A memorable day!

I’ve just seen a lovely post about a bride surprised on her wedding day by 2 students with down's syndrome bringing the rings down the aisle https://www.facebook.com/theapparentlypage/videos/vb.102972927835054/2328978547411853/?type=2&theater

It brought back memories of a wedding I went to with my then husband, M. 

I was working as speech and language therapist in a residential special school for children with ASD and complex communication, where we had a brilliant team of teachers and TAs. It’s probably my favourite place to work apart from this current job.  I had a really good working relationship with all the staff including Katrina, the music teacher. Katrina was getting married. 

Katrina had a lovely autistic student in her class, J aged 10 years, who looking back, had definite demand avoidance. She was bright, bubbly and we all loved her. She was also very stubborn and said and did things to shock. She had tried a part-time placement at the local school but her lack of inhibition had become too much of an issue.

J had shown a lot of interest in the build up to Katrina's wedding. She was interested in the dress, the groom, the cake etc and these topics had been incorporated into lesson planning with great results as it was following her interests and led by J herself.

Katrina, therefore, said, 'Yes,' when J asked if she could come to the wedding. J's mother was horrified, as she was far more experienced than us at taking J out to places. We always went to planned places with easy exits and at least 3 staff plus Roger the driver and a risk assessment. Her mother said it would be too difficult. As an eternal optimist, I naively said it would be a shame if she couldn’t go and that she could sit with me and M.

On the day of the wedding, I hadn’t actually got around to telling M that we were going to have a third person with us. I mentioned it quite casually as we were parking the car. As we got out, a little blonde head emerged from the open window of a passing Mondeo, screaming LIBBY!!!!!! 'I guess that’s J!?' said M with a strange pained look on his face, that I hadn’t actually seen before.

We sat mid-way in the church on the bride's side and J read through the order of service. As I listened to her (excellent) reading, it dawned on me we weren’t there for  the usual 20 minutes. Oh No, it was a catholic wedding and Katrina was a musician, so it was almost 2 hours with musical interludes and lots of readings and prayers.

Katrina smiled and mouthed Hello at J as she came down the aisle and J bit her hand in excitement and pleasure.

J sat quietly for about 10 minutes, then she began to entertain herself. 'MMMM Reverend Crisp.... I bet he likes walkers best. Do you think he likes cheese and onion?' I whispered, 'Maybe' hoping that would placate her but instead she yelled, 'Oy Reverend, do you like cheese and onion?' I daren’t look at M but could feel the heat from his embarrassed face as the entire congregation looked towards the source of the shout.

Bored, she began to try cuddle me, then put both arms tighter and tighter round my neck until I was struggling to breathe, but at the same time trying not to make a scene or fuss! I had a hat on so couldn’t wriggle out from under her grip, which was what I typically did in similar situations. I also usually had other staff who would come to my rescue, as we always had each other’s backs. M didn’t know what to do as he was upset that he could see I was being hurt but he was big guy and she was a10yo child. I used the super diversion tactic and asked M to get out the chocolate bar in my bag. Emergency instantly over!

Next, with melted chocolate now allover J's face and my cream dress, she turned to the deputy head behind us, 'Is that your son?' she asked, knowing full well it was her husband. The DH never really understood the children, so she hissed her through gritted teeth to stop being rude and turn around. 'There's no need to be rude, you ugly poopy pants in stupid glasses and your dress looks like a bag,' said J!

After a short interlude of silence, she then said quite, quietly, 'I’ve just done a wet fart.' I whispered back, 'Don’t worry, I’ve got some spare pants for you.' This wasn’t sufficient, so she loudly, yelled, 'I said, I’ve done a wet fart!!'...... just as the congregation had silenced to pray...... 

I won’t go on but needless to say it got louder and worse. I’m not sure why I didn’t think of it earlier but eventually, we went for a walk, leaving my husband to stay, frozen in embarrassment in the church. I didn't see J's Mother, but she told me afterwards she was hiding at the back of the church just grateful it wasn’t her with J on that occasion. 

Katrina had been aware of J throughout and thought it was highly amusing!  

And you never noticed

For my darling girl, when I find the time and the courage to write again: 

Dear SENCO, I did notice, I did tell you, repeatedly. I shared all the information. I had about my child with you. But your hands were tied, funding, policies etc.

You "didn't see anything" in school. Although my girl couldn't cope with school dining room, sat on a wobble cushion in class, wore her ear defenders constantly, was always the last one to be ready for PE, left school every day with Mum waiting at classroom door with her favourite cuddly toy and threw her school bag at mum, stomped accross playground, got into car, started to shake and refused to cry until car was on the main road and past all her peers who walked to and from primary school as a group, without their parents.

You never noticed that she ate the same packed lunch every. Single. Day?

You never noticed that on every school trip she needed to sit next to the same teacher, at front of coach and eat polo mints, because she got travel sick.

You never noticed her pulling her hair out in class, scratching herself til her cuticles bled, that she returned to school after summer break with eyebrows and eyelashes and hair ina pony tail. You never questioned why 5 weeks later, after school residential, parent sent photos in of child's depleted hairline, non existent eyebrows and lack of eyelashes?

You made an emergency referral to Social Services citing "Safeguarding concerns" when 3 weeks later parent emailed to say child has had 2 panic attacks at weekend, said she wanted to die and would not be in school because you were seeking an urgent private apointment with a Paediatrician? Because child had been on the CAMHS waiting list for 2.5 years and wasnt severe enough to warrant any input?

You never noticed how Mum stopped talking to anyone at school, about anything? You never noticed how mum sat at the back, nearest the door, at school assemblies? You never noticed the bags under Mum's eyes? Until she broke down in the "Way Forwards Meeting" when you told her child must come to school every day because attendance was really important?

So, you never noticed?

Yet you were concerned enough to contact the Multi Agency Safeguarding Hub on a number of occasions that term?

And you could find the time to ring them every other day to ask them for an update?

And you could arrange meetings with professionals but not inform or involve mum because you were "concerned about her mental health?"

So, you saw a silent mum, at the classroom door, every single day. You saw the child for 6.5 hours per day, 5 days a week. But you didn't notice. Until child became too ill to attend school.

Then you found the time to invite yourselves, 2 members of staff at a time, round to my house, my child's safe place, on less than 24hours notice because you needed to do a welfare check.

Yeah, you never noticed...

Well, I'm glad you haven't had to notice the flowers on the grave....

I'm glad that I stopped my child attending school that term. I'm relieved that the Government ordered the schools to shut. I'm glad that my child wasn't classed as vulnerable. I'm glad I am not a key worker. I am glad my child doesn't have an EHCP (yet). I'm glad my child doesn't have a social worker. I'm glad the social worker decided there were "no safeguarding concerns".

I'm glad my child is still alive. I'm glad we can enjoy another day, together.

And you never noticed....

ANONYMOUS

Shared, anonymously with The Author's Permission  

#secretparent

@AutisticGirls_

But they have no problems in School: Autistic Masking The Hidden Trauma of Our Children

Guest blog by Jodie Smitten

As a Post Grad student I have recently submitted a 5000 word assignment on this subject, so I will be attempting to avoid going in quite so deep and stick to the main points…not an easy task when I feel so passionately about this topic!

I know there will be many parents that will read this and learn nothing new. For many children and their families this is their everyday lived experience; feeling misunderstood, trapped, unsupported, and isolated. Alongside this many families are fighting for help for their child who is struggling with mental ill health as a result of masking.

But this piece isn’t aimed at those families, it’s FOR these families. Raising awareness of masking amongst professionals is vital for the mental well-being of our autistic children. The aim is to save children from distress, save children from trauma and save lives.

Masking, also known as social camouflaging is the ‘performance’ put on by an autistic person in order to ‘fit in’ with surrounding people, often by supressing autistic tendencies or hiding the difficulties they experience in the non-autistic world.

So how can this look?

A person who; is suppressing excited jumping and flapping, doesn’t voice the distress caused by the lights being too bright, mimics the fashion, speech and interests of a peer or continues a conversation about football despite being bored senseless! It can look like a child who appears calm and happy all day at school, but the minute they meet the safety of Mum or Dad ‘lift the lid’ of their emotions and spiral into a meltdown, it can be the child who has numerous meltdowns in the morning over socks feeling wrong or hair having too many bumps in it, yet the second they cross through the school gates appears to ‘click into character’ and appear ‘fine’ and maintain that façade for yet another day. 

Now I’m sure many non-autistics reading this may well think ‘well that’s not so unusual, we all do that from time to time’ and yes that’s absolutely correct. But for the autistic person the extent of masking is deeper and more labour intensive than that of the non-autistic. It involves intense focus and holding back what is natural, overriding ALL of one’s true self.

So, why am I so concerned with autistic masking?

Simply put masking hinders autistic life, actually that’s an understatement. It hinders access to assessment and identification, it hinders access to adjustments and support in education and it hinders others (including parents) understanding of a child’s needs and therefore a child won’t have adjustments made in any of their environments. Now if we consider Beardon’s (2019) ‘golden equation’ autism + environment = outcome…… an autistic child with no environmental adjustments or support will not be able to reach potential and the outcome is dismal to say the least.  In short masking causes high levels of stress and exhaustion, autistic burn out and mental health difficulties (Hull, et al., 2017; Cage, Monaco & Newell, 2018).

So if masking is so bad for self, why would anyone do it? Survival is the simplest answer. Protection from being picked on by peers, protection from adults ridiculing, and sometimes from their own parents who know no better. Yes, I’m guilty of trying to insist my child just ‘wears the blinking socks’ before realising she was autistic and wasn’t just being a ‘fuss pot’. Many autistic children learn from an incredibly young age that it’s easier to just try and ‘fit in’ and ‘not make a fuss’ if you don’t want any unwanted negative attention. If I had a pound for every time someone told my 4 year old he ‘needs to get his hair cut’ I would be rich. These aren’t nasty people, these are just fleeting comments to them. Little do they know that he is petrified of having his hair cut and even sitting in the barber’s chair is enough to cause him to shake and drop his bottom lip. Why should he be subjected to that just to ‘fit in’? But sadly for many children the comments and ridicule become too much and they buckle and submit to the ‘norm’. 

So Let me break my concerns about masking down:

Masking hinders assessment and identification

You take your child to the GP, you tell the GP you think your child may have autism, the GP takes a look at your child who is dutifully sat there, asks them a few questions which they answer. The GP then states he needs ‘evidence’ of difficulties in school, (and yes some professionals will still state that if a child is autistic it will ‘show’ in all environments!) The school say they have no ‘issues’ and that your child is fine is school. And there you have it, you can’t even get a referral for the assessment pathway let alone an identification! But let’s pretend you make it that far and your child is offered an assessment, your child is then encouraged into a room with unknown people to answer a set of questions. As these people are unfamiliar to your child and your child is keen to please your child masks, acting perfectly non-autistic. The second you get back to the car your child shuts down or meltdowns from exhaustion. The result; no identification of autism and a distressed child…. brilliant!

Identification of autism is important on so many levels, it is summed up perfectly (and much better than I could write!!) by Zwanenberg

‘As without a diagnosis this can make so many areas of life difficult, distressing and bewildering for the undiagnosed person. This can result in difficult behaviours, social isolation and young people who do not attain their best ability in school. Once diagnosed, the young person can understand themselves better and realise that are not alone in the way they feel. Their parents and the professionals working with them can all learn how best to help them. The right services can be accessed and adaptations can be put into place in the educational setting. A diagnosis can prevent so much distress as the child develops and can stop further psychiatric illnesses developing’

Self- identity and ‘finding your tribe’ are so so important for our autistic children. If a child can find her tribe (those she feels connected and at ease with) then they are not burdened with social differences or a lack of understanding about their needs. Research shows that social ‘deficits’ aren’t apparent between two autistic people! Yes that’s right, the deficit isn’t necessarily a ‘defect’ of the autistic individual but actually the non-autistic person has a deficit in autistic social skills! I am a big advocate for teaching non-autistic people about how autistic prefer to communicate rather than expecting autistics to learn ‘social skills’.

The very sad fact is that often children aren’t actually identified as autistic until that mask drops. The mask becomes too heavy to bear any longer, the long term suppression has caused mental ill health, severe anxiety, incredibly high levels of stress and the mask tumbles dramatically. Your child didn’t make it to the car and had a gigantic meltdown at school, your child couldn’t manage the monstrous amount of energy needed each day to get into school with a smile on their face and they hit a wall and point blank refused to go anymore, your child started to self-harm, your child attempted to take her own life. Even then often children are ‘treated’ using a mental health intervention! You are told its anxiety, depression and your child is prescribed drugs or even worse given a course of CBT! You are told that by keeping her home you are ‘feeding’ her anxiety and that avoidance will only make it worse! This is autistic burnout. If you don’t know about autistic burnout please look it up and read some of the amazing blogs by autistic adults such as Kieran Rose (The Autistic Advocate).

Anyway….. I digress. At this point your child’s autism may be recognised. The problem with this is when identification comes at a point where a child is rock bottom, they can misinterpret symptoms of a secondary mental health condition as autism. This results in many children rejecting their autistic identity and/or despising it. Heppel (2019, pp21) who was identified late in life, described this as ‘I have to separate the autism itself from the wounds that have been inflicted by people over the years- some well-meaning, some not - in response to the way my autism expresses itself’. Positive autistic self-identity is necessary for good mental health, (Cooper, Smith & Russell 2017).

Identification should not and must not be based on outward struggles. Masking must be understood by all, parents themselves but also the gatekeepers to assessments (Teachers, SENCo’s, GPs, health visitors etc.) and those that assess for autism. The Lorna Wing centre do autism assessments that last all day, during breaks when away from unfamiliar eyes the child is being observed. As a child is in clinic all day it is likely that by the end of the day the mask can slip. This gives the clinicians a good opportunity to witness a child unmasked. Equally during my daughter’s assessment we ensured that she was as comfortable as possible. The clinicians had details of my daughter’s special interests which they used to engage her and make her feel at ease. My daughter had seen pictures of the clinicians and she met them in a familiar and known place. The assessment was conversational in style and she doodled as she talked and showed them pictures of her pets. She was made to feel comfortable enough to un- mask and speak her truths. These clinicians heard about aspects of my daughter’s inner world that even I wasn’t aware of!

Parent blaming

Ok so your child is ‘perfect’ at school, but at home you have a child who is distressed, explosive and seems unable to control their anger.  This is the Jekyll and Hyde phenomenon (Attwood, 2009). When you approach school they are shocked by the child you are describing, when you speak with the GP they too don’t believe that the child sat still and quiet in their surgery can be the same one you are describing. Not only that, but because they behave well at school, the issue must lie at home……with the parents! Parents are advised to go on a parenting course, aimed at teaching parents to have tighter boundaries, be more consistent and regain control! This approach is damaging for an autistic child.

If a parent protests this and makes several visits to the GP, insists on second opinion and fiercely refutes that her child difficulties are down to her parenting and demands autism assessments they are deemed to be trying to ‘label their child’. Or in more extreme case accused of fabricating illness (known as FII, Fabricating or inducing illness). Particularly at risk are autistic parents (including those not identified as autistic).  According to the NHS a child is more at risk of FII if the mother has borderline personality disorder, which a common misdiagnosis associated with autism (Pilling, Baron-Cohen, Megnin-Viggars, Lee, Taylor, 2012). The NICE Guidelines (Child maltreatment: when to suspect maltreatment in under 19’s, 1.2.12) states presentations that may indicate FII, some of which raise concerns if we consider autistic masking, such as ‘symptoms and signs only appear when the parent is present’, ‘reported symptoms are only observed by the parent’. The National Health Service (2019) suggest considering FII when ‘the parent has good medical knowledge’, which considering many autistic parents knowledge of autism will be good, this is a concern. All of these ‘red flags’ could be attributed to a child that masks. Children have been known to be wrongly removed from parents, I know from my role that some parents are fearful of being deemed over anxious and/or neurotic by professionals when they try to fight for their child.

 Masking hinders in school adjustments and support

So without identification and without any signs of difficulty (due to masking) getting adjustments in school can take some fighting (not in all schools, I do work alongside some amazing SENCo’s) but sadly not every child and family has a ‘me’ and not all schools are as aware and supportive.

If your child does have a formal identification of autism, masking can still hinder access to support. Again, if a school doesn’t ‘see’ any unmet need or difficulties and/or the child isn’t causing any disruption or upset to others then why would they (if they aren’t aware of masking that is!). As well as denied adjustments, children are denied access to additional services such as advisory teachers or educational psychologists (that schools are gatekeepers to).

In my role I have witnessed schools having the attitude ‘we can’t refer because we don’t have any issues’, ‘she’s fine here so it’s the parent’s problem’ and ‘we don’t actually believe she has autism’.

I truly believe that every autistic child should have a support plan. This should be developed in collaboration with parents, the child and a trusted adult in school. This should be based on a child’s differences, difficulties and presentation in ALL settings and not purely based on how they appear in school.

Without this a child that masks will burnout. Very often these children become our school refuses and develop mental ill health. Once a child hits that wall and refuses or becomes burnt out its incredibly difficult for them to return. Trust is lost, trauma is long lasting and recharge is a long process. The support has to be there from the beginning. Success from the start, not intervene when things start to fail.

And finally…….

Ok so other than poor self-identity due to delayed assessment and/or identification, lack of understanding of self, no tribe, unmet needs in school, autistic burnout, inappropriate parental responses to needs or parents being deemed neurotic the other factor that risks the mental health of an autistic child that masks (just in case you needed additional ammunition!!) lies with others mis-perception of a child’s masking behaviour!

I have experienced people who deem masking behaviour as a child being ‘manipulative’.  Implying that the discrepancies in behaviours between settings and between care givers is down to a child trying to ‘get their own way’. This can lead to the mistreatment of a child. I have experienced those who disbelieve parents’ concerns and resent any ‘special’ treatment a child maybe receiving. I reframe ‘manipulation’ as a child ensuring their needs are met to prevent trauma. Poe (2019) writes about a teacher who deemed her manipulative. During her time in secondary school Poe was emotionally abused by this adult to a horrific level due to the teacher’s incorrect beliefs about Poe’s presentation. Professionals having a greater depth of knowledge of masking would increase understanding and encourage a more open dialogue between parents and professionals. 

What else needs to change……

All professionals working with children need to be aware of masking, but not only aware but a deep understanding of the depth of it, the reasons for it and how to support a child in feeling safe enough  to share their inner self.

Our children need to be allowed to say ‘no’ without the fear of punishment or ridicule. How often when a child doesn’t want to kiss grandma or share with a friend do we insist or persecute them for going against others wishes. How can our children learn the essential self-care needed to manage being autistic in a non-autistic world if we don’t teach them to say ‘no’ when it all feels too much! As an adult people often preach ‘self-care’ to me, I don’t even what my own self-care looks like! We have to advocate and teach our children this through validating and accepting when they express themselves.

Behaviour policies in schools go against self-advocacy. Many children I have met have a deep fear or phobia of being singled out or told off in school, therefore they will stick to the rules even if this is to their own detriment. Just recently I read a school policy that insisted children showed ‘good listening behaviour’ this involved sitting still, looking at the teacher and hands on laps! I work with many incredibly bright and able children, yet if they are required to follow through with these 3 demands they have little mental energy left to actually process what is being said to them. Yet they are too scared to act out their natural neurology of fiddling and looking away from people while concentrating as this will result in being seen to ‘break the rules’ or being ‘naughty’ with terrifying implications i.e. being told off.

The Sunflower lanyard has been helpful on our journey, my daughter uses hers and feels that when wearing it people don’t judge her negatively for her differences. She feels it offers her a green card to act herself. Autistic behaviours needs to be understood and accepted, the responsibility lies with every adult. Educate your children, educate yourself! All children should be taught specifically about difference. Diversity makes up the amazingly rich tapestry of life and of humans. No child should feel less for who they are, no child should be denied identification and expression of their true self.

A bit about me!

I am a parent to 3 children, 2 goats, 6 hens, a gecko and a dog.

I am also an independent autism specialist based in Wiltshire. I support families on their autism journey from assessment, identification, advocating for school adjustments, advising on parenting approaches and supporting the emotional literacy of autistic children. I also offer training to schools. Working alongside families on their journey is an absolute privilege. Every child I meet teaches me something new. Autism is my special interest and I am passionate about my role.

Jodie

jodie.smitten@behaviourservices.co.uk

https://m.facebook.com/Childrens-Behaviour-Support-Wiltshire-606003673066792/?ref=bookmarks

A different type of parenting

A special guest post:

I wrote this earlier this year as part of our parental views for the EHCP applications and wanted to share it with you in the hope it helps you feel understood...none of us are alone in this even though it can sometimes feel that way ❤️

Parenting children who have special needs requires an almost super human love, where our expectations as parents are set aside and the needs of our children met first. Unless you have the privilege of raising a child with special needs, you simply can’t understand. Their daily struggle and yours is brutal. It is impossible to imagine the work and exhaustion of exhibiting patience, discipline and love while your child shows you extremely challenging behaviour day after day without any hope of them ‘growing out of it’ or it being ‘a phase’.

Our wonderful children are not average children with standard needs. They are special children with special and specific needs.

Our children have become tools of refinement in our lives. They struggle. This means our family struggles. There are marital arguments surrounding their little lives. Worry, anxiety and anger stem from their existence and secondary trauma is present in our home.

Love also comes in Tsunamis! Through the challenges it persists because love is a choice. We choose to love our children and raise them the best that we know how, but it doesn’t negate the pain that also marinates within.

It is hard to understand what it is like to ache for your child to be ‘normal’ to want them to have real friendships. We always anticipated our home would be filled with lots of friends and lots of happy family gatherings, meals around the table filled with laughter. It’s so hard when you don’t see your child connecting with others and are forced to live in isolation and segregation.

Unless you are raising a child with special needs, you don’t know what it is like to take everything you thought you knew about parenting and throw it out the window. Wondering what you are doing wrong and why nothing is working.

Standard parenting strategies do not work with our children. Our children don’t respond to time out or to typical consequences and rewards do little to help improvement. New strategies are needed, and they are hard to discover and even harder to implement as a united front day after day. There is a lot of trial and error. Failed attempts; defeat is a reality. Yet determination and love persist.

Unless you are raising a child with special needs, you don’t know what it is like to yearn for ‘normal’.

You don’t know what it like to wish your child could cope with being at a birthday party or play date, brownies, football, ballet or a playgroup without causing destruction in their wake.

There is a longing to be able to go for the day out or for a meal without anticipating a meltdown. The crowds will be too much? They will get overwhelmed or over stimulated? They are going to lose it? We must try to remind each other that restraint trumps exasperation and their brains don’t process the like other children’s brains. Their behaviors are messages from their brains, which are totally beyond their control.

Unless you are raising a child with special needs, you don’t know what it’s like to try everything - huge efforts and sacrifices, constantly wondering will anything make a difference?

The endless appointments with Doctors, Therapists, Social Workers, and Specialists are daunting. Will anyone give us tools to help our children? Is the therapy making an impact? Do we have to medicate our child? The constant questions, which bombard us daily and remain unanswered, are a constant worry.

Whether your child has Attachment Disorder, ADHD, PDA, FASD, SPD, ASD or any other diagnosis, as a parent of a child with special needs you live in a constant state of hyper vigilance and anxiety, risk assessing every waking moment of every singe day in an attempt to keep everyone safe.

We constantly question whether we are too strict or not strict enough. Are we being as therapeutic as we can be, are we good enough for them?
We love them so much so we just keep going.

The public meltdowns are horrific and the looks of disapproval are heart breaking but we have got to the point that we don’t care what others think now (well most of the time!). They don’t understand the pressure you are under every single day raising a child with special needs.

It has changed us. It has changed our family. Honestly there are momentary desires to escape - of course we never would, but the day in and day out is overwhelming an often we wonder how we will we physically and mentally carry on doing this for the rest of our lives? Will we survive this as a family of four? The guilt these feelings bring is haunting and unless you are raising a child with special needs, you could not imagine the determination it takes to start all over again every day but amazingly each day it comes. We to choose kindness when we are filled with anger, joy when we are feeling defeated, and hope when we can’t see the light at the end of the tunnel.

It is our privilege to be raising two amazing humans. We will persist. Defeat isn’t an option. Hope abounds. Love will triumph.

We fully accept we cannot reverse the organic brain damage and the early life trauma our beautiful little girl, suffers due to maternal alcohol and drug use. We cannot change her genetic make up and the conditions which may have passed to her from the people who created her.

We also accept we cannot chance the huge Attachment trauma our amazing little boy endures and that makes the world such a difficult place for him. He is constantly in flight, flight and freeze modes. To watch our little boy overwhelmed by a need to be in control of everything and everyone at all times is devastating. At three years old when most children are really only thinking about themselves and their needs his little body is flooded with cortisol making him hyper vigilant and full of anxiety.

We can do all that is humanly possible to give them an environment in which they can grow and learn. An environment where they feel safe, valued and accepted. We cherish them and celebrate them - our very special children deserve nothing less.

Your kindness and acceptance goes an awfully long way so we want to say a huge thanks to our dearest friends and family the people who support us, accept us and love us just the way we are! 

Issey Davis

The A Word

A guest blog post by Joe James

'Autism – a lifelong, developmental disability that affects how a person communicates and relates to other people and how they experience the world around them' (The National autistic society)

Where do I begin?

Well for a start I completely and utterly disagree with this statement. In fact I disagree with it so strongly that I wrote a letter of complaint to the NAS about how their generalisation of an Autistic individual is not only insulting, but damaging to us. They wrote back (Eventually) apologising but refusing to change it on the grounds that people need it to be classed as a disability so they can claim help from the government and possibly support payments. Where I agree that many people on the spectrum do need additional support, not all do and therefore it should not be classed as a disability. It should be classed as a different ability that comes with its own set of challenges. Life is a challenge for most people if not all people. But we don’t class everyone as being the same ability wise, so why class all Autistics the same? It’s just wrong in my opinion. We should be given the rights as a minority within the workplace instead.

This is why it’s bad. Imagine you are going for a job. You have a degree that you worked tirelessly for. It was so hard getting through the educational system because of how you were treated. You fought for your rights to be treated equally and you never gave up. You may not have been particularly social, but you studied and excelled at your subject, which is the only thing that should matter. You are smart, very smart. You know that given the right opportunity you will prove your worth and show your employer that not only can you do the job they require of you, but due to the way you can hyper focus and micro analyse, you will most likely do the job better than the average person. You do well in your interview. It was a little awkward at times (or it was in your head) but overall the interviewer was smiling and seemed pleased with your credentials and knowledge about the potential job. You masked brilliantly and though it was difficult, you did a great job. You go home full of hope and eagerly anticipating a phone call to confirm your new employment.

After you leave, the interviewer looks again over your resume. She notices that under disabilities you have written N/A (non applicable) she then looks under your set of skills. You have written Autistic, then listed all the reasons why that is a skill. She then googles the words, What is Autism? She is directed to the NAS website with the above statement staring her blankly in the face. This is a stumbling point for her. She thinks that perhaps you have made a mistake. She feels for you but knows that hiring a disabled person comes with issues. It shouldn’t, but realistically it does. She already has several disabled people working for her. She then looks through other resumes and decides to go with someone else. She really liked you, but autism is complicated and she doesn’t need that right now. She is torn up about it, but that doesn’t help you.

This is the reality of the situation that many autistic adults find themselves in. They are genuinely worried about telling a potential employer that they are Autistic. This is so wrong, they should be excited at the thought of having someone in their ranks that can think outside the box. A brilliant problem solver or a vigilant eye for details that others miss. It would be an asset to have someone with a brain like Einstein, Darwin, Jobs, Newton and Tesla. But no, we are ALL disabled and are defined by our communication skills, not our amazing brains and extraordinary abilities.

This is how I think now, but like many people, 7 years ago I didn’t know or care about autism. To me it was kids sitting in a room, having crazy temper tantrums and smashing things. It was weird people that couldn’t look you in the eye and moved around strangely. It was non verbal children that couldn’t tell their parents they loved them. I felt sorry for them, I felt even more sorry for their parents. I couldn’t see past what the medical profession and the media portrayed. I was convinced that autism was a disorder or disability and no one would change my mind. How narrow minded and wrong I was.

6 years ago things changed. My wife and I were watching a TV show. There was a little boy and he was being diagnosed with Aspergers. The show was all about whether a child was born with difficulties or whether it was down to their upbringing. In was obvious to me that the child was born like this and it turned out to be the case. Sylvia pointed out during the show that the boy was just like me. I have told Sylvia many stories of my troubled childhood and the difficulties I had making and keeping friends. She had lived with me and known me since I was 18 and we had struggled socially due to my outspoken behaviour and honest evaluation of people. I am highly intelligent and had always put my problems down to this fact. I had never thought that I was disabled. I likened myself to Sherlock Holmes or Gregory House and sometimes Sheldon Cooper. These fictional characters where all highly intelligent people who struggled socially and their struggles resonated with me. I looked at Sylvia like she had insulted me. “I don’t have Aspergers” I said. “Well rewind it and watch it again, listen to the kid described his life and his friendships at school. Watch him play with his Lego and monologue about why he likes it. That’s what you do when you are obsessed with something” she said. I rolled my eyes, but played along with her silly nonsense. I watched carefully and with a new perspective and what I saw changed my life forever. She was right, that little boy was me. It was suddenly like watching a movie about myself, but he had nice parents. Tears welled up in my eyes and memories flooded back of terrible days at school and being ostracized and bullied. Kids not wanting to play with me and friends betraying me to be popular. It was like a light had been switched on in my head and my whole life suddenly made sense. All this time, all those struggles and confusion. Why I never fit in, why I lost my temper so easily some times, why people didn’t understand where I was coming from and why I was so obsessed with things that I became interested in. Of course I saw it as a negative, but also as a relief. I finally could explain to People why I acted the way I did. There was something wrong with me, it wasn’t my fault.

Months later I was diagnosed officially and started telling everyone I knew that I had Aspergers and that is why I was so annoying. They said things like “I always knew there was something wrong with you" or “I don’t think you do have it, as you can talk fine”. “You don’t look disabled” was my least favourite. But I just accepted this and almost apologised for being broken. I, like many other Autistics, saw it as something that I had, like a disease or condition. At one point when I was studying Autism I had an identity crises, where I couldn’t separate my autism from myself. I didn’t know what part of me was my autism and what part was Joe. How could something that I have, be so entangled and embedded to who I was. I went through a stage when I just said “I’m not going to be Autistic anymore” like it was something I could leave by the door when I went out. I denied it and I hated it. I saw it as the cause of all my problems and the reason I had no friends. For years I struggled to come to terms with this thing that lived inside me. Making me angry, anxious, depressed, aggressive, over sensitive and easily distracted. I could only see the bad and eventually in 2018 my mental health collapsed and I regressed into full blown depression. I had made a mistake at work and blamed my autism, my work blamed it and I was determined to push it away at all costs. The more I fought it, the more I hated myself. I changed so much about myself that year, many didn’t even recognize the person I had become. I lost allot of weight and looked the best I had ever looked. I worked so hard and my boss was so impressed with me. I really worked on my temper and was so much more relaxed and easy going. I took up photography to help me keep balanced. It seemed to help me keep calm and did make me very happy. But alas, my Autism was still there and still affecting friendships. I wanted to tear it out of my head, I hated autism and that was where I was going wrong. In early 2019 I was seeking professional help through Time to talk. I had called the number but wasn’t even able to leave a message as the in box was full. It seems there are a lot of people needing help and I was just one of them. I continued with my photography and even started posting on Facebook. In 2018 I posted on Instagram, but this only made me upset as I judged every photo by how many likes it got. I became obsessed with it and would often not be able to focus on other things at home because I was constantly checking and refreshing the app. I was hyper focusing on this social and public scrutiny of my work and it made things so much worse. But Facebook (for me) was different. I posted on an amateur photographer group and my first photo was a success. So I posted another and another and before I knew it I was again apologising for being autistic and saying sorry for posting so many photos. That’s when something strange happened. People in the group were nice to me and said they loved my photos. It was then suggested that I post on Memories of Horsham, so I did. They also loved it and I explained I am autistic, so they would be ok with me posting lots of photos. This was hard for me, but things often are, so I just went for it. Of course I received some criticism, but overall the comments were very positive. It was then suggested that I start my own Facebook page so people could see all my photos. I started using the platform to talk about being autistic and all of a sudden I was giving people advice and hope for the future. Just by being me, I helped people. I stopped saying a “had" autism and embraced it as being part of me and not something I have to live with. I saw how being autistic was the reason I could take amazing photos and had learned how to do it so quickly. I was focusing on all the good things being autistic gave to me. Like hyper sensory issues. They were not issues when I was in the countryside surrounded by nature and beauty. They enhanced my experience of the world around me and I could share and explain this to others. I started a group called positively autistic and encouraged others to see the good side of autism. I fought my corner against negative people, stuck in their ways and hoped one day they would see what I saw and loved themselves, autistic brain and all. Because I accepted myself and embraced being autistic, my mental health was manageable and most of the time in a good place.

Being autistic is not a label for me. It is not a definition or a statement. It is who I am and the minority I am part of. It is my tribe, my people and in many cases my friends. It is an enhancement but also a struggle. It is badly underestimated and treated like a disease. It is wrongly depicted and unfairly defined by the medical profession. It is stereotyped and mocked by the media and it is shamefully misunderstood and mistreated within the educational system. It is looked upon as something that is wrong with me and rarely thought of as a benefit to the human race. But without us this world would be a very different and far worse off place. It is not the Autistic people that wage wars over land and greed and power. We are the scientists, the inventors, the experts, the artists, the computer programmers, the musicians and the puzzle solvers. We are the world changers and yet the world won’t change for us. With this in mind, I fully encourage those of you who agree with me, to write your own email to the NAS and demand they change their definition of what we are, considering we never gave our consent to this misrepresentation, because we were never asked or consulted. The only people that can define Autism is autistic people. That is our right, but we have been robbed of it.

My final thought is this. Many autistic people are trapped. Trapped inside their exceptional minds, unable to communicate, unable to function without assistance. They are lost and it pains me to be so helpless and unable to find them. But so many, in fact the majority of us are not lost, we are just very alone and if you can, please guide us. Sylvia was and still is my lighthouse. She guides me everyday to the safety of the shore. Sherlock needed Watson and House needed Wilson. Every Neuro diverse person needs a Neuro typical by their side. But every Neuro typical benefits from an autistic person who has reached their potential. It’s a symbiotic relationship between people who are very different but deep down, just the same. Be kind and love yourself. Being autistic is who we are, embrace it and you will be free to become the person you were destined to be.

Thank you for your time. 

Joe James

https://www.facebook.com/JoeJamesNeurodiversityawareness/

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 so much and thanks for asking to interview me about neuroception. 

Libby Hill: Thank you for accepting! My first question for you relates to the term neuroception. Can you explain what neuroception means?

Jessica Matthews: Neuroception is a term that was coined by Dr Stephen Porges to describe how our autonomic nervous systems take in information through our senses, without involving the thinking part of the brain.  Neuroception is the process of ‘coding’ the information we receive as safe, dangerous or life threatening. This then determines our autonomic state.  Our neuroception assesses information inside our body, outside in the environment and between us, in our relationships (Dana, 2018).  

Neuroception is informed by our 8 sensory systems.  Our 5 basic sensory systems are; visual, auditory, olfactory (smell), gustatory (taste) and our tactile system. The 3 other sensory systems are our vestibular system, our proprioception and interoception. Sensory hyper sensitivities or hypo sensitivities will therefore impact our neuroceptive system too.  For some of us, differences in sensory processing, mean that we don’t always feel safe in our bodies.  Our ‘felt sense' of danger can be very powerful and overwhelming at times, or it can be chaotic, difficult to specify, as well as to describe. Felt sense is our internal bodily awareness, made up of micro sensory experiences that we feel inside our body. 

When Dr Porges describes neuroception, he explains that “if our neural circuits perceive a threat; the principal human defence strategies are triggered” (Porges, 2004). Neuroception is one part of the Polyvagal Theory, which has transformed the way we understand the autonomic nervous system. Polyvagal Theory explains that there are three distinct circuits which make up our autonomic nervous system. These circuits are arranged in a hierarchy and so we move through each in sequence. 

The newest circuit, exclusive to mammals, is characterised by connection.  It is often referred to as our safe and social state because it fosters safety, social engagement and playfulness. Our safe and social state is supported by warm facial expressions and vocalisations that are melodic or have a soothing rhythm.  Vocalisations that support cues of safety, also have a particular frequency.  I noticed when my son was a baby, that he responded fearfully to stimuli such as deep laughs, thunder and certain tones of voice, something he remains attuned to now.  Dr Porges refers to these as “lower pitch sounds” which finely tuned neuroceptive systems are biased towards “in order to detect the movements of a predator” (Porges, 2017).

The second state is characterised by mobilisation and is known as fight or flight. The third and oldest state, is characterised by immobilisation and is known as shutdown.  We can liken this to the turtle who retreats into his shell for safety. 

Moving between autonomic states is something we all do in small ways throughout the day, in response to everyday life.  For some though, the movements between states are “more extreme and impact our moment to moment capacity for regulation and relationships” (Dana, 2018).

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

Jessica Matthews:  I think the way we frame neuroception, fundamentally shapes our approach.  If we categorise particular variations in neuroception as ‘faulty’, we align with a medical model.  Because this feels incongruent for me, in my article last year I used the term ‘highly sensitive neuroception’ when exploring this in relation to PDA (Pathological Demand Avoidance).  Others have also moved away from the term faulty neuroception.  Deb Dana uses the term ‘highly tuned surveillance system’ and Tracey Farrell recently proposed the term ‘finely tuned neuroception’. These references to ‘tuning’ are really helpful, because our nervous systems are tuned according to the experiences we have.  I also appreciate how this terminology respects the way our nervous systems safeguard us, exactly as we need them to, according to our individual differences and social contexts.

Published research into PDA so far, has considered the cognitive and behavioural components of PDA, but as yet has not explored the physiological components.  I am interested in all perspectives of PDA, but I am particularly curious about the neurobiological mechanisms, and the role we can play as parents, educators and therapists to support the physiology of our children’s nervous systems.  I wonder whether the somatic (bodily) experience of feeling unsafe, arising from sensory processing differences, contributes to the PDA individual’s highly tuned surveillance system. It is difficult to know the PDA nervous system, and not to question whether some of its longer-lasting mobility and immobility, may arise from sensory trauma and demand trauma, from living in a non-accommodating and demanding world, that is not built for neurodivergent needs.

As parents, deepening our understanding about neuroception, and the 8 sensory systems, whilst becoming polyvagal informed, has really supported us to understand the individual cues of safety or danger that our son experiences, specific to his neurology.  Reflecting on neuroception in the context of my own and my son’s sensory processing systems, has been really important. Making changes to our environment and lifestyle, building in personalised sensory diets and a range of individually tailored supports, has also been really helpful. We prioritise play in calm and low arousal environments and have seen how making meaningful changes to this time with our son, really helps to support him.  Play is described by Dr Porges as a ‘neural exercise’ that fosters the co-regulation of physiological state and supports physical and emotional wellbeing (Porges, 2017).  

Organically, over time, we have also significantly modified our approach to parenting.  We have rejected our western society’s preoccupation with normalisation and ‘fitting in’ and carved out a different path. I have been squeezed through, and indeed tried to squeeze myself through, enough normalising pipelines to know the harm such approaches can cause to the mental health and well-being of the neurodivergent mind and body. Adapting our mindset has been a really critical aspect of how we have become more able to support our son’s finely tuned neuroception. 

All too often our children’s adaptive behaviour is misinterpreted and responded to as intentional misbehaviour (Delahooke, 2019). Through a Polyvagal lens, we can challenge these misconceptions and gain a deeper insight into the neurobiological basis of our children’s behaviour.  Deb Dana’s work supports us to understand that “from a state of protection; mobilisation or disconnection, survival is the only goal” and the door to connection becomes temporarily closed.  Whereas “from a state of connection; health, growth and restoration are possible” (Dana, 2018).  

When we think about Autistic children who have a PDA profile, it is so important to understand the adaptive nature of their responses and to recognise whether they are in a state of connection, mobilisation or disconnection. Doing this not only destigmatises behavioural responses, but it also gives us the information we need, to respond in the most helpful way.  We have observed how demand stimuli, becomes less threatening for our son, when he is truly in connection with us, within a context that is shaped by mutuality, reciprocity and equal respect for adults and children’s autonomy and freedom.

Deb Dana helps us to understand The Polyvagal Theory and the hierarchy of our autonomic nervous systems in the form of a ladder.  Thanks to Justin Sunseri, for his creation of this visual, based on the work of Deb Dana and Stephen Porges, which I include here to support this discussion, with his kind permission.

At the top of the Polyvagal ladder is our safe and social state (ventral vagal).  Here, so much more is possible and we feel safe, connected, calm and grounded.  In our safe and social state, we are able to enjoy time alone, or with family, friends, pets, passions and nature, within which everyone needs a different balance between solitude and social engagement with other human beings.  Becoming more attuned to where we are and where our son is on the Polyvagal ladder, at any given time, has been so helpful.  

When our son shifts down the ladder into flight or fight (sympathetic) we see and indeed I feel him disconnect, albeit temporarily.  At these times others might make numerous subjective, and mismatched assessments about my son’s presentation and how I ‘should’ respond. These ‘shoulds’ rarely appreciate the impact our autonomic state has on behaviour, and how children’s responses relate to how safe or unsafe they are feeling at that moment.

In flight or fight, the world feels dangerous, chaotic and even painful.  In this state we are mobilised, agitated and unable to settle into stillness.  If it is not possible for us to flee or fight, our neuroception of threat will drop us further down the Polyvagal ladder into ‘freeze’.  Freeze is a mixed state, where the body becomes really still and fight or flight is essentially ‘on pause’.  

‘Fawn’ is also a mixed state, not shown on the visual.  It is also made up of sympathetic energy and shutdown (dorsal vagal).  Fawning (Walker, 2013) is an uncharacteristic mode of "people pleasing" or deferring to the needs and wishes of others, whilst surrendering one's own, in order to feel safer.

Our neuroception is constantly risk-assessing and from each state will either move us back up the ladder, or drop us down.  At the bottom of the ladder we have the protective state of shutdown. When our son is in shutdown, we see that he is unable to respond, and sometimes even hear us.  He is certainly unable to process any more input.  Essentially, his nervous system has now formed a cocoon, enveloping him from the danger he neurocepts. This third and oldest state, is characterised by dissociation, immobility and collapse, otherwise known as ‘flop or faint’.  

As parents, before we made considerable Polyvagal informed changes to our parenting and lifestyle, we felt more frequently challenged by our son’s responses to everyday demands. This meant that we were not responding in the most helpful ways.  Learning how to recognise the physiological signs of being in a state of connection, mobilisation or immobilisation and how to map out what is happening in our son’s nervous system, as well as our own, really changed our perspective.

Our responsibility to be regulated as caregivers, educators and therapists, is a critical one. Our nervous system state and the way it communicates with another person’s nervous system is powerful. For neurodivergent children, the world can be a very demanding and overwhelming place, so we need to be able to open our hearts and arms a little wider.  The science of Polyvagal Theory shows how connection, loving presence, warm smiles, gentle eyes, facial expressions and prosody of voice, are all key safety cues. 

Whilst we know that the language we use with our children is incredibly important, it is not just about what we say or the tone we use, it is also about how and what our nervous systems are communicating.  We can’t ‘fake’ safety cues, it isn’t enough to ‘act’ calmly, we have to actually be regulated ourselves. We can’t kid the nervous system. 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 and any incongruence stays with them, just as it does for adults. 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 and as a parent who has felt under the spotlight, I get just how important it is to know this.  It really helps when we can be compassionate with ourselves. Being kind to ourselves is important for us as human beings, as well as for our parenting. Self-compassion also supports us to tune back in, to resettle before we regroup and repair. I think it’s also important to know that our children would not benefit from having robotic parents, who appeared to glide through the day, untouched by humanity.  We all lose our calm at times, I know I do, and so it helps to remember that when we go back to our children after these inevitable encounters, we can repair any relational rupture. We can ensure they know that they are loved unconditionally, no matter what has happened.  When we do this and then hold space with love and compassion, we strengthen their sense of safety and support them to complete their stress cycle.

As adults, we need support too though.  Polyvagal Theory teaches us that connection is a biological imperative and a lifelong human need.  None of us were designed to navigate this world alone, or to parent in it without support. However, in a society 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 who have one, or more than one PDA family member, this can feel particularly challenging, as we are frequently misunderstood and often isolated with the challenges we face. This is where finding a community of supportive adults who really “get it”, is crucial.

The times when our children are struggling the most, are often the times when we feel most scrutinised.  This can also be when we receive an increased volume of ‘well-meaning’ advice.  Many of us will have been told that we need to become stricter as parents, and tighten our boundaries to support our children to ‘fit in’. This not only makes me feel sad about how much others are failing to see and understand, but also sad because these are the narratives that make it more difficult for us to tune into our parental instincts, to our deeper knowing, beneath our conditioning and traditional western parenting.  When we escape the pathology narratives, and the outdated behavioural advice, we become so much freer to understand our children as individuals, to lean into our compassion and to trust our own skills and expertise as parents.  It is often the external pressures and systemic oppression, that make it more challenging for us to facilitate the calm co-regulation our children need so much of.

For Autistic people with a PDA profile, safety is highly contingent on the need to be autonomous and free. Through a Polyvagal lens, we can see that the PDA individual does not choose to avoid everyday demands, rather their nervous system prevents them from being able to meet them.  When we become Polyvagal informed, we can see how, via neuroception, demands are often ‘coded’ as threats. I understand PDA as a protective response system, that defends the individual’s need for autonomy and freedom.  I also see that being PDA, is part of being Autistic. Being Autistic is characterised by Dr Nick Walker as a subjective experience that is more intense and chaotic than that of non-autistic individuals, where the impact of each bit of information tends to be both stronger and less predictable” (Walker, 2015).  Understanding this, makes it much easier to understand how anxious, fearful and overwhelmed PDA individuals feel, a lot of the time. It also becomes easier to appreciate how, when meaningful environmental and relational adaptations are made, within a framework of deep understanding, that this very same group is able to thrive and achieve amazing things.  With this, the many strengths and the individual identity of Autistic people with a PDA profile, can be fully seen and known.

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 compliance is the goal and children’s neurological needs are not fully understood, honoured and supported, their nervous systems will trigger one of the defence strategies. This can present as masking or as flight, fight, freeze, fawn or flop.  Having to mask and frequently having defence strategies triggered, has a huge emotional and physiological cost.  When PDA individuals needs are unsupported, their neuroception of threat will increase, which will often send them further down the Polyvagal Ladder.  It is important to know that children’s needs and difficulties are not only overlooked when they mask or fawn, but also when they are sitting quietly in a shutdown state.

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 the evidence base about children’s health and happiness.  Understanding neurodivergent identity is about being attuned to, and nurturing children’s individual neurological needs and wellbeing; to support their lifelong physical and mental health.   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.  Some people know that I’ve been working on a larger piece of work for some time now and I was so pleased when Jessica Kingsley offered me a contract to publish this.  The book will share the parenting approach that we have organically developed through a polyvagal lens, within a neurodiversity framework and with a continually growing understanding of our son’s and each other’s needs. Our Polyvagal Informed Parenting approach has helped us to support our son to feel safer in this demanding world. The book will provide an understanding of the autonomic nervous system, an accessible overview of Polyvagal Theory and a working understanding of how we offer, what I call the Polyvagal Informed Core Conditions (PICCs) across different aspects of our parenting.  I hope that the book will be 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.

To hear more from Jessica Matthews, you can follow her on Facebook:

https://www.facebook.com/ChangingTheNarrativeAboutAutismAndPDA/

References

Dana, D. (2018) The Polyvagal Theory In Therapy: Engaging the Rhythm of Regulation. New York: W. W. Norton & Company.

Delahooke, M. (2019) Beyond Behaviours: Using Brain Science and Compassion To Understand and Solve Children’s Behavioural Challenges. PESI Publishing & Media.

Porges, S. W. (2004). Neuroception: A Subconscious System for Detecting Threat and Safety. Zero to Three 24 (5): 19–24.

Porges, S. (2017) The Pocket Guide To The Polyvagal Theory: The Transformative Power of Feeling Safe. New York: W. W. Norton & Company.

Walker, N. (2015). The Real Experts: Readings for Parents of Autistic Children. Autonomous Press.

Walker, P. (2013). Complex PTSD: From Surviving To Thriving. CreateSpace: Independent Publishing Platform.