January 2020 - Fruitful

A fresh year brings fresh opportunities for growth and old roots.

Fresh opportunities for constructive conversations around autistic people in a multitude of ways including a returning project of mine from three years ago (details to follow in a later column)

Old roots from 2019 include following on from where we left off with our 100 Day Community Kit; "It is a direct autistic-led response to the extremely negative 100 Day Kit originally pushed by Autism Speaks, a cure-centric charity. Eight sections, 800 positives and helpful tips from your journeys in each."

My plan is to follow and contribute to the kit, which I hope to evolve as time goes on, via searching for it on Facebook.

As seen last week, I aim to develop a short film based around my novelette and am currently seeking people interested in helping me to realize this vision.

Anyone with an interest in film, media and acting can look at last week’s column but I will also post the blurb for the novelette on the Autistic Lincs Facebook page.

One only needs to see what Steph Genovese has done for our local area, bringing in local talent for the film ‘Dishonoured’ to know what is possible when we put our minds together.

Interestingly, I know of Steph from my days creating and nourishing a social enterprise called Spergy and it is within this time period that the original project from 2016 emerged.

So long stories short for now, this year is about the revival of old and the refreshment of new and exciting projects and narratives yet to be written.

Autistic Led, the autistic adult support group running out of Tonic Health from 4:30pm – 6:30pm, restarts this week (Thursday 9th January) and this organic by-product of my own journey, which has now become a collective journey of symbiotic pleasure, pain and progression as autistic adults in the community, will live on and continue to learn and thrive. Once more, details on the support group are on Facebook.

If anyone is out there and has something to discuss or has ideas on what to add to the Autistic Lincs column and Facebook page respectively, please get in touch.

I love to read about the readership and improve and connect!


January 2020 - Waxin' Lyrical

This week, I’d like to re-examine a part of my identity when I was growing up and through what I have often referred in the past to as The Depression Days, that I didn’t have the power to pull off back then. And I don’t mean my autistic identity.

I’m talking about my dreads.

Dreadlocks are seen as giving power in Rastafarianism. I am not a Rastafarian and never have been but at a time of feeling utterly mentally powerless, it was like a symbol of power for my dad.

 

I remember so fondly sitting in front of the TV watching Jeremy Kyle on a dining room chair whilst my dad stood behind

Except it wasn’t because I was bullied by my peers, one of their targets being my hair.

I was not prepared to embrace the eccentricities of my appearance.

The dreadlocked loner that I was in the Depression Days also characterized my most prolific period of pain and pleasure in the form of poetry. Written down, back then.

"I didn’t feel comfortable in my own skin, my own hair, my own identity knotted with tension and strife."

But now…

My dread wax from when I was about 14 years came from Mama Afrika in King’s Lynn, which has now become a Chinese herbalist shop, and 14 years later, at the time of writing, a new pot of dread wax has arrived at my dad’s place and I will retrieve it to give this dreadlocked look another go.

I am like Mama Afrika. I am a changing face in a society that is ceaseless in its motion.

I am waxing lyrical about the dreads I once had, about going to school which eventually led to being taxied to an alternative education setting at Boston College because I couldn’t take the bus. The dread of leaving my house to go to the local shop in case of seeing someone I might recognize from school and being paranoid that this would lead to a conflict I couldn’t defend myself from.

I wax lyrical about these dreads of the past because my roots, like the matted hair of my teenage years, are strongly rooted and by recognising their foundation I am able to grow.

Back in the days, my dad would stand behind me, crafting my mass into locks and that may still be the case in a literal sense.

But it has a different meaning now.

Because now, I am my dad, with the same stability he provided me throughout that time that, due to the black hole of depression and anxieties that enveloped me then, I couldn’t fully appreciate.

The same fighting spirit, akin to the Lion Of Judah and of Leo, my dad’s horoscopic animal, pride in who I am and who I can be.

Sculpted by my hands, my sense of vision, my future is strongly rooted and malleable…just…like…the wax.

January 2020 - Fear And Love

Social challenges are common in autistic people but who do we look to when addressing them?

Many autistic people would follow the social model of disability and say that the environment that we create is the challenge.

An environment that does not accept our communication styles and forces us into a box of their preferences that suffocates our potential to thrive.

Other autistic people and those connected to autistic people would follow the medical model of disability and say that autism itself is the challenge. A non-verbal five-year-old that does not play in the same way as other children or an autistic man that is desperate to date are reasons enough to want a change for well-intentioned benefits.

But as mentioned in Deskilling With Love, the benefits we may seek as outsiders to the autistic individual do not match what the actual autistic individual or the community at large desire.

So what happens when an autistic person, with mental capacity, chooses a therapy that the rest of the autistic community do not agree with?

Unfortunately, as I have seen, it opens up division within the community.

The study of a new experimental drug called Balovaptan is being guided by lead researcher Dr Evdokia Anagnostou at Toronto’s Holland-Bloorview Kids Rehabilitation Hospital who says “The idea would be, people who have difficulty with everyday social functions, may have one more potential option for thinking of interventions, if they choose to use them.”

I have said in my own poem ‘Masking:’

‘Machine gun mentality, autopilot. It’s like my true form is private. But I will make it public. Won’t suffer from injustice. I am autistic and I love it. But that doesn’t mean that we don’t have problems. With environments and attitudes but there are other options. Rather than curing what isn’t an infection. Autism is a spectrum. The answer is to listen, not division or indifference but acceptance.’

I accept that making social connections with people can be extremely isolating and makes us feel ‘less than.’ But I hate to think that autistic people are losing their sense of authentic autistic identity and I think that autistic people aren’t always exposed to the narrative that they ARE enough and that they CAN thrive if society adapts to THEM a little more and this lack of exposure to positive, uplifting and overall supportive messaging is what can lead many autistic people to self-hate.

 

I don’t know if there is an answer to the division but I certainly want to continue having conversations about the reality and fiction of what makes an autistic person thrive.

Do we overcome or understand? I believe that we as a society need to set a balance with understanding autistic individuals and the history of our community at its core but also overcoming obstacles which may be rooted in well-intentioned thoughts but grow into self-hating stigmas that are not only damaging autistic people but killing autistic people and justifying their deaths.

 

Fear is a four-lettered word. But so is love.


February 2020 - Time 

This week, on February 6, it is Time To Talk Day 2020. A worldwide opportunity to talk about mental health and chip away at the stigmas.

Local mental health group Community Mind Matters have launched a new trial project to get local people talking about mental health in Ayscoughfee Gardens. The Mental Health Matters Bench overlooks the ornamental lake and offers local people a two hour window every week to sit and chat.

Every Monday at noon till 2pm a Community Mind Matters Support Worker will be on hand to support victims of loneliness, depression, anxiety and bereavement.

Ayscoughfee Hall, Museum and Gardens host the Community Mind Matters weekly support groups on Sundays and Thursdays from noon to 4pm. The bench has been provided to Community Mind Matters to trial the project on a small scale before considering expanding into other areas of the town on different weekdays.

The bench also promotes some emergency support options for visitors to Ayscoughfee Gardens. This includes the Community Mind Matters Support Group meeting times, the Shout 24/7 text service and the Samaritans.’

This is a simple yet effective way to start those often delicate but crucial conversations that can begin the healing process for many.

But what if you can’t get out to the bench?

Well, a good (autistic) friend of mine is developing Lions Of Today which is, as I understand, aiming to become a ‘safe haven' on XBOX Live for people with mental health issues And disabilities.

I was overwhelmed by the idea and knowing that many autistic individuals have (like myself) and still do engage online a hell of a lot better online than offline,. It is a project I’m really passionate about. Just recently at Autistic Led, the adult support group I lead, we had a Virtual Reality (VR) session as one of the members had kindly thought to bring it in.

The online world and virtual reality may seem less concrete to those that have grown up in different times or that can adapt more readily to the frequently unrelenting demands of the ‘normal’ or ‘preferred’ world but their capacity to create change and impact people’s lives are no less than any other.

I think it’s essential for us to know that engaging in this world takes many forms and especially on Time To Talk Day 2020, it should not matter how that communication comes because the results of stifling it are of too dire a consequence for someone that may need help.

 

Instilling a sense of autistic pride is key to empowering people and communities and so on July 26, there is an Autistic Pride and Craft Fair in London, being autistically led by Autistic Inclusive Meets (A.I.M.) an incredible, autistically authentic organisation.

I will be performing and selling my poetry book with funds going back into Autistic Led and it’s this kind of event that unifies and amplifies our voices….but would it ever work in Spalding? We cannot remain insular in our message of peace, love, unity or anything else we may want to promote otherwise change is never fully implemented.

Perhaps it’s a question we can ask further down the train track but right now, we’re on a journey to see 2020 through our own eyes and for it not only to be Time To Talk but Time To Listen. Time To Act.


February 2020 - Trophy Case

It’s almost time for our second year autiversary but something Kieran Rose AKA The Autistic Advocate wrote, got me thinking recently.

I have linked this below but he talks about being nominated for a National Diversity award but not wanting to be nominated.

Shying away from the stage’s spotlight. I have never been one to put myself on a pedestal in life. I was a kid that stood at the back of a dance choreography class despite absolutely loving and wanting to engage in the dance. I never understood learning the basics of dance, which then enable you to develop your own style. I just wanted to do my own thing; to flow.

This column has always been about the autistic community and I value my position of privilege as a weekly columnist with the purpose of it being to cast a spotlight on the autistic community; my role and experiences within it and the roles and experiences of others.

But I do think that two years of anything should be celebrated and I want to celebrate or at least recognize internally that keeping Autistic Lincs going for so long is an achievement.

Of course poetry can be written about happy times but my most prominent poetry was written during my depression days and the same can be said about Autistic Lincs.

Poetry and Autistic Lincs are both passion projects of mine and there is a certain element of each that I feel needs to be negative so I can use that as fuel.

My struggle has reached a place of peace and so I turn to the struggles of others creatively.

The same goes for Autistic Lincs and a glance at my Twitter and Facebook feeds reveals so many ups and downs and I am acutely aware that I am only able to document these due to my ability to overcome.

I can never adequately condense a week’s worth of news, a week’s worth of thoughts into one column but as long as there are authentic voices to speak out and we can all continue to have meaningful and productive community conversations then I’m halfway content….as always.

March 2020 - 2 Year Autiversary 

Somehow we have reached the two year anniversary (autiversary) of Autistic Lincs.

It’s occurred to me that every anniversary we have will precede April, which to millions across the world won’t mean much, but for the autistic community, this is not just another month. It’s Autism Acceptance Month. Autism Awareness Day. Autism Awareness Week.

People care about autistic people, hoorah!

My cynicism for the month is shared by many in the community because it seems that good intentions lead us to poorly executed ways of showing our support for autistic people.

It’s appropriate that as we reach the second year autiversary of Autistic Lincs, that Autistic Led, the adult support group run from Tonic Health in Spalding, has a new branch to its metaphorical tree.

The weekly woodwork group, which runs between 2-5pm, started last week with Andy Nicolson leading us in our first project; birdhouses.

We were shown how to slot various pieces of wood together without glue to get us familiar with the manual skill involved and understanding how it all fits together in a general sense.

We, or at least most of us, excluding myself, then repeated the wooden construction but glued the sides down to stabilize the nesting areas.

I tell you that most of us excluding myself because despite watching Andy every step of the way in the initial demonstration, I was completely flustered in a brain fog, totally unable in the space of about five – 10 minutes, to replicate what I had seen.

The new skill, the new yet established environment of The Willows at Tonic Health where Autistic Led started and the new faces in my life in one moment were all a little overwhelming.

 

Two years ago on March 11, a chance column called Autistic Lincs began, but on this particular Thursday, during the emerging woodwork group, it felt like the early roots of Autistic Led again except with more people on the periphery - exceptionally experienced people, but non-autistic as well, and it is a balance. I’ve yet to find, in terms of growing as a tribe, a support group, but maintaining autistic ownership.

I want the right people for the right jobs because any expanding group dynamic needs to manage that expansion effectively and it is no longer one man’s job (mine) to promote and facilitate a novel concept locally.

 

Autistic Led is also the sparsely recognized concept of autistic adults leading something themselves and I have always wanted the group to take ownership of what we do, and now I really feel able to ask for help. One man is not a community and although I feel like I’ve experienced a lot, learned a lot about my own autistic identity as well as the wider autistic community, I really want 2020 to keep us moving forward in a distinctly autistically led direction…but with a little extra gusto from those allies that are key to a truly unified community.

March 2020 - Empowered

Returning to Long Sutton last week for the mental health event at St Mary’s Church coordinated by Father Sibley, was a very interesting situation to find myself in once again.

I’d never been to this event before, but Long Sutton is where I grew up and into a confident man, and being surrounded by a community that had come together, specifically to connect on what ultimately connects us all, resonated with me.

In other news on an international level, April comes closer in the calendar and I am still approaching Autism Acceptance Month with trepidation but in equal measure, I have hope.

Hope that people like Greta Thunberg, for one prominent example, has served as an example to all autistic children and general onlookers that change starts young and that we are all capable of causing a shift, notably a shift of perspective and attitude towards the world that connects us all.

I do not want Greta Thunberg’s autistic identity to be used as an example but I certainly do believe that people in the spotlight have a social responsibility to act upon the needs of those who may otherwise be considered ‘beneath’ them or in other words, not in the same spotlight as them.

Social media titans, TV celebrities and everyone in between that are put on a pedestal of power should use it to empower.

I recently connected, via Skype call, with my beautiful cousin Nina Brazzo, whom I have never met but performed her own poetry, and spoke with me and Radio 786 host Rameez Cassiem whilst I was in Spalding’s market place.

I was prepared for a conversation but not necessarily at the time they called me but I adapted in the moment, despite several difficulties with the WiFi (affecting the Skype call) and eventually I indulged in what was an absolute privileged and extremely pleasurable interview.

Radio 786 is South Africa’s number one Islamic Talk Radio Station which prides itself on 3 words; Inform, Educate and Uplift.

These are the same qualities that I believe people on pedestals of power (to some extent with my column and as a poet, I place myself in this category) and I feel like this week has been a really enlightening one.

On Thursday, March 26, at Sergi’s Tapas Bar, I will perform once again as a poet and have an opportunity to speak my piece on whatever I see as appropriate to the set time I have for performing.

It will be my first live performance of 2020 and as I return to the place that I saw my own father, a key component of my transformation, in the same full circle moment that members of my support group Autistic Led followed me in, I am on a reinvigorated path to empower and enrich the community.

 

Tis April is much like the Radio 786 interview on the street. A conversation I wasn’t totally ready for but as an empowered autistic individual, as I am now, I definitely want to be involved in it.

March 2020 - Cogs In Motion

Last week, I wrote about how the coronavirus might be the catalyst our culture needs in order to look at ourselves in a different way.

I still believe that all of our lives are being put into perspective on a large scale but this week also marks autism acceptance month.

A month when autistic people in society are looked at and it’s time to put things in perspective on a large scale for us too. In past years, it would be World Autism Awareness week from March 30 – April 5 but I feel that this period of time has proven to be effective, if not most effective, within schools and the educational system as a whole. In the turbulent, transitional times we are currently experiencing, the educational system is at a standstill so the places and the tools with which we promote autism acceptance must adapt.

Enter the digital age.

There has already been a prominent presence on social media in past years regarding autistic acceptance month but there are a few days/events for those familiar with Twitter, that I’d like the world to take notice of.

April 1 AKA April Fool’s Day is being reclaimed as a time for autistic acts of kindness with the tagline #REDInstead.

The colours red and gold are far more favoured by the autistic community in opposition to blue, for example, because blue has a deep historical connection to the hateful cure rhetoric spewed by Autism Speaks. (Until now but we’ll get to that!)

The idea behind #REDInstead is to boost the community up rather than break each other down as April Fool’s day can be a really harmful event and excuse for people to exploit others ‘for a joke’ and mental health is no laughing matter and it matters how the words we use to describe people.

You can compliment someone, make a song or a post about them but it is my belief that it’s essentially about bringing morale up specifically for autistic folk.

The other day/event is using #AutisticGold and it is a coming out party for those that feel able to express their autistic identity confidently in order to show our numbers and that a proud and supportive autistic community does exist in a visible way to people that may feel alone.

I believe that this is particularly true in Spalding and its surrounding areas with Lincoln getting the lion’s share of focus on things, and that’s amazing for the county long-term but there are other areas in Lincolnshire and ways that we connect those places (previously via public transport before this current state of things) that are lacking.

But again, we adapt.

 

Check out Yo Samdy Sam on YouTube for some fabulously informative videos on all sorts including functioning labels and why they hurt us and the days/events in April.

And to mention adaptation is appropriate because the world has brought us an incredible shift of focus and that is the idea of Light It Up Blue.

I’ve written about the importance of autistic voices speaking over people that speak for us and it fills me with hope, excitement and pride that despite the tragedies of the world right now and the turbulent, transitional times we live in, the NHS can shine through and be there to support us all. It appears that Light It Up Blue is gaining a lot of attention as a way to respect the efforts of the NHS and I am all for it as that cause is something worth celebrating and protecting the integrity of.

Whilst Autistic Led and so many other groups in the physical sense has come to a standstill, that doesn’t mean that we as individuals are at a standstill.

Cogs of change are very much in motion.


April 2020 - Crises Precipitate Change

"Conditions on the unit are very difficult. The combination of masks, gowns, goggles and gloves make communication difficult. The environment is noisy. The ungainly dress means that they feel hot, sweaty and uncomfortable.”

The words from Intensive Care Consultant at Lincoln City Hospital Matthew Dolling’s piece hit me hard. He describes his own hospital’s environment but it takes on a different meaning for me.

What about autistic people’s experiences during this time and, in fact, any other time during Autistic Acceptance Month?

When bridges of communication between autistic people and healthcare professionals can already be challenging to cross, times like these reflect more than ever a need to break free from the viral ignorance and stigma that still infects society and breathe the fresh air of a new reality.

Matthew Dolling has amplified my own thoughts on how this ‘never event’ (a term I will chat more about in the next few moments) will be a quarantine for our cultural consciousness and I am immensely thankful for his openness regarding those on the frontline.

The noisy environment that Matthew refers to is nothing new for autistic people who have their sensory processors tested daily but the hot, sweaty discomfort alluded to is sure to be more pronounced in situations wherein healthcare professionals are working with autistic people.

Andrew Meyerson, a junior doctor working at Worcestershire Royal hospital has had some very damning words for Prime Minister Johnson recently in January 2020 and last year in December 2019 (articles on The Guardian website).

He effectively blamed our current Prime Minister and his party for the predicament we are entrenched in at the moment and I am not filled with joy when I think about the Conservative party but I try extremely hard to sit on the fence, just like I have with the National Autistic Society in the past.

I do not hate the National Autistic Society or the Conservative party, as I do believe that there are good people within otherwise badly operating entities, but it is despairingly upsetting to know that powers to take action and change narratives have been consistently wasted.

So much damage has been done, however my resolve to create new autistic futures has been strengthened with these societal failures and, as mentioned last week, we will heal, and it is a cruel twist of fate that has our society united and perhaps more in tune with the beat of an autistic’s drum than previously conceived.

We have to communicate and connect differently with our loved ones.

 

We have to keep ourselves occupied differently, using the same technological tools many criticise others for relying on like the games consoles to bring us closer together in the lingering days and nights.

We are forming routines with the one hour of exercise that the Government recommends to give that necessary balance and chill out time.

I remain optimistic in the outlook that whenever the dust settles, we will recognise that we are more alike than we realised before.

We will reflect on these transitional times and see new images of the world we want to see.

Crises precipitate change.

April 2020 -  Vulnerable

In a world where people are fighting for life-changing diagnoses, I am one of the privileged.

I received my diagnoses of OCD, Gilles de Tourettes Syndrome and the rapidly vanishing diagnosis of Asperger’s Syndrome at 21-years-old which is late when placed in comparison with others but in these transitional times, I am part of a community that the Government has relaxed guidelines for, in relation to the daily exercise.

I face a strange situation, not the virus itself, but because of it. It is an uncomfortable situation for me as I have been reassessing my place in the autistic community and my cycle of needs.

I am confident enough now to talk openly about my autistic identity and engage in conversations with crowds (via poetry most prominently) but 14-years-ago when I was half the age that I am now, the way my conditions were viewed, my personal environment and my associated needs were very different.

So, in a way, the fact that an autistic identity isn’t going anywhere does not make it any easier to feel like your needs are still valid in an environment where you are acutely aware of others’ struggles. Quite recently, I have been thinking about vulnerability and victimization as a result of not seeming vulnerable.

The old functioning labels rear their ugly heads but just as they do, I vanquish them from my self-consciousness and avoid feeling guilty because I remind myself that I am worth it and deserving of ‘exercise’ which for me, means going outside for walks and breathing space.

I think that really captures the thoughts I’ve been having and I’d like now, in a somewhat connected way, mention Lincolnshire Police and Bourne Gateway Club; specifically the Feel Good Party.

Lincolnshire Police had their Facebook live question and answer session. and, after writing about how digital platforms will thrive in these conditions, it’s especially valuable to connect with the forces and key workers supporting us the best they can with the tools they have.

Another valuable service, in my mind, is the service of smiles. These, to me, include those services including arts, entertainment and they often exist within a community. Bourne Gateway Club host a Feel Good Party (Facebook Watch Party) every Monday to fill the gap left by their previously regular meet ups.

It’s full of fun, music, comedy and chatter and has often preceded the David And Christina Show (radio) which is another outstanding resource in these transitional times.

In conclusion, it is okay to be vulnerable because you can also be a victor in these transitional times. We all exist in a cycle of needs which varies throughout our lives.

I have a poem I’d like to share on the subject of vulnerability to end this column.

People used to say we were locked in.

Now we're in lockdown.

Making us reassess everything we've got now.

Doesn't seem yet like it's stopping.

So how do we spend the time

We have wasted before

Pretend that we're fine?

Mental states to ignore?

Perhaps that's a sense of the kind

Of culture so vividly

That we have fed;

Let's avoid vulnerability.

Far removed from men

We all want to be strong

But perhaps what we do is mend

So that in community, we belong.

And not all who are wandering on

Are lost souls, dismissively

We have to embolden stories to be told

Embrace the vulnerability.

And so slowly we will evolve as true reflections of human beings

Cease the moulds of mimicry

Shape keys to break free from shaming

The vulnerability.

June 2020 - Reintroduction To Yourself

As I have written before, diagnoses can matter for all kinds of reasons but even when you see autistic-led content that changes your perspective on autistic identity, and it is the difference maker in your life, that doesn’t mean the journey is over.

I wrote how diagnosis and overlapping diagnoses can be the introduction, or reintroduction. to oneself.

That really is true because there are individuals out there who have lived 50 years unknowing of their autistic identity and often have to reprocess parts of their lives, piecing it back together in a new light.

 

But even when someone can signpost others and themselves to why their brains operate in certain ways, it doesn’t mean they have internalised their experience.

Being autistic is still a journey and it should be treated as such.

And autistic people can still make questionable
decisions. Giving a platform to those in the autistic community with either links to harmful practices/ideas etcetera or those that are outright harmful to the community is a double-edged sword.

I would rather create dialogue before confrontation in these situations but I know that others choose the direct approach to telling people how they feel as individuals or as a community.

Supporting ABA, the bleach cult and anti-vaxxers is not something I can support as an autistic individual.

But I know people that have been passive or are passively providing spaces for people due to the ideas of free speech and freedom to associate with whomever or whatever they choose.

It’s a double-edged sword because there are people who are counterproductive to helping the autistic community but have done positive work too.

For me, it’s about a mixture of exposure to authentic influences (not exclusively autistic as we have some incredible non-autistic or neurotypical allies in the community) and the tools to enable informed decisions and discussions.

Now, some people are beyond change due to generational ignorance (people who might have grown up in times that had limited autistically authentic information) so it wouldn’t be fair to blame them for not having the tools. The journey may vary but it is always autistic-led…but even autistic people needs positive influences and tools to move forward.




June 2020 - Repurposing Education

Home education continues whilst others return to school, an autistic naturalist has their book read on radio, a woman in America has been charged with attempted and premeditated murder of her son, and it’s Autistic Pride soon (online).

How do you organize the feelings and events into one digestible portion of writing?

Where there is life, there is death and it cannot be avoided but only grieved for, internalised and utilised for other purposes.

This is the approach I have to the weekly, even daily onslaught of positive and negative news that we as Spalding people, we as people of this earth we are fortunate to have inherited, digest.

The education system hasn’t resumed for a small amount of young children because it never stopped. It’s a lifelong process and the emotional resonance of these times will seek to bring about newly enlivened people, grabbing life with a tighter grip than ever.

You can lead a horse to water but you can’t make them drink. We are the horses with our animalistic tendencies to fight, to discriminate against one other, to dominate each other.

The same animalistic tendencies that turn us wild are caging us in our egos, our little worlds where ignorance is bliss, cruelty is king and complacency kills.

What all this means in translation is that we need to wake up and see, if we don’t already, the changing face of a world that we have damaged. Sacrifices have been made a thousand times over but with deaths like George Floyd, The Stauffer controversy and, this should be teaching us something.

Racism, ill-preparedness to adequately support, exploitation.

These issues are triggering for many people but are omnipresently permeating our collective worlds and this is a game of cultural Russian Roulette.

How many triggers are pulled before we shoot?

 

I can only hope that we internalise these experiences and experiences yet to come and utilise them to repurpose our society.

Autistic Pride is being organised online and in light of the court case alluded to above.

A community united by oppression, suppression, depression wanting to make an impression on the world.

Because the autistic community’s spirit is something to learn from.

It is one of resolve and those strong enough to rise up as empowered people that can also empower others are encouraged to do so at a time like this when we need to lead our world differently and at the same time, reclaim our communities and reclaim ourselves.

June 2020 - Specks Of Pride..?

By the time this is being read in the paper, Autistic Pride will have finished and the event I shared last week would be over.

I hope that it will have been enjoyed by more people than ever, live or after the fact.

But already I am left wanting more.

An autistic pride event for Lincolnshire but I don’t know when or how that would happen.

I know that the CoVid Kindness Team in Spalding has been nominated for a Pride Of Britain award and this is incredible.

From the autistic community, in which many have been deeply affected by these transitional times, to a team of individuals that have effected so many during the same transitional times.

The autistic people’s causes for concern, such as the big charities like Ambitious About Autism co-opting our autistically homegrown celebration, haven’t been so prominent this year (that I have seen) but the injustice is still there.

Injustices spread across the black community and all communities alike.

And in spite of these issues, some that rear their ugly head in April, some at the time of pride events (June) and some that are omnipresent, the CoVid Kindness team in Spalding who in my knowledge are not autistic themselves have shown us all what community spirit and proactive action can achieve.

It’s great symbolism for unity between the neurotypical and autistic communities because we have ALL been affected by the virus and this collective cause created an effect.

We should all learn from these people.

 

July 2020 - TBC



August 2020 - War On Motherhood

Andrew Wakefield’s new film 1986: The Act tells a story that once again conflates the autistic identity and injury.

I believe that it launched about a month ago but I only saw it in news just recently and it seems to lay down another barrier to acceptance for the autistic community; maternal intuition.

I readily and fully admit that I cannot speak as a mother but as an autistic individual, I have had enough of people putting autistic people in the same category as ‘vaccine-injured.’

 

I have had enough of the rhetoric that people in my community that speak up against this errant grouping of autistic/vaccine-injured are called ‘high-functioning’ and cannot speak for others’ experiences.

I have every right to be angry at people who use ACTUAL diseases and current pandemics to push their own hateful bias towards a massively under-utliised, grossly underestimated and criminally tortured community. CoVid-19 has killed people and others in this world have the audacity to get on a pedestal to claim being autistic is an ‘injury?’

How dare you.

I am not for one second assuming in naivety that governments and pharmaceutical companies do not make mistakes and that injuries do not occur but to combine such serious problems with a different brain wiring is preposterous and further adds fuel to the hatred and isolation burning autistic people’s self-esteem.

Long gone is the ‘refrigerator mother’ theory (although perhaps it is more likely to have just been hidden in society’s microcosms) but the idea of maternal intuition or ‘mother knowing what’s best’ is a dangerous precedent all the same.

In the refrigerator mother theory, meaning that mothers didn’t love their children enough therefore being autistic, the blame is squarely in the mother’s court.

With mothers being told in this film and likely around the world that with them ‘knowing their child’ and knowing when something is ‘wrong,’ it puts the control in the mother’s court and that is not always a good thing when you don’t have the depth of knowledge to know what you’re looking for.

 

No, I don’t mean that being autistic is a ‘thing’ to look for but people can create false narratives based on their exposure to certain influences.

And a mother that is either within the generation of people that was influenced by Wakefield back then or has grown desperate in these recent yet transitional times of CoVid-19, will be easily led astray.

 

I do not blame being for being desperate in these tense times for autistic people with routines still being broken or worse still being made again after a break and having anxieties about getting back to ‘normal’ but compassion and authentic voices from the actually autistic community are more effective than what is proposed by the anti-vaxxers and bleachers of this world.

I am desperate in my own way to rid people of this ‘grieving’ process that I have heard and read about before when a child is diagnosed autistic (diagnoses are not death sentences) because it is far more effective to use what you have rather than mourn for the standards you thought you’d have.

Standards of living ‘with autism’ as opposed to being an ‘autistic person’ that damage self-esteem and promote messages of ‘other.’

Standards that say that it is necessary to maintain eye contact when it is painful to get ‘rewards’ ala ABA.

Standards that say you cannot or should not stim (self-stimulatory behaviour) to regulate your sensory needs/feel good/relax because it isn’t what others do.

Films like the one mentioned above set dangerous precedents and set an awful example to the autistic community.

The neurotypical allies within the community that are helping in the right ways and maybe, just maybe, the people with every justified desire to get someone ‘cured.’

Someone that actually needs it.

August 2020 - Contactless 

Education isn’t static or confined to a box.

But you’d think that with the image I’ve seen of children in classes with box-like structures over their heads.

I can’t help thinking about Sensory Spectacle.

Who, you ask?

Sensory Spectacle is an organisation that seeks to educate us, the general public and people with sensory processing differences alike, on our sensory system.

I remember being at The Autism Show (billed as The National Event For Autism which is not a belief I am aligned with) but at the show/conference that had stalls and speakers and resources all over the place in three separate locations, I was fortunate enough to lend my support to the running of their stand.

They had a box of sorts that went over your head with the purpose of giving you a sense (pun intended) of what having a sensory processing difference might be like.

You were encouraged to take various tests under this box with voices reverberating around the box as well as a noise cancelling effect (I believe)

I write about this because of the subjective matter of ‘isolation.’

The image, to the unknowing, may look like an isolated situation but by utilising an immersive experience like Sensory Spectacle did with me at the conference, you can come away feeling so empowered about the needs and desires for those with sensory processing differences.

I spend time at school in an area called Isolation (I am not aware of whether it still exists) but for someone like me, a shy autistic child, this was a refuge for my thoughts (and procrastinations, I’ll admit, though the root of it all is one and the same).

So I do not fear the new classroom experiences as many others, however, I do certainly believe that if you have a basic human desire for physical contact whether it’s hugs or groups in classrooms removed, it’s bound to wind people up.

And yet some places are saying ‘cash only’ which makes absolutely no sense to me regarding bacteria but that is my case in point.

The desire for connection is undisputed but it is what you are connecting over that matters.

Money. Perceived communication norms of the majority. The idea that someone is lonely because they are alone.

As the world prepares for contact with a new educational environment, it is all the more contactless.

September 2020 - Six Degrees Of Separation

Does the rule of six people socially gathered together mean more, less or the same to autistic people as it does to others?

The simple answer is that it’s a variable outcome dependent on the individual and their situation.

For me, my life is largely unchanged.

I’ve always been a loner.

How have your experiences been so far?

Of course, schools and colleges are re-establishing themselves and it is still imperative to our culture that we remember that there are different starting points.

An autistic person’s anxiety, adding in the social and sensory layers of this, is likely to be much higher than a neurotypical person’s at this time. And whilst I am personally okay with distance from people (where I can help it), the bigger picture for many of us are not.

Autistic people WANT community.

Perhaps more than others due to the systematic oppression we endure daily and how hard we have often had to fight internally as well as showing the observable signs of struggle such as depression, bullying and such hallmarks of the narrative we commonly live out.

And now people want to get on the bandwagon of ‘masking…’

(For the record, that was a pun. Masking is a very serious issue)

How do you apply the rule of six to a group of 12? Do you break the dozen up interchangeably? Instead of a postcode lottery, it’s a participation lottery?

 

Being able to choose friends is a privilege in these times and I suppose that all one can do is to offer the lottery numbers to the bidders; first come, first served.

What if the people who get served in the participation lottery include someone you really don’t get on with? I can imagine a constantly evolving social dynamic in such a situation and this can be positive in that you get to meet new people but also an anxious time because of the quick changes.

That’s if you don’t have to remain in a given social dynamic to keep everyone safe and secured rather than flitting between people.

What if smaller groups work better for autistic people? As I mentioned at the start, I’ve always been a loner or more accurately, happier being alone than others.

That doesn’t mean that I don’t want community and in fact, I really do enjoy it and having a controlled number of conversation partners, coupled with enough space to roam and pace, would suit me fine.

There are multiple ways of being together and ways to be alone but not lonely.

Indeed, this is the rule of six but the social game is played tenfold.

The game is Six Degrees Of Separation.


October 2020 - Gaming Reality, Real Outcomes

What about uni/college resources for modern times?

University and college students are back and adapting to the transitional time of the Coronavirus in various ways we have yet again demonstrated the effectiveness of virtual reality. That isn’t just about headsets.

The gaming community has risen to a new prominence in recent months, as if it ever diminished in value, but there is one particular community called Spectrum Gaming which has excelled.

Chris Packham.

Andy Smith is a young autistic man in Bury who created the community for autistic gamers in response to lockdown and it has grown incredibly well. Members can share their own content, engage in Minecraft and Fortnite competitions (for example) and make friends.

 

He is doing tremendous things for the autistic community and recently appeared at an All-Party Parliamentary Group (APPG) session online and talked about masking and the importance of self-acceptance within young people as highlighted as a theme of conversation through interaction with the members of Spectrum Gaming.

It feels redundant to chat about these issues again and again but masking and self-acceptance are omnipresent topics and by having dialogue in these kinds of moments is crucial. It is also using up autistic people’s mental energy to put ourselves in these vulnerable and brave positions.

Spectrum Gaming has, by nature of its existence, worldwide potential and options like Open University courses (online) but bringing it down to local level, I wonder how our educational environments will adapt.

Chris Packham made an interview video for the University of Lincoln in 2018 about his university experiences which I find to be insightful (though his comment on needing to make eye contact doesn’t sit well with me), but rather than analyzing pieces of it, I do acknowledge the power of his interview as a whole.

Chris has been to Gosberton House School too and for someone of his acclaim being so involved in not only two mainstays of the local community, but established centres of information that contribute to discussions around the autistic community, is empowering.

People like Andy and Chris have something in common.

Vulnerability. Autistic people giving back to their communities such as these three examples put their spoons (representation of energy needed for tasks) on the line for a greater good and we need that kind of open representation in universities, colleges and the like.

 

If you are having to return to the physical aspects of education, self-acceptance is essential which is bred from a culture of openness.

The amount of autistic people that have not disclosed their diagnoses or feel the need to hide in general is shocking and whilst I don’t advocate for people to disclose if not ready, a shift in culture would enable and empower more to do so.

In the meantime, we need to recognise and utilise the virtual realities we have long been apart of, as they undeniably have very real effects on the health and wellbeing of autistic people and neurodivergent people at large.

October 2020 - Tiers And Tears

I want to first give some direct praise for all the people at the Lincolnshire Free Press but mainly to the autistic community - I’m honing in on planning, organising and, well executing things.

In this world, that means deadlines. I am extremely grateful for flexibility in this regard. Somehow, I always (just) about get things done. And this leads to a wider sense of gratitude to the NTs (neurotypical) people in my life.

Now that’s out the way, let’s chat about the presidential debate in America!

Nah, let’s not.

In my mind, it’s all talk until you start to act and I have been outspoken about my dislike my Donald Trump and his associates (disgraced doctor Andrew Wakefield.)

I was at the Trump protest in London which, unless you’re a non-believer, isn’t going to happen anytime soon, and as I mentioned then (The Right Slice Of History, Autistic Lincs, July 16, 2018,/Life Is A Box of Chocolates, October 15, 2018) I come from a place of passion when I explain my reasoning behind the lack of support I have for him.

A history of oppression can shape a person and you see that in the online communities. Bitterness can get in the way of unifying the different voices of our communities. Against parents, against our own.

And with conversations flowing about flu jab vaccinations, it’s a ripe time for division (not that I believe the desire for division will ever stop).

The question isn’t ‘what is best for our children/autistic people? etc, but more ‘how do you communicate your message?’

The political climate is as tenuous as the environment and as the film released by now I Am Greta proceeds as a self-defining piece of Greta Thunberg, an autistic activist that I have also written about (Tip Of The Thunberg, Autistic Lincs, September 23, 2019), we must also choose how to define ourselves as politicians seek to put their name on whatever they do with the United States, and by association, the UK and beyond.

The tier system may be for the coronavirus but the panacea of our times will be love and connection.
And we will all rise up.

November 2020 - Investments

People are getting desperate out there. Nothing but chicken nuggets out there to cure the autism!

A quick poem I made on the matter:

Vax or fiction?

 

Fuck it.

Let’s all get chicken nuggets and be cured

from autism’s luggage

Weighing us down.

Ronald McDonald’s been making us clowns.

Sad acts of society!

Meanwhile the doctors under attack;

Amet, Wakefield…and Elle Mac

Hell has no fury like

Spurious quacks.

Don’t serve me ass burgers

You’re the meatheads here.

And let autistic neurology be of authentic quality

Whilst you breed and spread fear.


(article here via The Mirror and autistic advocate Emma Dalmayne: www.mirror.co.uk/news/uk-news/self-styled-210-hour-autism-22937387)

Jokes aside(or not in some people’s minds), it’s really unfortunate that we are having to go into another lockdown, not least because it’s a sudden change and lots of autistic people struggle to manage. It’s like being in darkness, seeing the light at the end of a tunnel, only to succumb to darkness yet again.

Autistic Led, the autistic adult peer support group emanating from Tonic Health in Spalding, has been affected too.

But our diverse network of communication, I think, keeps us going. If there was only one way to connect, IE physically, we would be screwed on multiple levels even WITHOUT COVID-19.

Expecting autistic people to enjoy socially gathering with lots of people isn’t
always realistic.

Expecting autistic people to WANT aloneness is always realistic.

Expectations from whose perspective?

But whilst our world’s inevitable illumination, I believe, isn’t shining for us right now, this is merely a prolonged incubation period for those kinds of conversations that we need to have.

When backed into a corner, into awkward situations, equally awkward conversations can begin.

As I’ve mentioned before, when lockdown was deep into our collective consciousness, it would be unsurprising for previously ‘hidden’ autistic people to unmask.

Stress and anxiety rise to a new baseline for many autistic people whose very existence is challenged from the start (undeniably) with myths that are perpetuated and so people may seem to ‘act out,’ act ‘more autistic’ or ‘regress’ but this is just an extreme version of the Coke bottle effect.

This is precisely the time for compassion, connection and tangible change for the world we do want.

I cannot imagine the pressure on those in charge of leading the country but this is a crucial tipping point in terms of narratives to ditch off the cliff and for other narratives to ascend into prominence.

The spectrum of services that is the mental health system has never needed such robust investment. Without a penny being spent.

Intangible changes in how we approach and connect with autistic people. Greater across-the-board communication in relation to what being autistic is, the cycle of needs involved and overall more autistic input into the systems that concern us.

This is, of course, a work in progress, but I would like to make a column on the vastness, the history of mental health in South Holland and the lessons we may have learned to show in visual format, perhaps just how far we’ve come, what we got right and wrong, and how far we have to go.

Until then, do get involved in the linked groups, pages etc that I share because I think many of them are invaluable (not self-promotion)

The countdown to Christmas begins…




November 2020 - Who Speaks The Loudest?

There is a conference in Lincoln next week hosted by the charity PAACT (Parents And Autistic Children Together).

Rainbow Stars, a charity in Sleaford, has launched a new website.

What can Spalding learn from these more established charities and areas?

 

An autistic-led conference? A pride day was once on the cards but now perhaps it would be unwise to have the typical street version of a pride day... but perhaps it would serve autistic people to have an online conference instead?

We’ve seen with Autistic Pride events on a larger scale this year that online is a valid way of connecting with communities.

Of course, there are exceptions to the myth that autistic people automatically prefer being online as opposed to physical connection with people.

In my personal life, I look past Christmas because I’m not keen but I see the gifts in every day, as I’ve no doubt that millions have seen these last few months.

PAACT is popular with Lincoln folk, I believe, though I’d like to also mention CANADDA, a Lincoln-based organisation with an autistic person at the head.

As I look at the list of speakers for the event spanning Monday to Friday this week, I wonder about who you, the reader, would have if you could help to create the conference:

Geoff Evans – Monday, November 16: ‘What works when supporting autistic children and young people?’

 

In this presentation, Geoff draws on more than 36 years’ experience of supporting autistic children and young people and their families to outline what he believes works when supporting autistic young people.

He argues that underpinning all we do is an understanding of how
autism impacts on the individual, listening and learning from the autistic person and those who know them and a willingness to use all the ethical approaches and resources available.

 

Andrew Whitehouse – Tuesday, November 17:‘Diagnosis: Will it make a difference?’

For this presentation, the SEN consultant will discuss the pros and cons of gaining a diagnosis for children with neurodiversities and in particular autism.

Clare Truman – Wednesday, November 18: ‘Supporting Siblings of Autistic Children’.

She draws both on her personal experience and her experience of helping the families of her students in this talk.

She believes that growing up alongside an autistic sibling has been a positive experience and she will highlight these positives while also providing practical strategies to address some of the challenges that siblings of autistic people may experience in day to day life.

Rebecca Duffus – Thursday, November 19: ‘Small changes that make a positive difference to our autistic students in the classroom’.

In this presentation, Rebecca explores the underlying potential differences for autistic students in the classroom and suggests small changes that can support young people to access the curriculum.

Paul Hughes – Friday, November 20: ‘Osama, Obama and finding Nirvana…Special Needs Required!’

A journey of self discovery and an appreciation of having a different way of thinking and being to the norm, which in reality has given me a great advantage in life!

Hop onboard the Paul mindset bus and discover the real you!

Similar to my question in a former column about which charities/organisations have made the biggest impact, which voices in the community have spoken the loudest to you?

 

November 2020 - Wait And Sia

Self Care Week has just passed and like many other weeks, months and days to celebrate or recognise events, conditions, causes etc, it merely acts as a reminder of a bigger, more consistent purpose.

Self care doesn’t just exist and go away in the space of the week but it draws attention to the fact that we should engage in self care.

 

Now more than ever, as the Christmas countdown begins soon and the Spalding Festive Market looms, it’s a time to have compassion, connection and collaboration in our community.

What ‘self-care’ looks like will vary for all of us but for me, it’s being able to pace around my living room, flap around repeating phrases or words that currently appeal to me.

Little things that make a big difference.

As I am admittedly hastily putting this column together, my disorganized brain is validated in a way when I stumble across a new film by pop star Sia on Twitter.

Oh, beloved Twitter.

The film seems to be about a young girl called Music who, you guessed it, enjoys music.

Based on the online teaser I have seen, I am assuming that music is going to be her most prominent communication tool (aside from Augmentative Alternative Communication or AAC which can be things like text-to-speech apps).

This is intriguing and whilst the crowds are, of course, split, I reserve judgement until actually seeing the film when it comes out in February 2021.

 

Having typed that, I do think there are some principles for those making films ABOUT autistic experience that are best practice when it comes to authenticity and here is one that stands out:

Engage the autistic community; it is out there.

 

Twitter is a great example with its hashtag #ActuallyAutistic, #AskingAutistics and the Sunday #AutChat which are all rooted in connecting the autistic community (though I do not believe that tangible change for any community can happen in isolation).

Facebook has some fabulous crossover groups like Autism Inclusivity, a massive parent/autistic adult group which is autistic-led in terms of moderators and seeks to educate, empower and ultimately bridge the gap that does exist between parents and autistic people.

Finding the right person for the job is something I believe in from personal experience but it is poor-sighted to merely assume that no autistic people are good fits for the job, acting or otherwise, lest we forget the principle above.

I have known autistic people perfectly happy to be doing their own thing without feeling the need to protest against bleach enemas, ABA and that horrible ilk.

It probably seems like a big leap from acting jobs to bleach and ABA but the overlap here is that we USE the ARTS to inform the public.

We gather information and distribute it through our chosen art forms and this is both a blessing and a curse.

Indeed, if we have gathered information from a certain perspective, such as the anti-vaccination community, this will harm our subsequent perceptions of the autistic community at large.

This topic could be broken down much further, I’ve no doubt, and I welcome your thoughts but my main question at the end of it is thus:

Will Sia’s ‘cinematic experience’ called Music, based on her neurodivergent friend, which casts a non-
autistic person as an autistic person, be a small crack in the ice to more productive conversations around the autistic community or will it bury the autistic truth beneath a shiny yet superficial layer of Hollywood misrepresentation?

We’ll have to wait and Sia…


An Autistic Christmas - Collaboration with Tierneys Gallery - See our Collaborators for the STORY and COVER IMAGE