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."
I wrote this short fantasy/reflective piece before setting up on wordpress, so it just sat as an early post on my Facebook page. I decided to tweak it and put it into blog format as my focus piece for PDA Day. It is about what things could look like once provision; committed to Improving Outcomes is made available to our children. It uses this slightly quirky/ historical lens to help bring the changes that are needed into sharp focus:
PDA Day 15 May 2039
The Power of Progress
The powerful lens that history and hindsight provides, allows us to see the full magnitude of historical failures. When we look back and reflect on the shocking conditions in which people have lived or situations where human rights have been abused, it often seems incomprehensible.
We might ask how such treatment of people was ever permissible and why those in power were not held accountable?
When we look back at our Education and Health Care systems for example, we feel appalled at the way in which too many children and adults were neglected or failed. We perhaps even take great comfort from knowing we don’t have to raise our children through such times.
This kind of clarity can be seen throughout history when we reflect on the experiences of many vulnerable groups. One strong example of this relates to Autistic children and adults with a PDA profile.
Whilst this profile of Autism is widely recognised and understood in 2039, 20 years ago this was not the case. PDA was still being discredited altogether, or re formulated as a by-product of poor parenting, attachment difficulties or other similarly uninformed explanations.
Adult PDAers, the PDA Society and other committed professionals and parents, tirelessly fought for the rights of this marginalised group.
These people fought to gain recognition of the strengths and difficulties of individuals for whom the PDA identifier was meaningful, so that they could be appropriately supported, understood and celebrated.
For a long time children identified as PDA were persistently squeezed through, what in most cases were, incompatible environments – simply because the available options were so limited.
Local authorities advised that it was only possible to gain “evidence” about whether or not a child could cope in school was to send them to traditional school settings that had no experience or training in meeting the needs of neurodivergent body-minds.
Repeated and irretrievable damage and trauma was often endured for said “proof” to be gained.
It took an unfathomable number of suspensions, exclusions, burnout, and further psychological distress and trauma before the required systemic changes were made. In some cases children’s unmet needs and distress became so acute that they were inappropriately placed in ATUs.
Before this, the majority of parents felt helpless and disempowered by the system, as their child was failed in mainstream settings.
Some ended up “electively” home educating with limited or no support.
Many fought tirelessly through costly tribunal processes to gain specialist or bespoke provision for their child.
In this incompatible and under resourced system, irretrievable harm to the mental health of these children and their families was caused.
PDA children became PDA adults with complex trauma and sometimes chronic health difficulties.
Parents of children with PDA also experienced a decline in their own emotional well being; due to the pressure and unrelenting stress of fighting for their child’s basic right to a fair and equal Education (a fight not exclusive to parents of children with PDA, but shared by many parents of children with unmet SEND.)
PDA was not only unrecognised within crucial services though, it was also relatively unheard of within the general population. Understanding of the distinct set of needs and support needed, was very poor.
This meant that all too often these Autistic children were perceived as “naughty” and their parents as lacking discipline.
Thankfully, after years of advocacy, greater understanding of these distinct neurodivergent needs, led to a shift in services.
Now Local authorities meet their statutory duty to meet the needs of this group of children.
Bespoke plans are comprehensively made for each child based on their individual strengths and difficulties.
And whilst limited funding will always be a challenge for services, at least we now live in a time where there is equal recognition, radical acceptance and respect for diverse needs.
This progress has allowed all children to learn and develop in environments that naturally allow them to flourish and thrive.
With this change we have also seen an exciting shift in the focus of our research into PDA, with an increased interest in how the PDAers differently shaped nervous systems, make them such incredible leaders, entrepreneurs, and agents of change and progress.
PDA in 2039 presents us with many new and exciting prospects.
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It is time to stop describing parents as “Anxious” each time they advocate for their childrens needs!
All too often we hear or read statements where the parent of a child with Neurodivergent nèeds has been 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 and understandable to experience 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 parents are naturally and understandably worried and concerned about their child’s difficulties. All parents of children who have more frequent stress responses, or falls, or illnesses, remain “on alert”. It is a natural and instinctive response for parents to have and it is developed so that parents can become fully attuned with all of their child’s needs. When parents are on alert, it is a functional and adaptive response and it is necessary.
Parents of children described as having SEND will likely recount numerous examples of how being on alert has prevented falls, injuries or a child experiencing higher levels of distress.
When a 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. Very often the reason is to safeguard the child’s psychological and physiological wellbeing.
Attending medical appointments, parks, social activities, can often very stressful. Lots of additional planning and support is needed and for parents this usually means never being able to fully relax.
Another concern I have with labelling 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 less anxious?
In reality, present Fathers can be just as concerned and just as “on alert” as Mothers. However, in our culture there is greater propensity to pathologize women’s responses, and to 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. Outdated 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. Indeed, without the professional training and experience in making assessments about a person’s psychological wellbeing, is it appropriate for such judgements to be made at all?
The irony of all of this is that very often it is the systemic and societal battles that parents have to endure, that ultimately take their toll on their emotional wellbeing. Struggles often arise much less from any challenges their child faces, and much more in response to the systemic failures to provide support.
So, if you haven’t walked for a week in the shoes of a parent who is doing their very best to gain the support their child needs, before passing judgement on their wellbeing, ask yourself how might you fare if the roles were reversed.
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Many of us will have heard similar phrases in relation to how our neurodivergent 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, when they’re not getting used to it, and when the conventional wisdom of popular consciousness occludes others from seeing how not-at-all-fine some of our children are.
After years of trying many different mainstream group settings, our son’s overwhelm from being in complex environments was clear.
The absence of systems and educational provisions designed to meet the needs of differently shaped nervous systems, meant that our son could only ‘cope’ in them, in survival mode. The sensory, social and everyday demands inherent in mainstream provisions, would repeatedly trigger him into a defensive state.
When we, as parents, became proactive in making the changes our son needed, when we shared our intention to opt for smaller groups and settings, sensitive to our son’s nervous system needs, we were met with many curious responses.
One such example was from a health professional. After listening to me describe how positively William had responded to being in a neurodivergent friendly setting, she argued:
“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!”
Desensitization is a term that is used quite liberally in everyday discourse, especially around this topic.
Very often it is clear that the meaning of desensitization gets lost in translation. To become desensitized, certain conditions need to be in place.
Systematic desensitization, a behavioral technique commonly used to treat fear, anxiety disorders and phobias, seeks to ensure such appropriate conditions are in place.
However this outdated, and in this context highly inappropriate intervention, fundamentally overlooks the individual needs of the neurodivergent mind and body.
In order for systematic desensitization to be ‘effective’; the person needs to feel comfortable and empowered; as opposed to flooded and overwhelmed.
For many neurodivergent individuals, when repeatedly exposed to environments that dishonor our individual needs, the latter is true. As such we end up spending much, or most of the time in, or vascilating between, flight- fight and freeze.
For a child, whose nervous system is screaming “get me out of here”, they may fight or take flight. If they are unable to their nervous systems may shift them into a freeze state. This survival mechanism is the brain and body’s way 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 because they are unable to escape the pain and distress any other way.
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 in this context really means.
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 an intervention or just through forced everyday attendance in inappropriate settings.
Those who repeat mantras such as ‘they’ll get used to it in the end’, often do so with the mistaken belief that if something is OK for them, it must be OK for another.
The idea that we all get used to the same things, over time, can be explored by thinking about the concept 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 leads us to assume that there is a naturally occurring, positive effect of being in the same situation over a period of time.
Whilst many do habituate to a given situation over time, we cannot limit our thinking to the responses of the majority. When we look beyond this, we can begin to reimagine a broader, more inclusive reality.
We can consider how the naturally occurring differences that arise from having differently shaped nervous systems, means that for some of us, the same process of ‘habituation’ may not only be unsuccessful, it may also be harmful.
Vivanti and Dissanayake carried out a research study which examined attention to novelty versus repetition and found that Autistic people have different 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” (Vivanti and Dissanayake, 2018).
So rather than habituating; some Autistic people will have ongoing levels of high anxiety and distress. Repeated exposure to aversive conditions which threaten one’s sense of safety and which create an “unresolved autonomic nervous system response” (Levine, 2019) is the very definition of trauma.
Only considering the predominant response to being in an intense and chaotic setting, such as a classroom, is deeply irresponsible. And yet our society’s and system’s conventional wisdom about what children need, is largely based on neuronorms and the experiences of the majority.
It is not until we question this conventional wisdom and become deeply invested in the needs of all children, that we can begin to comprehend how to support the needs of neurodivergent bodyminds too.
The world is not yet set up for, or designed to cater for the experiences of neurodivergent children or adults. Neurodivergent folx with individually shaped nervous systems are frequently invalidated.
Invalidation trauma adds further wounding to the nervous system. Invalidating individual differences, thereby obscuring an inclusive range of needs, let’s our systems off the hook. This keeps our educational and therapeutic provisions stuck in an outdated paradigm, where meaningful accommodations required to meet the needs of individual nervous systems, are left unaccounted for.
All too often, our society and systems insist that with enough exposure and enough time, ‘desensitization’ will occur. All the while those with nervous systems that respond differently to the majority, and who struggle greatly in complex sensory environments such as school or non-accomodating workplaces, are repeatedly distressed, dysregulated and excluded!
When Neurodivergent bodyminds experience burnout, when our nervous system’s protectively shift into shutdown, exhausted and overwhelmed, the full force of this lack of equity hits home.
The call for an investment in a new paradigm is clear. Individually and collectively we all have a responsibility to lean into our power and to keep challenging the conventional wisdom of outdated approaches.
Our amazing children have so much potential and so many talents that the world needs to benefit from. It is not ok for them to keep being expected to ‘cope’ in settings that in the end cause them to collapse. Or for us as adults to remain trapped in this burnout cycle.
As a late identified Autistic individual, I ‘coped’ at school. ‘Coping’ with the status quo for me included fatigue, sensory overwhelm, shutdown, dysregulation and having unmet needs. ‘Coping’ for me also meant being a child who did OK at academic work, when I should have been doing really well, when I should have been thriving.
‘Coping’ as an adult meant all sorts of things for me, including a restrictive relationship with food, a gradual disconnection from my body and in my most profound burnout a call to make significant changes to my life.
Too many unidentified neurodivergent adults grow up with unmet needs. Just as we did, just as all children do, the children of this generation deserve so much more than ‘coping’ and ‘surviving’.
Together we can challenge the outdated premises upon which our current systems are based. The need to move beyond the conformity and compliance based paradigm is immense. Now more than ever, we need an inclusive and compassionate paradigm that prioritises what safety and connection looks like for every child’s nervous system.
We need to stop forcing children to endure environments that result in distress, unmet needs and trauma. Our families need real alternatives, that are not limited to home education if school cannot meet need!
Meaningful systemic changes to our systems need to include new investment in creating environments collaboratively designed with the knowledge and wisdom inherent in the neurodivergent community.
Every child has a right to have their individual needs met and their differences radically accepted and respected. Currently there is no commitment yo do so, rather families are left unsupported, or barely supported in theworld of home education.
This gets officially and incorrectly referred to as ‘elective’ home education. Whilst we have found that we love home educating our boy and we do so with our whole hearts, and to the best of our ability, we did not elect to do so. Elective means optional and implies that a choice was made in favour of other available options that could meet need. We do not ‘elect’ from a ‘list’ of one!
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 (that we didn’t understand until he was older) meant that he found the move from purees to more textured food really tough.
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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