How I Learned to Walk Again: A Non-Speaking Autistic Account of Toe Walking

How I Learned to Walk Again – Patrick Saunders by Emma Marsh

Spelled by Patrick Saunders

Listen to an audio file of the blog here.

Content note: depressive thoughts and medical procedures

I first started toe walking later than other Autistic children who toe walk.* I was around six or seven years of age.

When I walked I would balance on the tips of my toes as the pain in my Achilles tendon would prevent me from placing my heel on the ground.

People would always comment and ask me to walk with flat feet but it wasn’t possible because my tendons were too short and were not growing as I was growing. This made me angry.

In my opinion, I don’t think my toe walking was caused by sensory sensitivity. I walked on my toes to reduce the pain. It had nothing to do with senses in my feet.

Being able to walk and move freely means the world to me. I remember when I couldn’t walk properly. It was painful and isolating. I first started walking on my toes because of the pain in my Achilles and as I grew, the pain got worse. My legs and Achilles and core were always in pain and they felt like they were going to stretch and break. My toe walking got really bad and limited my movement. I would easily fall over and I could not stand for long periods of time. My legs were always in pain so I would need to sit down and I would use a wheelchair to get around sometimes.

I felt isolated. I could not let anyone know how I was feeling as I am non-speaking and, back then, I could not use a letter board to communicate reliably. I have Apraxia and Developmental Coordination Disorder which affects my motor planning and how I move.

I was extremely unhappy and did not want to live anymore. I wished I would die.

I had many different types of therapies from when I started toe walking until 13 years of age. This included wearing several Ankle Foot Orthoses (AFOs) to try and stretch my Achilles tendons. I also saw doctors and physiotherapists. None of that worked and I had to have an operation on my Achilles tendons in a hospital. I had Z cuts to lengthen my tendons on both legs.

I couldn’t have had the operation when I was younger because I was still growing and it would mean having to have the operations again and again as I grew. Luckily, my operation did not happen until later because I am now six-foot-and-one-inch tall. This makes me happy.

I was 13 years’ old when I had the Achilles lengthening operation.

When I woke up after the operation I felt tired and sick. I woke up with casts on my legs and I could not move or walk. I left the hospital in a wheelchair and my mum and dad would help me wash and dress and wheel me around. I wore the casts for seven weeks. It was really difficult and I hated wearing them. I was limited in my activities and I couldn’t do most of my favourite things.

I remember when the casts came off I was scared because the nurse cut them off with a saw. I was so anxious that the operation was not going to work and I would never walk again.

I had to wear AFOs at night when I slept to keep the tendons stretched and prevent pain coming back. I didn’t like wearing them and took them off, but I had to wear them because I was growing and my legs were too.

I felt sad when I had to wear AFOs and casts because I couldn’t do the things I would do normally and I needed support to do everything in my daily life.

My parents and support workers assisted me with dressing, washing and moving around.

After I had the operation on my Achilles, my life changed and I was pain free and not as lonely anymore.

Rehabilitation and learning to walk again was a long, slow process. It involved lots of exercises and lots of short walks. I have been doing rehabilitation exercises with my physiotherapist for more than a year. I love the exercises because they make me stronger and are fun to do.

As time went on, I started to walk. The operation changed my life. I can now stand for longer periods of time and walk many kilometres.

The doctor said I might never walk again. I proved him wrong because I am now able to walk long distances. 

Twelve months after the operation I  could walk more than five kilometres in a day. People now ask me to go on bushwalks and we walk a long way together. I am not isolated anymore and I feel happier.

I am now looking forward to walking in the USA in the middle of the year with my mum and dad. Being able to walk again has made my life so much better. I can’t wait to see what I can do next.

* Toe walking, a condition identified in individuals who walk on their toes rather than establishing a heel-toe gait, occurs more frequently in the Autistic population compared to non-autistic individuals. While not all Autistic individuals toe walk, a study published in the Journal of Childrens Orthopedics in 2019 found a higher prevalence of toe walking in Autistic children (8.4%) compared to non-autistic children (0.47%). Toe walking can occur due to many reasons, including muscle tightness, sensory processing differences, motor and postural differences, and proprioception and vestibular system differences.

ABOUT ME

My name is Patrick Saunders and I’m a 14-year-old non-speaker who communicates with a letter board. I am Autistic and I love to spell, bushwalk, listen to and watch music, swim and move.

You might remember me from when I cycled a bicycle across America with my mum and dad and from the ABC podcast The Parenting Spectrum.

Read my previous blog, What I Wish People Understood About Non-Speaking Autistics Who Spell to Communicate which includes my tips to support non-speakers and spellers.

If you would like to contact me or collaborate on something please head to my website thestoryspeller.com