Sand, spaghetti and spinning…

…My first steps into understanding sensory processing differences.

The first book I ever had on sensory processing differences was by Brenda Smith Myles et al. in 2000, followed shortly by Olga Bogdashina’s book in 2003. By this time, I had two children diagnosed autistic. Both children had extremely limited palettes, comprised mostly of bland and dry foods (with the only upside being their rejection of sweets and fizzy drinks). They went through stages of being able to discriminate between the subtle nuances of brands, whether it was the look, smell, taste, or texture. I was starting to understand that these were sensory processing differences, not ‘behavioural’, but an integral aspect of their being autistic. Although sensory processing was still not commonly discussed by professionals, or reflected in my children’s Statements of Special Educational Needs (the precursor to Education and Health Care Plans (EHCPs).

This blog aims to share what is was like in the early ‘90’s, at the beginning of understanding my older autistic child, when sensory seeking and avoidant behaviour was often considered to be ‘obsessional’, ‘negative behaviour’ and ‘demand avoidance’, that should be reduced or prevented altogether. I also want you to know that it is okay not to know things you have never heard of before, as a parent, carer or professional. Nevertheless, it is important to listen, learn and adapt.

It was over 25 years ago, and I had two of my three children, one of whom was not autistic and the other was yet to be diagnosed. I knew about my five senses (sight, taste, smell, hearing, touch), but had never heard of sensory processing systems. My younger child was not developing as their older sibling did, which only became apparent at around 18 months old. The little language they had stopped, and they appeared to be in a world of their own (see previous blogs). To engage them, bath time became the ‘go to’ place, where I could encourage responses, build our relationship, and develop two-way interactions (reciprocity). Unbeknownst to me, I was supporting positive sensory stimulation, regulation, engagement and (most importantly) building a connection and relationship with my child. It was through simple things: Water touching their skin, to play with, pour, splash and drink! The bathroom light provided high levels of anticipation and excitement, when switched on and off repeatedly in the dark. Cause and effect responses creating engagement, and the use of pauses in my phrasing to allow my child to have control from a response to, “ready, steady…GO! The use of a tricoloured torch prompting a similar response, with different coloured lights shone rapidly around the darkened room.

Although my child was seen regularly at a local CDC (Child Development Centre) and assessed several times by an OT (Occupational Therapist), there was never any mention of sensory processing. The focus was on fine and gross motor skills, which would ultimately be reflected in their reports and recommendations in the Statement of SEN. Issues with fine motor skills were picked up on, but this was due to my child being unwilling to comply with the official threading and screwing assessment activities, with their ‘behaviour’ repeatedly observed and recorded by other professionals as ‘demand avoidance’. Reflecting on this now, I know such activities held absolutely no meaning, interest, or context, for my child…so why should, or would, they comply and engage with them? As many of you reading this may relate to, I personally had no concerns about my child’s fine motor skills; they were able to pick up, and manipulate, the tiniest of Polly Pocket toys and perform elaborate activities with several Playmobil® characters in each hand! Having fought for an assessment at The Centre for Social Communication Disorders (now The Lorna Wing Centre), in the late ‘90’s, the excellent professionals there did note some responses to sensory stimuli, but sensory processing did not feature prominently in their report, which is unsurprising, as sensory processing did not feature in the DSM IV diagnostic criteria.

The following recount and reflections are about my older autistic child, up to school age, shared through the lens of the different sensory processing systems. As with so many areas of autism, the cross-over between what is autistic thinking and being, is completely intertwined with sensory processing. With the exploration and research into interoception, we are still at the beginning of our understanding:

Sound (auditory processing system):

As I have explained in previous blogs, my child appeared deaf at around 18 months. I was naturally concerned, and the professionals thought that they might be deaf. They appeared oblivious to their surroundings, not turning to their name, simple verbal phrases or instructions, including other sounds that would usually raise a young child’s curiosity. However, they appeared able to hear the subtle click of a video player from a far away room. Tests proved that my child was not deaf, and a referral to the local CDC was made. Such ‘behaviour’ was diagnosed as part of an ‘extreme social communication disorder’, with a leaflet for the NAS (National Autistic Society) surreptitiously slipped into my hand as I departed! 

In fact, my child was extremely sensitive (hypersensitive) to sound. Their babbling had a lot of sung features and nursery rhymes/songs were enjoyed, which developed into sung-back phrases (delayed echolalia). They appeared very ‘tuned in’ to sound, enjoying moving, and spinning, to sounds and music. When presented with an instrument, such as a xylophone, they would interact with it methodically and musically, rather than randomly hitting or banging it. However, music, singing and nursery rhymes had a ‘use-by-date’ and would prompt extremely negative responses once they were no longer wanted, being replaced by a new favourite. This combination of auditory sensitivity and high levels of control was recognised by the Centre for Social and Communication Disorders, although it focused more on the behaviour, rather than the sensory. However, they did recommend music therapy as a way of trying to increase ‘social cooperation’ and interaction. At that time, we were unaware our child was ‘wired for sound’, discovering much later that they had ‘perfect pitch’.

Of course, it was not all music and singing. My child would sometimes bang doors repeatedly, for no obvious reason. Professionals said that this was a ‘behaviour’ to gain attention. It certainly was a form of communication and I had to interpret what they were ‘saying’. This was in part due to me not having a shared language with my child, or joint social understanding (intersubjectivity). However, they may have also been seeking auditory sensory feedback (hyposensitivity). High pitch screaming – which had the ability to make people wince and stare – was similarly considered to be a ‘behaviour’, purely used to express anger and frustration, but again this may have been a way of exploring and seeking sensory stimulation.

Sight (visual processing system):

Fascinated by their own reflection and a love of water, visual stimulation was sought out and enjoyed whenever possible: Watching pouring water, flashing lights, fireworks, Christmas tree lights and the light that danced on the water. Without the distraction of language, my child was a very visual learner, fitting the stereotype of having fantastic visual and spatial awareness with jigsaws. At bath-time, they learnt to recognise all the letters and sounds of the alphabet very early on, although this did not transfer and generalise into understanding or using spoken language.

Peripheral vision (out of the corner of the eye) was frequently used by my child, and they would often stand nose-to-screen as the credits of their favourite programme whizzed past. I initially thought that this was very unusual behaviour, but I noticed more occasions when they looked this way, watching the wheels on trains, whilst spinning, or moving around on their trike. It evidently gave a lot of pleasure and I now know that it was seeking and enjoying the visual feedback (hyposensitivity).

Although books held very little interest for my child, videos and the dawn of interactive computer games did. Dorling Kindersley’s ‘My first amazing world explorer’ was a revelation and my 3 year old child was fantastic at it! Although anxiety and distress would be expressed when things went wrong, as they were not able to articulate what they wanted, or understand verbal explanations being spoken on the game. It was an example of how an autistic child can have an ‘uneven’/‘spiky’ profile, because they were able to learn and grasp complex abstract visual concepts, but found verbal and social language almost impossible to understand.

Once my child began to be interested in mark-making and drawing, they wanted visual perfection. Pictures would have to be coloured in, or drawn, by an adult. They often liked objects to be presented, or laid-out, in particular formations, such as Playmobil® patterns, jigsaw pieces meeting exactly, the same journey taken to nursery school. At that time, I considered the response of my child to such visual disruptions, as a ‘tantrum’ or ‘negative behaviour’, which could be directed at any person, or child. However, I now understand the dysregulation to be a communication of their distress. Although this may have been linked to visual hypersensitivity, it would have also been my child’s ability to see and focus on the detail within their area of interest. Such a difference in their central coherence is often called a ‘weak central coherence’ (a difficulty in seeing the whole picture), but I believe this ability to focus is an amazing skill and ability.

Taste (gustatory) and mouthing (oral motor processing system):

An extreme avoidance of particular food, taste, texture and flavour was not apparent initially. As a baby, my child would eat blended food that could be highly flavoured. They would refuse all medication by mouth (orally), but I did not consider this to be unusual, as their sibling was the same. However, with an increasingly bland and limited taste, responses and refusals could be extreme, meaning ultimately that when very unwell my child would require medication administered in an alternative way. There were one or two anomalies to the bland and dry taste in food, such as baked beans eaten cold, straight from the tin!

Bottles of milk acted as a much needed food supplement and comfort for long beyond the usual time it is recommended, until they needed to stop due to tooth decay. After trying a gradual transition to stop bottles, which did not work, I resorted to removing all bottles on return from a holiday, thinking it would be good to coincide with an obvious break/change. My child did not have a level of communication to understand an explanation, and I did not have the knowledge and experience of using social scripts/stories or objects of reference at that time. Although, I believe it would have still been a huge challenge to explain such a big change with their limited understanding. To this day, they do not drink milk on its own.

How can someone have such a limited taste, yet eat inedible soil and sand? No one had used the term ‘pica’ to me at that time, but this caused me an enormous amount of anxiety! At nursery, my child would eat vast quantities of sand, resulting in nappies full of – what can only be described as – cement! Luckily, with a gastroenterologist in the family, they reassured me that this would not cause lasting damage. To my relief, sand was replaced by dried pasta as my child got older, which still raised eyebrows when crunched loudly, but at least it was edible. All pica stopped by 7 or 8 years old.

Chewing and eating foam letters and numbers, also coincided with the pica, but appeared more a need to chew and explore the soft, squishy, textured objects, rather than consume them. Mouthing appeared a much more developmentally young response, but I now understand it would have also been sensory seeking and oral feedback.

Spitting was an extremely challenging stage for me to accept and understand. Although it was a short-lived phase, it was again viewed as a ‘negative behaviour’ by many, particularly other observing parents in playgrounds and supermarkets. However, it soon became apparent to me that the spitting was often done from a height (the top of a slide or stairs), and appeared to be a combination of enjoying the sensation of producing and feeling the spittle in the mouth alongside the visual of watching it fall. In my work, I have also experienced children whose spitting was a tic, as part of Tourette’s Syndrome, although this was not the case for my child.

Touch (tactile processing system):

Pyjamas, pyjamas, pyjamas! Wearing…or rather, not wearing clothes! This was a particularly important aspect of my child’s early years. The importance of one pair of pyjamas was so great that my child would take off their clothes and hammer on the window if they were seen on the washing line. I was told, and initially believed, this was behavioural and a need for sameness. Although there was a desire for sameness, it was also because the pyjamas were soft and worn. I had no idea this was due to tactile sensory sensitivities at the time. My child did not like dressing in the morning and I believed it was because they did not like the choice, or routine. On all the reports from the CDC, it would use terms such as ‘demand avoidance’ and ‘obsessional’ behaviour, there was never any mention, or advice, on sensory processing differences. However, it is quite likely that my child’s resistance to dressing would have been due to the feel and touch of the clothing, albeit that controlling their environment, because of high levels of anxiety, would have also played a large part in their dysregulation; not being able to understand the context, or having the ability express themselves verbally.  

The love of water meant it was always keenly sought out. The desire was so great that swimming pools and the sea posed great danger. With no sense of fear, or understanding about the depth of water, my child would run at great speed towards any water, jumping in pools and getting out of their depth. This caused a high level of anxiety as a parent and I tried to support their access of water safely, teaching them experientially, through safely allowing them to get out of their depth and showing them practically how armbands worked.

Manipulating and holding small objects in both hands was something my child did for several years. They were able to do the most intricate of things, manipulating other objects and activities, often with two Playmobil® characters in each hand. As with many areas of sensory processing, this could have been a combination of seeking both tactile and proprioceptive feedback, alongside my child being comforted by the sameness and predictability of their favourite toys.

At a young age, my child did not appear to acknowledge pain, heat or cold sensations in the way I would have expected, such as when they fell over, or got into a hot bath. It may have been in part due to their social communication differences, where they did not know, or understand, that they could share and communicate this information, nor did they seek comfort from others. However, in my work, this is an experience that resounds with many people supporting autistic children. It appears to be a reduced experience of pain, linking to tactile, proprioceptive and particularly the interoception processing systems. If a child experiences this lack of sensation, they may harm themselves by accident, or when dysregulated, which means they require support to ensure they keep safe.

Balance and movement (vestibular processing system):

Spinning games, roundabouts, fairground rides were loved at this time, with my child rarely appearing to become dizzy. They liked speed and going on aeroplanes, particularly the sensation of taking off and landing, exclaiming with glee, “Wee…” As I gripped the arms of the seat with my eyes clenched tightly shut! My child was also extraordinarily agile, balancing on the top of high surfaces. I had no idea that this related to my child’s vestibular processing system and that they were seeking out the sensation of movement to enjoy the sensory feedback. However, this changed several years later, when they became less agile and there was a change in walking style (gait), although some of this appeared self-consciousness, wanting to get away from being seen by others, alongside anxiety of getting to where they needed to be on time, connected to executive functioning difficulties.

Body awareness (proprioceptive processing system):

Hugging, chasing, rough and tumble, were all things my child sought out and enjoyed. It was not something that would always be accepted when I initiated it, but was often a way of prompting and enjoying two-way interactions (reciprocity). Just like eating and mouthing inedible objects, my child went through a time when they put small objects in their nose, ears etc. My interpretation of this behaviour was that it was their being autistic and at a young developmental stage. However, it was also possible that they were less sensitive and aware of their body, as with processing pain and temperature. This lack of physical (physiological) awareness could have prompted them to explore their body, unaware of the risk to themselves. Like the term ‘vestibular’, the word ‘proprioception’ was completely unknown to me at this time. As many of you do, I did my best to understand my child, and labels help in some ways, but parental/carer understanding and intuition, is often what we do best!

Internal body (interoception processing system):

Initially, toileting appeared less challenging for my child than their sibling, so I was hoping for a quick break through. Although they did not understand my world of words and gestures, they were visual and quick to sit on the toilet to urinate. However, this was short lived. Once my child made a connection (quite logically) between urinating and water, this changed. Their interpretation was to urinate in any body of water, not matter how big, or small. This could mean puddles, buckets, ponds and even cups! In fact, what began as sitting, became standing on the toilet seat. As with much of what I have shared, this was time limited and lasted about 6 months, until my child had learnt practically (kinaesthetically) the concept and context of what they were doing.

Another source of high levels of child and parental anxiety was my child’s challenges with opening their bowels. They would only open their bowels when wearing a nappy. It was something done in complete privacy and caused great anxiety if watched. As my child developed some sung words and phrases, they would say “wannapoo” to ask for a nappy. Although this can happen with any young child, my anxiety increased as school become a reality, because we were requesting a supported place at a mainstream school. With a clinical psychologist advising, I was told to stop putting nappies on and not be concerned by the number of days they held on. It would be fine. Easier said than done! Again, this was considered to be a ‘behaviour’ and there were no strategies suggested that did not cause frustration and distress to my child, such as using visuals, objects of reference etc. Having tried a few times to model and support my child, the pressure built to remove all nappies from house and go ‘cold turkey’! Like bottles of milk the previous year, I decided to ‘go for it’ on return from the family summer holiday. All nappies were removed from the house. After an anxious 4 days, through modelling and gently supporting my child’s understandable agitation at holding on, we finally had success! Nevertheless, they continued to want complete privacy, not wanting anyone present. Again this was likely to be a combination of needing control, sameness and the internal sensation of needing the toilet. Interoception is a sensory processing system that I have learnt much more about in the last few years. We, as parents, carers and professionals, are just beginning to learn how integral it is for explaining and supporting many aspects of autism, particularly self-awareness and emotional understanding.

A final reflection…

Both of my autistic children continue to be visual and auditory learners, albeit they require additional processing time, due to executive functioning difficulties. They enjoy a variety of foods, although they are obviously able to control what they do and don’t eat or drink. One of my children continues to have notable sensory processing differences, particularly a heightened awareness of sound and vision. In a positive sensory environment, it provides them with a connection to others, their interests and pleasure, where they can become completely absorbed (in a flow state). However, during teenage years, having such heightened visual senses, meant that the anxiety of being watched by others conjured up such powerful emotions that it translated into extreme and painful embarrassment.

My younger autistic child also had sensory processing challenges, mainly focused around food and eating, developing extreme OCD (Obsessive Compulsive Disorder), caused by several factors, including the transition from KS (Key Stage) 1 to KS2. It centred around food, liquids, eating, seeing others eat etc. This required support and counselling from CAMHS (Child and Adolescent, Mental Health Services). Although it was the mid ‘00’s, this issue was till not highlighted by professionals as being connected to sensory processing differences.

Having carried out many sensory screens, written recommendations, delivered autism training and workshops, read extensively about sensory processing and interoception, the connection between autism, our sensory processing systems, self-awareness, self and emotional regulation, shines through. Why didn’t I see it? Why did I put it down to ‘behaviour’, ‘demand avoidance’, ‘obsession’? It was because in the early ‘90’s, this is was what the professionals thought and said, there was limited information and books to read. No internet! The late Donna Williams, Temple Grandin and an increasing number of autistic adults, have written and spoken articulately about their sensory experiences, but I had not discovered them at the time. Thankfully, autistic people, parents, carers and professionals, have much more guidance and information available to develop their understanding today. DSM V at last includes sensory processing differences as part of the diagnostic criteria. The many EHCPs I have contributed to, or read, acknowledge and provide recommendations to support an autistic child’s sensory processing. At last they include sensory diets, adjusting the environment, supporting sensory and emotional regulation. With research increasingly making connections between interoception, internal signalling and self-awareness, understanding and recognition of emotions, such as alexithymia, continue to be explored and understood.

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