None are the same and it’s not a question of less or more

Around the tracks of autism communities you come across lots of different terms and phrases, there are many of them. Acronyms, slogans, hash tags, and others. It’s really easy to get to a point of reeling them off without any real unpacking of what they mean.

A great example of this is ABA. It has become synonymous with any early interventionist therapy for autism. This is so very far from the truth and there are a bunch of reasons why it has to this point that are not the focus of this post, suffice it to say it helps no one when the situation is that people are thinking they are saying one thing when they are saying something completely different.

Speaking of different, there is another phrase, it was coined, I believe, by Temple Grandin, and it goes “different not less” it is often used as a hash tag and a rallying cry for autistic people and their allies and families. What does it mean, do people just use it because it sounds good or is there something more to is?

Three little words. Different not Less. so simple yet so much more than simple. When I think about this I realise just how important and powerful this little phrase or hashtag really is.

Supremely powerful. Subversive. Counter cultural. So many things that run contrary to the so-called accepted wisdom of the western world in which we live. This western world the envy of all time, the so-called pinnacle of human existence. This pinnacle which does not in fact celebrate difference and diversity but works to strangle it and force us to live a life of homogenous existence our neighbours and friends.

Different not Less. Simple yet rich with power and meaning. What does it mean for a person to own this phrase, to take it on themselves as a moniker that goes someway to explaining their way of being?

Different.

I don’t accept that I am just like everyone else. I am claiming that I have a difference of neurology. That I am not “normal” whatever the heck normal means anyway. Normal is a statistical term why do we apply it to human ways of being. Really.

Different.

Let’s be honest we are all different. Difference abounds not just in neurology but in every aspect and facet of life. Different genders, different shapes, sizes, heights. Different skin tones, Different facial features. Different in our intellectual capacities, our physical capacities.

Different.

Yes. Every. Single. Person. Is. Different.

Different.

It’s an affirmation of the simple truth that is the reality of humanity.

Not.

Just that small little word making the negative comparison.

Doesn’t equal.

Isn’t.

Does not compute to.

Not equivalent.

Not.

Won’t be categorised.

Less.

Must be tied to the Not part.

Less.

Lower than.

Below.

Under valued.

Disregarded.

expendable.

Less.

Fewer.

Minimised.

deficit.

Different Not Less.

Powerful. when all put together. I am Different Not Less. But.

Aren’t we all. Is this not a moniker every one should claim. Is this not something we should all aspire to?

Different Not Less.

I am different not less. Are you?

I am different not less as an Autistic man, what about you?

Many could say I am different not less as a neurotypical man what about you?

Yes.

Different Not Less I am. I will not be lumped, labelled and thrown into a box of mediocrity and half arsed categorisation. I will not conform to that.

I am Different Not Less! I am in fact Never Less Than Everything!

How about you?

The Kool-Aid’s Flowing

Medical diagnoses are ripe for conspiracy theorists and other out there claims to be made. In the autism world there are a couple of ripe theories that seem to be so pervasive that it doesn’t matter how much real science is presented its true believers are, well, true believers.

The kool-aid really is flowing freely.

Yes it’s flowing so much in public now that a potential US Presidential candidate declares aloud publicly that he believes vaccines cause autism. That this has been debunked by real science again and again seems to be beyond the understanding of the man.

It would be easy to dismiss him as just another hopeful presidential candidate whose a slightly unhinged, but when it is a man who is one of the wealthiest in the world and seemingly has a strong backing from conservative and tea party types then one has to stop to ponder.

It’s not just Mr Trump of course who has swallowed the Kool-aid either.

A few months ago Robert Kennedy sprouted the same sort of thing and to that end called autism not just the usual emotive epidemic but invoked the language of holocaust.

Of course the Autism Speaks rhetoric can’t be overlooked. They speak of a generation of lost locked away children. They have only recently declared support for the science dismissing the vaccination link. One wonders if publicly that is their stance but behind closed doors along with their pointless search for a cure is a belief that vaccines really are the culprit.

The drastic consequence of these high-profile types propounding such rubbish is it makes it easier for the average mum and dad to draw the conclusion. And of course when that is the case there is a range of differing rationales that are offered for this belief.

Perhaps the most difficult and dangerous of these rationales is the one that goes something like ‘well I accept the science that mostly vaccines don’t cause autism, but in my case I saw my child experience x y and z after they had their MMR vaccine and they didn’t do this before hand.”

This is difficult as it is wrapped very much up in a strong emotional belief that the parent saw what they believed to be a “normal” developing child change into an “abnormal” one. It’s very difficult to counter this belief. And I get this, but counter it we must. The very future of autistic people is dependent on it.

The Kool-aid is flowing when it comes to autism especially and it is dangerous.

It’s dangerous because it encourages people to disregard the real scientific research. To declare themselves more qualified than the scientists who have worked years at the highest levels to hone their skills and knowledge. To declare with passion and impunity across social media and the internet in general that vaccines cause autism, that the vaccine injury courts are paying out for autism caused by vaccinations. It’s dangerous because it malign actually autistic people as less than normal, as undesirable, as injured and sick.

It’s also dangerous because it promotes the falsity that vaccines are ineffective and dangerous and that it should be all about the parents choice. It promotes also an idea out there that it is more desirable for your child to have preventable diseases that could have fatal consequences than to, shock horror, be autistic.

The Kool-aid is flowing, it is dangerous.

Already have been outbreaks of preventable communicable diseases such as measles. Herd immunity is at risk. This means all our children are at risk. And why? Fear. Irrational fear of autism.

Autism is nothing to be feared. It is just neurological difference.

Autistics are not to be feared we are just neurological different. We still feel, love, fear, play, read, write, dream and hope.

Yes the kook-aid is flowing and it’s time to turn off the tap.

It’s A Unity Thing

In my posts over the last months I have written on a range of stuff with some recurring themes. One of those themes has been unity. Unity I am talking about here is unity between the key factions or strands of the Autism/Autistic community. This is a really important thing if we are to see human rights upheld for autistic people.

If there is to be a thriving accepted autistic community then there must be unity between autistic adults and autism parents and allies. Unity does not mean blindness to the differences between different groups but an acknowledgement of difference and a commitment to work through it.

There will always be tension between autistic adults and autism parents. The protection and advocacy of each move from different points of genesis. It goes without saying that each will come from a unique position of their own lived experiences or an understanding of the lived experiences of their children. This does not have to be an impasse.

Listening must be done. Genuine listening, listening that has at its core a willingness to change an opinion or belief when convinced by an other, when new information demands that the currently held position can no longer be held. This goes for Autistics and Autism parents alike. To not approach it like this is really not listening but simply hearing.

The opportunity to put my money where my mouth is, as the saying goes, has arisen. I have been privileged to post a couple of guest posts on the Never Less Than Everything blog in recent months, and have teamed up with the owner Tricia to work on a joint project of video and pod casts discussing autism issues. Our collaboration has been very positive and we continue to pursue that project with excitement and passion.

Additionally after much discussion with Tricia we have together to join together Never Less Than Everything and Proud Autistic Living together under the banner of Never Less Than Everything. We hope to bring this blog to be a strong voice of advocacy and support for the autism parent community and the autistic adult community.

This post then serves as an announcement that posts will now be posted over at Never Less Than Everything. This blog will remain here for legacy purpsoses but will not be added to. All posts have in fact been imported to Never Less Than Everything and are available there. I hope you will join us in the journey to unity and autism accaptance and inclusion.

The Returns

Somewhere along the journey I have picked up the saying of “All roads lead to Rome”. I can’t say where I picked it from or what it’s origin is. I could track it down but it doesn’t seem important really. The reality is though that they don’t. They don’t at all. Roads lead everywhere. Where we expect them to and where we don’t expect them to.

Sometimes they take us in circles, sometimes they meander and sometimes they are straight direct and to the heart.

Sometimes they even lead us an unexpected return journey that has a potency that was never expected. An impact that is as unforeseen as it is powerful. One can never know when that will happen and why. It can’t be predicted, it can’t be relied on but when it hits it is something incredible.

I have had a couple of such return trips like this in the last week. The first I wrote about the other day when I revisited a place I lived when I was 4–5 and walked on places I hadn’t for 40 years. A very powerful moment.

Recently I wrote called merry-go-round or similar. I talked about an experience of a merry-go-round that was in a playground at the scout hall I attended back in the early 1980’s. I had the opportunity on Thursday of revisiting that place, physically. I found it quite quickly but alas the merry-go-round not there, but yet, it is. The playground has been rebuilt with nice new equipment and soft fall and all that. Yet that merry-go-round still sits in that spot spinning it’s experiences in my heart and soul.

I sat at the edge of that playground, quite overcome. Sitting there in a sense between two parallel realities, in one I was 45 year old man looking at a kids playground and remembering where things were, yet in another I was again that 13–14 year old teenager spinning around at speed watching the light flicker and flow in the leaves of the gum trees above.

The very gum trees are all still there and laying on some of the new equipment I was transported straight back in the flick of an instant to spinning like crazy around and around. Preparing for the onslaught of the social interaction and communication that was scouts. Hearing the shrieks and shouts of those other boys of the scout troop.

I could almost touch the boyhood uniform, finger the badges on the sleeve that I had earned. It was something amazing, something that speaks of the potency of our memories and our experiences.

I suspect strongly that the laying down of our memories with rich experiences creates powerful internal narratives and beliefs within us. I suspect strongly that they embed into us much about how we travel the world and interact with it, interact with people and view ourselves.

I wonder, and hope that in taking some of these Return trips we can revisit what is laid down and redirect to better narratives and beliefs about ourselves and how we travel forward.

It was a powerful thing to revisit that playground, to re-experience those moments of so long ago and realise that yes I am in fact still here. Still walking the journey, that I am somewhat a different person than I was, way back then and if I am to revisit this place again in another 30 years it will again be a somewhat different person making a somewhat different return trip to experience a somewhat different encounter that is just as powerful, just as necessary and just as much a reality to move through and forward from.

Here’s to return trips, may they be ever potent.

regrounded

Our senses are not just about what we like to eat, fragrances we like or don’t there is far more at play than this. Most of us can name the five senses. But hang on what if I told you there were not five senses but more than five. I’d like to introduce or remind you to the vestibular and the proprioception senses.

Our vestibular is about how we experience balance in our world and the proprioception is about the place of our body in the world. Obviously this is a very simplified explanation but it suffices for this particular post. In order to be really grounded we need all of these senses to be considered. If not we will experience sensory issues and this is particularly an issue for autistic people.

This post is more about a different kind of grounding, an emotional and peaceful connection with the world we inhabit. Just as one needs the physical senses to be in play in order to be grounded and able to be at their best so they need to have internal and intangible grounding in order.

The last week has been a somewhat ungrounding experience. I discovered that my dearly loved grandmother is dying. As she is in another state I felt it pretty darn important to get in the car and see her.

I was majorly ungrounded when I saw her. A shock to my system of experiencing the strong formidable and wonderful grandma who was my safe and loving and caring woman lying in a bed awaiting the shrugging off of her mortal coil was a shocking and destabilising experience.

I was in need of connecting emotionally with some special places. I chose to travel today to the first childhood home I really remember. It has been 40 years since setting foot on this property. It was nothing less than an amazing experience. 40 or so years ago I sat and played on this dirt patch with my bruncle. There I am on the right. You can see joy on my face. My bruncle would soon be lost to me after this moment and traumatic times would ensue.

Closure around this place and what happened there has never been able to occur. Today I visited this place again, I walked this earth. I wandered this property. I looked at these walls, I looked at this exact place. It was a highly charged moment. Tears welled and thoughts roved around my head.

Forty years seem a long time to leave something hanging. I guess in a sense it is. There have been many, many things over the course of living that I have reflected upon and worked through. Yet the loss that occurred at this place was not one of them.

The loss of my bruncle was something I was deeply traumatized by as a child, and something that I had inadvertently taken on some level of responsibility for and certainly was something that supplied a massive level of fear of the same occurring to me as a child.

Something happened in my heart and soul and spirit today as I walked these places. Something changed that realigned, reground my emotional systems. Enabled me to take ownership of some things without them taking ownerships of me.

I was able to take ownership of the truth that yes I am indeed my father’s son. And that means just that, and only that. It does not believe as I have allowed myself to feel that I am the embodiment and repeat of my father. No that is just ludicrous rubbish.

I have in fact received genetic material, mitochondria and chromosomes and other chemicals and genetic material. This has an impact on who I am, obviously from both my mother and my father. An example of this is being autistic. I see this played out in my offspring also.

The point is though it does not mean I will become who he is. It does not mean I must fear that in myself or in my parenting of my children. I have inherited genetic stuff, I have not inherited his choices. I have not inherited his experiences, I have not inherited his consequences.

Yes I am my father’s son. Yes I will make my life and walk onward as his son making his very own way in this big wide world in which I walk.

Wanderings

Wandering around in my head this evening are so many thoughts that compete for my attention. As an Autistic man I sit with logic and emotions battling it out in an age-old battle-royale championship title fight. There is no hint as to who will be victorious. The eventual winner will raise their arm high in victory and strap the title belt around their waist, but yet no hint as to who that will be.

Emotional pain and turmoil rage in a tumult of ups and downs and swings and roundabouts. It is always a joy to return to the familiar sights of my home town Sydney. It is an emotional assault of nostalgia and wonder as memories of past times flood past on the screen of history. And yet, to be here in this place amidst these nostalgic memories on this day at this time and in this situation can’t be separated from the reality of why…

A supremely strong, wonderfully kind and utterly caring example of humanity begins to shrug off their mortal coil and begin their journey onwards. The embodiment of all that is good in humanity, which worked to protect, sustain, encourage and celebrate you begins the assent to what lies ahead. Pain continues to grow and build.

Logic and reason are on the ropes, punch-drunk with days and hours of emotional onslaughts. Seemingly this logic is beyond all chance is that final foray before the end by emotion is imminent…

A long life lived for others…

A joyous imputation of kindness….

A giving to fellow humanity that spreads the world…

This long life can’t go forever and this wonderful example of humanity has enjoyed a long long time and it stands to reason it can’t go on forever. A better life lived would be hard to find and more people helped and touched by this giving of self, would seem impossible too.

The arousal of logic in this battle is just beginning. Reflection of all the wonder provided after being touched by such a person starts to flicker and filter through the grey matter and synapses of the brain.

Strength returns to the arms and fists of the fight of logic. Striking back from against the ropes…

Desperate measures from each opponent rise and fall as foray after foray of logical

thought and reflection and pain and angst of emotional memory and felt realities rise and fall against each other.

So many rounds later, so many times each has the other against the ropes. Many time has each stumbled to their knees or found themselves down for the count seemingly finished.

Yet somehow, each of them, at the very precipice of defeat and destruction rally and counter the other. Still there is no real way of telling who will raise the title above their heads with ecstatic satisfaction.

So many rounds of battle, so many hits, so many dodges and weaves. There were so many times where it looked as though the knockout blow had been delivered.

But no. A moment of clarity. There can be no victor here. There can be no singular defeat of one over the other. It can only be a joint victory or a separation will bring only joint defeat.

Continuing in this vain will merely weaken the self and it’s capacity to continue its own journey. Indeed to follow in the very footsteps of this wonderful human person whose life has given rise to this very battle.

The wanderings continue within my mind, around my head, yet it is clear that my emotions and my logic need not be at war with each other. The victory here is assured. The two stand together interlocked arms raise above their heads the title.

It is not a singular victory but an integrated triumph.

Stumbling, tripping, falling, and all things hard

Content Note — Trauma, Abuse, Abandonement.

Sometimes I stumble sometimes I trip, sometimes I fall and sometimes things are really bloody hard.

Anyone working in mental health will be able to tell you that childhood trauma has significant impact on a person’s life. Significant indeed. In some writings in the past I have hinted at the presence of this in my childhood, but I have not really written specifically about some of the more significant traumatic events present in my childhood. I’d like to share one of these today with you. It’s something that has had a profound impact on my very being. For a change this is not a post about being autistic, or advocating for autism, or drawing attention to terrible treatments.

I had determined to write about this today, but it has just become more pertinent, half an hour ago as I scrolled through my Facebook Newsfeed I see a post from my uncle/brother (the odd reference will become clear). This post has deeply impacted me. It was about my grandmother. She had a fall recently. She appears to have been going down hill since. He writes that he went to see her today and that she was unable to respond to him. I am reeling.

Stumbling, tripping, falling and yes all things are hard at this moment.

Sometime between the age of three and four circumstances transpired that my parents took in a young boy with the intention of adopting him. He was about six months older than I. My parents being my parents meant that what occurred for this little boy was not supportive, safe family life but arguments, harsh punishments, and physical violence. Sometime later, I am not sure exactly but I recall it as sometime around the age of five, it could have been a year or a bit more. I am not sure. The conclusion was reached that this wasn’t working out well at all. My new brother was told he was going on a holiday.

All of us travelled together to the Anglican Church orphanage where this holiday was taking place. I recall vividly standing in the doorway, on the threshold of a double width doorway, smelling the freshly oiled hardwood floors. The view of many other little boys making noise and moving about. Goodbyes were said, back in the car and back home we travelled. It was around a two-hour trip each way.

This was no holiday. My parents had dumped this young boy, who I knew as my brother, whom I loved as my brother was dumped in a local orphanage.

My mother and father contact my grandparents, informed them what they had done. Rightly they were horrified. My grandparents responded by getting themselves to the orphanage and rescuing him. They told my parents what they had done and they were furious. My newly discovered quickly lost brother had spent a single night in this orphanage and was now safe, but certainly confused at my grandparents house.

In time my grandparents would adopt him, he became my uncle. A very bizarre and difficult to fathom bunch of experiences for either myself as a little boy or brother/uncle as a very slightly bigger little boy.

A massive rift was driven between my parents and my grandparents. They did not talk for eighteen months. I was highly traumatized. Nightmares, bedwetting were regular occurrences in my young little life. It was a very difficult time by all accounts that I have heard, but I have no memory of that period really. Well I do, I have memories of moments, but the timelines are all screwed around. My mind has created a timeline that has constructed a timeline of one day dropping my

brother off at the orphanage for his so-called holiday and the very same afternoon arriving at my grandparents home to find my uncle there. This timeframe was in fact one and a half years.

I remember walking through the front door of my grandparents house, walking down the hallway, leaping ecstatically in the discovery that he was there. It was a joyous moment. But, this chain of horrible events in this little boys life was extremely traumatic and extremely impacting on myself.

My parents never got me, they hurt me a lot with their parenting with beatings, verbal horrors isolation and sexual abuse. They never understood me, I can see in hindsight that much of this was due to me being autistic, but also this trauma has clearly had a massive impact on all of that too.

I loved to spend time at my grandparents home. My grandma got me, she protected me where she could, she tried to talk to my parents about me, about how they treated me. She had me stay on many many occasions. My grandma was my one true safe adult of my life. The one constant even if not there all the time, was that one constant safe adult. My grandfather too but he was somewhat aloof, safe for me, but I didn’t know him very well. I loved him very much and was very sad when he died.

My grandma continued to be my safe loving caring person. The one in my life that would speak for me and not against me. She did all she could. She was not perfect, nobody is, but she did all she could for me. She facilitated the ongoing connection between me and my brother now uncle. I believe this action is possibly responsible for me walking this earth still today.

Thank you grandma. Thank you so much. I love you with a fervent intense and inexpressible love.

I am stumbling, tripping and falling. It’s really hard right now. Really bloody hard. My wonderful grandmother lies in her bed in her room in her hostel slipping away. I am stumbling tripping and falling and it is all fucking hard right now.

The below song says something that epitomises my dear dear grandparents

Powerful Narratives

There is a basic structure to a narrative. You have some characters, a setting, a situation and a resolution to the situation. That’s a pretty basic, well let’s be honest very basic structure of a narrative. But essentially that’s how it works. The trick is to

weave a wonderful, entertaining, interesting and plausible story around that basic structure. A trick that some are masterful at and most of us plainly suck at it. Narrative is present in so many aspects of our lives that we kind of forget it’s working.

Obviously we see it in movies, books and video games, but, it’s present in so many aspects of life we just almost look past it so often. There are narratives around workplaces, there are narratives around illness, disorder, health care, elections. Just about any situation we encounter has its own narrative. Unfortunately these narratives are not always positive, it’s not always once upon a time…. and they all lived happily ever after.

It just doesn’t happen that way a lot of the time. Especially when there is money involved.

When it comes to autism there are a number of narratives in play. The dominant one is far less than positive. It is in fact decidedly negative, extremely money driven and very much dangerous to actually autistic people. It thrives in the health care sector, the therapeutic sector, the charity sector and dangerously the pseudoscience conspiracy theory sector. The language is

terrible and the actions taken by people are terrible, and unfortunately the one thing that is most paramount in this is of course money. Money raised, money paid, grants given, votes won.

Yes as they say money talks…

It’s a pretty basic narrative really. It’s not too tricky. It’s not very nuanced even. It’s a simple plot and it is used over and over again:

Autism is bad, Let me fix it, you pay me money, end of story.

The problem of course is it involves real people. Actually Autistic people, their families their friends and others that care for them deeply. These people are damaged and hurt, lives are often put in danger and lives are even lost. It is a terrible way of things, it really is.

All these sectors rely heavily on this narrative. They use language like the autism epidemic, the sharply rising autism problem, locked away children, marriages wrecked, families broken, disease, catastrophe. In some case the language of war is used, with websites called Autism Wars, charities fighting and battling against autism, vaccine injured, vaccine induced. The list goes on and on and it’s all negative and all couched in disaster.

In order to take the next step this has to be the case. If the health care industry are going to provide therapies, if the government are going to win votes, if the charities are going to raise money and if the charlatans are going to sell their poisons then this is all necessary, it is all so necessary so they can be seen to fund research, develop tests, commission research, be seen to be doing things and to sell their snake oil. Without it none of this can happen….

But…

There is another narrative. A better one. A positive one. It doesn’t talk of catastrophe and disease and disorder. It speaks of difference and diversity. It speaks of health and acceptance. It doesn’t rely on millions and billions but on the listening ears of the powers at be to the voices of the most important stakeholders in this whole thing; the actually autistic human persons living it.

It’s the narrative of neurodiversity and it is a powerful life changing narrative. As said it relies on acceptance of people as diverse. All people as diverse. Autistic people as diverse and non autistic people as diverse. Much has been written about it by others better researched and more knowledgeable than I, but at its core it says, that particular neurological conditions are not in fact diseases or disorders but difference. Being autistic, being adhd, schizophrenic or OCD is not disordered but different. Yes it is a condition but it is a condition of being rather than a condition of illness of disorder.

Neurodiversity thrives when all people are accepted for being who they are. Not categorised by their perceived deficits but celebrated regardless, included regardless. Their so-called deficits are supported and accommodated and strengths are enabled to thrive. The neurodiversity paradigm says that every single human person is inherently of value, and entitled to a voice, to self-determination and actualisation. Entitled to be just who they actually are.

Surely this is the way forward. Surely this is the way to stop the snake oil sales. To stop the poison being pushed on desperate parents. To stop the unnecessary research into so-called cures and causes and enable research in how to better support actually autistic people. I for one say it is.

Surely it’s time to change the narrative. Recognise the evil power of the current dominant narrative and silence it. Recognise the health of the neurodiversity narrative and amplify it.

Narrative is powerful, let’s conduct the power to the helpful healthy narrative and insulate against the unhelpful unhealthy narrative.

Emotional Dissonance

Weaving, flowing, soaking and seeping thickly through the room. So present reaching out and touching it is a real possibility. So thick you feel you can cut it with a knife. But it’s not atmosphere. Well, it’s not just atmosphere. Atmosphere is a factor of it but it’s not it. It emanates and radiates around so thinly it seeps into your soul, it soaks into your pores and settles upon you. Yes, atmosphere is a part of it, but it is far more than just atmosphere, far more and far more potent, far more

dangerous, far more satisfying. Far more everything!

Emotional dissonance. Raw emotion, rolling around the room, unable to be filtered, interpreted and shared. Understood correctly. That thickness in the air. That presence, that radiating emanating sense is emotional dissonance. Emotions that are flowing and rolling around the room, expressed by people through their words, body language and facial expressions. It’s think like this because there are autistic people in the room that are struggling to work out what they mean, how they are intended and who they are expressed towards.

A tricky business this emotional stuff is for autistic people. Already is the heightened sensory world and the oftentimes deeply felt empathy in bodily experiences. On top of this is the sense that emotional expression needs to be interpreted. Is easily mistaken. Is it anger or disgust. Is it frustration or fury. Sadness or something else. What’s that look on that face, what does that bodily stance mean?

At times that presence of the emotion is really quite difficult to deal with. As an autistic it is often difficult to ascertain what that emotion being expressed is, especially when expressed in facial expression and tone. It’s really difficult. There is that trying to nut it out as to what that face means. That sense of who is that directed at.

Worries about if I have done something wrong to provoke the expressed emotion that I am struggling to understand. I think

it’s anger, I’m not sure and I don’t know if this is directed to me or directed at someone else in the room. I’m not sure, and I feel very intensely impacted by this emotion and I need to process is and it is really hard because not only is there it is growing and especially if I process it wrong and express that wrong interpretation in the wrong way.

The fierceness and the intensity grows. The disconnect increases, the resultant sensory overwhelm comes into play. What comes next is critical. It is really critical in fact. It’s a question of meltdown or shutdown on one had or circumventing and supporting and explaining on the other. Which way will it go is the vital question.

For me in this situation if the “temperature” of the swirling pot of emotion keeps rising it will be incredibly difficult for me to deal with it in any kind of positive, logical way and I do need my allies to recognise the signs that I am out of my depth. To realise that I need assistance, that I need to be helped to understand, to redirect to move through it without further being triggered further in the situation and lead to an emotional explosion.

That emotional explosion might look like child’s tantrum. I assure you it isn’t. It might look like the child in the shopping centre throwing themselves on the floor because their mum didn’t buy them the chocolate but I assure you that child is in a state of control that I am not. Or it could be an implosion.

An implosion where I shutdown. I curl up and sob, take into my self, my soul my being and just can’t deal. Can’t talk, can’t get

the words out. Rock. Sob. Inconsolable and shut down.

Neither of these are options clearly, are good. The only good outcome here is that those around me are able to tune in with the emotions exuding from me and be able to intervene and redirect me, explain to me what is going on and help me to process it and if it’s me, discuss it and move through it, if it isn’t me allow me to cast it aside knowing I have not missed something and let someone down, upset someone.

This is a personal exploration of the emotional dissonance that I experience and is not meant to be something that is universal to autistics. The most important thing that anyone can understand about us autistics is the fundamental truth that we are all different, just as everyone is different. The way we experience the world can be as different as that of an allistic person and an autistic person. What I do think here is a universal thing though, is the need for those that love and care for us to be tuned in to the emotional and sensory load we are bearing and keep it in mind and try to recognise when they need to intervene and help us and when to leave us deal ourselves. Yes sometimes you will get it wrong, the important thing is, well to me anyway, is that you try.

This emotional stuff is really hard and sometimes I need help.

One Autistics Empathy musings

Empathy, it’s a term that is used a lot in reference to autism and autistic people. It’s used in positive ways, it’s used in negative ways. It’s used to put autistics down and it’s used to categorise autistic people, often in a negative way to explain a

perceived rudeness or arrogance or the like.

Funnily enough this whole empathy idea has only been around for a couple of hundred years really. The term was coined by Rudolph Lotze in 1858 in attempting to explain the greek word empatheia “passion, state of emotion,” from en “in” (see en- (2)) + pathos “feeling” (see pathos ). It is apparent that this was initially used in terms of ascribing feeling and pathos to art and objects.

Obviously it has evolved over time and has taken on a scientific and medical meaning. It is even used in terms of clinical observations and diagnostics in regard to Autism. The medical definition is:

empathy in Medicine

empathy em·pa·thy (ěm’pə-thē)

n.

Direct identification with, understanding of, and vicarious experienceof another person’s situation, feelings, and motives.
The projection of one’s own feelings or emotional state onto an objector animal.

So there it is the definition and something of it’s origins. But that’s not really the focus of this post. It’s just there as a bit of info. The focus of this post is more about my personal experience of empathy.

I have this idea, and it could be rubbish but I have this idea that empathy is tied up in sensory experience, and I think, well from my experience anyway, that this is a factor in our success as autistic people in expressing that empathy. Let me explore that a little bit.

I watch a sad film and it impacts me quite strongly, I blub like a baby with tears rolling down the cheeks and shoulders heaving. It’s an overwhelming feeling. I have entered the world that is portrayed on the screen very deeply and am feeling this story so deeply that I am overwhelmed with an emotional response. Now lot’s of people have a bit of a cry in movies at times, but for me it seems a bit more than that. Stronger or something. It’s a deep and real feeling that is present in me physically. It’s such a deeply felt experience that I am unable to put words to it, even if at times I can see those words on the screen of my inner self.

It’s a bit like when supporters attempt to comfort me and assist me if I am in a shutdown or meltdown situation, or when I am in a state of overload in a public place due to the onslaught of sensory input. There is a rising anxiety and a sense of needing to find safety and refuge and an inability to make the words to express this.

So it makes me wonder if these two things are connected. Or at least the ability to express empathy is connected to that sensory overwhelm experience. Or maybe it’s just the connection of overwhelm that is the key here. I don’t know, I think it’s an interesting thing to think about.

So my experience with empathy is very much not about the ability to feel and to ascribe the feelings and emotions to situations, objects and people. It is in fact a very potent experience. What I do have an issue with is the expression of that empathy, the expression of that potent experience in a manner that is appropriate to the social norms of the world I inhabit.