January 2021 - The Reasons
Mark this golden moment.
We have an upcoming film, based on the best selling book by autistic author Naoki Higashida, called The Reason I Jump, about four non-verbal autistic individuals and their worlds.
It is ground breaking in that for long, people (often parents and professionals) have told us that we are ‘locked in our own world’ as if we are imprisoned.
This will be a liberating insight that will sober those that are drunk on the ideas that non-speaking means having nothing to say.
Whilst the Australian pop star Sia’s upcoming film has received widespread backlash from the autistic community, The Reason I Jump will bring an unmatched authenticity because it is an “immersive cinematic exploration of neuro-diversity" through the experiences of nonspeaking autistic people from around the world.
"The film blends Higashida’s revelatory descriptions of his autism, written when he was just 13, with intimate portraits of five remarkable young people.
It opens a window into an intense and overwhelming, but often joyful, sensory universe.”
Autistic advocate and CEO of autistic-led organisation AIM (Autistic Inclusive Meets) Emma Dalmayne shares this message about the film:
“The film is incredible! I was moved to tears and desolate one moment, and filled with joy the next! It’s a sensory visual and auditory feast, of rich colours, shadows and angles along with a symphony of natural and man made sounds.
"I cannot wait until the film comes out! I believe it will smash public misconceptions of non verbal autistic communicators, and provide much needed education to countries and communities with little or limited knowledge of autism.
"Much needed. I wish Jerry Rothwell every success with it, he’s done amazing work here.”
At the time of going to press, there isn’t a release date, but check Autistic Lincs’ Facebook page for when more news is announced and I will share my thoughts in this paper too in due time.
The world has gone online but this film might be just what we need.
Think back to ‘isolation’ in school, a place you’d go as intended punishment (not always the case if you were me!)
But my point is that we are locked down, locked into our own worlds, microcosms of the wider world at large and this film may well be the golden light to freedom and empowerment.
January 2021 - Because Music Is Not Just For Ambience
Long-time readers may recall the column Do Your Dance, Chloe (September 2, 2018) about the Cupid Shuffle behind the bar at Bentley’s bar in Spalding and the connection to autistic masking.
Well, I’d like to revisit my times dancing at Bentley’s, but with a twist.
I would always order Blue Lagoon and I would engage with so many people yet failing to get numbers, Facebook details, just any sort of... connection.
My body talked for me as I spun and twisted and grooved to the beats and this elicited communication from many, some taking pictures and videos.
I have never seen any of these people since and I would love to remember what it was like to dance…
And I would love YOUR memories of dance…because I do believe we will dance again.
I mean, hell, we can dance now!
We have homemade hubs to lay bare our inhibitions.
So I ask that you share your expressions!
Young Callum wouldn’t talk much at family gatherings and, as a result, I feel like many family members know me as a child but not necessarily as a man.
My languages were poetry and dance and I would
become a wild man.
I remember my father and I in a Peterborough shop and he asked me to do the “sideways moonwalk, Cal!” It’s just some foot movement but my dad seems to love it.
And we recorded a video I called ‘because music is not just for ambience…’
It has thousands of views online.
I don’t mention this to brag; it’s about more than that.
A moment in time, captured with modern technology. A connection between father and son.
I remember my mum and I going to see Billy Elliot Live in the theatre.
‘Billy’ rose from the stage and I was entranced.
It was my 21st birthday.
I admired the rebellious attitude of Billy in the classic dance film.
(I had it on video!)
I loved the relationship between Billy and his teacher.
The rawness and innocence of it deftly shaped part of my childhood.
A connection between mother and son.
But the connections aren’t exclusive to family.
Dance is one of the most powerful non-verbal languages and it empowered me.
So please, share your movement memories.
Nights out, nights in, funny exchanges, family gatherings, whatever it may be!
Because music is not just for ambience... it’s breathing fresh air of flow and releasing it back into a rebellious, wild, innocent, expressive energy ecosystem.
February 2021 - Unity
This Sunday marks Valentine’s Day and with our world separating loved ones, keeping the pressure on those living together as well as fracturing the traditional dating scene of physically meeting people, we need to be diverse in our approach to showing love.
Rainbow Stars , the charity based in Sleaford (above), has revealed news that it will be getting a new sensory room and this is not only a fantastic resource for the local community but a reminder to us all of how to connect with our loved ones.
Not exclusive to autistic people, humans are complex sensory systems feeding and filtering information for us constantly, and yet it seems to only occur to us just how differently we can connect with others when we examine ‘others’ outside of our communication norms.
Gifts to our loved ones this and any other Sunday can be in so many forms.
Senses get overwhelmed and we cope in various ways. From merely covering our nose or ears if we want to protect our sensory systems to giving a tight hug to relieve spatial dysregulation.
With those in your bubble, those physical types of sensory relief and enrichment can still be employed, but for those of us far away from significant others/friends or feeling contained in a bubble fit to burst
under the pressure of COVID news and restrictions, we are primed to invent other ways to express ourselves.
Of course, hugs aren’t permitted between strangers but in this age of social distancing, we have never been closer.
Earphones for a bit of peace and quiet for autistic people are uber-beneficial.
Stim objects to fiddle with during times of anxiety.
Lights for visual delight and calm.
Personally created song playlists, videos and pictures are easily pinged across the universe offer those in need of some refuge and structure in confusing times.
Our love promotes self-love.
Self-love of their autistic being.
Instead of being a ‘problem child,’ we embrace the sensory needs but beyond that, we see the world as it is. A dense sensory canvas for us to paint on. Together.
We should not infantilise or invalidate those that are engaging in the sensory-rich bliss of flapping, squeezing a stress ball or chewing their sleeves, but embrace it.
The effect is unifying.
February 2021 - Australia
Enough has been said about Sia’s film but I wanted to give this more depth.
Sia is Australian and Australia has a place of deep significance within the autistic community and my heart.
Australian-born Judy Singer is recognized as coining the term ‘Neurodiversity’ which can be used to
describe the variety of human brains under which you’d find the autistic identity amongst any other norm-resisting identities.
Australia is a place I’ve wanted to travel to for a long time, before knowing of Judy Singer’s role in our narrative because of a band called Bliss N Eso, a rap group.
Their mix of downright crazy, uplifting and serious moods on songs has always emotionally engaged me.
But they’re a world away and the relationship between Australia and I is so close and yet so far. Akin to the often warring parts of the autistic community with parents and others that don’t have lived experience.
Emotionally, I’m already there. But I want to physically immerse in the culture, just once in my life.
I want to look at the land on which lighthouses of influence like Judy Singer, Donna Williams and Yenn Purkis built a foundation.
I want to know the terrain which cultivates places like Reframing Autism .
And when you think about the history of how Australia kept convicts, thieves and the like that have been rejected or condemned by society, it adds another layer of meaning.
Because when you’re tarred for a crime you haven’t committed, which must have been the case for some of Australia’s past ‘criminals,’ that’s injustice.
And that is a common overlap with the autistic community.
A social crime based on biased circumstantial evidence.
Laws that favour one method of communication over another.
Punished every time an autistic person’s freedom to express their identity gets met with pity, denial and overall ignorance.
The Aborigine’s connection to Australia and indeed those that inherited their earth also bears resemblance to the uprising of the autistic community, taking back control of a story long-told by those who stand on history but forget the roots.
We are the natives.
But there are others here.
And there will others after us. What matters is now.
Let’s keep building on the foundations until we all find a place called home.
February 2021 - Book Of Beginnings
Literary influence has never been so widespread with technology being the crop and current Covid conditions being the fertilizer.
It’s everywhere.
So let’s take advantage of the vast knowledge available to us.
Share the books, E-books and so forth that have captured your imagination.
When it comes to the autistic community or any community, authentic representation is key.
DSM, eat your heart out.
For the uninitiated, that means Diagnostic and Statistical Manual which includes the (very neurotypically biased) description of the autistic identity.
Therefore, I humbly ask that you also share the books, E-books and writers that have helped you embrace and empower the autistic identity, be it a family member, son/daughter or yourself!
In other news, I have recently been talking with the small team of autistic educators, Aucademy, on their Facebook page about Tourette’s, the rural autistic community and my project The 100 Day Community Kit.
This last element of the conversation I had which you can also find on YouTube is particularly pertinent
because of the history I aspire to reclaim.
Autism Speaks is a cure-centric charity I’ve written about before but the stench of eugenics and hate lingers.
Their numerous ‘kits’ are aimed to scare, overwhelm and pathologise autistic people and their loved ones in the 100 days following diagnosis.
The 100 Day Community Kit, however, aims to pull together the resources of
individual communities with an orchestra of voices singing from the hymn sheets of acceptance and empowerment.
It is my desire to put these kits in places that newly diagnosed people can see and absorb so that diagnosis is not treated as a death sentence but as a celebration and often times a reintroduction to your truest self.
Let’s write new beginnings. For the future.
I did this through poetry.
Books take digital and physical form nowadays but stories of life are being told every day.
As one of my all-time favourite songs by Natasha Bedingfield states:
“This is where your book begins.
“The rest is still unwritten.”
March 2021 - Blossoming
World Autism Acceptance Month (April) is coming. What are we doing to celebrate it?Why does it matter?
Paying particular attention to the lockdown drama that has shaken our familiar roots to the core, what is the price paid by autistic people and how do we move into the future?
Lots of autistic people have suffered from having routines broken, from being stuck indoors whilst builders and other workers persist with their work which unwittingly causes sensory hell for them, already suffering from the already seemingly out-of-reach formal diagnosis for life-changing validation.
A story to illustrate this and reaffirm our collective ambitions to empower marginalised groups such as the autistic community, is by Glenn Bartley.
Glenn is a local man, self-diagnosing himself as autistic until the paperwork backs him up, that wanted to share his thoughts and the challenges he has faced during lockdown.
He feels pushed from pillar to post with his GP being powerless to act on Glenn’s behalf due to a delay in the assessor getting the paperwork to them.
Without the results from the previous assessment, the GP cannot sanction another.
This leaves Glenn and likely many others like him feeling stranded on an
island, undefined and unfulfilled. Lincolnshire’s autism diagnostic service is historically slow and lockdown has only made this worse.
Conflating mental health issues with the autistic identity is a fallacy.
Autistic people have such a challenge set for them against the ‘norms’ of society that they often enter into mental health systems
already damaged and ready to hate themselves.
Glenn had his pre-assessment in two-parts, multiple choice answers and a long questionnaire on his history, yet was told he didn’t qualify for diagnosis based purely on the multiple choice, therefore making Glenn feel like he’d wasted his time. He wonders how this
decision can be made without seeing him face-to-face.
The battle is ongoing. Both Glenn and the diagnostic service are in the process of sharpening the tools with which to define themselves. And this was January 2020 before lockdown affected us all so deeply.
We must ask ourselves this fundamentally important question: why get diagnosed?
Because once we understand the impact that a formal diagnosis can have on an ADULT’s life, especially one that has suffered from social isolation due to communication breakdowns amongst other issues that are not their fault, we can begin to understand why it’s so necessary.
Diagnosis is a privilege held captive by official gatekeepers.
Diagnoses can be pathways to fully embracing ourselves though it must be difficult not to feel bitter when an entire system has a history of failing you.
So what we do during World Autism Acceptance Month matters because we have a lot of work to undo what has stigmatised autistic people’s lives.
And yes, it’s April but March is the season that starts Spring,
A time for blossoming, for growth.
March 2021 - New Norms?
What will Autistic Led look like when it comes back to prominence?
Lockdown has taught us a lot. It has called out the dependency we had on ‘the norms’ of life that we have taken for granted.
It has brought to the surface the depths of our otherwise subdued identities.
I believe that we are closer to the autistic community than ever before, with lockdown being the overlap we needed.
Autistic people are like many of us in that they share the anxiety felt when thinking about lockdown lifting.
In fact, autistic people are likely to experience anxiety more intensely, no less this particular situation.
I’m writing about this because it won’t simply be a case of coming back out into the world for everyone.
Coronavirus is an omnipresent threat to our health and our wellbeing with three previous lockdowns to demonstrate this fact, if we are haphazard enough to dash back into life.
Whilst this certainly will be the case for others, Autistic Led, as all businesses/organisations/groups etc, must be prepared to expand its service.
For starters, the Zoom calls in place of the familiar physical groups at Tonic Health, will remain.
They have helped maintain a connection as have other social mediums and this cannot go away in today’s world.
But even when the internet keeps us united, it is not helpful to be complacent about its position in the Autistic Led network.
So this is a little piece I wanted to write, ensuring autistic people (funded or unfunded), that I endeavour to forever keep a broad set of communication connections open as I believe, and have so far found that individualising the way people connect to Autistic Led is very positive.
Facebook has, at the time being, been the hub of Autistic Led and part of my role is disseminating information, reminders, friendly messages across this platform and the many others and for the future, I welcome autistic-led input on how we can further cement our Facebook community and indeed seek new adaptive directions for us.
If I haven’t written this before then this is a first but I consider Autistic Led for autistic people (naturally) and this column (online and offline) to be my pathway to the wider community and I think that’s extremely important.
To really make a tangible difference, you have to take the message outside of your comfort zones. You have to share.
I’d tried a Family And Friends session several months ago via Facebook but to no avail sadly due to technical ineptitude and perhaps not enough interest or time.
The reason for this early disappointment has many layers but I pledge to do more for the wider community (parents, carers, teachers etc) and again I welcome input on how best to do that.
Even if autistic people stay in their homes far surpassing the ‘typical’ person, we must not shame them.
Freedom seems within grasp but one swift leap could end us back where started.
So be mindful of others who may have difficulty getting out the house, even if we do soon return to familiar ground.
This all takes time. It’s not over yet.
March 2021 - An Ode To Allies
Autism Acceptance Month is upcoming but before that, I shift my focus to ‘World Autism Awareness Week.’ It comes on the heels of children going back to school.
I wanted to make an early column on this important, and yet historically dreaded week and month from the autistic perspective, because I wanted to give my readers time to think about something.
Whereas the autistic adult peer support group Autistic Led is deliberately focused on the community, Autistic Lincs is focused more broadly on other voices in the same community – parents, carers, teachers etc.
When people outside of the lived experiences of a community collaborate
authentically with them, they can be seen as ‘allies.’ So let’s share some love for the allies!
Get your comments on those that have helped you to better understand the autistic people close to you. This is open to autistic and neurotypicals alike. There’s enough division between us, let’s choose to unite.
I would personally like to thank my first powerful memory of a teacher in my life; Mrs Sturgeon.
I’ve thanked many people in my life for their influence but it could be said that without this early ‘intervention’ of sorts, I would not have developed in quite the same way.
Mrs Sturgeon is someone I’d love to interview or meet in person if anyone can connect me.
Additionally, the John Fielding School is somewhere I’d love to visit in the same vein as I did with Gosberton House School and because my experiences there were transformative in my personal journey becoming a collective journey.
Finally, I have to unbiasedly thank and recognise the Lincolnshire Free Press for seeing a purpose behind an autistic narrator in Lincolnshire and for bearing with me through the executive functioning issues I struggle with in delivering these very columns!
A small but absolutely appreciated gesture of understanding.
My project 100 Day Community Kit is based partially on the input of allies because I want to recognise the role their voice plays in the empowerment of autistic people.
We cannot change our systems of thinking and
operating without coming out of our comfort zones.
But balance is key.
Remote learning packs for how to increase understanding and acceptance of autistic people is being shared around by the big names in ‘autism charities’ but I’d rather turn my attention to ‘autistic charities/organisations’ and there is a massive difference.
Autism charities are
often not led by autistic people and whilst intentions might be great, the foundation of them is not from an autistically individual base.
This would of course be the opposite to autistically run and sustained charities and organisations such as Autistic Inclusive Meets (AIM) and, if I don’t say so myself, Autistic Led although it sits within the framework set by Tonic Health which is to widely function as a collective rather than specifically focusing on the autistic community.
Indeed, Tonic Health and Autistic Led are proof that allyship can be essential to flourishing.
Food for thought next week, what makes a good ally?
So, next week we’ll focus more on the autistic community but for now, let’s steer the allyship to bright and thriving horizons.
April 2021 - Awareness Is Weak
Recently I attended the LORIC Autism Ideas Symposium which was essentially an online event uniting voices in the autistic community, neurotypical and autistic alike.
This particular event focused on autistic teachers and autistic people transitioning from university to the creative industries. It was a really fascinating insight into people within our county and I am glad it exists as a way to connect us all.
Having an autistic teacher back then would have been a massive inspiration back then and, regarding the transition to the creative industries, this is something I’m obviously interested in.
I hope that my own transition as a creative goes some way to build a local picture of the art scene.
And that leads onto Joey’s Alternative Art Exhibition which is launching this week and I’m excited about it.
Art, whether it’s poetry or painting has always been my outlets for empowering the autistic community and this month is no different.
Yes, month because a week is not long enough (only autistic for a week!?)
There are multiple events and such happening this month that I’d like people to be aware of as really productive ways of bringing acceptance into action; ‘awareness’ is no longer good enough.
April 2021 - Paula
The week of being autistic is over (just kidding)! So last week, it was a concise collection of others’ work and honestly, that won’t ever change as a long-term theme. Because this is bigger than one column. One person.
One week is not enough. One piece of content is not enough.
Generations after us will have all of this information to consume.
That’s probably why I am postponing these columns. They are precious moments in time.
Ordinarily, the lateness of these columns are due to executive functioning difficulties or waiting for something big to comment on (as is often the case, but deadlines…)
But over this month, much like the name of the conference with Aucademy and a whole host of autistic speakers online, Acceptance Matters and I want to get this right.
It’s the 10th year of Autism Acceptance Day/Month being created by autistic writer and blogger Paula Durbin Westby (interview linked on the Facebook page.)
A decade of shifting narratives; what’s left for us to talk about?
I’ve mentioned time and time again how actions to tangibly create differences in autistic people’s lives mean more than mere words, but it’s true.
It is so easy to feel redundant BUT, as I have also written about before, there are some aspects of society that need to embrace autistic people much more and that way, we can all profit.
The South Holland Centre is set to get some ‘culture recovery’ funding for restoring it as a creative hub but there is a greater sense of recovery that needs to occur.
Our buildings.
With so much space potentially being reinhabited or perhaps left alone, is this the time to rejuvenate the way we create homes/space for autistic people? What does neurodivergent-friendly housing look like for you?
What would the perfect autistic space look like? Something like the conferences AutScape or the American AuTreat?
The mind wanders…
With so much taken from us, the routines, the familiar comforts, perhaps it’s the prime time to take back the small town that has historically been the afterthought of Lincoln, Peterborough and other places.
Ten years of autism acceptance but this house is still not a home as Paula’s foundations have yet to solidify. But I think they will.
Thank you Paula.
April 2021 - The End Is A Beginning
The Education Awards returns this year as do some other events we have been reminiscing about and will engage with once again, such as the popular Going Forward Festival.
Be sure to visit Autistic Lincs’ Facebook page online for how to support the festival; it only comes back with YOUR support.
Reviving old systems and old events is part of this process we’re still on as we begin the next stages of taking back Spalding.
This includes the educational sector and with the Education Awards on the rise, it makes me wonder who has shone in the darkness , particularly in recent times.
I recount with absolute pleasure, my performance at the Education Awards in 2018 where I was quoted as saying: “I’m a firm believer that knowing where you’ve been can show you where you can go.”
This societal journey of Covid, lockdown and all it’s entailed, brought out the worst and the best of us and I believe that these awards will be like no other because these times have been like no other.
What are the gaps in our education around autistic people and our community?
With gay autistic pioneer Alan Turing being put on the new £50 note, how are we representing gay autistic people? Trans and non-
binary autistic people? Black autistic people?
Autistic people whose primary language isn’t English, what then?
You may argue that there AREN’T any of those people in South Holland... but I didn’t know there were so many autistic people willing to engage with Autistic Led.
I didn’t know how this column would turn out and here we are, three years on.
There are many more conversations and communities to connect with as shops return, educators continue to adapt and reform. We only have to look at the recent graffiti in our town as a starting point.
And so, in order to truly know something, we have to be ready to know nothing.
It doesn’t matter about a week, month or year of ‘awareness’ or acceptance, the end of it all is the beginning.
May 2021 - Social Enterprising
In 2016, I was on a social enterprise journey and I wanted everyone to join it.
It took me to a conference at Boston College, the place and the people that left an indelible mark on my brain, inarguably a massive impetus to returning.
What was the social enterprise?
Its name was Spergy – the online arts community for those on or interested in the autistic spectrum.
The idea was to bring together autistic people in an arts community that would empower them to share their artistic endeavours.
Think Facebook but specifically for creative autistic people and allies.
A nuanced user base, the trio of my dad, brother and I would take and promote the idea at the ‘the national event for autism,’ The Autism Show.
Before I wrote this column, I reminisced about previous columns and therefore illustrated memories of the past visits to The Autism Show and it all made me think; would it work now? (Ambition Is My Ammunition, Autistic Lincs, June 17, 2019 tells the three-part story of what would be my second adventure, to the respective city venues.)
But then I realised, I’ve been here twice now.
Because whilst Spergy was the original purpose behind the talk, I also attended in 2019 to chat about Janice AKA my novella Ripples.
The ‘progression of realities’ concept proposed at that time would be considered convoluted by many people’s standards…but that doesn’t stop me.
How’s the saying go? The definition of insanity…
In the tentative moments potentially preceding the revival of Autistic Led, and knowing the creative juices that flow in the veins of so many autistic people in general, could this the ripest opportunity for growing Spergy into what it could always have been?
Well, a lot has changed. My attitude towards myself as an autistic man and perhaps where I’d be best directing my efforts in future instead of a neurotypical-centred conference is but one of these changes.
The landscape of invention never waits for you though and there are similar things to Spergy on the rise and growing pains are likely.
I mean that with no malice but I know firsthand the struggle of financially sustaining such ambitions and with the CoVid chapter of our lives affecting how we develop from here on out, I am just being honest in my assessment.
Autistic Empire is an autistic-led social organisation which houses my poetry book Movement: Performance Poetry Written Down with a portion of the purchase going to Autistic Led, the full potential of its blossoming just yet. Maybe that’s a good thing.
If Covid has given us anything, it was time to evaluate and come back stronger.
One autistic-led organisation that I believe to be thriving is Aucademy.
Their recent video chat (every Saturday on their Facebook page!) is called Aucademy Refreshed which both asks itself and simultaneously affirms future plans for it and their learners.
Autistic Empire and Aucademy share the same core foundation as autistic-led but their platforms are distinct and this is their advantage.
Much like if anyone
engages in a group other than Autistic Led, it is not my place to be jealous about their decision, so long as it’s the best decision for them.
There is plenty of social enterprise and movement for all of us to join the journey together.
May 2021 - A Tonic For The Soul
This was week was Mental Health Awareness Week.
What can we learn from it as we move forward?
I won’t harp on about the fleeting nature of this promotional event despite the omnipresence of mental health itself and the fragility with which it can present in not only non-autistic (neurotypical) individuals but also the autistic and otherwise neurodivergent community, especially in a time like this.
But information is more accessible than ever and I do not believe that this will change any time soon so it’s crucial that we take advantage.
Connecting nicely into the
Tonic Talk podcast with this week’s guest: Me!
Tonic Talk is “a weekly dose of talk, music and insights on a wide range of topics, including health advice, encouragement, and inspiration from the Tonic Health family and friends”.
Amber Sinclair, host of the mental health and wellbeing-centred podcast and creator of the project Rock School Bus, and yours truly talk about the autistic community and why autism acceptance matters, amongst
other topics.
This matters on a bigger scale than ourselves though.
Because, though it may seem like an innocent conversation that casually passes back in an hour or so, this represents bridging the divide between neurotypicals (non-autistic people) and neurodivergent people (including but not limited to autistic people).
Mental health is universal. This is not to invalidate the nuances of certain members of society such as the external social pressures
applied to autistic people.
I found Amber so willing to learn and genuinely LISTEN, therefore I felt a sincere desire to get things right.
These kinds of crossovers are integral to tangible change because if we do not spread our seeds of knowledge with others then how we can truly grow? We must continuously fertilise our messages in as many soils of society as we can and the Tonic Talk podcast is one such area of soil to bloom education and empowerment.
May 2021 - Potatoes
It is soon to be Autistic Pride month yet again (June) and I am eagerly anticipating the Autistic Pride Online event which I am performing as part of..
Now, I am sure that these lockdown and Covid years have tested us all to our limits, but perhaps particularly the worst affected might well be autistic people with heightened anxieties, therefore times of distress on display.
A negative feedback cycle here can be catastrophic.
What I mean by this is that if misunderstandings about why an autistic person might be in distress, generally but also with the world reopening having potential to isolate, it can be easy to fall into self-hate and difficult dynamics.
So when self-hate and misunderstood communication, sensory and social differences combine, how can you feel PRIDE in that?
It is an uphill battle from before the days of any prospective diagnoses but the journey and discovery of an autistic identity can be made easier with a few key principles.
Let’s think of it all like our humble Lincolnshire potatoes.
1. Root yourself in fertile soil; there are autistic people, advocates and communities out there to help foster a positive sense of self. No one is saying the autistic self is ‘easy’ without difficult times but examining the environment in which it grows is essential.
2. Consistent nourishment/tending; this is more reflective of growing produce generally but keeping and reinforcing positive messages about what it is about to be autistic will empower autistic people in multiple ways. For society, this means authentic
research (NO CURES), books and other such commodities and events that uplift rather than leave autistic people…downtrodden.
I’ve written this before but technology has made productive narratives more realisable than ever and a mix of this and offline proactiveness when it comes to questioning the ‘norms’ that stunt our collective growth.
3. Saleability; when these two principles are applied through generations and we SPREAD these messages through the plethora of platforms that exist, that’s when lasting change occurs and we all feast on… the versatile, beautifully sumptuous ‘potatoes’ that find their pride of place in this world.
But I guess this is all just food for thought…
Dedicated to my grandma. I love you.
June 2021 - Apps-solutely
I went out recently to Bentley’s (bar in Spalding). Some of my readership may recall an old column called ‘Do Your Dance, Chloe’ about masking as well as the rhythm of life as seen on the dancefloor.
But life lessons can be learned and absorbed from the current ‘clubbing’ experience.
For one, it’s quieter and I like that.
The sensory and social nightmare of thumping noise, bright lights and strangers constantly being close to you has been put in the back of my mind.
Instead, the forefront of my brain is focused on conversation as well as the people I invite into my booth.
This booking system empowers autistic people to have control over their social arrangements and I think this is hugely positive.
But what if you haven’t made those social connections?
What about dating possibilities?
I had the idea that perhaps pubs and clubs could work with dating websites to tune into local areas and develop a county-based variation of popular dating apps.
So you could go into Ivy Wall and the Ivy Wall would have their own nuanced app in partnership with, say, Plenty Of Fish.
Websites like Plenty Of Fish have the function to search for people nearby but this would be a safe, local version of the same app as a way to meet people.
Use of this app would be perhaps for more timid individuals, perhaps autistic people exclusively.
Bartenders could be contactable through the app by the autistic and otherwise neurodivergent users to aid if necessary with conversational prompts etc, whatever was required either beforehand or during app chats between booths.
What do you think?
Thoughts appreciated!
June 2021 - Conspiracies and Crises
Well, this isn’t going away. The Anti-Vax Conspiracy was a feature-length documentary on Channel 4 this past week and I am thankful that such a high-profile channel has this programme on its list of content.
I think the timing during Pride month, which is celebrated by LGBTQIA+ individuals as well as autistic people in their own right and collectively, is positive depending on who you speak to.
The documentary creates necessary dialogue.
But not everyone will change their views on the idea that being autistic is in need of a ‘cure’ or that it is an ‘injury.’ And sometimes you have to pick your battles.
Situations in life vary but you can choose to invite bad influences into your life or reject them.
This is the advice I would give to anyone unsure about whether vaccines ‘cause’ autism (they don’t) and this is another crucial reminder that our young generations rising up must have access to a positive sense of identity, pre- and post-diagnosis.
And what about those currently searching or thinking about a diagnosis but who are unable to get that formal validation due to Covid affecting the process?
I think this will always be a cyclical issue that never goes away but promoting productive teaching materials, posters, advertisements and other such marketing resources including word-of-mouth essential.
What do you all think in South Holland?
And on the other side of the spectrum, an appropriate comparison rather than the troublesome notion of ‘functioning labels,’ we have another facility that should be caring for the community closed down. This time, it’s Cawston Hall in Norfolk.
Details can be found online but it’s yet another time for us to listen and act in response to their reported failings in providing the right care for us.
We have moved so far away from locking people in isolation (wouldn’t seem so sometimes!) but it could be argued that ‘othering’ individuals that have high support needs, medication requirements and such only serves to distance us from ourselves.
It is not the same for this column as I do believe that authenticity is essential to tangible understanding and action but there are sections of the world that exist purely because we are scared of ‘behaviour that challenges’ etc.
We can’t cope so we put people somewhere they can.
Again, I am not saying that specialised hospitals, care homes do not need to exist, far from it.
But as I have written about before, I think we can do a lot more internally to minimise the externalisation of people we fail to even UNDERSTAND.
July 2021 - Lifelines And Lifetimes
The annual Autistic Pride online celebration is over with but the residual effect of it still sits within my heart and mind.
Once more, I considered myself grateful for the opportunity to have connected on such a grand scale in such an accessible way.
And just like all of our hearts and minds, almost like with the death and isolation of Covid, came a lifeline, pumping oxygen of perspectives to our brains more efficiently than ever.
We had a plethora of autistic advocates from all generations and multiple facets of the autistic community.
Some standouts for me included one of the founders of Autistic Pride Day, Gwen Nelson.
For me, it is so fulfilling to remember our history.
Such authentic representation is always resonant with my autistic self and even without meeting Gwen and many others present in contributing to the celebration, I feel like I need to know of them. Knowledge gets passed down the generations in life and autistic is no different.
The shape of the autistic community takes form depending on those that create the most dominant narrative. Dominant narratives aren’t always popular ones and often they are harmful such as with prone restraint and bleach enema defenders.
So in golden light of that bleak reality, it is beautiful to witness such positive vibes within the autistic community. Aucademy is an organisation that is based around “educators of autistic experience”,with weekly live chats on Facebook and I share their work a lot on the
Autistic Lincs Facebook page.
It was a wonderful array of presentations and accounts from Aucademy and I will always hold their content dear to the core of my being. Highly recommend is their website aucademy.co.uk and their Facebook page wherein they have live streams every Saturday at 7pm.
Also, I heard from the Romani autistic community and furthermore from Autistic Empire and one of their members, Ted, a dancer and artistic creator which I really enjoyed.
There aren’t words to describe how I felt and will continue to feel about Autistic Pride events. It’s more than words. It’s a feeling. It’s a movement. LGBTQIA+ and autistic people alike, we unite not just over this month.
But for a lifetime.
July 2021 - Revisiting Rainbows
This time in 2018, I was raring to unveil a new initiative for the autistic community whose primary language isn’t English.
It would be called Rainbow Hands.
The idea was, and still exists on Facebook, as the Rainbow Hands Hub which is the central area for information and all other language-specific hubs (Polish, Lithuanian, Russian etc).
This is an ongoing project (one of several as per my chaotic mind/executive functioning issues) but why would I want this?
What is the purpose of such a project?
South Holland has a diverse population of nationalities and this can be seen by many as extremely negative but that is utter xenophobia.
Diversity forms part of life just as neurodiversity does.
There are longstanding assumptions that the European workforce are lazy, job-stealing drunks but this kind of idea fails to understand that one bad apple spoils the bunch.
In this case, it means that just like we say ‘Once you meet one autistic person, you’ve met one autistic person,’ we can say the same about our community members whose primary language isn’t English.
This is all relevant because the underlying rifts between us are what will make it difficult for those in need to seek help, specifically from services made to assist autistic people whose primary language is not English.
In my experience of some Eastern European countries through several personal interactions and preliminary research into websites, there is a lot left to be desired when it comes to productively supporting autistic people.
We mustn’t shame ignorance but work out whether it’s possible to change perspectives.
It is not always possible as generational ignorance holds many back (that is, ignorance borne out of certain times when accurate information on the autistic identity really was scarce).
This generational ignorance includes those whose primary language isn’t English but even trained teachers who think they know better.
Ignorance transcends culture. Education is a by-product of knowledge.
What are we learning and who are we learning from? Authentic sources are out there, we just have to observe them. People used to believe non-verbal = non-thinking.
To the contrary, some people would be more effectively empowering autistic people by being non-verbal and listening to autistic voices.
Dance is one of life’s most beautiful unspoken languages but if the autistic community is society’s dance partner, we need to stop dancing with two left feet.
May we as future generations of people be more in tune with ourselves and others so that we can all dance, we can all move, together.
Love, pride and power are universal languages, often silent not because it has nothing to say. But because actions speak louder.
July 2021 - Bus'ting Out The Norms
So, co-production week happened but the Education Awards will have to wait.
That’s all good because as I’ve always written, I don’t feel like these things are limited to one week.
And the Rock School Bus has mileage far exceeding one week too!
The Rock School Bus is an immersive, mobile music maker!
Coming to various villages around our local area in the next few months, this has massive potential for the autistic community.
Music is a non-verbal communication tool that is sensory-rich, invites collaboration and simultaneously encourages independent exploration.
Such a wondrous learning tool is headed up by Amber Sinclair, who is also the host of Tonic Talk, a far-reaching podcast with local voices as its source. It is one that I have personally appeared on.
You can catch the podcast weekly anywhere you get podcasts from Apple Podcasts to Google Podcasts and beyond.
But I’m steering away from the main subject here.
Amber is not alone in her vehicular ventures and as the world spends a week unmasked (presuming we don’t enter another lockdown given the current football madness), I firmly believe that whichever way the world turns, mobile support will be at the wheel.
If we open up and things get back to ‘normal’ then projects like Rock School Bus and Linkage Sensory Bus are brilliant.
If the world closes up again and more rurally isolated areas and people in Lincolnshire struggle disproportionately to others that are ‘learning to live with it’ then it’s splendid way to get there.
And for those fully vaccinated and sustainably protected (through booster jabs for the vulnerable and ‘immune’ alike), think of the trips care home residents could make. What those in supported living accommodation could do with one or all of these mobile masterpieces.
Finally, even without people involved, the bus itself acts as a way to spread a message, written or painted on with OR without the community involvement (there is a severely negative example of this ‘working’ but I won’t promote it here…).
What about the pioneering Going Forward Disability Music Festival? (Check out the Going Forward Music Festival 2021 Facebook page for info if you haven’t got tickets for Saturday, July 24!)
What about a mobile cinema? What could you project onto the side of a bus? Linkage Sensory Bus already uses projections for its own purposes but my cogs are certainly in motion with the possibilities!
July 2021 - Paper Promises
This week, at the time of writing and of course beyond that, a ‘landmark’ strategy to improve the lives of autistic people. Do we REALLY need it? Let’s examine.
First, here are some numbered points for consideration.
According to the document, it will be:
1- Investing £10.5million into finding new ways to reduce diagnosis waiting times for children and young people;
2- Investing £2.5million into improving the quality of adult diagnostic and post-diagnostic pathways and diagnosis waiting times;
3- Increasing public
understanding of autism with a long-term, nationwide initiative;
4- Providing £18.5million to prevent autistic people from falling into mental health crisis and £21million to local authorities to help people in mental health hospitals back into the community;
5- Improving understanding by training education professionals, job centre staff and frontline staff in the justice system.
Starting with reducing diagnostic waiting times, I’m not exactly sure how they do that but when it comes to improving the post-diagnostic support, that sounds great. The earlier we can
embrace the autistic identity, the better. Diagnosis is not a death sentence but the start of a chapter; a book of beginnings. A story in which you are the author, finally. A discovery. A journey.
Increasing public understanding. Well, that’s just obvious. A redundant at worst, superficial layer of every good-intentioned policy, person, charity etc.
Actions we can take in Lincolnshire, I would suggest as follows:
- Online initiatives (Twitter hashtags, Facebook campaigns?) This is the quickest way of leading a change in narrative in my opinion as so much of the world has been relying on digital connection for so long and it isn’t going away;
- Inviting autistic speakers to talk at schools, colleges, workplaces for training and educational purposes etc, again utilising online connections such as YouTube and Zoom to bring authentic content easily;
- Talk about autistic brains/Neurodiversity which includes ADHD, dyspraxia etc early in education to avoid contributing to stigma;
- Autistic-led conference (such as the one in Lincoln by PAACT perhaps);
- Lighting Up Gold buildings/shops (autism acceptance month colour symbolism);
- Market stall ideas (basic information in public places can work wonders).
Essentially, when it talks about hospitals and the criminal justice system, we just have to be endlessly objectively analytical to ensure that we do not remain closed off from what really benefits autistic people. There is SO MUCH to divulge here that could span many columns (and probably will as the months and years progress).
But do we really NEED this? We need formal documentation, yes, but as ever it is what we do with the paper promises that really matter.
August 2021 - Giant Steps
Landmarks are often part of a sightseeing journey so this week, we move onto something different.
Parkour.
I’ve briefly written about it before but I was so excited to see a new video by something I follow on YouTube called Jimmy The Giant.
He creates content around the parkour community essentially and one athlete in the community is one Joseph Marx who happens to be autistic.
He is someone I have wanted to interview for this column in fact and chats were initiated with social media but (as yet) it hasn’t occurred!
But for an absolutely fantastic channel like Jimmy’s, I am overwhelmed by the high-profile coverage of this overlap between the autistic and the parkour community!
I have observed many links between the autistic experience and parkour but one I want to point out is the invisible developmental correlation.
Parkour’s essence is getting from A to B in the most efficient way possible and I wholly appreciate this but it’s the non-conformist nature of approaching the environment that really gets me going.
In fact, one could say that in parkour, you have to initially have a creative viewpoint of the environment that most people would ordinarily overlook (if you practice parkour, you know that rails and walls are not merely parts of the scenery that blend in…)
Now, whilst many autistic experiences in school are unfortunately far from straightforward, the path to realised potential is definitely helped by being creative in your thinking and practice and this is also certainly part of the enjoyment I find in parkour.
Jimmy The Giant’s video is all about how ‘autism shaped parkour’s most creative athlete’ and this is a life lesson in how we should treat autistic people.
Aspects of being autistic can be disabling (meltdowns are not fun nor are they desired) but too many narratives are about using this one aspect of the autistic identity as an all-encompassing idea of what being autistic means (which only exists because of the unaccommodating, rigid world view of a majority!).
This narrow view of what being autistic is and looks like is what makes people reject diagnoses, hate themselves and enter mental health services already broken.
That’s why Jimmy The Giant’s video makes a big impact.
He showcased a supremely talented individual who is valued for his contributions to his chosen community rather than shunning him for not contributing in the ‘usual’ way because parkour is not ‘normal’ but that’s okay.
The right people in your life will be your ally in the journey you take, however you get there.
Thank you Jimmy, Joseph and others to come.
One small step for the community, one Giant leap for autistic kind.
August 2021 - Festivals
The Holbeach Music & Beer Festival has arrived. I’m hoping the brews are the only source of sickness in the aftermath…
Festivals are once again hitting my radar, once with the Going Forward Disability Music Festival and now again with local hit The Holbeach Music & Beer Festival.
Holbeach Music & Beer Festival (50010708)
Call me cowardly but I chose not to attend out of health concerns and time will tell whether this is the nail in our community’s coffin or the nail hammed into the chest of the vampiric curse of Covid.
I also think that the two festivals I’ve just mentioned are so far apart in terms of audience and, like I’ve written recently, I think a combined effort might be beneficial for all.
I think by sheer population mass, adding to its prolonged absence, the Holbeach Music & Beer Festival is going to get massive numbers. But can’t disabled individuals and autistic individuals drink too? Of course they can. Would some struggle with the numbers? Yes, myself included.
So is there a happy medium? Are we doing enough locally to engage ALL of the local community?
Preaching to the choir is one thing but singing a song to someone who’s never heard it before…
What practical things can we do to ensure inclusive participation at local festivals?
Here are some thoughts:
1. Sensory zones/break away sessions for when the individual starts to feel overwhelmed (sensory/social etc);
2. Band sets with silent clapping/flapplause (this is something I’ve seen used within the Autistic community and once used myself in a primary school presentation and is essentially waving so as not to create noise that would otherwise be distracting/painful on a sensory level).
Why couldn’t we have SOME bands or SOME setups at this or any other festival with that kind of
accessible participation? Several stages could offer varied experiences as that is the natural diversity of life;
3. Diverse bands themselves which visibly present it as OKAY to be autistic/disabled to the public who are there for music/entertainment, a good time (I wonder how many openly autistic/disabled local musicians are out there?).
4. Interactive performances/musical theatre? The big screen used in the town centre recently shows that we can bring something new to the town if we want to so why can’t we use this kind of technology to enhance the festival experience? I’m sure that one of our local schools would have interactive screens to utilise for all those tactile needs. Or maybe I’m thinking too broadly and we just do a Just Dance competition? And musical theatre could be added to a festival line up if, say, there were
elements at the South Holland Centre (love and solidarity to the staff and
individuals behind the protest group!).
5. Social Traffic-Light System to gauge willingness to socially engage. You might argue that this increases stigma and makes the ‘hidden disability’ visible but why should people be shamed for that? If anyone was to bully for such labelling, then the BULLY is in the wrong here.
Of course, autistic and disabled people shouldn’t HAVE to wear anything and the acceptance should be there. The ability to have empathetic and productive conversations in public without judgement should be there. We’re not there yet.
Let’s see how the festival fallout affects us moving forward as a county but for me, regardless, we have a little further to go before we are openly embracing and engaging neurodiversity.
September 2021 - Do You Remember?
It would be productive to know how many people intend to arrive for safety purposes but this is the first step in a long journey back but we have to start somewhere, right?
It will be a welcome return but I cannot say that I am not still wary.
However, the joint decision has been made to restart the group on Thursday, September 16, from 4– 5:30pm at Tonic Health.
I sacrifice my own vulnerability for others’ desire to connect though it is not without waiting two months after what was called ‘FreeDumb’ (Freedom) Day when people began to choose whether or not to wear a mask (autistic people have sadly been masking since before the pandemic made the world take notice!)
I will still be wearing my mask and I think unity in all senses of the word is what is needed for a successful comeback.
Autistic people can struggle knowing what others’ personal space boundaries are so adding into that the personal choice of wearing a mask or not, I predict some challenges ahead but in a version of the words famously spoken by MP Jo Cox, “we are far more united and have far more in common with each other than things that divide us”.
It doesn’t matter that I believe this was about immigration, it’s the principle that speaks to me.
Let this be a time for reinvention, reinvigoration and re-education for all in the autistic community; autistic and neurotypical alike.
I am never one to be content with what I am doing (for better and for worse) but I certainly don’t want to rest on my laurels when it comes to shaping not only the group we have but the generation of autistic people that comes after me.
For Lincolnshire’s sake, we need authentic autistic input and empowering them through as many platforms as possible is so important.
I certainly have high hopes for bringing more empowered Lincolnshire
autistic voices to platforms for change.
I also have desires to bring my own voice and story through poetry and talks to schools and places again that are willing to hear me. (PS any schools/colleges etc want to be interviewed!?)
A bucket list interview would be from John Fielding Special School in Boston as I worked there once upon a time and really thought it was the place to be.
It would be interesting to have a conversation now that I know more about ABA, the hidden killer of autistic people, and am just more connected to the autistic community in general than I was before. A re-education of myself, really.
So let me know!
Let’s make this a safe and surefooted return.
The educational ember of September burns bright. Let’s start a fire.
September 2021 - An Autistic Re-Education
The Lincolnshire Free Press and Spalding Guardian Education Awards are next week.
What tips and tools lay the foundation of an autistic-friendly education? Let’s discuss.
1. Identity-first language
Though it is down to personal preference, many autistic individuals prefer autistic person (identity-first language or IFL) over person with autism (person-first language or PFL) as the former states that being autistic is their identity.
No, that is not a negative and whilst good intentioned high-profile people that an autistic person may meet (teachers, parents etc) may say the opposite, being autistic is nothing to be ashamed of (which is inferred when you say person with autism.)
Autistic people that refer to themselves as a person with autism reserve that right as I mentioned, however, many autistic people experience internal ableism, perhaps without realising, which is a gradual decrease of self-esteem that an individual feels after a build up of feeling ‘less than’.
2. NO ABA/PBS
Applied Behavioural Analysis/Positive Behaviour Support are both practices within the education system that are causing autistic people to feel ‘less than’ as mentioned above – but in a hidden way.
Let’s dismantle that oppressive method by remembering that communication is a spectrum and we should encourage all its forms LED by the individual (not by a chosen ideal communication/behavioural style such as speaking).
More could be written on this subject and it may continue to be debated but…can we not?
‘Therapy’ could be anything from speech and language to animal, LEGO, occupational and music.
ABA/PBS is sending people into rehabilitation, not therapy.
3. Nothing About Us, Without Us
A simple concept but one that can be forgotten in the structures of education.
It may be ‘easier’ to ask teachers with diplomas and carers with personally connected experience about what is best for autistic people but presuming competence in those all across the support needs cycle is key to authentic input and provision of services.
Particularly now, a blended approach of online and offline opportunities to connect is crucial to realising autistic people’s potential.
Approaches to inclusion must be varied but contrary to the idea of functioning labels which is to separate us rather than see us ALL on a support needs cycle, regardless of whether we are autistic or not, what benefits us as PEOPLE often includes autistic people.
4. Support Needs Cycle
Forget what you learned about ‘functioning labels’ and relearn about support needs.
Much like the other tip/tool to an autistic-friendly education, language is important but its meaning is not merely superficial.
The idea of ‘functioning’ is subjective and cyclical. For example, communication is a spectrum yet talking is seen as the top of an imaginary hierarchy and it needs to stop inside AND outside the classroom.
Therefore, the idea of support needs describes more accurately that subjective and CYLICAL nature. Situations and stages of life can vary which leads to a ‘spiky profile’ of development. Do not fear, the all-natural autistic support needs cycle is here!
These are only four sections but I do think they are key parts of encouraging healthier autistic wellbeing, setting them up for success rather than failing to fit into a majority ‘norm.’
October 2021 - A Poem For My Thoughts
I stare at the page. Unaware of what to say and how to say it.
The point of this column remains evasive.
Therefore this poetical form is created.
Life is makeshift so how do you leave a legacy?
Whether it’s through
energy, the memories or the topics you touch on.
Break it down for one generation so the next foundations can be built up strong.
My mind will never be idle
I consider listening and acting on the community’s needs vital
Even if the barriers we face seem like they’re on a ‘wash, rinse, repeat’ cycle
Sometimes it feels like it’s just me but I can’t find all
The answers by myself, I require help from the minds of others
But it’s a journey to
empower everyone to fly the tribal colours
Of the marginalised, starting your lives oppressed from day one
Places to fulfil our potential? We have to make some
Give the tools to as many as possible
Rather than preaching to a choir
But that kind of public
energy does expire
So it’s about finding the best kind of position for individuals
But changing core ‘norms’ of a system is pivotal
Communication’s a spectrum and we should respect that
When we become distressed at the sounds of a scene
Or the quick change of a situation, that doesn’t mean
We enjoy how we feel, causing you an ordeal
It’s not a conscious choice
All we want’s a voice!
Alongside practical support schemes to last lifetimes
Not paper promises or inconsistent procedures and provisions in the pipeline
With societal blockages refusing to let true identities flow
The purpose, not mere profit, of our existence may never be known
Confined by a culture that favours cost over contribution
Many of us will sit on the fence and watch the movements
Of the blind, the ignorant among us that won’t change
Some perceptions will never be swayed, that’s okay
Because we can alter how we feel about our own brains
I hope this poem is one that exposed pain and invoked change.
At the very least, stokes flames for the camp fire we have yet to set alight to
A compassionate, creative, connected community and a world of acceptance with actions to match?
I’d like to find you.
October 2021 -
It's National Poetry Day on 7th October. Just a day for poetry? Just one column for poetry? Poetry is my LIFE.
It is the outlet through which my internal struggles, successes and stories
become alive.
When did this happen? I can’t be sure. Why did it happen? God knows?
But poetry is here and it’s happening all around us.
Poetry, for me, is about harnessing energy from the world, conversations, observations and externalising that as written form or performance.
Almost like regurgitating experiences people that are not poetically minded might miss or simply consume without thought.
Of course, there are layers to what I’ll call the practice of being a poet.
Some poets don’t just chew the fat, they chomp it multiple times until they get something digestible for either themselves or for others to ‘digest’ or read/hear.
Some poets merely chew something over once and ‘spit’ (a commonly used word to mean ‘speak’ in hip hop) a raw form back out for the masses to enjoy or perhaps not to enjoy.
And this brings me to another element of poetry; the audience.
Does a performance poet like me exist without an audience?
Is there beauty in a poet using the written word without an audience because they are their only ‘critic?’ Beauty is in the eye of the beholder but if no one is there to behold any stories being told…
My father has often said that when he has read my poetry on paper, such were the early depression days of my evolving poetical mind, he would sometimes not fully understand it until I spoke it.
The pauses. The emphasis on the words. Where syllables connect.
For me, the process of
poetry, whether internal or external, is what it’s all about.
I type a lot of random poems online nowadays but I still prefer pen and paper over technology.
Honing the tools around us such as technology to enhance the message, is something I’m all for too. But then, it can be about the execution.
As an autistic performance poet, I MAY not always give eye contact in my performances and this will then potentially ‘lose’ the audience in the moment I’m trying to create (if it’s drawing from personal experience then it may have a different effect but this is what’s down to the individual piece).
No one is less than anyone else because, for example, I can speak on a stage and others cannot.
But I do personally,
because of the roots that have grown my poet-tree, a sense of social responsibility for my voice in the ‘scene.’ I have fondly written about my past social enterprise venture Spergy (no longer exists…) but the core message behind what started it is this;
My personal journey became a collective journey.
I channelled my feelings into written word then transformed into a performance poet along the way and for me it feels like another stage in the evolution of myself as a poet.
It’s up to me to take those foods for thought and make them into meals.
The physical gestures accentuating the poetical.
The stories told of my own making and, respectfully and authentically, of others.
But like before, poetry is inside of all of us. It can be awakened.
Maybe you’re a poet…and you didn’t even know it.
October 2021 - Know Yourself
Halloween draws near but October is also ADHD and Dyslexia Awareness Month.
Both are common overlaps in the brain bubble that is neurodiversity; the variety of human brains.
Now, there will be autistic people also diagnosed with ADHD/dyslexia but they may also be misdiagnosed as autistic when in actual fact they’re an ADHDer/person with dyslexia (these language choices are personal but if anyone who has been diagnosed with ADHD or dyslexia wants to chat about alternatives, let me know).
Without delving too much into this side of things, I want to focus on two particular people that inspire me who happen to fit into the ADHD and dyslexia diagnoses.
First is American rapper Joyner Lucas who has many successful rap albums of his own making but has notably featured alongside Eminem on his Lucky You song (Kamikaze album) but it’s his song ADHD and album of the same name that really resonated with me. In it, he sings:
‘It kinda feels like, I’m dyin’ on the inside
It kinda feels like, I been tryna get by
And I been this way since day one
I don’t need no medication
No, I don’t need no drug
Or maybe I’m different, and maybe my ADHD got me trippin’
And maybe I’m just everything that you missin’, yeah’
This opener clearly captures the struggle of conforming against someone living comfortably in their own skin and I think that such high-profile exposure of this struggle is good for those looking for someone’s footsteps to follow in or at least to look at the journey of someone so mainstream and see that ‘success,’ whatever that means, is possible.
Joyner also mentions that he doesn’t need medication for his condition and I think that’s a layered conversation starter.
Using medication should not be automatically met with resistance because it certainly helps some people but if down to my own personal choice with my own conditions/states of mind, I would rather use natural or no such chemical adjustments to my brain.
I do strongly believe that if an ADHDer’s mind is utilised effectively, much like any other brain should be, then the ‘limits’ previously thought to be holding people back will vanish.
The environment is key and fostering opportunities for those that think differently is crucial rather than gatekeeping those that ‘fit in.’ How do you invent if you stay with the status quo?
How do you push scientific, creative and general boundaries without having a little curiosity?
The second and final person I’d like to highlight is someone special to me by the name of Bliss from an Australian rap group called Bliss N Eso. I have written before about the autistic community’s deep-rooted connection to Australia but a major reason why the land of Aus resonates with me is through the music that Bliss N Eso make.
Their recent album The Sun is full of the usual array of vibes they deliver to your earbuds.
Sometimes downright crazy lyrics and in equal measure uplifting and thought-provoking, I really do feel empowered by them. Bliss AKA Jonathan Notley is dyslexic and says so in a very old song called Then Till Now: ‘From a part of the Bronx, to the heart of the ‘burbs’
From a dyslexic kid to an artist of words’
To make such intimate information public, it helps to normalise the different brains that make up society (seems simple, no?)
I really respect Joyner, Bliss and anyone else who
uses their platform for change/productive conversation as I’ve openly endorsed several times in columns.
Consider this a hip hop homage from a massive fan of the genre (believe me, I could write on!)
Now let’s make the worldwide power of music, from America to Australia and beyond, mean something for you.
As Bliss N Eso’s song says in Know Yourself in their latest album The Sun
‘Know you don’t have to play the games. Lose yourself just to fit the frames.
Don’t need to throw your hope to the wishing well if you just know, know yourself.’
October 2021 - Solutions
What happens now? The Lincolnshire Autism Partnership Board’s consultation period has ended but hopefully a new era of autism ACCEPTANCE (and that is a key word) has begun.
Like all these things, time will tell but we have some exciting developments and community plans already and applying the mentality of ‘use it or lose it’ is essential.
I believe the Rock School Bus has so much potential and it is a project we really need to get behind, not just going along for the ride, thinking it will drive and sustain itself. We are the driving force.
We’ve been deprived of so much during Covid’s multiple lockdowns and it is the balance of respecting our area’s history, the flower festival being a particular point of potential resurrection, but also bringing fresh new ideas into the town, that will help us turn over a new leaf.
It is not the flu and, I believe, lingering Covid, that threatens our growth this winter but our own complacency.
Warming up our hearts, however, is the effort of Little Miracles to ‘open a Disability Support Centre and Sensory Room for children with disabilities and additional needs and their families.’
But again, it takes more than warm hearts. Good
intentions won’t fund a space.
Investing in local services is crucial, not only to our children, but a whole generation of people.
The quality of Little Miracles’ work affects the development of individuals within local school provisions and further along the timeline potentially into Autistic Led.
You could say that if people were adequately supported in the first place, there’d be no need for Little Miracles, Going Forward, Autistic Led and others.
So let us invest now or forever hold our peace.
Peace of mind for the carers and parents that want to the right the wrongs of a system.
Peace of the autistic voices that speak out to feel validated.
Whether it’s empty buildings in the town centre or the community at large and those working within it, we need to back up our words with actions.
The widespread Miracle Mineral Solution AKA bleach is still peddled as a ‘cure’ for autistic people.
But Little Miracles’ solution, as can be said for all local charities and organisations making a difference to the lives of autistic people, is within us.
October 2021 - Novel
As we enter into November, there is an array of monthly awareness initiatives to explore.
My main focus for this column will be National Novel Writing Month.
Why? Because what we write about autistic and otherwise neurodivergent people doesn’t just stay on the page. It gets lived out through practice.
The books we read in educational settings determines OUR education so it is imperative that we focus on authentic and empowered sources of information.
Let me explain what I mean.
Authentic is to mean using the experiences of those we are looking to educate ourselves on.
In this case, it means asking autistic people about our own experiences. But the path to doing that relies on a key step in order to get there:
Presuming competence
Simple in theory but when put against the idea of ‘functioning labels,’ people will often ignore the fact that particularly autistic people CAN communicate if we have the right tools/environment. When we presume competence, we can then connect more effectively.
Starting from the foundation that communication is a spectrum enables us to see autistic and ND voices as valuable. Again, it should be obvious that we are valuable but when books, texts and therefore the people that read and share these books tell us stories of ‘grieving for your child,’ ‘high/low-functioning’ and other such norm-enforcing narratives, then it becomes a battle.
A battle of parent vs autistic person. A battle of teacher vs parent.
Finally, I want to explain what I mean by ‘empowered.’
This is a state of being that I would describe as people who have had authentic sources of information, positive autistic community feedback for example, throughout their life and feel PROUD to be autistic.
They feel defined by their autistic identity. Not shamed and blamed for it.
Because being autistic DOES define us. And that’s okay.
It does not confine us, however. We are not confined by norm-enforcing narratives that set us up to fail.
Instead, we need to break the mold of monotony and actually appreciate humankind for all its brain variation. And how do we do that?
Through books. Through novels. Through stories of successful and thriving autistic people, autistic people tangibly making a contribution to the world.
Autistic people’s contributions to the world being seen, felt, heard, VALIDATED.
Autistic people being autistic people. Stimming with joy.
Stimming under stress and being consoled in positive ways not shunned from society.
These may seem like crazy aims but I’m really not saying all that much.
Autistic people are authentic. But an empowered autistic person takes time.
We have been beaten down, literally and metaphorically for our differences for too long and that has turned many of us bitter. And the bitterness eats away at us from the inside out.
This National Novel Writing Month, help us turn the page. Write a new chapter.
November 2021 - Caveman Mode
As a quick update, this past week I have been in caveman mode with technology as my internet has been down.
I have not returned to my neanderthal roots and started neither a bonfire nor a campfire (props to Australian rap artist Seth Sentry) in the absence of the limitless technological age we are familiar with.
However, I have, as the column you are reading will prove, managed to eke out a column via data borrowing from another device rather than the usual internet provider (not quite a caveman then!?)
So what, dear reader, is the amalgamation of topics for your weekly indulgence this time?
Well, combining Green Party member Martin Blake’s column in last week’s Free Press and Ryan Gilmartin’s creative community workshop this past week, I think it’s time for nature and creativity to realign.
I have not performed poetry on a stage in some time whilst holding onto many passion projects, like the Wattpad-available cross-generational story of Ripples, which has performance elements involved.
I really miss the feeling of not only taking my feelings from the page to the stage but also creating WITH people.
I have and am still poring over my current novella Ripples but would love to one day take it from either page to stage or screen (give the brilliant Holbeach Film Company’s recent film 15 And Killing’s Facebook page a like and share to and make sure to follow updates on what I consider one of the county’s creative lighthouses and a personal inspiration).
Seeing news about Ryan’s column, alongside the work of names such as alternative artmaker Joey Lowe and graffiti artist/Act 2 lead Karl Gernert amongst others, serves as further inspiration for myself and I really do think the year 2021 is going to bring about some real tangible artistic leadership and movements. As Christmas looms in the month of December, there is no time like the present to hibernate from the world, incubate new ideas and release them into the community!
And what better conditions than nature to do that? It is all we have.
Having what currently seems like a month, away from the generational privileges of the modern age, is actually a moment to relish. Refine. Refocus.
The nature of the CoVid beast has meant that we had, and still do, adapt to life around us.
Technology being unable in its full capacity, creates opportunities to adapt.
It is Remembrance Day soon and whilst that particular day is reserved for our veterans (see Tonic Health’s website for details on a Veteran’s group by the way!), I believe that this day, week or however long it takes to get the internet back, has helped me remember the bare necessities of life.
Last week was about writing a new chapter but THIS week’s will NOT include a Jungle Book (sorry, I had to).
From Hi-bernation to Bye-bernation....
November 2021 - The Price Of Purpose
This week, internet connection has returned which means a slightly quicker column made (executive functioning issues considered).
And I want to think once again about homelessness.
There is a new fund in which, as reported by this paper last week, ‘the Government has given more than £30,000 to South Holland to try to prevent homelessness for vulnerable residents’.
When we think about autistic people and how it can be difficult to find and keep jobs (though it should be mentioned that this is often through barriers imposed by the workplace and not by the autistic person themselves) as well as the struggle to maintain payments even when they do have the finances available (eg forgetting rent, difficulty organising direct debits, spending habits not being monitored etc) then it is perhaps easier to put them in the category of ‘vulnerable.’
This, as a poem I wrote which was once included in The Big Issue, does not mean the homeless are helpless but measures do need to be in place to ensure those experiencing homelessness have the best facilities to get them into a better situation.
What I mean is the need for services offered by the community, if necessary, and - most importantly - the council funding places for people to live.
Supported living situations are not wholly appropriate for all autistic people, as being checked on can be anxiety-inducing and therefore ‘challenging behaviours’ may present. These can get misunderstood and the cycle continues, this loop of misunderstanding meaning the checks persist unchecked.
It is so important to get accurate information out there about autistic peoples’ needs and wants and just generally how their brains can work because, otherwise, people end up in services they don’t need to be in - the mental health service coming to mind.
If ‘treatment’ within mental health service goes badly then it only serves to put
autistic people at further risk.
Having a sensory-appropriate space (whatever that means for that person so they can express themselves positively rather than the Coke bottle effect of emotions) or perhaps even having a breakaway space so the autistic people can de-stress that way can be efficient measures for support.
I understand that workers have to deal with the spaces they are given but if we start from a different foundation, a creative, sensory-appropriate, calm-yet-expressive space from day one, then there’s a risk of autistic people reaching meltdown, exclusion and potentially homelessness.
This money could begin that journey of getting things right.
The rewards, for autistic people, will be priceless.
November 2021 - Inside The Minds..
This week, there has been news via Anna Kennedy online, that BBC Studios are looking for participants in a two-part documentary series perhaps called ‘Inside The Autistic Mind.’
For all the positive, life-affirming representations of autistic people, it is clear that we still have some work to do in order to accurately portray autistic life and this latest upcoming series is a great opportunity to do so.
That’s my optimistic view. Others in the autistic community may think differently.
But thinking differently can mean different things.
Thinking differently to the neurotypical norm is no bad thing.
But when autistic people think differently to other autistic people...
Sometimes, being the same in how we feel and therefore how our lives unfold, who we might align ourselves with, is better for all.
How many Lincolnshire autistic advocates are there?
I would genuinely like to know.
How many of those advocates will apply to be a part of this series?
Let it be known that many autistic people will happily live their lives without feeling a need to rise up and that’s okay.
Others may need a support system from well-informed allies to amplify their voice/views and that’s okay too.
But from early age to diagnosis (if you get it) and beyond, autistic lives are determined through the eyes of others. It is so easy for autistic people to think badly of themselves when observed under a framework of risk, ‘challenging behaviour’ and deficits.
I trust the local community, the Lincolnshire Autism Partnership Board, Gosberton House School and other local powerhouses of influences (in my opinion and I believe the opinion of the public?) to do what is right for autistic people.
Continuous, open conversation to the autistic community is the way forward.
However, it is a two-way relationship because unless the autistic community is empowered about itself, recognising its brain brand of brilliance, understanding that society’s barriers need to change rather than themselves then the autistic community will keep feeding into a deficit-driven narrative.
An autistic person who has been mistreated and misdiagnosed by the mental health service, the education sector, supported housing etc, will only be reinforcing the cycle of negativity.
Their experience, in their mind, becomes their ‘truth’ as an autistic person so then they pass that negative cycle down to later generations of autistic people.
The new BBC series could be a great opportunity to further boost the autistic community’s spirits as life-affirming stories get told.
Or we could bring on-board influence from the wrong people, the wrong associations, the wrong ‘reason’ and mess it all up.
I remain hopeful but it is up to us, the autistic community.
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