Barbara Smith M.S., OTR/L ( http://www.barbarasmithoccupationaltherapist.com ) works with many children on the autism spectrum in the area of hippotherapy (not hippos, but horses). This involves occupational therapy through interaction with horses and horse riding to help children achieve goals such as improved balance, coordination or communication skills to tell the horse to “go” and “whoa”. Barbara had her own set of questions for me, so here’s her interview:

BARBARA SMITH:

Hi Donna,
I just finished reading Nobody Nowhere. I have to admit I had not read any of your 9 books. I was confusing you with the woman who wrote Pretending to Be Normal which I read many years ago. so I am very glad that I have starting to get to know you via the books. I will try to gradually read all of them, but until then I would like to try the interview.
Well, as an occupational therapist, here is my first question :

You have written that you received sensory integration therapy. Did you find that this helped you to better tolerate being touched or reduce other sensitivities and do you make a conscious effort to incorporate what is known as ” a sensory diet” into your daily life? If so, how do you do that?

DONNA WILLIAMS:
As a young child I was quite floppy, not severe hypotonia, but a degree of it, enough that my older brother would waggle my floppy hand in front of me then smack me in the face with it with no resistance. I was put through quite regimental ballet training and lots of access to swimming throughout childhood. I also climbed everything, spun a lot and jumped on anything that bounced. Given what I now understand of my neurological integration challenges, agnosia issues, dyspraxia and hypotonia challenges which collectively can look ‘autistic’, I think this constant access to outdoors and physical training was really important.
Even so, I had no sense of my body as a joined together thing. I had pain agnosia so couldn’t feel and respond to pain as others do. At age 2 the lack of pain response and apparent deafness was one of the reasons I was assessed in an inpatient hospital assessment at age 2 as psychotic (it was 1965).
Physically, I would feel something but not know where it came from, inside or out, was it emotional or physical, that sort of thing. So, for example, when I was 13 I was walking home through a wasteland and fell on a broken bottle which pierced my knee to the bone in 3 places. I just clearer the area and started walking. When I realised the blood was gushing too much I took off my sock and tied the area. Then finally I had to call my mother. I didn’t have enough functional speech to explain so could only keep repeating my nearest phrase ‘a person has scratched themself’. Flustered, she did come and collect me and I got over 30 stitches to put it all back together. The whole time I was logical about it. I began doing exercises over the next 3 years of tickling, scratching, pinching, punching my forearm to learn to tell one form of sensation from another. That looks pretty ‘autistic’ but if people knew what I was trying to develop, it was actually really sensible. I didn’t consciously understand, but instinctually I would feel what was missing.
I couldn’t experience my body as a whole so when I was 13 I was also trying to shake my hands off my arms because I didn’t understand my hypotonia and why they didn’t ‘resist’ this but also wondered by other things break off but my hands didn’t. I also shook my head ferociously because something was moving in there. I didn’t understand it was my brain. After about a year of this I had got over this phase and learned how they felt and worked. But again, it would have looked quite ‘autistic’.
By my 20s I was diagnosed with autism (previously as psychotic at age 2 in 1965, then as disturbed through childhood). The educational psychologist who diagnosed me was Dr Lawrence Bartak, who was one of Australia’s top autism experts. He helped me understand some of the agnosia issues, among them he tested my perception of touch in a test I now know as being for Finger Agnosia. He told me I had an outline perception of my body, that I could tell when then outside of my hand was touched, but not which finger. I was frustrated by the fact I’d turn ‘wooden’ when touched or strike out at people. I wanted to gain some control over these instant physical fear responses to a confused sensory system. I began to brush my body and through that began to experience how it was joined together rather than it being a series of disconnected pieces. I also began to develop far less over-reactivity in the parts that had that, and began to overcome the instant cut off responses in other parts.
I was seen by the Brain Injury Rehabilitation and Development Centre in Chester, UK, who found the quarters of my body were unaware of each other’s movements, reflecting the disconnections neurologically – ie not only did my left and right hemispheres have poor relay, but even within those hemispheres were some big missing connections. Through a series of brain gym exercises I did over the next 2 years, I began to gain many new cognitive abilities I didn’t have, have better attention span, begin to be able to internally mentalise (before I could only externally mentalise or only work preconsciously), so Brain Gym began to switch on much of the relationship between body and brain.
I also got Mc Timoney Chiropractic which is a form of Chiropractic where they manipulate limbs to trigger response in alternate ones in trying to build neurological connections. This resulted in really big developmental shifts, especially emotionally, experiences began to become linked up which had all been compartmentalised, and this changed me a lot. I’m still hugely solitary but it shifted me toward being more intact on a social-emotional level. I also had several years of Cranio Sacral Therapy with an Osteopath which is used to improve the flow of cerebral spinal fluid to and from the brain responsible for brain nutrition and detox. That helped me a lot in dealing with overload and sensory flooding.
I had visual perceptual and auditory processing and language processing challenges too which required other types of help.

BARBARA SMITH:
I read in Nobody Nowhere that you love animals, especially cats and even rescued a goat- do you feel that you have an affinity with and relate to animals especially well due to your autism? I ask this because Temple Grandin has written extensively on this theme.

DONNAWILLIAMS:
Temple is an intellectual. She studies animals. She has learned how to intrigue them by remaining still so they, as a non-human species, can explore a daunting foreign species. That is exciting for her and has allowed her to view and study them. Nevertheless, I have significant difficulty accepting some of her projections about how their systems are the same as autistic people, particularly the visual thinking idea as 65% of the general human population think predominantly visually, with only 30% of humans reporting verbal thinking as their main mode. And because Temple doesn’t write about kinesthetic or musical thought, she hasn’t considered the degree to which animals may be more tuned to rhythms, patterns, movement and spatial awareness than being ‘visual thinkers’ or internally mentalising in the mini-movies she talks about being so good at making in her mind.
My relationship to animals is entirely different. I don’t study them intellectually, but I feel them energetically. For example, the cat was laying on the floor. I laid tuned into its pattern of breathing, the tone with which it sat in its body, and laid down away from it, in my own space just as it was in its own. We stared through each other with a shared breathing rhythm and as the cat began to purr, I resonated with the same emotion, feeling social with the cat as if I were another cat. I had had this with trees since I was about 3 years old. I didn’t feel THEY were MY pets, I felt more like I was theirs. I would visit them as if they were both a home and a being in the one entity. They had very different energies to each other and I experienced this almost as if these were their personalities. So some trees felt healthy, strong, almost ‘confident’, others felt sad, vulnerable, others would change in their energy a lot over different times.
I had some strange experiences with ducks. I had a few of flocks come down and land around me within a few metres radius, which was very odd and strange. I would get into the field with horses and we’d run about like we were kids playing. I had some sheep I raised from birth as their mother rejected them, and they were just crazy. I had rescued kittens and cats and birds since mid childhood. There’s something about me that simply relates to them on the same level I’d relate to humans, although hypocritically, I’m not vegetarian.
My father was the same with animals and could hypnotise them. Seriously, he could get them staring into nowhere and put his hand right up to their faces. He used rhythm to do it. He was also a farmer before he died and taught me to muster using an indirectly confrontational approach. Essentially, its a way of rounding them up by behaving as if you aren’t! It means they don’t startle so they wander into the required direction, they don’t bolt. Anyway, he had a feral cat and sheep which lived in his caravan with him. For him, too, these were his friends and seemed vice versa too. They hung out with him as if he were ‘one of them’.
His mother had had this too. Apparently she was once living rough under a tarpaulin, and 10 cats would sleep on her makeshift bed and keep her warm. She was a total stray collector. Do I think this is related to autism? I think it’s related to having the idiosyncratic and artistic personality traits… that my thinking is more fluid, my connection to nature something very emotionally integral. By contrast, I think Temple’s connection comes from intense social interest and a conscientious/obsessive compulsive personality trait. She’s learned a lot about being with animals, sure. But I’d say her experience of it and mine are from pretty different spaces.

BARBARA SMITH:
You have written about the dramatic changes in your behavior and ability to be Donna since eliminating foods that were toxic to you. Have you observed similar changes in the autistic children that you have worked with?

DONNA WILLIAMS:
Absolutely, but the impact of dietary changes seem far more applicable to those with signs of significant gut, immune or metabolic disorders. And that’s often those with pretty severe sensory perceptual and motor planning issues and co-morbid mood, anxiety, compulsive disorders and attention deficits making their ‘autism’ appear more extreme. So I’d say it has been applicable to around 70% in that group, but you can’t presume that just because someone has a diagnosis of ASD or Asperger’s or even autism, that they will have these treatable gut, immune, metabolic disorders underlying or contributing to their challenges. Many in the Asperger’s group, for example, are simply Aspie-like personalities who often have Social Emotional Agnosia (inability to read facial expression, body language, intonation) and often have some dyspraxia, but often don’t have significant gut, immune or metabolic disorders. But, yes, I’ve seen some people with autism move from being severely autistic to being only moderately or mildly so and those in the moderate range jump to being in the mild group, once things health issues are fully addressed. We need to realise, however there are AutismS not Autism, and learn to recognise which people have significant untreated health issues.
Thanks for the interview Barbara.

Donna Williams *)

author, consultant, public speaker

http://www.donnawilliams.net