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.