Jessica Matthews: Autistic writer, Independent Researcher and Advocate, passionate about how we support the development of Positive Autistic identity in ourselves and our children. My writing is shaped by my lived experiences, by my connection with my son, and by my background working as a Therapist (BSc Hons Psychology degree, Post Graduate Diploma In Integrative Counselling, Post Graduate training in Clinical Psychology). The title of my Facebook page and blog, arises from my concern about how we talk about Autism and PDA and how these narratives impact our sense of 'self' and well being."
Neurodivergent Mother, Independent Researcher, and Writer. Background in Psychology and Counselling with postgraduate training in Clinical Psychology (BSc Hons Psychology and Trained Integrative Counsellor). Passionate about Neurodivergent Identity, Non-neuronormative Narratives and Polyvagal Informed Parenting.
It is time to stop describing SEND parents as “Anxious”.
All too often we hear or read statements where the parent of a child with special educational needs or disabilities (SEND) is labelled as “anxious”. Such statements can often be underpinned with judgemental and critical tones.
Too many professionals who are not qualified to do so, have a propensity for making observations of parents such as; “Johnny has difficulty with X and we also observed Mum displaying high levels of anxiety.”
Sadly these judgements are not made exclusively by professionals but can also extend to, equally unqualified, family and friends.
Anxiety is something we all feel when we are worried, tense or afraid. Anxiety is a natural human response when we perceive potential threat. All people feel anxious at times, but it is particularly common to experience some anxiety while coping with stressful events. There is not a single manual that defines anxiety as a flaw, an inability to cope, or a fault. Yet when SEND parents are referred to as anxious, a critical lens and tone is very often evident.
All SEND parents are naturally and understandably worried and concerned about their child’s difficulties. All parents of children with disabilities remain “on alert”. It is a natural and instinctive response for SEND parents to have and it is developed so that parents can become fully attuned with their child and their additional needs. When SEND parents are on alert it is a functional and adaptive response and it is necessary.
Parents of children with SEND will be able to provide numerous examples of how being on alert has prevented falls, injuries or a child experiencing higher levels of distress. When a SEND parent steps in to deflect, distract or to simply offer their child a feeling of additional safety with their presence, there is always a good reason for them doing so. These are normal developed responses that SEND parents have, in order to safeguard their child’s emotional and physical well being.
Attending most events; medical appointments, parks, social activities, is often very stressful. Lots of additional planning and support is needed and for parents this usually means never being able to fully relax. This can feel quite difficult for family and friends of SEND parents and in itself can lead to conflictual feelings.
The other beautiful facet in labelling SEND parents as anxious; is the gender factor. We rarely hear the phrase “Dad was observed as being particularly anxious”. Infact Dad’s words and Dad’s responses often seem to remain unreported and invisible.
But are Fathers of children with SEND less anxious?
In reality, present Fathers of children with SEND can be just as concerned and just as “on alert” as Mothers of children with SEND. However, in our culture there is great readiness to pathologize women and judge women’s mental health through a critical lens. The gender stereotypes of women as fragile and vulnerable are unfortunately not as outdated as we may like to think. These critical stereotypes still dominate narratives about parenting, especially in health and social care settings.
“Anxious” should not be used as an adjective with inbuilt criticism and judgement. And unless you have the professional training and qualifications required to diagnose someone with clinical anxiety, you do not have the expertise to comment on such matters.
The irony of all of this is that very often it is the systemic and societal battles that SEND parents have to endure, that ultimately take their toll on parents’ mental health. This is not due to the needs of their child or the challenges their child faces, but due to systemic failure to provide support and failure to withhold ill informed criticism and judgement.
So, if you have not walked for a week in the shoes of a SEND parent, please do not describe the way in which a SEND parent presents, or pass judgement on their style of parenting.
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Many of us will have heard similar phrases in relation to how our neurodiverse children cope with playgroups, school and other complex multisensory environments.
“He’ll soon get used to it!”
“He’ll be alright once he’s settled in!”
“She’s fine once she’s here!”
But what happens when they’re not fine and when they’re really not getting used to it?
William becomes so overwhelmed after being in a complex environment and the inherent sensory, social and everyday demands ultimately push him into survival mode.
After years of trying many different groups from Mother and Toddler and Music and Movement to different Stay and Play groups and Forest Schools; William’s tolerance has not increased.
Once we started to understand William’s needs more fully and recognised a clear pattern in his behaviour and communication, we decided to try reducing the group sizes that William was expected to manage in.
I explained this recently to a health professional and described how positive William’s response to this has been. I explained that by reducing group sizes we have seen a reduction in his anxiety levels and the duration of his meltdowns.
The professional argued that:
“The trouble with this kind of approach is that if we don’t keep putting him in busy environments; he won’t become desensitized to them!”
This is not an uncommon view and I’m sure many of you will know this from your own experiences.
Is it possible that daily exposure to complex multi sensory environments can lead a child with a highly sensitive nervous system to become; less hypersensitive?
It might be useful to start by deconstructing what is meant by the term desensitization. Desensitization is a term that gets used quite liberally in everyday discourse, especially around this topic. Sometimes it is clear that the meaning of desensitization gets lost in translation.
Desensitization is not a naturally occurring process; to become desensitized certain conditions need to be in place. This is known as systematic desensitization. Systematic desensitization is a behavioral technique commonly used to treat fear, anxiety disorders and phobias. Using this method, the person is engaged in a form of relaxation and gradually exposed to the anxiety-producing stimulus, like an object or place.
In order for systematic desensitization to be effective; the person needs to feel comfortable and empowered; as opposed to flooded and overwhelmed. Effective systematic desensitization is a controlled process. This is very different to the common misconception that desensitization occurs by repeatedly placing a person in a given situation.
What actually happens when neurodiverse children with highly sensitive nervous systems are repeatedly exposed to environments that overwhelm them, is that their survival mode is activated; they fight, flee or freeze.
The latter is the least recognised response and one that often renders children’s pain and anxiety invisible. A child whose nervous system has been screaming “get me out of here”, but who also feels unable to fight or take flight, will most likely freeze instead. This survival mechanism is the brains ways of protecting itself from further trauma. It is a way of shutting down, or dissociating from the traumatic stimuli in the hope that it will stop!
When a person repeatedly freezes in response to traumatic stimuli it is usually because they feel they cannot escape the pain and distress any other way. One example of this would be in a nursery or school environment where a child does not have the power to leave and feels trapped. When a person believes that they have no way of changing what is happening to them, no matter what they do; learned helplessness can occur.
Learned helplessness arises when a person endures repeatedly painful or otherwise aversive stimuli which they are unable to escape from or avoid. After such experiences, the person learns to accept that they cannot escape from perceived threats and so they continue to freeze, shutdown or dissociate each time they feel this way. This makes children particularly vulnerable.
In response to the opening quotes and the notion that “they will get used to it in the end”, we need to consider carefully, what getting used to something might really mean for children who have these kinds of fragile nervous systems. We need to ask; what are the consequences of getting used to something that is repeatedly experienced as traumatic and overwhelming?
“Forcing autistic people to experience painful or aversive stimuli is harmful, whether it is done as behavior modification, or out of disbelief that something that is not painful to you could be painful to us, or even for therapeutic purposes such as desensitization.” https://www.spdstar.org/node/1137
The idea that we can all get used to something over time, can also be explored by thinking about the process of habituation. Habituation is the diminishing of an innate response to a frequently repeated stimulus, leading to a marked drop in arousal levels. So in other words, over time arousing sensory input becomes less arousing.
The notion of habituation would lead us to assume that, there is a naturally occurring, positive effect of being in the same situation over a period of time. Typically, and in terms of neurotypical operating systems this is often true. Many people do habituate to many given situations, over time. However, when we consider neurodiverse operating systems we cannot assume that the same process of habituation occurs. What if neurodiverse individuals do not have a typical habituation response?
Vivanti and Dissanayake (2018) carried out a research study which examined Attention to novelty versus repetition and found that people with ASD have less effective habituation systems.
“This lack of habituation results in an exaggerated perception of changes in the environment which in turn leads to sensory overstimulation, distress and the perception of the environment as highly unpredictable.
So rather than habituating; some Autistic children will have ongoing levels of extreme anxiety, where they function primarily in survival mode. Repeated exposure to these aversive conditions can, over time, lead to the development of PTSD and other mental health difficulties.
Because more typical responses to busy environments dominate; the world is not set up or designed to cater for neurodiversity. Neurodiverse people with hypersensitive sensory systems do not have their experiences of sensory pain, discomfort and overwhelm understood or validated. We are a long way off making actual accommodations; real changes that neurodiverse children and adults need. What our society does instead is insist that enough exposure to the available systems will, in time, lead to desensitization. It is not viable practically or financially to acknowledge that this is not true for all.
In the meantime; children with fragile nervous systems who do not cope in complex sensory environments such as school continue to experience distress, dysregulation, higher levels of anxiety, exclusions and very real and worrying mental health issues.
When we sit with our children back home after they have struggled in busy environments and whilst they behave in a way that is best understood as a panic attack, or when they completely shutdown and have barely enough energy left in their little bodies to function, we may often feel incredibly helpless. I have absolutely felt helpless at times and unsure of what we should do for the best.
But we are not helpless, we are parents of amazing children who have so much potential and many talents. We have a fight ahead for sure, one that many before us have had and many after us will still sadly need to have too. But we all have personal power and as parents we have more strength within us to fight for our children, than we would ever have for ourselves.
Outside of these individual battles and fights for our childrens rights, their well being and their right to a fair and equal education, it is also time for us to keep challenging more widely; the deeply ingrained beliefs and misconceptions about such things as desensitization and the things all children “must do” and “must be”. We must stop forcing our most vulnerable children to endure environments that do not meet their needs. Very real accommodations to existing environments need to be made and where such changes are not sufficient for the individual child; new and bespoke environments must be created. We cannot continue to damage children by making them endure traumatic settings; just because that is all there is available. Every child has a right to have their individual needs met and their differences respected.
As our family travels through our EHCP journey with William, I will write more on this subject and I will come back to share details about our fight, our specialist professionals and the individual and bespoke Education plan we are hoping to secure for our boy.
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Avoidant and restrictive eating is hugely emotive. Eating difficulties are not exclusive to the Autistic population, but studies have shown that Autistic children exhibit more food refusal than typically developing children. (Bandini et al, 2010)
During our son’s autism assessment we detailed our concerns around his eating. We were advised that William’s eating difficulties and sensory sensitivities were a ‘common feature of Autism’ and that there was very little available support or guidance. The reality of the limited resources in the NHS, is that unless children are losing weight and becoming poorly, there really isn’t any provision for avoidant and restrictive food intake.
William’s eating is and has always been narrow and restrictive. Despite this, his growth and weight are fine.
We followed all of the usual advice about healthy eating from birth, including baby led weaning, but our boy’s sensory sensitivities made the move from purees to more textured food really tough for him.
Being sensory defensive to the feel of many foods on his hands and mouth and struggling to touch anything wet or slimey is very real.
Having clear preferences for very specific flavours and for smooth, non mixed textures, is very important to respect.
I wore myself into an anxious oblivion, blitzing many meals, with a view to increasing my son’s range of foods. In the early stages I just didn’t have the knowledge around why all of these different experiences were genuinely threatening for my son.
We offered lots of finger foods, grazing plates and every time, only the same, small number of foods, were accepted.
A particular brand of smoothies were a firm favourite, and so we kept these in the cupboards, in bulk.
The fact that William breastfed well was such a great relief to us. This allowed him to continue to gain additional calories and nutrition as well as lots of comfort, connection and love.
We continued to offer both the safe foods and new foods. We put new foods in a small, seperate bowl, alongside his plate of preferred and safe foods. This helped in terms of reducing distress.
I presented the food on the plate in fun and appealling ways. We bought plates with cars on, one of his greatest passions.
We baked and cooked together. We played with foods creatively, touching, smelling and licking each one.
The former stages of touching and smelling progressed, whilst the licking and tasting stood still.
I gradually recognised and later accepted, that our conditioned expectations and my ‘good mom’s judgements, were incredibly unhelpful.
Our son’s sensory defensiveness to the way food looks, feels, smells and tastes, was not a ‘stage’ to push through.
Gradually and instinctively, once we were able to tune out much of the advice from a neurotypical perspective, we realised that it was crucial for William to be able to have his preferred foods, without the palpable expectations around trying more.
If we had witheld safe foods, following a more traditional approach, believing that ‘all children eat what they’re given when they are hungry’, we would have had a very poorly boy.
William’s relationship with food was not something we could tell him to “do” differently. This struggle of his, should not be exacerbated by pressure from us. These differences were not intentional or willful, they were neurological.
It was not helpful or accurate to describe William as “fussy”. And boy did we hear lots of this!
Years later, William’s strong responses to food remain. He has a short list of foods that he will accept. His ‘safe foods’ continue to be mainly beige in colour.
He still recoils at strong food smells, covering his nose and mouth.
Certain textures repulse him and mixed textures are off limits.
Any foods that look different from his safe foods cause him great anxiety.
He is intolerant of uncertainty and experiences sensory overwhelm when faced with new tastes and textures.
His safe foods need to be presented in a certain way with different food types never touching.
His brand loyalty is ferocious and we dread it when the manufacturers change their packaging, or when a product goes out of stock.
Being able to keep a good supply of William’s foods, is so important.
William’s process around eating is very specific and individual.
I spent so many hours in the early days, feeling that my son’s relationship with food must be my fault. That I had failed in some way.
I had had my own difficulties with food growing up, and as an adult. I felt that in some way, I must have transferred the eating disorder I had, despite being clinically recovered and healthy.
In reality though, despite the propensity many of us have for Maternal guilt, it is really important to know that some things are outside of our control.
Eating difficulties that have sensory underpinnings, are not the product of a child’s environment. They are part of a child’s neurology.
William’s nervous system responds to sensory information in a very specific way and respecting and understanding this, is such an important part of our role as parents.
That doesn’t mean we can’t help however. Understanding William’s sensory profile arising from his private OT assessment was an amazing start. His diagnosis of sensory modulation disorder meant that a sensory diet was recommended for him.
This was really helpful in terms of developing our understanding of William’s eating difficulties. (At this stage I had limited insight into my own sensory needs and sensitivities and so this process was really important for me as a parent and as a person).
William’s assessment explained his sensory sensitivities and his challenges organising the complex sensory information that we encounter when we eat.
His individually tailored sensory diet addressed both his sensory sensitivities and his need for sensory input in order for his nervous system to be ready to eat. This involves a range of sensory integration activities.
*It is important to add that William’s sensory diet targets all of his body’s sensory needs. This is because there are other aspects of sensory processing difficulties, for example difficulties with sitting, posture and knowing where the body is in space (proprioception), that can also impact eating.
Implementing William’s sensory diet does improve his readiness to eat. It has not yet impacted the range of foods William will try, but there is no hurry up button in this process.
Just improving William’s readiness to eat has been a really significant part of this very long journey.
Sensory Activities That Support Eating Readiness.
Readiness to eat requires the body and nervous system to be in just the right state. Supporting William to gain the right balance of vestibular input (through swinging, rolling, spinning and so on) and increased proprioceptive input (through pushing, pulling, crashing into bean bags, deep pressure and the use of a vibration plate) supports his nervous system to eat.
It is always about gaining the right balance of ‘activation’ so that he is both alert and calm enough to start his food.
His body and nervous system need to be in the goldilocks “just right” state to be ready for food.
As well as getting the balance of activities right, William also needs the rest of his environment to be just right.
His body and nervous system need calm and quiet to feel safe enough to settle to eat. A calm and quiet environment, down regulates William’s nervous system, allowing his neuroception of threat to quieten.
Understandably this makes it more likely for William to feel ready and able to eat.
When the nervous system feels under threat, fighting, fleeing or freezing are priorities, eating is not. This is a neurobiological truth for us all.
We regularly build on William’s original sensory diet. There are a wide range of sensory integration activity ideas online, that help keep choices new and interesting.
Knowing that novelty can be really engaging for children with PDA, means that choice and new offerings can be really helpful.
Once we understood William’s sensory profile (and this is where I would always recommend an independent sensory assessment) we gained a deeper sense of what his individual body needs. This allowed us to feel much more equipped to support and empower him.
For us, understanding the sensory input William needs more of and the sensory input he needs less of, in order to function at his best, has been incredibly helpful.
Being able to offer William choice, creativity and flexibility is the difference between active curiosity and engagement and a strong “No, I’m not doing it!”.
We also found that attending sensory processing training, delivered by the specialist OT team, really helpful. Further reading has also allowed us to develop our toolkit.
Feeling empowered enough to implement the sensory diet at home, with confidence, has been so important.
We have also found that continuing to read and research has given us more confidence. There is a wealth of research information available online and a range of really helpful books too. The work of Kranowitz and Ayres were key starting points for us.
THE INTERSECTION BETWEEN AUTISM, PDA, SENSORY PROCESSING DIFFICULTIES AND ARFID
It became increasingly apparent, that addressing the sensory aspects of William’s eating difficulties was only one part of the picture. We began to realise that PDA, William’s need for autonomy and freedom, was also playing a role in his relationship with food.
With this in mind, we tuned in more closely to William’s interactions around food and what they were communicating. His adoptive responses was screaming:
Back off, I really NEED to be in control of this! When I am not in control of this, I feel too threatened and anxious to eat!
There was also a clear pattern of decreased food intake whenever we failed to provide the right level of choice and control for our boy.
We increased our flexibility, by removing expectations such as the need to eat at the table, or to sit down whilst eating (all demands most of us will have grown up being expected to meet).
We are relaxed about William wanting to watch his TV or tablet whilst eating; this clearly distracts him from the demand of eating.
We also found that by being relaxed, accepting and only nurturing in our verbal and non verbal communication around food, that this in itself made a difference.
Being non anxious and authentically accepting that William’s choices are his to make, really helps.
With time, I could see clearly that William could sense my need for him to eat and how demanding and off putting this was to him. (I have no idea, with hindsight, how I didn’t know this in the beginning, because I hate being out of control of my own eating.)
Providing choices, but not too many is also really effective at times, whilst at other times it is more helpful to just leave a plate of safe/preferred foods by William while he watches TV.
When he is already at his demand limit, we will just leave the plate without talking. At other times we might say something really low key such as “I was making myself some snacks and I’ve done a few for you too.”
We also use a food divider plate, so different foods donottouch each other.
The many considerations involved around supporting William to eat, took on new meaning for us when William was assessed by a Specialist Educational Psychologist with expertise in PDA. As a result of this very comprehensive assessment, we learnt that his eating challenges are consistent with:
“Avoidant and Restrictive Food Intake Disorder” (ARFID).
We hadn’t come across ARFID before and it felt incredibly helpful to have a name and framework to refer to.
ARFID was introduced into the fifth edition of the Diagnostic and Statistical Manual (DSM-5) in 2013 and so it is still relatively new.
This new information sent us off on another really helpful learning curve of reading and researching.
You may have seen articles describing the link between Autism and Anorexia:
The book explains the core features of ARFID which in summary are:
Sensory hypersensitivity: Visual, texture, smell, taste and noise.
Neophobia: Rejects foods that look different.
State anxiety at mealtimes: Rigidity, routines, and rituals.
Rigid food categories: Brand loyalty and the importance of packaging.
Important strategies include:
Allowing preferred foods in order to maintain expected growth trajectory.
Respecting Sensory hypersensitivity
Respecting routines & rituals
The book acknowledges how difficult ARFID can be to deal with in relation to PDA and how it requires a distinct and different approach.
The book explains that the majority of children with ARFID maintain their expected growth pattern IF they are allowed their preferred and safe foods.
Whilst very often; a child with ARFID may not be underweight, it is incredibly important that recognition is given to the difficulties they have around eating.
Non recognition of ARFID can lead to a dismissive approach where the child is described as “just being fussy”, or regarded as having “something they will simply grow out of”.
ARFID is not something a child will easily grow out of without the right support.
Gaining the right help and information allows children to be supported appropriately and not denied their preferred foods or “made” to follow the rules, just because everyone else has to.
We recognise William’s eating difficulties now as being consistent with ARFID.
We feel more informed about how to balance the different aspects and our plan includes:
Maintaining the regularity and frequency of William’s sensory diet.
Continuing to use a deeply respectful and accepting PDA informed approach.
Providing open invitations to engage in messy play which focuses on the non pressured exploration of food and textures.
Experimenting with other activities such as blowing through straws and using face paints also offers different, less threatening opportunities to explore different textures by and around the mouth.
The whole process of reflecting on our relationships with food, has led me to wonder about the intersection between ARFID, Autism, Sensory processing difficulties and the PDA profile of Autism, where intolerance of uncertainty, anxiety and avoidance all feature highly.
I would love to hear your thoughts and experiences on this topic.
It would also be great to hear about any resources or research that specifically relates to PDA and ARFID should you come across any.
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