As a person with autism and an autism consultant, I was often asked by parents of children with autism and PDD whether I had poor muscle tone. I’m quick to rage, which I used to channel largely into hyperactivity and now channel into mad ARTism so I can be very strong. My natural answer was, no way, I can be very strong. But recently at a friend’s dinner I was talking about a game I enjoy where I like my limbs lifted and dropped. I demonstrated as my husband raised my arm with one hand, dropping it into his other hand. It fell like a dead weight, no resistance.

The host of the dinner was Rosemary Crossley, who was co-author of the book, Annie’s Coming Out (with Annie Mc Donald) which was made into a major film. She’s also founder of DEAL communication centre which specialises in Facilitated Communication Training for people with speech and movement disorders (including many with autism). “You’ve got poor muscle tone” she declared, referring to Hypotonia:

I contested this saying I was strong. She demonstrated the usual resistance most people’s limbs have. My husband also showed me how his arm doesn’t fall, like mine, like a dead weight. I was amazed.

I’ve seen all kinds of ‘rag-doll’ people in my 12 years as an autism consultant but I hadn’t actually thought of myself as having been one even though some of my photos come fairly close. When I was about 5-7 years old I had my mouth physically placed into a smile for me for photographs. Just as I’d been placed into dance poses, this I presumed was just a new one. I could smile, just not usually when I was busy processing other people. It’s shocking how often people still presume mental retardation of the person with those floppy, often unexpressive or poorly expressive bodies and faces.

When you understand poor muscle tone is associated with nervous system damage and common in those with developmental disabilities you begin to grasp where these people get these misleading presumptions. And early Occupational Therapy, Physiotherapy, Brain Gym, Sensory Integration programs, rough and tumble, swimming, horse riding, dance, and general running about are all highly recommended for infants with poor muscle tone so I guess I was very very lucky.

I was put through several years of regimented dance instruction based on physical patterning. At the beginning, I remember it like being in the army, hours of being physically put into movements and forms and made to hold the postures, hours of exercises, over and over and over. I was in this for about 3 years, from age 5 to age 8. Did this movement and combined constant exposure to classical music help organise and train my brain? Who would I have been otherwise?

Before I did dance, my older brother (who was six when I was four) found me fascinating, later when he was seven he found me annoying, and then by late childhood, utterly detestable as happens with some siblings of those with autism (I had a younger brother six years younger who adored me because at age 3 and age 10 we were on the same wavelength). But this older brother had a ‘game’. He’d take my hands and say ‘make your hands all floppy woppy’ and would flap my hands in front of my face (perhaps he was getting me to repeat something I already did). They’d be lifted like they were old wet rags and he’d flap them about and then smack me in the face with them. Neither my face nor hands nor arms gave resistance. I can understand this was amusing, having a naughty streak myself, but now I understand it probably did me a favor, teaching me why, even if my brain couldn’t tell my body to resist, why I might want to use mind over matter to try to.

I had body-disconnectedness for a long long time and walked at about age 2, but crawled later at around age 3-4. I ran on my toes like a ballerina (perhaps that and spinning was where the idea came from that dance would be good). I could scale anything, was always up trees and whilst I walked into walls I could walk a rope tied between two trees. Using my eyes I was lost. When handled by others I was overwhelmed and couldn’t process them and me at the same time, so it was like being suddenly lost in space. But left alone, I was a born kinesthetic learner. Physical patterning made up for what I couldn’t learn through my eyes. My body, poor muscle tone or not, became my eyes and my eyes tuned into movement patterns became my ears.
I think dance gave me voluntary control over my body. I still ran with my arms flapping about or pulled up like a begging pup to keep them out of the way. But I can use my body well now as an adult, even though I slump and struggle to stay sitting with good posture and I certainly prefer to sit on the floor or lay down if I want to relax. Chairs and relax don’t go together.

Even more confusing was that in late childhood, I’d come to understand interpretive language at around age 9-11 which resulted in a lot of expansion but also more emotional pressure than I could stand and around age 13 not long after having a mania/anxiety related obsession with trying to shake my hands off my wrists and making my brain rattle through head shaking, I had a sort of emotional breakdown and my body went rigid and I was miles away from my body and mind. I went through a regression for some months, ended up out of school, got sent up to the countryside to recover and returned, in a daze, progressively getting my body and mind back by age 14 a few schools later.

I couldn’t associate this physical rigidity with the rag doll aspect but understanding that someone with poor muscle tone (hypotonia) can also go through an episode of Catatonia brought on by a severe untreated mood and anxiety disorder, helps me understand the interactions of the two.

Today I’m a happy person who can identify self with body and whilst the messages are slow and I have visual and auditory perceptual issues, I’m very well adapted and successful as an artist, writer, composer. I have an IQ apparently just under 70, putting me in the mildly mentally retarded range but also have an honours degree and a post graduate teaching qualification. So the message is never presume there’s nobody in there behind a stiff, rigid, catatonic presentation, nor behind one which is a floppy rag doll blank stare with visual perceptual processing delayed and that look of meaning blindness. Similarly, just because someone additionally plays ‘games’ in an attempt to explore proprioperception, organise their processing or has involuntary noises, actions or emotional responses shouldn’t convince you they’re nuts. Always presume competence. You may just help someone surprise themselves, and you.

Warmly,

Donna Williams

autistic author of 9 books, consultant and artist.

http://www.donnawilliams.net