The Challenges & Rewards of Working with Neurodiversity

BY Miki Ettore & Kate Stuart

The Fulcrum, Issue 91 January 2024

NEURODIVERSITY is a term used to describe naturally occurring variations in the human brain. Neurotypical is defined as ‘normal’ and neurodiverse is a spectrum that varies from person to person and affects how they experience and react to the world around them. It is estimated that around 20% (1 in 5) of people in the UK are neurodiverse. A clinical diagnosis is often regarded as a lifelong disability, although this attitude is changing.¹

The most common neurodevelopmental conditions include autistic spectrum conditions/ disorders (ASC/ASD), attention-deficit hyperactivity disorder (ADHD), attention deficit disorder (ADD), dyslexia, developmental coordination disorder (formerly known as dyspraxia) and Tourette’s syndrome. Each person will be affected differently and may have multiple conditions.

The prevalence of autism in the UK is currently estimated at around 700,000 people, which is around 1% of the population.²

With such a high prevalence of neurodivergence in the population, it is inevitable that CST practitioners will work with a neurodiverse child or teenager, even if they don’t have a formal diagnosis. As practitioners specialising in neurodiverse conditions, we want to share our stories, experiences and insights of working with these clients and hopefully inspire others to work with this growing group of people.

MIKI’S STORY My second pregnancy was a very stressful time. At the end of nine traumatic months, during which my daughter had been undergoing intense life-saving chemotherapy and radiotherapy, my son Fin was delivered by venthouse, which caused plagiocephaly (flat head syndrome) and vagal nerve damage.

I discovered CST after Fin regressed into complex autism at eighteen months. After his first session at the age of two, his head completely rounded and his eye contact and sociability returned. I was so impressed with the many dramatic improvements that I decided to study CST so I could carry on treating him myself.

During my studies, I realised I wanted to work full-time to help other neurodiverse children. I quit my office job and began practising full time. Ten years on, I run a very busy practice and have successfully treated hundreds of neurodiverse children, some of whom have transitioned from special to mainstream school.

KATE’S STORY I first met Miki the day I graduated from the College of Craniosacral Therapy. She gave a talk about her CST journey with Fin’s complex needs and her work with ASC. It really resonated and I immediately felt drawn to working with neurodiverse children. Despite having no previous experience or relevant specialised training in this field, I decided to jump straight in and started working with a little girl with complex needs. At the time I felt overwhelmed, but I kept reminding myself about Miki’s success in treating autistic children. As a result of different challenges that cropped up in these sessions, I reached out to Miki for guidance and help. As a result of her mentoring, I began to gain more confidence and found myself working successfully with children and teens struggling with neurodiverse issues such as ASC and ADHD. As a result, I now run a very busy clinic with a waiting list.

Working with Neurodiverse Children

MIKI’S EXPERIENCE Even though I have a complex needs child myself I was not prepared for the many challenges of working with other children with complex needs. Nevertheless, the rewards always outweigh the challenges, and it is wonderful to see the progress they make. I have not come across any other therapy that helps children overcome birth or other trauma the way CST does.

One of my first clients was a boy who could not maintain eye contact or speech and was completely obsessed with Minecraft to the point that he would not engage with anyone. There was a lot going on in his system and many releases occurred, especially in the falx cerebri which was very tight. Later that evening his mum called me frantic because her son was running around the house completely hyper and would not go to sleep. I was a bit worried as it seemed I had made the situation worse. However, the next day he was completely calm and from then went from strength to strength to the point where he no longer needed applied behaviour analysis (ABA) therapy. He is now in a mainstream school, working to the same curriculum as his peers, is sociable and engaged with everyone, and his speech is normal.

From that experience and others, I have learned that the more trauma and tightness in the membrane and nervous system the more dramatic the improvements are. I now know that an intense reaction after a series of releases is short-lived and results in wonderful progress. Now, when parents call me in a panic, I am confident and can reassure them that it is perfectly normal and expected.

For some families, CST can literally be life changing and I have seen many miracles over the past ten years. One example that stands out is a neurodivergent boy who, in addition to his complex needs, was traumatised from being locked in a car at school by teachers who did not know what to do with him. When I first met him, he was in fight-or-flight mode, lashing out, biting, head-butting, and scratching his parents and siblings, leaving them frightened and overwhelmed. During the first session, he got very agitated and ran around the room like a tornado destroying everything in his path. I was a bit nervous he would hit me; however, by staying grounded and working in the field I was able to calm his nervous system to the point where he came over and sat down next to me on the sofa for a hands-on treatment. His parents were so shocked and grateful to see their son relaxed and happy that ten years on I still see him once a month for maintenance. CST has helped him become sociable and calm and the whole family is now settled and no longer worry he will lash out at them. He is also toilet trained and sleeps through the night, which is something they never thought would happen. As they were all suffering from post-traumatic stress disorder (PTSD) due to coping with his violent mood swings, I suggested the whole family have a few treatments and now they are all happy and relaxed.

KATE’S EXPERIENCE Even though working with neurodiverse clients, especially those with complex needs, is more challenging than neurotypical clients, the results can be life changing.

Most of the neurodiverse children I treat struggle with high levels of anxiety and emotional self-regulation. Autistic people typically like routine and will struggle with any deviation or last-minute change. They often have difficulties with social communication and interaction, emotion recognition and expression and there may be issues with processing physical sensations such as taste, smell, noise, and touch. They might also exhibit repetitive behavioural patterns, such having to take clothes on and off a certain number of times when getting dressed. Any attempt to interfere can be met with high levels of anxiety and stress.³

One little girl I worked with began sleeping through the night (prior to the treatment her family had never had one unbroken night’s sleep). She stopped head banging and began to settle for longer periods at school. Her mum reported when for the first time ever they had been able to take her out for a family meal at a restaurant with no meltdowns. The effect that CST had on this little girl and her whole family was life-changing and she told me had she known about CST earlier it would have been her first choice for an intervention or therapy.

One of the truly wonderful things about working with autistic children, especially those with complex needs, is that there is no placebo effect. Often the children themselves aren’t even aware of the changes going on in their bodies, but their behaviour starts to radically change. I often find the more challenges facing a child, the bigger the results and improvements once they start a course of CST. One little boy whom I have been seeing regularly for two years came to me with a diagnosis of ADHD and ASC, and suffered with severe attachment disorder, due to numerous foster homes. During his first session, he practically flew around the room – trying to take pictures and light fittings off the wall, switch all the light switches on and off, and throw all the soft furnishings around the room. After a course of ten weekly sessions, his mum told me she had tried everything to help her adopted son and that CST was the only thing she had found that worked to keep him calm and regulated. He went from head-butting his teachers to now being able to settle well at school and can stay more regulated when out with his mum at restaurants or in the supermarket. He has also stopped wrecking the treatment room each time I see him.

Things to Think About When Working with Neurodiverse Children

MIKI When I learnt CST at college it was always in a quiet and peaceful setting with very little noise or distraction. This is rarely the case when working with neurodiverse children; they often don’t want to sit still, and their nervous energy rubs off on the whole family. Tuning-in with your eyes closed is often not an option in a situation where the child and parent both want to talk to you at the same time.

Neurodiverse children are so dysregulated that it is very important to make sure one’s energy is calm and grounded during a session. Sometimes the energy the child, parents and siblings bring into the therapy room (or when working in their home) can be so chaotic that it throws me off centre. Therefore, I work on my own energy by regularly practising meditation and grounding.

Multi-tasking and finding stillness in chaos is a skill you learn from years of practice, but there are techniques that help. In the first few sessions, I generally find that I must be very flexible in how I treat the child. Sometimes I can’t do hands-on work at all but work off the body. After a few sessions their nervous system starts to relax, and they choose to lie down on the treatment table for up to 40 minutes. It is very satisfying when this happens. When I first started practising, I was embarrassed to work off the body, especially if a very sceptical dad was staring at me wondering what on earth I was doing; however, I have learnt that even the most sceptical parent is impressed once they witness their child lie completely still on the bed for the first time.

KATE There is a very wide spectrum of neurodiversity and not every child will be tearing the treatment room apart, but there will be extra challenges to consider when working with this group of children. Having a basic understanding of neurodiverse conditions and associated behaviours and symptoms can be useful when speaking to parents or carers. Some may have a diagnosis for their child, and others may not even have considered that their child is neurodivergent. As everyone is different, the treatment protocol should be led by the child’s needs and what you find.

These children will often be very dysregulated with high levels of anxiety and a dominant sympathetic nervous system. Most won’t feel present in their bodies at all, often/sometimes with a complete absence of any CST rhythms, or they may feel very charged as if their whole body is firing with electricity.

I also find that a conventional CST session will not work with these children. Many of them won’t be able to sit still for any length of time without some sort of distraction and are often extra sensitive so their system won’t be able to cope with lots of intense hands-on work or lengthy sessions. Before I consider hands-on contact, I first connect in the field and begin to co-regulate their nervous system, initially by staying as grounded and present as possible, so they begin to feel safe.

Quite often these children do not want to be bought back into their bodies; they have ‘come out’ for a reason and bringing them back can initially feel scary for them causing some initial resistance to being treated. I usually keep children’s sessions (under 12’s) to a maximum of 30 minutes and will often finish earlier if I sense the child has had enough.

In summary, although working with neurodiverse children can be extra challenging, both Miki and I have found the improvements so life-changing that it’s worth persevering. To help other practitioners gain the confidence to work with this group, we have created a CPD course programme that shares our experiences and insights of the unique challenges of working with neurodiverse clients and the incredible life changing results that CST can deliver for children and young adults.

Miki Ettore A full time craniosacral therapist, Miki treats children with autism and neurodiverse needs at her busy London practice. She also specialises in anxiety, PTSD, cancer, and fertility and is currently studying a two-year fast track homeopathy degree to complement her craniosacral work.

Kate Stuart Having trained at the College of Cranio-Sacral Therapy, Kate runs a busy full-time clinic during the week in Kingston Upon Thames where she specialises in anxiety, PTSD, autism, ADHD and SPD, and a dedicated paediatric clinic every other Saturday. She achieved a TQUK Level 2 Diploma in Understanding Autism.

1. ADHD Foundation: The Neurodiversity Charity
2. Child Autism UK
3. National Autistic Society

Massage Today, Autism Spectrum Disorder: How CranioSacral Therapy Can Help, (by John Upledger, 29 May 2009)

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

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