by Miki Ettore

The Fulcrum, Issue 75 September 2018

My 12-year-old son, Finley, who has Autism Spectrum Disorder (ASD), was the inspiration behind my decision to learn Craniosacral Therapy (CST). I never imagined that one day I would be working as a full-time therapist. I have now helped over 100 families with children on the Spectrum and it is so rewarding to be part of their progress. It took courage to swap a regular income for the uncertainty of self-employment; however I believe that if you love what you do then all will fall into place. Luckily for me the leap of faith paid off and my practice has grown rapidly. By specialising in Autism, the parents I work with appreciate my first-hand knowledge and experience. I am very grateful to be able to make a difference in people’s lives by practising a therapy which I am so passionate about.

Discovering CST: a personal journey with my son

At the time of his first CST session in 2008, my son Finley was lost in his own world. Prior to his Measles, Mumps and Rubella (MMR) vaccine, he was such a sociable, happy boy; but a week after receiving the vaccine he lost all his words, stopped making eye contact, no longer played with his toys and spent hours engaging in self-stimulating or repetitive behaviour such as lining up toys, repeatedly opening and closing doors or switching lights on and off. When friends or family visited, he could be found standing on his tiptoes flapping his hands with his nose pressed against the TV screen or spinning for hours on the dining room table. He developed chronic constipation and many food allergies. His sleep pattern became erratic and he was extremely hyperactive. He also stopped responding to his own name being called and did not want to be kissed or cuddled. It took me a while to realise that these were all markers for severe Autism regression and it was heart-breaking when it finally dawned on me.

I first visited my therapist, Millie Wood Swanepoel (now a dear friend of mine), with Finley when he was two years old. Millie asked me to lie down on the massage table as she first wanted to demonstrate what a session felt like. As soon as she put her hands on my shoulders I felt a huge wave of emotion. As I began to sob, Finley got up off the floor where he had been lining up toy cars in the corner of the room. He climbed on the bed, lay on top of me in a foetal position and re-enacted his birth. I was completely overwhelmed and a bit frightened, as I had never experienced anything like this. Millie reassured me that it was normal and that she had sometimes witnessed children re-enacting their birth. She said it was part of Finley’s healing, so I should go along with it.

So I did… During the session Finley alternated between so many emotions from laughter to anger then sobbing, but he did not want any comforting. Millie told me it was just a process he had to go through so I decided to have faith.

Finley’s birth was not an easy one. I found out I was pregnant with Finley the day my daughter Olivia was diagnosed with Neuroblastoma cancer. I spent most of my pregnancy living and sharing a single hospital bed with Olivia at the Royal Marsden hospital whilst she had intense chemotherapy, surgery and radiotherapy to save her life. I was so exhausted by the time Finley was ready to be born, that he was pulled out by a Ventouse intervention. At birth, his head was terribly swollen and bruised, and appeared flattened at the back which concerned me greatly. His GP assured me that it would not affect his brain development, however Finley was later diagnosed by a private clinician in the US with Vagus Nerve damage.

Two weeks after his first CST session, Finley’s head started to become more rounded and his eye contact and sociability returned. Having now studied CST myself, I understand the role of the Vagus Nerve in inflammatory, immune, sensory processing and digestive disorders, and how it can be affected by birth trauma. “Vagus” is Latin for “wandering” and, as the name implies, it travels through the body, networking the brain with every organ of digestion along with the lungs, heart, spleen, intestines, liver, and kidneys. The nerve also connects with a range of other nerves that are involved in speech, eye contact, facial expressions, and even your ability to tune in to other people’s voices. It is an extremely important channel for communication between the brain and body and plays a critical role in the body’s ability to maintain homeostasis and health. I believe Finley’s initial injury was due to the Ventouse delivery and the MMR vaccine was the straw that broke the camel’s back by causing further toxicity to the Vagus. There are a few ways to help repair this nerve damage, however CST has been a life-changer for Finley.

Now ten years after his first session, Finley is not yet fully recovered, mainly because of his speech delay, however he continues to make steady progress in both cognition and sociability and is overall much healthier and happier. After all these years of CST sessions, combined with diet and homeopathic remedies, he no longer suffers from allergies and can eat any food. He is doing well in school and overall, family life is so much easier. CST gave me new hope for his future.

Working with Autism: Some practical advice

While I work in a clinic setting at my home and in London, I tend to treat about 90 percent of my Autism clients in their own homes as this is where they are likely to feel more safe and protected.

When you work with individuals with special needs, I have found you need to be adaptable. It is very rare for a child or adult with special needs – and often co-morbid medical conditions such as Obsessive Compulsive Disorder (OCD), Attention Deficit Disorder (ADHD) and Sensory Processing Disorder (SPD) – to want to lie down or even get on to the massage table.

Kids are often very hyperactive and fidgety, and even adults have trouble staying still. Trying to stop someone from moving may cause anxiety and agitation so if they suffer from OCD and need to get up during the session to rearrange their shoes then it is best to give them the space and opportunity to do so.

I have even done sessions with a child in a car seat with the parent driving round the block.

Sometimes the only way to get a child used to CST is to let them play on their iPad, watch a film or even eat their favourite food sitting at the table during the session. These activities can be good motivators and distractions for the first few sessions.

I usually start at the feet and do a lot of grounding as most people on the Spectrum tend to be very ungrounded and find it hard to keep their legs and feet still. I typically find their bodies are in a constant state of fight or flight, due to an overactive central and peripheral nervous system.

I sometimes work in the field off the body to begin with and it may take a few sessions before a hands-on session is possible. Sometimes it needs explaining to mum or dad that it is best for the therapist not to jump straight in but to first work on building a relationship of trust.

I have worked with a few 19 to 23 year old patients who suffer from severe anxiety and OCD. What I do in these situations is to start with very short sessions for as long as they can tolerate. If the parents have faith in the process, eventually a ten-minute session becomes an hour-long session.

One young adult who would not tolerate touch at all eventually loved lying down and receiving a hands-on session for over an hour. It took ten weekly sessions before he finally let me do this and now he asks me not to leave.

Another lovely teenage boy I worked with couldn’t even bear to be in the same room with me to begin with. Initially I would simply remain at a distance and not do anything but sit in stillness and hold the space for him.

Having built up experience over the years, I have started to see a pattern. I began my practice by asking patients to invest in a block of six sessions in order to see if CST would benefit their child. However over time I started to see a shift occurring at around ten sessions. I’ve found it pays to have patience and allow the body sufficient time to respond at its own pace.

Whilst working in the home is often more beneficial to the patient’s healing process, it also can be tricky as there can be a lot of distractions such as rowdy brothers and sisters running around the house, postal deliveries or phone calls that interrupt the session. Sometimes you have to work extra hard to ground and hold the space.

It can however be useful to get a picture of the day-to-day lifestyle of the patient. There is a wonderful feeling of satisfaction when you finally reach a point of stillness amongst the chaos even if that stillness is only temporary. I have found that the more stillness you can achieve, the calmer the body becomes in the long term. By working in this real and non-clinical environment you can help the child to achieve stillness within a real life setting too.

Often families with kids who are on the Spectrum or have learning disabilities go into “freeze or trauma mode”. This happens when the child, parents and other family members are so overwhelmed by the demands of a special-needs child that the whole family system or family members develop symptoms of post Traumatic Stress Disorder (PTSD).

CST can contribute to alleviating this breakdown by removing some of the blocks that may be causing the PTSD and help the whole family to find balance and calm.

I always suggest that the whole family seek treatment as kids on the Spectrum are so sensitive and bonded to those around them. If the parents are stressed or tense then the child is often agitated. I find CST extremely helpful in addressing this ‘Catch-22’ situation, and that patients heal quicker when the whole family has CST sessions to heal themselves.

Common focal points and how CST helps alleviate the symptoms of Autism

“If you have met one child with Autism,
you have met one child with Autism”
Stephen M Shore
Autistic researcher and university professor

This saying is very true. Autism is just a label and every child or adult I have worked with is so different and unique – and should be treated as an individual not a label.

I have found however that there are some key focal points that are common to ASD symptoms which one should be aware of and address when tuning into the system. Here are a few things I’ve found helpful to keep in mind when using CST to help alleviate the symptoms of ASD:

• Grounding at the feet: Most patients with ASD are very ungrounded which affects their ability to stay still and focus on learning.
• Calming the central and peripheral nervous system: Turning down the volume of what is often a very wired nervous system can make a huge difference to a tense and agitated child or adult.
• Calming an overactive sympathetic drive (fight or flight) and helping to achieve a parasympathetic (rest and digest) state so the gut can function optimally: 80 percent of ASD sufferers have gut dysfunction which affects brain function.
• Boosting immune system function: Recent studies link ASD with autoimmune disease.
• Mapping and relieving inflammation: Inflammation of the brain and gut is a huge issue in ASD patients.
• Increasing cerebral spinal fluid flow to the brain aids lymphatic drainage and detoxification pathways: ASD patients often have impaired detoxification pathways and high levels of metals and toxins in their body.
• Relieving any membrane pressure in the brain or spinal chord: This can really help to reduce hyperactivity and irritability.
• Focusing on the pineal and pituitary glands: Research has linked Autism symptoms to low levels of vasopressin, oxytocin, serotonin and melatonin.
• Repairing Vagus Nerve damage: Research has also shown this is a core piece of the Autism puzzle. Many of the markers for Autism such as hand flapping or spinning are the child’s way of self-regulating when the Vagus is not functioning properly and the body is in a permanent sympathetic (fight or flight) rather than parasympathetic (rest or digest) state.

Conclusion: a whole body approach to Autism

Historically experts have focused only on the genetic aspect of Autism and have labelled it a brain or neurological disease. However, more recent studies by the likes of Dr. Martha Herbert (author of The Autism Revolution) have begun to explain Autism as a whole body illness which can often be linked to environmental toxins and dysfunctions of the gut, nervous system and immune system.

CST can help the brain and body decrease levels of abnormal inflammation, sensation, tension, toxicity and chaos. This can lead to greater ease and efficiency of nervous system processing, which often manifests as a reduction of ASD symptoms.

CST can also improve health and socialisation of kids with Autism by helping them find greater ease, both within themselves and in the world around them, and by decreasing structural stress and strain on their central and peripheral nervous systems.

I believe CST is such a gift in helping the symptoms of Autism by not only addressing and rebalancing the whole of the client, but their family too.

References:
John E. Upledger, D.O. (2000) O.M.M: An Etiologic Model for Autism
Eric London and Ruth A Etzel (2000) The environment as an etiologic factor in Autism: A new direction for research
Martha Herbert M.D. (2005) Autism a brain disorder or a disorder that affects the brain? Clinical Neuropsychiatry 2(6):354-79
Stephen W Porges (2011) Autonomic nervous system: The polyvagal theory: phylogenetic contributions to social behaviour
John E. Upledger, D.O. (2005) O.M.M: CranioSacral Therapy and the Reversal of Pathogenic Processes Study Guide
Andrew W Zimmerman, M.D. et al (2005) Cerebral spinal fluid and serum markets of inflammation in Autism Pediatr Neurol. Sep;33(3):195-201
Tad Wanveer, LMT, CST-D (2011) Autism Spectrum Disorder: How CST can help
Martha Herbert M.D. (2012) The Autism Revolution: Whole body strategies for making life all it can be
Moises Velaszuqez-Manoff (2012) An immune disorder at the root of Autism
Rudqiya Shama Tareen M.D. and Manmohan K Kambo M.D. (2012) Role of endocrine factors in ASD
Susan Bennett (2015) The Vagus Nerve: Core piece of the Autism Puzzle
Kratz SV et al (2017) The use of Craniosacral therapy for ASD: Benefits from the viewpoints of parents, clients and therapists
J Bodyw Mov Ther. 2017 Jan;21(1):19-29
Patrick Caughill (2017) New study supports the link between Autism and Gut microbes
Tim Newman (2018) How inflammation and gut bacteria influence autism

 

The opinions expressed in this article are those of the author and do not necessarily reflect the viewpoints of the CSTA.