Thursday, 28 May 2020

Neuroception Through a Neurodivergent Lens

Libby Hill: I am delighted to be talking to the person behind Changing The Narrative About Autism And PDA Jessica Matthews. I’ve been following her for a while now and look forward to her posts. She wrote an article last year which really resonated with me. Welcome Jessica!

Jessica Matthews: Hi Libby. Thank you for asking to interview me about neuroception and PDA.  

Libby Hill: Thank you for accepting!

My first question for you relates to the term neuroception: can you explain what neuroception means?

Jessica Matthews: The term neuroception was coined by Dr Stephen Porges who describes neuroception as “how our neural circuits distinguish whether situations or people are safe, dangerous, or life threatening. If our neural circuits perceive a threat; the principal human defence strategies are triggered” (Porges, 2004).

Simplified a little, we can say that through our senses, neuroception is the process by which our nervous systems, determine whether we are safe or unsafe.  

In 2004, Dr Porges wrote an article called “Neuroception: A Subconscious System for Detecting Threats and Safety”. This was seminal for me as a young Psychology graduate. It really spoke to the experiences I’d had working with Autistic young people, as well as to the work I had moved onto with Looked After Children.  What I couldn’t have imagined, was how deeply I would re-connect with the implications of neuroception ten years later, when I became a parent.

Dr Porges’ Polyvagal Theory explores how our neuroception of threat triggers defensive responses. These present in the form of adaptive behaviours in that they have a protective function. Unfortunately, adaptive behaviour is often misinterpreted as challenging behaviour and treated as such.  When we become Polyvagal informed, the adaptive nature of behavioural responses becomes much clearer, as does our understanding of the underlying feelings of threat. “The autonomic nervous system (ANS) has two primary systems; the sympathetic nervous system and the parasympathetic nervous system. (Schwartz, 2016).  Polyvagal Theory explains how the vagus nerve (the longest nerve of the autonomic nervous system and the main component of the parasympathetic nervous system) has two distinct branches; ventral and dorsal. These can be more accessibly referred to as our ‘safe and social’ state (ventral), and our ‘freeze’ state (dorsal vagal), where freeze includes a state of fright, dissociation, immobilisation, collapse and fainting.  The vagal system contrasts starkly with the sympathetic adrenal system; which generates the mobilising behaviours which form our ‘fight or flight’ state. The ANS also has ‘mixed states’, one of which is fawning.

I could see from an early age that my son’s defence strategies were triggered by certain sensory stimuli and at a slightly later stage that he was also triggered by everyday demands. I knew instinctively that he had some differences in sensory processing, because I did too.  His responses to demand stimuli resonated with me and confused me all at the same time, until we later came across the PDA literature.

It then became really important to us to understand more about the cues that were calming or threatening to our son’s nervous system.  We wanted more understanding so that we could honour his responses, without feeling so challenged by them and as such, become more able to support him to feel safer in his environment and relationships.  
Polyvagal Theory makes the important distinction between perception and neuroception. Perception involves awareness and usually some degree of interpretation at a conscious and cognitive level, whilst neuroception is reflexive; an automatic process, without conscious thought.  “Before the brain understands and makes meaning of an experience, the autonomic nervous system, via the process of neuroception, has assessed the situation and initiated a response” (Dana, 2018).    

Libby Hill: What can we do if we suspect that neuroception is an issue?

Jessica Matthews: This is such an interesting question because it depends so much on our perspective. When we categorise particular variations in neuroception as ‘faulty’ or otherwise, we align with a medical model. This feels incongruent for me, so I had been using the term ‘highly sensitive neuroception’ which I set out in my article Highly Sensitive Neuroception May Be At The Heart Of PDA     More recently, the term ‘finely tuned neuroception’ was introduced by Tracy Farrell (2020).  This phrasing feels even more closely aligned with a respect for how our nervous systems protect and safeguard us, exactly as we need them to. Within a neurodiversity framework, I see differences in neuroception as naturally occurring and part of a response system that is “an expression of a neurobiological process”, (Porges, 2004) in social context. 
Individual’s neuroception of threat and safety will vary because “our nervous systems are all shaped a bit differently” (Dana, 2020).  When we consider neuroception as a response to the features in our relationships and in our environment, we can begin to consider neuroception within the context of a social-neuroscience model.  From here, we can begin to integrate considerations about how the social world also impacts our neuroceptive responses.

Understanding neuroception outside of a medical model has helped me to understand both my own and my son’s neuroceptive responses through a polyvagal lens, supported by the ‘Golden Rule of Neurodiversity’. The latter is written about by Dr Nick Walker (2015) who sets out the crucial nature of “respect[ing] the bodily, sensory and cognitive needs of others as you would want your own to be respected, whether or not you understand the reasons for those needs”.  This last point for me, speaks to neuroception as well. For there are many times when we struggle to recognise or understand what our own neuroception of threat is about, let alone what our child’s may be related to. Respecting and seeking to understand neuroception, as complex as that is, is very helpful indeed.  For neuroception can be seen as part of an “implicit bodily process out of which our narrative arises” (LaPierre, 2007), and is in many ways an experience in the body that has no words.  Much like interoception, it is linked to micro-sensory experiences that can be felt in the body, sometimes very powerfully, but are very difficult to describe. 

Polyvagal Theory teaches us how important it is to understand our nervous systems more deeply.  As parents, carers and professionals, our nervous system state is always the starting point, the platform from which we send out neurophysiologically shaped cues of safety or threat to our children. If our nervous system is in a defensive state, we will unintentionally send out unsafe and unsettling cues. When children are struggling themselves, their neuroception will be heightened and at its most finely tuned.  
Being on this journey, has required me to develop my own somatic awareness and to start to honour and nurture my own nervous system, in a way that I hadn’t before.  Doing this has been central to supporting my son’s nervous system and his sense of safety.  The goal is not to always be in our safe and social state, none of us stay in one state all the time.  We live, we feel, we respond. Nobody would benefit from having robotic parents who appeared to glide through the day, untouched by humanity. Rather, the goal is to strengthen our own safe and social state, so that we can spend more time there and also find our way back there more easily.  From our safe and social state, we can also repair any relational ruptures with greater ease, which means that those inevitable times when we all lose our calm as parents, can be resolved with our children being able to return to their safe and social state too. Doing this, helps to prevent children from being left alone with unresolved stress that can get stuck.

Becoming aware of what our different nervous system states feel like, how differently we communicate within each, and how differently our children respond to us when we are in each state, is central to how our children feel when they are with us.  Once children’s defence strategies have been triggered, they need to receive really strong cues of safety and co-regulatory support to be able to return to their safe and social state.  This responsibility, to be regulated as caregivers, is a critical one. For Neurodivergent children, the world can be a very demanding and overwhelming place, so parents, carers and educators need to be able to open their hearts and arms a little wider. 

As adults, we need co-regulatory support too. This need is a human one, and it is lifelong.  Polyvagal Theory teaches us that connection is a biological imperative.  None of us were designed to navigate this world alone, or to parent in it alone.  However, in a world where we are all under more pressure, juggling more, with less time for stillness, it is not always easy to find this. For many Neurodivergent families, this can feel even more challenging, as we are frequently misunderstood and often isolated with the challenges we face. Finding a community of supportive adults who really “get it”, is critical.

As a Neurodivergent adult and parent of a Neurodivergent child, I have also needed to really think about the heritage of my own nervous system.  It has been really important for me to start a process of re-parenting my nervous system and to recognise some of the younger parts of me, that needed co-regulation, especially those parts of me that needed embracing as Neurodivergent at a time where, without fault or blame, such insight was not on anyone’s radar.  None of us can know, what we do not know.  This process is challenging and can be a painful one. It can often be a time when seeking our own support from another safe adult can be really helpful.

The adults in children’s lives, play a central role in shaping their nervous systems.  Self-regulation is predicated upon receiving sufficient and consistent co-regulation from birth.  The state of adult’s nervous systems is central in this, for if the adult and child are both starting off in a fight or flight state, the path ‘home’ becomes a little uphill.  Crucially we need to appreciate the science of Polyvagal Theory here, which shows us that you can’t ‘fake’ safety cues.  It isn’t possible to ‘paint on’ a smile or ‘act’ in a calm manner.  You can’t kid the nervous system, because neuroception will always detect incongruent cues in another person’s nervous system. Children generally, but particularly those with finely tuned neuroception, are very skilled at cutting through our facades. This means that authentic communication is not just advisable, it is crucial.   
Libby Hill: What would you say to parents who are wondering if this is their fault?

Jessica Matthews: There is no fault or blame in any of this.  Finely tuned neuroception in the context of PDA, is also in the context of being Autistic, which is defined beautifully by Walker (2015) as a “genetically-based human neurological variant”.  There is no ‘disorder’ here, no “faulty characteristics” just differently shaped nervous systems, experiencing the world in different ways, each seeking safety and connection from another, sometimes struggling to do so when immersed by fear and threat. For Neurodivergent individuals, the world presents many more danger cues, especially in the form of intense sensory, social and demand stimuli.  Therefore, in unsupported environments, it is much harder to access safety cues. The cues of safety that are found in connection with others, become less accessible when the nervous system is in a defensive state.  For Autistic people with a PDA profile, safety is highly contingent on the need to be autonomous and free and with this comes a distinct skill for detecting agendas, directions and demands. 
When we look at PDA through a polyvagal lens, we can see how, via neuroception, demands are often coded as threats.  When we understand PDA as a protective response system, that defends the individual’s need for autonomy and freedom, within a world that is already full of overwhelming multi-sensory stimuli, it is much easier to understand how frightened and overwhelmed individuals with PDA feel, a lot of the time.  It also becomes easier to appreciate how, when environmental and relational adaptations are made within a framework of deep understanding, that this very same group have the potential to thrive and achieve amazing things. 

It is really important that we prevent ourselves falling into the trap of conceptualising finely tuned neuroception as ‘faulty’ or ‘problematic’. It is much more helpful to understand and provide supportive and nurturing contexts, that prioritise emotional well-being.  Many Neurodivergent families have likely experienced more than their fair share of assessment and judgement and so it is really important that blame narratives are quashed.  When we consider finely tuned neuroception in the context of Autism more broadly, we need to integrate the current evidence which “indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness.  This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable” (Walker, 2015). 

Libby Hill: Would you say we are teaching masking when we want compliance at school or to fit in with peers?

Jessica Matthews: I would say that in any setting where children’s neurological needs are not honoured and supported, that their nervous systems will be triggered into a defensive state. This can present as masking or as fight, flight, freeze or fawn.  All of these have a huge emotional and physiological cost to the child. You know better than most Libby, that when children don’t feel safe in their school environment, “their learning brain is hijacked by their survival brain” (Ham, 2017) and their nervous systems are put under tremendous pressure.  There are many amazing teachers who do everything they can to support their students.  However, our special educational needs and disability support systems remain underfunded and poorly resourced, whilst our education systems remain steeped in outdated behavioural theory. There is a lack of integration of current Autism research conducted by Autistic researchers, and research from neuroscience, psychology or child and adolescent mental health, all of which shows that when we are attuned to and nurture children’s emotional well-being and their individual neurological needs, we support their lifelong physical and mental health.  Whilst schools continue to use isolation, restraint, exclusions, rewards and punishments in an attempt to motivate children who can’t, rather than won’t, they fail to honour this evidence base and our children’s health and happiness. The time to embrace a paradigm shift and to become Polyvagal Informed is now.

Libby Hill: And on that subject, I’m really pleased to be able to share the news that you are writing an exciting book about Polyvagal Informed Parenting and PDA, which is due to be published by Jessica Kingsley Publishing in June 2022.  Is there anything you can share with us about the book before we end?

Jessica Matthews: Yes, absolutely.  I’m so excited about my book.  I’ve been working on its content for a while now and I was thrilled when Jessica Kingsley Publishing offered me a contract. The book will share the parenting approach that we have organically developed through a polyvagal lens, within a neurodiversity framework and with a growing understanding of our son’s and each other’s needs. This Polyvagal Informed Parenting approach has helped us to support our son to feel safer in what is a demanding world.  The book will provide an understanding of the autonomic nervous system, an accessible overview of Polyvagal Theory through a Neurodivergent lens.  It will cover a working understanding of how we offer, what I call the Polyvagal Informed Core Conditions (PICCs) across different aspects of PDA parenting.  I hope that the book will feel supportive to other families who may feel as lost as we did at the beginning of this journey.

Libby Hill: Thank you very much Jessica. I look forward to talking to you again at some point soon.

Jessica Matthews: Me too, thank you Libby. Speak soon.

For more from Jessica Matthews you can follow her at  Changing The Narrative About Autism And PDA

Friday, 15 May 2020

PDA Awareness Day 2020

Can you believe that it’s five years since the first episode of Born Naughty was shown on Channel 4. Honey was the first person who I had come across who had PDA. I knew she was autistic but I knew it wasn’t typical autism. Thank goodness for an open-minded paediatrician who didn’t mind putting his neck on the line as well, to declare to the world that we felt she had PDA. 

It’s quite embarrassing looking back on my lack of knowledge of the wider implications of PDA, for example, I am heard to describe it as 'a mild form of autism.' How wrong was I? 

But I’m willing to admit that and I am not afraid to admit that I knew I needed to learn more. I have spent the last five years doing just that: talking to children and young people with PDA and listening to young people and adults with PDA plus listening to Parents of children and young people with PDA. 

I know so much more now than I did then but I also know there is so much that we need to know. Research is moving forwards but we need much more. How apt that it is actually PDA awareness day today. If you have a look at the PDA Society website they have a whole lot of quick tips and information to share with others here is a roundup of their most popular

  • Demand Avoidance of the PDA kind video
  • Introduction to PDA webinar in partnership with the National Development Team for Inclusion
  • Helpful approaches infographic
  • PDA related suggestions for healthcare passports
  • PDA Alert cards & PDA Awareness cards
  • Life with PDA
  • Working with PDA
  • Keys to care for PDA information sheet

  • Help spread the word and increase undrsatnding because only with undersatnding can acceptance develop.

    Monday, 13 January 2020

    What do you meme, you aren’t using photocopied worksheets in your social skills sessions?

    This year I have been working with an increasing number of young people, who due to such high levels of anxiety, are struggling to engage:
                            - To engage in school expectations
                            - To engage in home expectations
                            - And to engage in ‘traditional’ speech                             therapy sessions
    So you do what you know is essential, spend time getting to know the individual, rapport build, offering a reward..
    But… what if the YP is still finding it difficult to follow the ‘adult-led’ agenda because there is the underlying demand to comply?
    What do you do now?
    Well most enthusiastic therapists know the importance of using a child’s interests within therapy sessions to engage them…
    But.. what if the YP has limited interest in anything beyond sitting in their bedroom playing computer games all day?
    Well of course we could use this as a reward to try and entice them into completing the therapy activities first
    But… why would the YP ‘buy-in’ to completing your activity just because you want them too, when they are already happily enjoying their interest without needing to ‘earn it’ first?
                I myself, don’t have to adhere to persuasion of doing something I find difficult, like running a marathon, just on the promise of a ‘glass of wine’ reward at the end, just because someone said it would be in my best interest to do the exercise. I would still find it anxiety provoking to conform to their wishes, however much I liked the person and especially if I was already able to go to the fridge and pour myself a glass without. No exercise necessary!

    So… faced with the dilemma of how to support my YP to ‘buy in’ to my sessions I had a serious head scratching moment until I thought about the likelihood of me running a marathon at the same time as drinking wine.
    Now that is an interesting concept indeed!! Why does one action necessarily need to precede the other?
    Well… despite the complicated logistics of this, I have to admit that the probability of me going for a run has significant increased.
    ‘Lightbulb moment’ – how can I embed my speech and language targets into the actual activity the child enjoys?

    Despite my significant lack of gaming talent, one thing I found I did have in common with the YP I was working with, is enjoying the humour of memes.
    So… where to start? Well after having fun sharing our favourites and discussing what we found funny about them I soon realised the previously highly anxious YP, who struggled to engage in any reciprocal social conversation, was soon confidently and spontaneously talking me through the steps of how to create my own Tumblr account.

    Now, I must admit those sessions that are completely unscripted, when the therapy plan has gone shooting way off the map, is the most enjoyable part of my job and I’m happy to be a passenger to a student who feels motivated enough to take the lead.
    But…what actual speech and language targets am I working on when using memes?
    Well to be honest, we were actually working on a lot of therapy goals simultaneously!

    Social Thinking Goal 1: initiating communication that is not routine
                When she is not anxious, Emily has no difficulties in engaging in conversations about something she is interested in. However, where before she would just talk ‘at me’, now during the sessions she can confidently initiate a narrative of talking me through the Tumblr sign up process and displayed the best turn taking skills so far; even pausing and allowing me the opportunity to ask for clarification.

    Social Thinking Goal 2: Listening with your eyes and brain
    When Emily was anxious, she would cover her face with her hair and squeeze herself between the sofa cushions. But now she uses ‘whole body listening’ with confident posture, joint attention and initiation of eye contact when she is communicating.

    Social Thinking Goal 3: Understanding abstract language
    Most of the language we use is peppered with idioms, metaphors, sarcasm and inferences and each generation of teenagers and young adults leave a trail of new slang for consumption - most of which is abstract. Through memes, I am able to teach Emily how to make a ‘smart guess’ to interpret the abstract language based on her previous knowledge, the context of the picture and the non-verbal communication clues.

    Social Thinking Goal 4: Understanding perspective:
    The ability to interpret others’ perspectives, thoughts and feelings is critical to social learning. Looking at memes with Emily created the opportunity to work on her Theory of Mind skills by discussing the point’s of view of not only the people in the memes but each other and our individual interpretation of the jokes. Whilst Emily was narrating how to set up my Tumblr account, I reminded her that I had no prior knowledge of the website. She was able to effectively use her own analogies to link these new concepts to the social media knowledge that my ‘inferior brain’ as she called it, already knew so that I could understand her.

    Social Thinking Goal 5: Getting the Big Picture
    If a picture is worth a thousand words then a ‘meme’ must be worth a million and the opportunity to share an imagination with other people is priceless. These therapy activities focused on teaching Emily to infer how to link individual pieces of information into an overall idea – to get the ‘bigger picture’.

    Social Thinking Goal 6: Humour and Human Relatedness
    Establishing human relatedness is essential before advancing in any therapy sessions; which is why rapport building is essential, especially with our most anxious students. Emily has a fantastic sense of humour and a very dry wit! But she often feels too anxious to use her humour successfully with others. So starting the therapy process with memes has helped to minimise some of her social anxiety.

    Last year, Emily was a very anxious young lady, isolated at home and had little to no social interaction outside her immediate family. Now, although her socialising is still largely from the safe space of her house, her anxiety has decreased enough that she is interacting online with other YP with similar interests and is beginning to leave the house to visit local attractions. Everyday Emily is one brave step closer in gaining social confidence to engage in reciprocal conversations with new people.
    We’ve since extended our sessions from also decoding magazine adverts and T.V. commercials to creating our own memes. It was surprisingly easy to embed all of my therapy targets into these activities; the only confusing thing was why I hadn’t tried this idea sooner!   

    So what I ‘meme’ is that therapists need to stop thinking about what they think speech therapy ‘should’ look like and instead about what is the most functional and meaningful skills for the YP to learn to help them interpret social information and interact effectively with others. And not a photocopied worksheet in sight!

    Monday, 23 December 2019

    The Joys of silly season! December 2019

    The demands of Christmas are sometimes completely overwhelming.  Buying the right
    stuff, in the right shops at the right time for the right people. But the difficulties go beyond that.
    Many autistic people are able to feel the weight of social expectation. For me it feels like a
    suffocating pressure squeezing me into the neurotypical world. A world where I know I will
    struggle, where I have struggled and where I have more recently spent much less time.
    The pressure to engage in traditions that mean nothing to me. I don’t believe in Christmas
    in the biblical sense of the word but I don’t inflict my opinions on others and am not
    planning to start today because not even that is the most important thing to me.
    The absolute most important thing to me is doing Christmas in our way. Doing what I can
    to avoid the fuss and keep our version of normality at the forefront of everything we do.
    Just because its Christmas doesn’t mean that outside influences should be forced upon
    us. Christmas is an event created by people who don’t fit into our normal and who quite
    frankly would probably hate it and that's ok.

    Despite being an adult and being able to make choices for myself I still feel that overwhelming weight of expectation. It stops me from sleeping well, from focussing on the things that are important to me, it disrupts everyone's routine.

    And for our children these expectations are greater still so it is our job as parents no
    matter what our issues are to make sure that these expectations don’t become coercion or
    guilt trips for our children. It is very easy for others to think it is ok to "encourage" our
    children to join in with, do or say something that makes them feel uncomfortable. We have
    to stay vigilant.

    For years and years I conformed to social expectations around this time of year.
    Repeating the process year after year did not make Christmas easier for me, in fact as
    each year went by it became harder and harder. Yet, it is only since I began my journey
    towards empowering H that I have learned to empower myself.

    So now I say no, I want to shout it from the rooftops, no, no, no, no more. I am putting an end to complying to traditions that mean nothing to me and by being brave enough to say no I hope I can empower H and other autistic people to be brave enough to put themselves first and keep themselves and their mental health safe.

    Why would we spent so much time empowering H to have a voice only to have someone
    coerce/guilt her into something that is purely based on the social expectations of others?
    From today I am saying no more.

    Rachel Tenacious

    A little bit about me, I am a late
    diagnosed autistic parent with three
    children aged between 31 and 17. H is
    my youngest child she was diagnosed
    with autism at age 9 and selective
    mutism at 15.
    We removed H from the education
    system in 2015 after she had what we
    now know as an autistic burn-out.
    The school system didn’t suit H at all
    but home ed has been amazing.
    Since my diagnosis I have begun to
    share some of our experiences at
    support groups and am hoping to
    expand this out to schools, colleges
    and anywhere people will listen

    Sunday, 17 November 2019

    When is inclusion not inclusion?

    When your child/young person with SEND who has struggled in the system starts a new setting, you have all the hope in the world that this time it will be different. To begin with it seems possible that you may have finally found the place that will genuinely understand inclusion.

    For us, this was mainstream number four after four years of home ed. 
    After attending a course specifically designed for home ed students for year 11, we decided that this was possibly the best chance for H at post 16 in mainstream.

    H had to audition for the course she wanted to do in December of the year before she was due to start. At the audition she was told that the college would definitely offer her a place on a music course. With hindsight, that was the point at which it went wrong. The reason I think this is that from that point forward we should have requested transition plans would be made and transition started especially as H was already on campus 2 afternoons each week.

    We got to spring and GCSE season took over, the music department was busy with their music festival which we visited one afternoon and enjoyed. We had meetings to discuss which level course would be appropriate and to review H's EHCP, still no transition plan was made.
    At this point alarm bells should have rung for us, H was having a massive wobble about attending college but we assumed it was the stress of exams and the pressure that she was feeling.

    It was agreed that the level 3 course would be most appropriate for H based on her musical ability. We looked at the syllabus online but didn’t get to speak to anyone about the expectations of the course.

    Then we reached summer, there was an open day for new students but for some reason H didn’t get invited. We think that it was because she was registered as a student at college already but it was another missed opportunity to begin to familiarise H with the department she was due to join and the course she was due to start.

    September arrived, H had passed her maths and English GCSE which was an incredible achievement. 

    H was offered an induction day alongside all the other students. It was a full day but as soon as we told the staff that a full day would be too much the length day was reduced. Which was fine but it meant that H didn’t get access to all the information she needed. She was overwhelmed and stressed and couldn’t absorb anything that was said to her.

    Then college started, H's timetable was reduced as a reasonable adjustment and if there were sessions that she couldn’t cope with she didn’t have to go but....

    Is this inclusion? 

    I have found myself asking this question many, many times over the past 4 weeks since H stopped attending college. Yes, after 4 weeks she stopped attending and there is no hope at all of her reintegrating.

    Inclusion to me means making a course accessible to all students not offering a course and then simply expecting the students to fit in with the expectations. 

    H had 1:1 learning support staff, they were not responsible for including her in the course, their role was to communicate for H when she was unable to and help her remove herself if she was feeling uncomfortable or stressed, to help her to move around college if she needed to and many other things but I don’t believe that it was their role to make the course accessible to H.

    From the very first day H was put into a group and had to work on exactly the same topic as all the other students, she was following exactly the same programme as others, if there were things she couldn’t cope with she was allowed to skip them. But this is not inclusion, in fact, it is exclusion. By telling H she doesn’t have to do things she is effectively being excluded from parts of the course and from college life.

    When things started to go wrong and I requested work for H to do at home nothing arrived, when I requested a meeting it became clear that the staff hadn’t met a student like H before and it was obvious to me that we had reached the end of the road with mainstream.

    This is how it is, the course is the course and H either needs to fit in and cope with it or she doesn’t but if she can’t there is no alternative,  there is no plan B there is no inclusive version of the course that can be adapted for H so that she can attend and achieve.

    I wonder if mainstream colleges can ever be truly inclusive?

    There are courses that H could do with other disabled students but that isn’t inclusion, that is segregation!

    Having a 1:1 to navigate the staff and the ups and downs of day to day is integration and is part of the way there but it's still not true inclusion.

    Now we are looking at specialist colleges, can they be inclusive? I don’t know.

    Maybe they can be inclusive in terms of developing a package that will support H to begin to build her confidence and trust in adults away from home. They maybe inclusive within themselves and that is brilliant, but H will still be excluded from mainstream, her disability has once again prevented her from accessing a mainstream setting and in my world that shows how far we still have to travel for our disabled children and young people!

    Rachel Tenacious

    A little bit about me, I am a late diagnosed autistic parent with three children aged between 30 and 16. H is my youngest child she was diagnosed with autism at age 9 and selective mutism at 15.

    We removed H from the education system in 2015 after she had what we now know as an autistic burn-out.
    The school system didn’t suit H at all but home ed has been amazing.

    Since my diagnosis I have begun to share some of our experiences at support groups and am hoping to expand this out to schools, colleges and anywhere people want to hear me really.