articles been printed to base opinions on.

It's nice that the little boy appears to have gotten something out of the experience. But i suspect it is as you say... spending time with Dad and he loves horses anyway. What he could possibly have gotten out of vodka been spat all over him I have absolutely no idea. What a terrible waste of good alcohol I say!!

When my guy was very young and no-one would listen to my concerns I eventually brought him to a Homeopath (didn't know he had ASD as no appointments let alone Diagnosis!) Soon after he got diagnosis and the interventions began.

I continued with the Homeopathy...thinking it was helping. I eventually copped on! But I nEVER once believed that it was the SOLE reason for his improvements. I , like a lot of parents, was desperate and very vulnerable at the time.

And therein lies the problem....some vulnerable parents will believe these theories.

Your posts ( and NY Times ....WooHoo!!) are necessary to give both sides .

Well done! x Jazzy

Sharon said...

Thanks to all of you for your comments. Sorry I didn't reply earlier.

Special thanks to Lisa for the definition of emotional incontinence, "when you piss yourself laughing."

I love it!

Mary H. said...

Forgive my ignorance, but what is IAA? (mentioned several times in the comments)


By the way, I'm glad I found your blog, I've really been enjoying it.

cheers,

Mary H.