March 2018 - Autism, A Human Story


Autism. Heard of it? Probably. I can tell you for a fact that being autistic is about neurological wiring; It’s all in the brain.

I could tell you that, according to the most recognizable charity for autistic people, there are about 700,000 autistic people living in the UK andI could tell you that 34 per cent of autistic children think that the worst thing about being at school is being picked on.

Some 63 per cent of autistic children are not in the kind of school their parents believe would best support them.

And 17 per cent of autistic children have been suspended from school; 48 per cent of these have been suspended three or more times; four per cent have been expelled from one or more schools.

Some 70 per cent of autistic adults say that they are not getting the help they need from social services. And 70 per cent of autistic adults also said that with more support they would feel less isolated.

At least one in three autistic adults are experiencing severe mental health difficulties due to a lack of support. Now, for those with an autistic person in their lives in some capacity, you will probably know the charity that states those numbers. But I am not writing about charities here.

That can be saved for another time.

However, I am writing about life as an autistic man and, besides, what do those statistics really mean anyway?

There’s nothing ‘missing’ from these people but we are missing OUT on the potential of these people and that’s a real problem that we can all understand.

Autistic people can experience this otherwise black-and-white world with a rainbow filter.

We can feel, hear, touch and sense the world and those around us in such high intensity that sometimes we need to turn down the brightness.

 

The brightness of our rainbow filter that colours our senses, our emotions and our lives. Some autistic people do not need a rainbow filter because they are happy with the hues of their existences. Happy with how their lives are filled in.

Life is a canvas and we all explore and paint individual meaning onto it. We may be in a technology age but don’t think autistic people are robots.

I have been too scared to leave my house due to anxiety. I have been on anti-depressants. I have been between educational psychologists and the SEN unit and had to leave mainstream school because I was deemed a mainstream failure.

All because I was misunderstood and bullied but I have never been a failure. I am a successful and complete human being as are other autistic people if we take the opportunities to connect and practically support these people to reach their potential.

We don’t need your fake cures. We need to be embraced and accepted. In my community, there’s a saying that goes ‘Once you’ve met one autistic person, you’ve met one autistic person.’ Nice to meet you.

And if you don’t have any autistic people in your lives in any capacity then what does it take to achieve this acceptance and fully realized potential?

Well, of course, it’s all in the brain.


March 2018 - Past And Present

This is history.

This is history because I am the first autistic author to regularly feature in this newspaper…but why does that matter?

You’ve heard a little bit about my story about how I’ve risen above depression and severe anxieties that kept me from leaving my house.

History has shown that people like me don’t get a voice despite having one and THAT is the most important point to make here.

We have a voice.

The autistic community can communicate with you if you choose to expand your definition of communication.

When I didn’t speak much, poetry was and still is my most prominent form of communication and we have to work towards finding that absolutely necessary outlet for everyone.

Now, some autistic people are non-verbal and therefore people can assume incompetence and automatically turn to ‘baby talk’ but this is insulting to so many people and I do not advise this as a productive way forward.

If a non-verbal person is grabbing your arm, and you or others around you perceive this as aggressive, think of it as communication rather than ‘challenging behaviour’ because they are likely to want something or maybe they are stressed from having to manage their rainbow filter of sensory input.

Explore ways of discovering and harnessing that desire to communicate an unmet need or a distressing sensory aspect of this world that, quite frankly, most of us take for granted.

Sensory factors such as the bright lights of a school hall, the loud noises of passing traffic and the rough surfaces of walls can all form the rainbow filter that autistic people often experience life through.

We can communicate our dislikes as well as our likes in various ways. We may dislike the bright lights of a school hall and therefore be unwilling to enter it. Purchasing dimmer switches, considering different entryways to the hall or investing in stress relievers to fidget with or squeeze are some possible solutions.

For those thinking about the cost, it doesn’t always take a lot of money to make a big difference. Let’s challenge OURSELVES to think differently. Whether it’s via sign language, Makaton, dance, poetry, Lego, snakes, trees, animals, trains: whatever it is!

Autistic people are deeply connected to the world. It is often others that are disconnected.

Practical solutions are crucial if we are to truly implement autistic people into our world and so I welcome correspondence with the readership so I can actively support your circumstances.

This is a conversation.

We must move forward into a world full of robust definitions of communication and, rather than rely on a single voice, create an orchestra of voices in harmony with what is best for the autistic individual. And whilst it feels great on a personal level to be a new version of myself, I have written my history.

My path has led me to embracing myself and others in the local and national community as a collective, collaborative and communicative unit.

It is time to enable others to tell their stories however they choose to tell them.

This is the future.

March 2018 - Politics And Power Plays

Before I properly engage, I have to thank those that enjoy and appreciate this column and made yourselves known to John Hayes and myself last week.

Moving forward then, regardless of your political persuasion, politicians are in a position of power to act in the interests of autistic people and can enable and empower us to tell our stories, and we have already established that we have stories to tell.

In our previous conversation, I mentioned our community’s necessity to be a collective, collaborative and communicative unit and that could not be more appropriate this month.

Over March 28 and 29, I join my ally in Parliament as we celebrate a long overdue report on the ‘fake cures’ touted for autistic people and participate in a peaceful protest.

First, let me give you some background story.

Allow me to colour your filters.

My autistic allies Emma Dalmayne in London and Fiona O’Leary in Ireland have worked tirelessly to criminalise the people behind these virulently counterproductive ideas at best and abusive cults at worst in the UK and worldwide.

Emma and Fiona along with their families have been targeted online and offline by people that actively promote debunked theories about vaccines ‘causing’ autism (they don’t) and a whole range of foul fabrication and injustices such as bleach enemas, stem cell therapy, holding therapy, hyperbaric chambers and blood products.

If these mean nothing to you then all you need to know right now is that they do NOTHING for us as autistic people.

Do you remember when I wrote: ‘I am not writing about charities here. That can be saved for another time?’ (Autism: A Human Story, March 6)? The time’s now to address one particular charity and that is the National Autistic Society (NAS).

For five years, the NAS has refused to acknowledge the scale of the abuse of autistic babies, children and adults and failed to use their position of power to criminalise these people. That, in itself, I think is criminal. The peaceful protest I alluded to refers to the victims of Mendip House, which was a terribly mismanaged care home by The NAS.

Recently, The NAS emphasised with Emma and Fiona’s plight and made a commitment to banning the worldwide scale of abuse of autistic people. Emma and I will be there to ensure that we will not be forgotten again and move five years forward from the moment that The NAS agreed to utilise their position of power.

I do not ‘hate’ the NAS.

Their support enabled me to get formally diagnosed, which transformed my life.

Generations before us have made mistakes.

Mistakes in understanding autistic people’s communication.

Generations with the best intentions before us have committed injustices.

Emma’s charity Autistic Inclusive Meets (A.I.M.) is THE ONLY charity that is effectively doing anything whatsoever about all of this and, at the time of going to press, is the only charity I support.

But make no mistake, our current generation, and generations to come, are in a position of power, not to sit idly by, but to act.

April 2018 -  Awareness And Acceptance Part 1 

This week was World Autism Awareness Week (March 26 to April 2) with World Autism Awareness Day tomorrow (Monday) as well,

You will probably read a lot about Awareness Days, Autism Hours and Autism Friendly Screenings.

Last week we discussed positions of power and utilising those positions to realise autistic people’s potential and do what is in their interests.

Over the course of our column so far, we have established that autism is in the brain, not to be cured, and that being autistic is a spectrum of communication. It is with these principles in mind that I hope to empower you and guide best practice on how to maximise your World Autism Awareness Week and Month.

For younger autistic people, it is imperative to nurture a positive sense of identity and this means working WITH what may be seen as an ‘obsession,’ for example, fish; and getting the most practical use out of it. You can count with fish therefore opening a path for mathematic skills. You can decorate cardboard fish (or any other material), therefore opening a path for artistic skills. You can place social situations within the realm of a fish tank, therefore opening a path for social skills.

To reiterate a point in Talking About Past And Present (Free Press, March 13), rather than shaming them because of what many see as narrow-mindedness, it is about putting emphasis on productive ways forward embracing the tools of communication that autistic people more often than not can give you.

Of course, younger people grow up and for autistic teenagers, it can be daunting to be in a world that the majority does not see through a rainbow filter. Entering adulthood, we may feel scared of, overloaded with, the world and all its sensory and social chaos. That’s why we need to feel safe.

If we don’t look you in the eyes, it can actually be because it is physically painful for us.

At home, if we stim or have a ‘self-stimulatory’ behaviour, it is normally completely safe and natural and in cases where, for example, we are banging our heads against a wall to regulate our sensory world, perhaps replace a wall with a pillow or redirect from the offending environment.

In public, explain that you are here to help and ask ‘What do you need’ or something similar because at this point, we are probably already overloaded with our rainbow filter and we would rather not have social norms to ‘act normal’ imposed upon us. These norms invalidate our autistic identities.

A quick note about autism-friendly screenings. These are films made with autistic people viewed as the core audience. This could mean having the lights on during the film or perhaps the ability to roam in the cinema. Such reasonable adjustments ensure autistic people can express their autistic identities. But in truth, please think beyond the days, weeks, hours and months because being autistic is lifelong and our robust commitment to making autistic people safe, happy and maximised individuals should be too.

April 2018 - Awareness And Acceptance Part 2

Fresh off my trip to Parliament for the launch of the first-ever report on fake autism cures called ‘A Spectrum Of Harmful Interventions For Autism’, we continue our discussion around a time where autistic people are potent in the public’s consciousness.

World Autism Awareness Week. But you see, as explained in Awareness And Acceptance part 1, ‘being autistic is lifelong and our robust commitment to making autistic people safe, happy and maximised individuals should be too.’

This means that we must move beyond mere ‘awareness’ and move into the realm of ‘acceptance’ and ‘tangible difference’.

Digressing slightly for a few moments, I would like to address a very common form of therapy for autistic people which is ABA. ABA means Applied Behavioural Analysis but can also be called Positive Behavioural Support (PBS) alongside other abbreviations.

‘Good’ behaviour in lessons, for example can be rewarded with food, praise and other forms of appreciation… or so that is the misconception.

I highlight the word ‘good’ because it concerns me that someone other than the autistic person decides what the definition of ‘good’ is under their framework; their norms.

Is it ‘good’ that an autistic person stops biting others? Perhaps. But is it more worth your while exploring why they want to bite? Yes. Maybe they need to be orally stimulated or maybe they are stressed due to a sensory factor that you are not able to pick up on like the sound of ceiling can whirring.

We discussed ‘stimming’ a little last time and that, for the most part it is completely safe and fine, and so maybe this need to ‘bite’, often perceived as aggressive, is a need to orally explore, stimulate or communicate.

Sometimes, we need redirection if we are doing something dangerous but training us OUT of our modes of exploration, stimulation or communication is not acceptance.

It invalidates our autistic identities. In short, ABA and such therapies/tools for autistic people are aiming to make autistic people ‘indistinguishable from their peers’ and less of themselves.

Therefore, ABA invalidates our autistic identities. Furthermore, the language we use in relation to our autistic identities is integral to validating our existence and I wanted to swiftly mention what is vastly seen as best practice when putting a name to us.

We do not like people saying ‘person with autism’ because although again this seems harmless, the connotation is that the autism is a separate part of us.

Most of us prefer you to say ‘autistic person’ because this phrase is friendlier and acknowledges our autistic being. I speak for myself and numerous others when I tell you this but there will be people who don’t mind what you call them (provided it’s not derogatory) and so you can also try calling people by their names.

My name is Callum and you can call me Callum or, if we are chatting about autistic people, then please refer to the above guidance. Summarily, I politely yet firmly ask that you cut out ABA and the cures and start making a tangible difference to our lives.

April 2018 - Enriching Our Wellbeing And Nurture Our Nature

According to many websites, World Autism Awareness Week has officially concluded so where do we go from here?

It’s time to make a tangible difference.

Last week was a polite yet firm message to dismiss the ABA and these ‘cures’ going around that want to rid us of the world…so let’s chat about what actually works!

Excellent, scientifically proven and autistically approved therapies or ‘therapeutic supports’ for autistic people’s wellbeing exist, therefore I want to examine three of them for now in today’s column.

We begin with the animal kingdom.

Animal therapy can be about utilising animals’ potential as a bridge to communication, creating calm and providing sensory regulation/stimulation to name only a few benefits.

Animals offer their individual characteristics to a situation such as a dog’s curiosity or a cat’s playfulness which an autistic person can interpret and respond to accordingly and indeed there are characteristic overlaps (a dog can also be playful and a cat can also be curious) but the main point with any therapeutic support involving animals is that there is often a unique dynamic between the autistic person and animals.

Let’s be clear, I am not saying autistic people ARE animals.

What I am saying is that where there may ordinarily be social norms to fit into for the autistic person with immense, unnecessary pressure, there is a mutual depth to the unspoken bond of an autistic person and an animal.

Frequently apparent in such encounters is the appreciation of nature.

The way a wind feels, breezing through human hair, could be intensely satisfying for an autistic person because of how their rainbow filter perceives that sense of touch and sound.

None of this has to be complicated.

For example, taking a trip out to a farm can support an autistic person effectively merely because of all that you would expect from a farm.

The noises, the textures, the food, the air.

People forget about the simple but effective parts of our shared world that we can harness to enrich an autistic person’s wellbeing.

Flexibility in our approach to this multi-sensory world and consistent communication with the autistic person are two key components of effective support.

Additionally, sports and the arts can enrich an autistic person’s wellbeing.

Sports activate our body’s willingness to learn about itself through physical movements.

A running race with other people surrounding the autistic person may not be ideal but a long jump event where the aim is to focus on your own run and performance of the jump is perhaps more suitable.

Autistic people can be competitive and so if you or someone you know has a competitive spirit then that autistic person, in the right situation, deserves to have their potential maximised.

Progressing into art then, activities like learning to play an instrument, dancing and painting can all be genuinely uplifting and feeds those curious and playful minds in need of some therapeutic sustenance.

Life is a canvas.

Whatever your route to wellbeing stability, the underlying principle I suggest that makes a tangible difference is as follows:

Nurture OUR nature.

April 2018 - Sex, Sexuality And Stigma

Travelling forward from our column about reducing if not eliminating the need for out-of-county support, although this is a process, there are other factors to think about when supporting an autistic person.

These factors pertain to sex, sexuality and the stigma surrounding discussion around them.

If we are to make a tangible difference to autistic people’s lives then we need to have upfront conversations about our perceptions of sex and sexuality.

Sex, many will say, is a biological, binary system of identification; What you’re born with. Gender, many will say, is society’s system of identification based on norms associated with what you’re born with.

Gender and sexuality is more about how you FEEL.

First then, let’s dissect how sex impacts an autistic person’s life.

It is healthy for an autistic person, like anyone else, to have an intimate knowledge of their own bodies and the bodies of others.

Integral components of discovering this intimate knowledge include making the knowledge contextual, consensual and consequential. First, we must look at making knowledge contextual.

Working with the autistic people over time through their chosen communication, or if none seem to exist, exploring how to enable communication, can establish their cognitive capacities and depth of knowledge. A 10-year-old autistic person does not need to know what an 18-year-old autistic person would.

Their worlds tend to differentiate in terms of sexual awareness and as autistic people, they are inherently varied too, so making accommodations is key. Let’s look at making the knowledge consensual.

An autistic person may struggle understanding how a person CAN act in response to and in regards to initiating sexual exploration, especially if it’s unwanted, which can lead to severe consequences like justified legal action.

 

Social stories, to paraphrase Carol Gray, are ‘a social learning tool that supports the safe and meaningful exchange of information between autistic people and everyone else involved in the exchange’.

Social stories can help the autistic person understand the reason why someone would refuse sexual contact and when it is appropriate to engage in consensual acts. Having trust in the individual and developing a relationship over time is better than touching an attractive stranger in the street, for example.

Now let’s look at making the knowledge consequential.

We have to teach autistic people how to teach themselves about rejection. Social stories, visual cues and creative outlets can all aid this process.

Failing is equally important to deal with, therefore it is beneficial for the autistic person to cope with failure and being resilient.

Sexuality affects autistic people because autistic people can be gay, bisexual, polyamorous or anything else.

We cannot afford to invalidate their feelings because this leads to problems.

Mental health issues can be harder to identify in autistic people because autistic feel the need to ‘pass’ as normal. This is the result of society’s system of identifying mental health issues within the autistic community being deficient.

But being a gay autistic person with a sexually active life is not deficient. Being an autistic parent is not deficient.

We just have to look at how we get these crucial points across in terms of whether the sexual discovery and exploration is contextual, consensual and consequential.

April 2018 - Traveling Onward

There has never been a better time to talk about enriching wellbeing than last week because a prominent topic of conversation that is in our community seems to be around transport availability.

At the foundation of this conversation about transport availability is the difficulty in finding the right support.

Autistic people move out-of-county because the support they require is elsewhere.

That’s a sad reality for so many.

It is sad because when you think about the catalogue of principles we have established over the Autistic Lincs columns, it’s a shame to me that we are not maximising our autistic individuals.

Indeed, the world of SEN incorporates more than autistic people but this column is historically about autistic people BY an autistic person.

The message of utmost significance and encompassing all in the world of SEN that I want to drill into here is that meaning starts at home.

Life is a canvas and meaning starts at home and in the community.

We have to discover and paint the meaning onto our lives. Keeping autistic people safe when they need to get away from offending sensory environments.

Giving them tools to understand and regulate their rainbow filter of emotions.

Enabling rather than forcing them to socially connect more effectively with people in ways that matter to the autistic person.

Empowering them to feel good about who they are and not who you want them to be.

I am sorry if this last comment is a hard suggestion to take on board for those close to the autistic person but, as I’ve already stated in a past column, we have to be a ‘collective, collaborative and communicative unit’ (March 20).

The aspirations outlined above absolutely matter and they may seem to be repetitive, empty words or just preaching to the choir but our current generation must bring action to these words.

We have to balance ideologies with practical solutions and that is why I am once again asking for the readership’s questions on whatever is happening in their world that they need answers to.

Perhaps you’re autistic and you want to connect with me.

Perhaps you are in an autistic person’s world and would benefit from knowing more about stimming.

Perhaps you need advice on why the autistic person won’t get on certain transport.

Perhaps you need help with establishing a job route for the autistic person in your life.

I am really calling out to all that can relate to the content I have put out and let me tell that there is so much more to unravel.

If we nurture our nature and work to tangibly enhance our schools’ and other educational environments’ attitudes towards utilising and maximising the potential of autistic people then we will be in a better place in regards to keeping our support at home and in our community.

Metaphorically, and to bring the conversation back to transport, the biggest journey for those within the autistic person’s world to go on is with your autistic person.

Let’s take that trip together.


May 2018 - Autism? Translation Please!

There is so much happening which affects the autistic community right now (and there always is) so it was difficult to pick the most potent this week. After deciding that I would be feeding negative energy if I dedicated a column to a few of the items making headlines, I wanted us instead to think about multi-cultural autistic communities.

We know that life is a canvas and that we paint meaning onto it but what is that canvas like for a Polish autistic person? We know that autistic people can have rainbow filters, full of the stimulating colours, textures, smells and general sensory fragments that make up this world. But does that experience differ for a Lithuanian autistic person?

The answer to the above question, as I frame it in in my mind, is that the references vary but the humanity remains unchanged. Polish foods will not symmetrically line up with English foods in terms of how they are eaten but they are still foods.

Please know that I am not aiming to cause a rift but I want us to recognise that “we are far more united and have far more in common with each other than things that divide us” as the late Jo Cox said in her maiden speech.

How do we empower children, young people and adults in our multi-cultural autistic communities? Perhaps it would seem the best option that you give them our language. It has been a long time since I worked with the John Fielding School in Boston and even longer since I worked with Gosberton House School and so I am admittedly unaware of how this issue is currently tackled, however, I would imagine that teaching English to a Latvian autistic person might bring about a stronger likelihood of identifying the world and their emotions ‘better.’

But, objectively analysing this issue of helping an autistic person learn about themselves, is it better to utilise their own language to accomplish the same task? I delivered a TEDx talk in Norwich last year about utilising autistic people’s potential (“Why we should make mountains out of molehills,” YouTube.com) and it is about taking a singular interest or ‘obsession’ and working WITH it as opposed to against it and I think this enhances the point I want to convey in this particular column but also in past columns about imposing unnecessary norms. Do they necessarily need OUR language when they have their own? Is it about give and take?

This leads to my proposal.

What if there was an intimate network of translators, together with myself, that would disseminate knowledge in a compassionate and constructive manner that allowed autistic people and others in our multi-cultural communities to flourish and safeguard them from harmful ‘treatments’ when no alternatives seem available?

Could that work? I think it could but any feedback is appreciated from anyone willing to share it on the idea and the implementation of the idea. What DOES the canvas for South Holland look like in regards to autistic people in our Polish, Lithuanian, Latvian, Romanian, Bulgarian and Portuguese communities? Let’s create the foundation of that canvas.
Autistic people, and indeed anyone else within a multi-cultural community, do not need to feel powerless over their lives. Knowledge is power. The tangible difference that knowledge provides can be felt in any language.

May 2018 - Rainbow Filters

Here we are with Autistic Lincs and in this edition we will be looking forwards to May 21 in Liverpool which will be another location for a peaceful protest.

You may recall my previous politically charged events such as my date in Parliament passing the Westminster Commission On Autism’s report on harmful treatments and fake cures for autistic people or my protest in Portsmouth.

Well, when Autistic Inclusive Meets (AIM) – an autistic-led charity in London – and I meet in Liverpool, we will be voicing our concerns in protest about another charity called Treating Autism.

Now, there are very real factors of an autistic identity that are ‘disabling’ but being autistic is not automatically a disability and, as outlined in the first ever Autistic Lincs column (Autism: A human story, March 6), it is not a disease. Treating Autism believe that we need to be cured and I find that idea immensely offensive.

Treating Autism believe that vaccines cause autism. I do not know if I have so publicly debunked this particular myth but it is just that; a myth.

Causation does not equal correlation, which means that just because you give your child a vaccine and then you see ‘autistic traits’ it does NOT mean that they are linked.

Unfortunately, the charity Treating Autism are under this influence and it is my

response that even if vaccines DID cause me to be autistic, I refuse to be seen as ‘vaccine-damaged’ as people involved in Treating Autism seem to.

Suicide rates in autistic people, young and old, are only going to rise if charities like Treating Autism keep promoting such self-destructive fallacies.

That is the real damage.

Treating Autism also believe that diets make you autistic and that by cutting out certain foods and such like gluten, casein and a host of other things touted as ‘cures,’ that you will lessen your ‘risk’ of being autistic.

Again, I vehemently oppose this thought process and subsequent action and can offer an alternative view on the issue of diets.

Revisiting the inaugural edition of this column, I mentioned a rainbow filter. “We can feel, hear, touch and sense the world and those around us in such high intensity that sometimes we need to turn down the brightness.”

We have an intensity of senses when it comes to the world but that also means we often have an intensity of senses when it comes to the food that the world offers us.

Basically, some foods we try will smell too intensely or feel too intensely (eg too rough, too smooth, too bright) and that’s when you get us refusing foods. Please be compassionate and constructive towards our sensory dislikes rather than starting conflict.

Forcefeeding us cannabis oils or camel milk (you read that correctly) or restricting our diets UNLESS we have a proven intolerance to something is not going to make our autistic selves go away and I wouldn’t want it to.

I would rather be treating ‘autism’ or more appropriately ‘autistic people’ with respect for our individual selves and accept us and harness our potential as comic book artists, inventors, thinkers, creators, human beings. That is some food for thought.

After all, two months into Autistic Lincs and the core message remains unchanged just like our autistic identities. It’s all in the brain.


June 2018 - Lights, Camera, Action 

As we continue our path to the Education Awards and I get closer to my Guest Speaker role on stage, I wanted to cast your minds back to Past And Present (Autistic Lincs, Lincs Free Press, March 13) where I expressed the importance of the autistic community having a voice and how historically we have not always had the opportunities to communicate our stories.

This history is the foundation of our collective, collaborative and communicative future.

This is the meaning that I paint onto my life's canvas, not just for me now, but for others.

I am quite familiar with being on stages, using them as one of my privileged platforms, but questions arise in my mind surrounding the Education Awards on July 5.

How many of the attendees will be autistic?

How many of you will bring your autistic connections to the Education Awards?

If you did not plan on coming as an autistic person or you do not think your autistic connections will 'cope' with the Awards, I can totally understand and this is not about blaming or shaming anyone for their decisions. But I think it is worthwhile to consider how integrated we are before, during and AFTER the awards.

I believe that we should be thinking outside of our box and not preach to a choir that is already singing from the same hymn sheet.

In Past And Present, I conveyed the idea of an 'orchestra of voices' but this orchestra cannot be sustained without a new audience to hear it.

This is why we need to amplify the messages that those within the education sector may already know and share as much as possible.

We have to get out of our schools and into the wider community as much as possible.

One possibility for how to achieve this could be having a radio show dedicated to our education sector and this would be useful because then we would have another channel through which to talk our audience; the world. Let me know what you think of this idea in next week's letters or contact me at the links I will provide below!

 

Other possibilities to achieve our aims of education and applying this education could be through market stalls, art exhibitions and conferences! Not to mention there is, at the time of writing, a shop space on Winsover Road that could be transformed in some way to serve our community.

The world is our stage and the Education Awards on July 5 at the South Holland Centre is our time to shine spotlights on successes, capture moments and create sustainable, tangible impact for all.

Lights, Camera, Action.

June 2018 - Talent Speaks For Itself

Britain’s Got Talent (BGT) once again swept the nation last week and it has been heavily reported that the winner has cerebral palsy and the runner-up is autistic.

I am very happy about these individuals being positive representations of people that have got much less productive portrayals far too often. I could leave it at that but there are other layers to delve into.

Purposely simplifying the journey of BGT (A lot harder than perhaps the general viewer would know), the process of auditions to get a place in the final is much like how I believe job interviews should be. Screenings based on what you can DO as opposed to how you appear on paper. Last week, David Mitchell, the National Chairman for The British Polio Fellowship mentioned the widening disability pay gap and how data on the gap should be published and I wholeheartedly agree.

We should all be accountable for how we are utilising or under-utilising the population’s diverse range of talent to maximise benefits for all and with a few systemic and attitudinal tweaks, we can do this a lot more.

People with cerebral palsy, people with polio or Post Polio Syndrome (PPS) and autistic people are available to inform communities how to maximise our potential.

Lee Ridley AKA Lost Voice Guy, the winner of BGT, and Robert White, the runner-up, represent authentic sources of information to soak up and use for the good of the next generation.

This does indeed segue into another aspect of BGT as a talent show. which is thus: What will happen next for them?

BGT is a very famous platform to push your agenda on and my thoughts are especially with Robert White on whether he decides or has already decided to align himself with some of the main charities for autistic people.

The NAS (National Autistic Society) and Ambitious About Autism are both charities that so many people are aware of yet their effects on autistic people are not unanimously positive. (Revisit Politics And Power Plays, Lincs Free Press, 27th March for more on how I feel towards NAS) but I want to bring particular attention to Ambitious About Autism because this is a charity with notable ABA schools and ABA stands for Applied Behavioural Analysis.

As I hope to have communicated in Autistic Linc on 8th April about awareness and acceptance, ABA is a therapy for autistic people that is equivalent to dog training for autistic people and a lot of autistic people hate it and suffer PTSD in later life because of it. Fact.

Therefore, as an autistic man, it is so valuable to have an autistic comeJdian such as Robert White in the spotlight but I do wonder what a man of his stature will do in regards to ‘causes’ he fights for or whether he is just in it for a good time! At the very least, the disability pay gap decreases ever so slightly...

At the end of it all, I am of the opinion that we were genuinely entertained enough by Robert White and Lee Ridley AKA Lost Voice Guy to warrant their positions in the talent show and that should be enough.


June 2018 - Homeless Not Helpless

Last week, a 'significant study' and report surfaced about the potential and risks for autistic people who are also homeless.

The study is preliminary and therefore by no means conclusive, however it does delve into a genuine concern of mine and I am glad that I came across it on The National Autistic Society's website. As previously established, I do not hate the National Autistic Society but they could certainly do more for autistic people and have failed in the past when it comes to autistic people.

So imagine my delight that such an issue was raised, given their tremendous profile.

I have some thoughts on a few sections of the study including the following extract:

...'instead of using self-report and/or direct observation, we chose to measure autistic traits by informant report, with the informants being key workers in a homeless support service. These are staff members who work directly with homeless adults to help them make positive changes and also coordinate their contact with diverse services. In this role, key workers work with their homeless clients over a sustained period of time and generally know them well. Our decision to use informant report was in response to the likelihood that a large proportion of the homeless population we sampled would not engage with research. Those with autistic social communication difficulties would likely be among the least likely to participate, which would introduce a bias into any estimate of prevalence.'

In short, I gather that the report utilises views, not from autistic people but from key workers.

It mentions social communication difficulties associated with autistic identity and I do wonder if we could have had more autistic people coming forward if the understanding of communication was perhaps different or if autistic people were more confident.

It's impossible to tell but, as stated in the report, 'Further investigation is required to build upon these provisional findings.'

If, for example, communication was entrenched in the ideals of ABA, then it may not yield positive outcomes for autistic people but brief research into the individuals responsible for the report indicates this is not the case here which is very good in my mind.

I think the researchers responsible for completing the work (without mentioning the many people that make up the findings) who considered autistic traits based on currently available works such as the DSM 5 (Diagnostic and Statistical Manual of Mental Disorders 5th Edition) made a positive move forward as not every autistic person 'exists' in written records therefore they are often not formally acknowledged. I also wonder who diagnoses who. Are there are any autistic psychologists?

Of course, there are in a pure sense, but are they merited in the same way as a non-autistic psychologist?

Finally, I bring into focus a very early part in the study which says 'A realistic understanding of autism should not only focus on the difficulties arising from the condition but also must include consideration of the strengths of autistic people.'

Many difficulties for autistic people arise out of a world which does not fully connect or accept them and so, I believe, as an autistic person that this entire study is a fantastic leap towards more positive outcomes for autistic people but there is more to do as a united community to show we are homeless...not helpless.

The full report can be accessed at this online link: http://journals.sagepub.com/stoken/default+domain/IAmuFddNNmeCRNV5RWXY/full



June 2018 - Pride And Progress

The Education Awards is nearly here, starting at 7pm at The South Holland Centre on Thursday, July 5 with yours truly. Who else is excited?

The Education Awards will be an opportunity to connect with the community in a physical manner and that is crucial, I believe, because people exist beyond the page.

You may have seen me around the town last Monday in places like Barclays, 888 Vapours, Dorothy Perkins, The Ivy Wall, WH Smiths, Aldi, Costa and Sainsbury's.

Well, last Monday was Autistic Pride Day and I went around with my 'Notes Of Knowledge' which was a tin full of facts about autism and autistic people. I would love to thank every shop I went to and every person I talked to and shared a moment with.

This week, especially with the World Cup in our thoughts, is about pride and progress.

I always have to choose one out of multiple choices for column topics and this week is no exception. A study about homelessness was deconstructed in our previous edition of Autistic Lincs but, unfortunately, it is also true that people who are homed in fixed abodes are not always safe or happy.

I could have written much more in depth about the tragedies of Gosport but I can only hope that, at the time of going to press, we have learned how to move ever so slightly forward from the despicable happenings in what was supposed to be a home for innocent people. It harkens back to the National Autistic Society's care home Mendip House (Autistic Lincs, Politics And Power Plays, March 28).

I could go much more in depth about how I think people will or already do link cannabis oils to autistic people but the only thing I will outright state is this; Cannabis can reduce 'stress.' It does NOT reduce 'autism.'

Anything of a homeopathic or such nature that aims to 'cure' autism is misleading and should be treated with caution. A great example of a company willing to adapt their wording to suit reality and aid autistic people in the most productive ways is Essental Well Being. I have had brief phone calls with representatives from this company and they have been extremely open with me and this is what we need going forward.

Taking something positive from each of the issues referenced above, The Education Awards is a place to nurture compassionate communities and equip those who are privileged to be conduits of best practice and tangible impact to the next generation with the tools to unify and maximise us all.

 

I have seen, not only on Autistic Pride Day but on social commentaries such as Spotted Spalding that Spalding is a place of passion and on July 5 we will gather in pride... and progress.

 

July 2018 - From The Inside Out

Welcome to another edition of Autistic Lincs!

Every week, I present an autistic view from within the autistic community. As with so many other communities, we are a perpetually shapeshifting form so it is very difficult to pinpoint a moment in time, however I want to write about recent research opportunities that have arisen and how utilising these opportunities will make a tangible difference to all of us.

The research opportunities come from Autistica, a charity that seems like it's turning itself inside out now, but there has been friction with the autistic community due to its links to a charity called Autism Speaks.

Autistica is a charity that is still seen by various people as the UK branch of Autism Speaks and if you don't know Autism Speaks...good.

Autism Speaks bases its foundation of work on the idea that autism can be 'cured,' work to actively eradicate us and do so much harm through insulting narratives and abusive practices. Therefore, naturally any association with this dangerous charity is mostly thought of as counter-productive to autistic people.

And then Autistica told the world it had merged with the likes of Autism Speaks.

In a five-year plan of theirs called AIMS-2-Trials which will 'bring together researchers, charities and companies across Europe to improve our understanding of autism and develop new therapies,' Autistica say '...different partners have different focuses but they all commit to meaningfully improving autistic people’s lives. We cannot deliver certain new therapies for autistic people unless we work in partnership with researchers, major organisations and pharmaceutical companies.' Do you treat that with cynicism or hope? What are the pros and cons?

How is an autistic person meant to feel?

There was and remains an uproar of discontent, distrust, confusion and generally bad feelings because it seemed like Autistica had finally acknowledged, perhaps even deepened, its connection.

But these recent research opportunities came about which pair an autistic person with a research idea with a qualified researcher, all of whom must meet certain criteria to be selected for potential pairings, and are potentially given the financial backing and collective expertise of all involved to execute the research.

Is the autistic person being abused with Autistica taking the credit for any of their contributions for their own gain?

Is establishing yourself as an autistic researcher a positive in itself, irrespective of anything else?

No one is sure and there are numerous other questions to be asked but I will certainly be applying for one of the four grants that will awarded in the Autumn.

Finally, I urge any autistic people in South Holland or elsewhere to apply because I do passionately believe that you do not need to cut us open for a 'cause' to know that authentically driven, collaborative change can occur from the inside out.

 

July 2018 - Rainbow Hands

The dust has settled and another Education Awards has concluded. You can read more about it and check out the pictures on pages 15 to 20 in today's paper.

My mind buzzed a little after the event and I spent some time analysing myself and the event and came out with a mostly positive outlook. I write 'mostly' positive because I always want more. More out of myself, more out of others and more out of life.

Did I say or do enough?

Do I feel listened to?

What happens now?

Despite my own internal machine cogs turning, something that Jeremy Ransome, the host of the Education Awards said, resonated with my core and it was along the lines of 'society has to adapt to us and not the other way around.' This is absolutely correct and I was thrilled to hear this from a clearly collaborative ally of the autistic world.

From July 23 till the September 3, there will be a series of conversations, blogs and other material talking about 'masking' on Twitter (and maybe I'll do something...) but masking our true autistic selves happens because we feel society does NOT adapt or even attempt to listen to us.

This has to change.

Information on the international campaign about masking starting at the end of July can be found at an online link provided.

I hope to continue working together for a long time because this is a fantastic opportunity to connect our worlds, the neurotypical and the autistic, and I do not take it for granted.

Now, onto my new project which you may have heard me talk about at The Awards last week (maybe audio was lost in the passion I felt on stage!)

Rainbow Hands is a project designed to accept, connect, enable and empower autistic people and the people in their lives in communities where English is not a primary language.

 

I wanted to first talk about it at The Education Awards because a long-term goal of mine is to establish a presence within our local education sector.

Currently, there are four language-specific online groups for Poland, Lithuania, Russia and Romania and this variety will deepen and grow as time goes on. These language-specific groups are set up as their own group but will also feed into each other and are linked in the Rainbow Hands Hub, which is referenced below.

The Rainbow Hands Hub is where anyone who wants to be actively involved in being an ally to autistic people's lives can go to discuss, improve, deepen and direct Rainbow Hands.

As discussions build in the language-specific groups, the Rainbow Hands Hub content will grow accordingly.

Rainbow Hands is in a constantly evolving Research and Development phase but preliminary research establishes a definite need for something like Rainbow Hands. Another goal of mine is to travel to areas in Rainbow Hands' remit with the purpose of forming and strengthening relationships with existing charities as well as creating new partnership pathways.

July 2018 - On The Right Slice Of History

This past week has been filled with love and positivity.

In a week where England's World Cup dreams were brought to an end, it seems that sometimes in order for us to come together as one we need a focal point to rally around. The togetherness that I saw around the support for our national team was echoed in the way that people came together to show their distaste for Donald Trump.

At the time of going to press, I do not know what has been said about the Pro-Trump protest and march on Saturday 14th July, but I formed part of the Anti-Trump protest AKA The Carnival Of Resistance and as always I speak as one autistic man.

Against the background of sexism, fascism, racism and floods of discirmination that have become hallmarks of President Donald Trump, people came together to bring compassion, acceptance and community to the forefront of the minds of the people London, the United Kingdom and the world.

We assembled at Portland Place outside the BBC and two things stood out to me as both wonderful and woeful.

On the positive side was the mass of signs including 'Dump Trump' and one of my favourites 'Impeach The Orange.' The sense of a refusal to indulge such a hateful regime, not just the man himself, was uplifting.

Considering where I and many autistic people stand on President Donald Trump, the second thing I noticed was much more disheartening.

I could not see ONE charity for autistic people. No NAS. No Scope. No Ambitious About Autism.

All of these charities supposedly speak for us or amplify our voices yet where were they when it mattered?

This was an historic moment for autistic people to say "No" to elitism and division.

If you are a charity in Spalding or working with any of the aforementioned charities then perhaps you will know a reason that prohibits their involvement. But as an autistic man who has struggled to find his place in a world that conforms and keeps you from flourishing, I am insulted.

Charities, certainly those I directly refer to, are inherently political, and they have worked with our government before so I was extremely disheartened to realise that their presence was not visible.

Disheartened but not defeated.

What was visible, however, were the bright colours, inventiveness and vigour with which the United Kingdom celebrated and vocalised its cause.

The cause is, ironically, a result of the effects of President Donald Trump's words and actions.

Following the initial assembly, we marched from Portland Place to Parliament Square and I enjoyed various performances from singers, dancers and the many speakers.

This format continued into the night, when the crowds ambled towards Trafalgar Square. Dawn Butler MP and David Lammy MP were particularly impressive as they called powerfully for change and solidarity.

It was refreshing to see politicians utilising their position of power in such a way - I know I have been critical in the past (Politics And Power Plays, March 25th, Lincs Free Press, Autistic Lincs).

I loved so many people performing and speaking but I want to draw attention to the multiple speeches which made the point that although Donald Trump, the figure, represents an oppressive and destructive regime, we must remain focused on issues and regimes closer to home as well.

Hate crime? Here in the UK.

Discrimination? Here in the UK.

Public service cuts? Here in the UK.

Widespread unemployment? Here in the UK.

Fake 'cures' and harmful 'treatments? Here in the UK.

Despite all of the negativity coming from Trump, I am confident that, as David Lammy MP said, I am on 'the right side of history' or in the theme of President Donald Trump's orange complexion often mocked, the right 'slice' of history.

Because when life gives you oranges, take a segment of solidarity and change the world one piece at a time.



July 2018 - Don't Have A Paddy

Last week. I saw coverage of an interview with Paddy McGuinness - from ITV's Take Me Out - about his autistic twins. Note how I said 'autistic twins' and not 'twins with autism?'

Of course, every autistic person has a right to choose how they identify but it has been reported that many autistic people prefer the 'identity-first language' rather than 'person-first language' which would be saying 'someone WITH autism.'

What does language have to do with Paddy McGuinness? Well, words have power and it's important to accurately reflect autistic people's identities and by saying 'people with autism,' the implication for so many autistic people is that autism is a removable part of someone's identity.

Paddy McGuinness is a celebrity who has a privileged level of influence over the world but he is also a dad and I have seen many parents of autistic children finding themselves 'mourning' for a 'loss' or 'regretting' the autistic person.

I do not want Paddy's children or anyone involved in their lives to think autism is saying 'Take Me Out'.

To quote a friend who is a parent, it is the 'preconceived idea rather than the child themselves that people mourn. Having a child who is different can be stressful in many ways: you wonder if you are doing enough to help them or are you doing too much; the battle for understanding, recognition and support; the many flashpoints in a day where your child needs help; the behavioural aspects; the personal care aspects for those with physical difficulties or incontinence issues; the potential for violence to themselves or others; mental health issues, self harm and suicide and so on'.

Parenting any child is hard and I can totally understand why Paddy may feel some or all of these feelings and go through a mental transition, but as an autistic man who sees and reads about people travelling dangerous and abusive paths such as bleach enemas, it's crucial for someone like me to spark the most productive conversations about autistic people.

Don't have a Paddy and instead I passionately encourage all to reach a place of acceptance and strive to achieve fulfilled, sustainable lives for autistic people.

My friend, quoted above, Paddy and myself all want the same things here.

Having said that, there is a camel milk farm in Bolton - where Mr McGuinness hails from - and I advise against using camel's milk as a 'cure', although I've no doubt it can be tasty in coffee... How much is a train fare to Bolton?

Anyway, back to the matter at hand (a glass of camel's milk?) which is actually the role of parents in the lives of autistic people and, as I've mentioned before, we need to create an 'orchestra of voices' - exactly what the upcoming Going Forward Music Festival is.

I am performing a poem to open the festival among other artists and performers such as Jenny Brown, Matty Haynes, DJ Will and Rhubarb Theatre. This is Spalding's first ever disability-focused festival and is a unified effort between mums, dads, autistic and disabled people, as well as the integral local community to put on an event for historically under-represented and overlooked people in our society.

I certainly hope to spark the most productive conversations about autistic people and disabled and, you know, it will be good old fun too!

August 2018 - Community Conversation with Barberettes

Hello once more and this, as always, is Autistic Lincs. I'm not afraid of being different and today will be the start of a new feature within this column called Community Conversation. The idea is simple. Each week a Community Conversation appears in the column, I will have talked in a semi-structured way with somebody from the general public about autism/disability and the results will be shared.

I see great value in having chats with everyone possible to ensure that together we spread the most productive messages we can about autistic and disabled people. That doesn't always mean preach to the choir but sometimes you have to engage with different voices.

This past week I talked to someone at Barberettes in Spalding, a barbers that was highly recommended in a Spotted:Spalding post when someone asked about somewhere to take their autistic child for a haircut. Of course, this intrigued me and so I went to see for myself that day and was very impressed.

Here are the questions I asked and their thoughts on each:

Q: Do you have a link to autism/disability?

A: Through friends, really.

Q: Why do you think you are so recommended?

A: We are who we are. No hairs and graces. We're 'on their level.'

'Masking' is when an autistic person feels like they need to act 'less autistic' to blend into social norms and this does a lot of damage to mental health, causing us to feel unsafe and reject. The international six-week #TakeTheMaskOff is a response to this.

Q: Have there been times when you have felt unsafe or rejected?

A: Probably for being short! (laughs)

People don't get to see you. They judge.

 

Q: Being autistic, my main struggles are sensory or social. What sensory or social aspects of your store might affect autistic people?

A: Saturdays are busy. I can imagine it being too much. It's too much for us sometimes!

Q: What message would you give to the next generation of autistic/disabled people?

A: It's the inside, not the outside. 'To the world, you are one person but to one person, you are the world.' I love that quote.

That wraps up my brief but totally engaging conversation with Barberettes where I discovered a commitment, compassion, cheerfulness and undoubtedly a good haircut or six!

August 2018 - Streets Of Colour

Hi there!

How did you find the first Community Conversation? I am immensely happy to conduct a weekly community conversation with this column and I hope that last week's recurring feature will continue and Autistic Lincs will continue to grow.

Onto more thoughts, feelings and fabulousness then! August 18 will be King's Lynn's inaugural Pride In The Park representing our world's diversity involving the Lesbian, Gay, Bisexual, Transexual, Queer, Non-Binary and other communities.

If this is your first time reading Autistic Lincs then let me state that I am a local autistic man writing this from my perspective and I have been to Pride events before and autistic people have been equally represented. Therefore, I wonder if Spalding could follow in the footsteps of Norfolk and so many other counties. Spotted: Spalding is an online platform that may have heard or read about as very negative and the Complaints Centre of our town but I choose to present another side.

I believe that Spaldonians have or in many cases had enormous pride in their town and although a Pride event would not solve everyone's issues however I truly feel that Spotted: Spalding positions Spalding as a place of passion and potential if we can harness that energy for good. I have seen all kinds of posts about genuinely important issues from missing animals and people to vandalism, fundraising and even recommendations for hairdressers best suited to autistic people.

Yep, last week's column came about because of Spotted: Spalding. Spalding is a town that cares about its future and its people. If only we could encourage all shapes, sizes and neurologies to step forward together to celebrate as one community then I think the world profits.

We've shown as a town already what we can do with thriving festivals, notably the recent Going Forward Music Festival focussing on disabled people. Bearing in our minds that not all 'disabled' people or any of the aforementioned communities are 'vulnerable' and I am certainly an example of 'empowered individual' but come on guys, we can do it.

We could arm ourselves with the knowledge from people and communities that have gone before us and fill the streets with colour.

A parade, guest speakers, stalls, music and more in the name of diversity!

But should we? I think so but let me know your thoughts online (Facebook Page) and in person.

August 2018 - For All The Taboos In China

Thanks for reading yet another edition of Autistic Lincs! This time around, I'm looking at an article that particularly caught my attention last week.

It was on the BBC's website and talks about the Chinese community thinking autism is a contagious disease.

We've evolved tremendously in the UK in regards to awareness of autistic people but it seems that there is more to do and I take the challenge because any gap in information is an opportunity to fill it.

I think that any community that is inadequately equipped with authentic and proven knowledge and cannot spread that knowledge has the potential to fall into hard times so I am not putting China as a country or any other country or community at fault here but this perception needs to shift.

Culturally, I believe that Chinese people can often place a lot of emphasis on 'shame' and so anything that breaks that Terracotta Warrior husk of stigma is looked down upon and cast out. We cannot shame in response to what may be someone's genuine call for help.

An autistic person who exhibits 'challenging behaviour'* which could be physically aggressive would warrant someone to seek guidance or explanations and without knowing an autistic person's sensory-heightened/diminished world and how we can regulate, replenish, activate and utilise that world, it is easy to see why some would be driven to counter-productive ideologies and actions like 'cures.'

The Terracotta Army was said to protect the First Emperor of China in his afterlife. Imagining our children as our legacies and the afterlife of our existence, we must protect them from harm and if we continue down this current thinking that autism is a 'disease' and not a neurology, we could be putting our children and young at risk of mental health issues that may escalate.

I want to create something like a cartoon with positive messages wrapped up in it so that we can share the best ways forward for autistic people. Although it's encountered some stumbling blocks along the way, Rainbow Hands is a project designed to enable and empower autistic people and those in communities where English is not a primary language. This article makes me want to expand the project's reach.

Funny how the world works sometimes.

The Chinese community and other communities feel shamed by their autistic connections but if we can replace that shame with a love and embrace for the autistic identity then these communities will see that "We are far more united and have far more in common than things that divides us" in the words of Jo Cox.

*Please check the autistic educator and academic Shona Davison and her 'Who's Challenging Who' talk if you can:

shonadavison.co.uk/


August 2018 -  How To End The Hate Epidemic

I like to have a mixture of fun and formality when Autistic Lincs comes around but this week is pretty serious stuff.

In September, a book called How To End The Autism Epidemic by JB Handley, gets released to the public and first and foremost I reject the messages that underpin the book supported by Chelsea Green Publishing. Messages such as proposing 'what’s causing the autism epidemic, the lies that enable its perpetuation, and the steps we must take as parents and as a society in order to end it'. That quote in itself is historically inaccurate and makes a mockery of my proudly autistic identity. If the autistic NEUROLOGY was to 'end' it would likely mean that Einstein, Mozart, Emily Dickinson, Michaelangelo, Newton, Darwin and many others would not exist.

Is a dead child better than an autistic child who can thrive with the right tools, experiences and people?

If your answer to that question is 'Yes,' please read on.

I have never wanted to communicate through this column as an entire community but I certainly do feel, as an autistic man, that I can represent my part in it and amplify others' voices within our community. It is in this autistic capacity that I say that autism is not a disease.

It saddens me that such impoverished thinking, as we can read about in last week's column For All The Taboos In China, can lead to ableism and ignorance in abundance with this kind of book. Books have worldwide power and we should choose wisely the stories that we read.

The influence that Mr Handley holds as co-founder of Generation Rescue with Jenny McCarthy in the USA is strong and he is likely to hold other positions of power, at the very least in what is often known as the 'anti-vaxxer' community, however, it is crucial to state here that I dismiss this idea that autism is something to be 'rescued' from.

JB Handley and those who align with his views may see this as free publicity and I guess that it is but it is worthwhile for me to shine a light on hateful opinions at best and dangerous practices at worst like refraining from vaccinations and encouraging ACTUAL diseases (killers) like measles to return.

Sure, there are sensory and social differences in a world that was not built for autistic people but generations of autistic people have proven that we can not only exist but THRIVE if acceptance, compassion and authentic and tangible collaboration are some of the components of our shared worlds.

Autistic people online and offline have the answers to the 'problem behaviours' seen by loved ones, teachers etc.

Will you reject the stories of hate and division and embrace and love our autistic identities?

Will you choose to read our autistically-driven stories?

 

There is a petition on Change.org against the book being promoted in bookshops and online. Please support autistic people, sign and share!

https://www.change.org/p/chelsea-green-publishing-boycott-j-b-handleys-hate-epidemic-against-autistic-people

 

September  2018 - Do Your Dance, Chloe

Autistic Lincs returns this week with a much lighter tone, although the petition to discourage bookshops and online sites from selling the book 'How To End The Autism Epidemic' by JB Handley is of omnipresent importance because it does not represent autistic people in essence.

We return with one more take on the 'Take The Mask Off' campaign across social media which has been all about autistic people masking; acting unlike their autistic selves due to pressures from society to conform.

I found inspiration for this column this weekend when I visited Bentley's, where I can be found dancing the night away when I am able to.

Now, there is a song (and dance) called Cupid Shuffle by Cupid and rather appropriately, I am in love with what seems to be the Bentley's tradition of dancing behind the bar. I was told this weekend that it is bartender Chloe's favourite song and it is possible that she started it and I thank her, but I was impressed by the staff's freedom of movement for another reason.

The shuffling, popping, jiving and general vibing to the rhythms is akin to the flow of life. Yeah, that's right.

The liberation I have seen many times at Bentley's is the ideal reality for autistic people as opposed to taking direction from our cultural choreographers.

Telling autistic people how to act because it is 'weird' to flap hands, jump, pace, tic or do whatever else we want or NEED to do in order to be ourselves is not beneficial to us and is therefore not going to get the best out of us.

Allowing autistic people time to organise, relax, regulate sensory stimulation, indulge in interests and Take The Mask Off is what will get us all further ahead.

You've heard the expression 'Dancing to the beat of your own drum.' Well, bring on the neurotribal boogie!

Chloe from Bentley's, in that moment when I was sat drinking my delicious beverage, observing the community's pure enjoyment, was engaged in HER song.

Do Your Dance, Chloe. Take The Mask Off.

And as the Take The Mask Off campaign comes to a close soon with one more reflective session next week, we have to open our minds to encouraging autistic people to engage in THEIR song. To do THEIR dance.

 

Search #TakeTheMaskOff on Twitter and Facebook for conversations around masking. I also suggest this very short article by Autistic Zebra:

https://autisticzebra.wordpress.com/2018/09/01/acting-more-autistic-takethemaskoff/


September 2018 - Combine And Conquer

Hi again! It's Callum Brazzo, autistic performance poet, community collaborator and author of Autistic Lincs!

Earlier this year, I was part of the inaugural Going Forward Music Festival and we are already fundraising for 2019 (the link to help us is at the end of this column).

If people are to 'take the mask off' and be their authentic autistic selves, I truly believe that merging communities is a very positive way forward. The festival exemplifies how autistic people like me can work very well together with non-autistic/neurotypical/allisti/'normal' people.

These people, in the autistic community, have been referred to as NTs (neurotypicals), allistic and other names. Essentially, people are people. Later this week, I will meet with the committee with details of big things to come in 2019 on a personal level but we will also talk about the festival and people with genuine desire to change our local community. I will chat to people with 'lived experience' like me, our minds will conjoin and create something wonderful.

What will we do to fundraise? Maybe I'll put on a poetry performance or a music evening? Watch this space...

The impact of this festival is far beyond Spalding as I have shown before with Spotted: Spalding's ability to unite for good, but Spalding and our local area needs this because pseudoscience (quackery), hate crime, abuse and other such awful thought processes and outcomes for autistic and disabled people can be borne out of a lack of diversity and appropriate education.

Books like How To End The Autism Epidemic by J.B. Handley are bad for autistic people and I strongly encourage my readership to sign and share the following petition against its promotion online and offline.

We cannot let it divide and conquer our communities.

https://www.change.org/p/chelsea-green-publishing-boycott-j-b-handleys-hate-epidemic-against-autistic-people

We are doing fabulous things here in Spalding and demonstrating that we can achieve when we unite, like the excellently-attended BBC Radio 4's Any Questions which is a format that should return, in my opinion, and pushing forward with projects and services like the Going Forward Social Group and Little Miracles Spalding.

We have to let our neurologies unite, autistic and neurotypical alike and connect, collaborate and CREATE.

How do you end the hate epidemic? Spread love, combine and conquer!

September 2018 - Free Hugs

Howdy guys. It's Callum Brazzo, reporting for Autistic Lincs and it brings be joy to know that somebody who has heard me speak at an event also happens to have met me last week on Market Day!

I can be very spontaneous and on this occasion, I had decided to offer some free hugs! I know, right?

I just wondered how Spalding would react to someone spreading a bit of love and you did not disappoint!

Some people asked if my act was for charity (it wasn't) but SO MANY people came up to me and embraced with me. A mixture of ages and genders combined and created a moment of love and in a few cases, reflection on how our world is so hateful and how we must reject it.

In stark contrast to 'How To End The Hate Epidemic' (Lincs Free Press, Tuesday August 28), this demonstrated exactly what I was thinking when I wrote about the potential power of Spotted: Spalding.

A sense of community and openness to let love in.

I know that this isn't autistically centred, but it goes to show that, much like the physical act of a hug, we would do well to embrace the potential of autistic and disabled people and think differently about them.

Of course, due to sensory issues, not all autistic people will appreciate a physical hug but we can chat about that in another issue! "There are so many beautiful ways for love's expression' as Joss Stone once said.

The charity Autistica, historically pro-cure in terms of autistic people, held their first annual conference at the University Of London in the same month as the hugely counter-productive book I've referenced before, so the landscape of the autistic community is evolving in very intriguing ways for good and bad reasons.

Contained in 'From The Inside Out' (Autistic Lincs, Lincs Free Press, July 3) I spoke about research opportunities available via Autistica and how an internal change of focus because of the powers we would have might be positive for us all however I was unsuccessful in getting the funding. We cannot be inactive at pivotal times like this, which need our communities to speak up and we must be vigilant and ensure that the messages we push forward in society and spread love, more than ever.

But simple acts like free hugs that open us up to conversations about mental health and world as a whole can make big differences.

Free Hugs on the market. Come one, come all!

 

September 2018 - Labour Of Love

Today, Autistic Lincs will be made at a Labour Party conference in Liverpool.

Ever since Politics And Power Plays (Autistic Lincs, Lincolnshire Free Press, 25th March 2018), I have been politically engaged as an autistic writer and this evening will be a full circle of sorts.

I have written about the necessity of being united as a community. I have written about the National Autistic Society (NAS) and its lack of action and personal meaning to me in equal measure. I have also written about counter-productive practices such as ABA and hateful, abusive practices in the bad name of 'curing' autistic people. Bringing us into that full circle, it was in Liverpool that I stood in solidarity with autistic people protesting against such 'cure-centred' practices.

History will continue to be written at this event that, unfortunately, I cannot attend - however, I must share the excellent work of my neurotribe, my culture, my community. Labour MP John McDonnell and a conglomerate of autistic people have been working very hard on the Neurodiversity Manifesto for the Labour Party to enact and sustain with a healthy mix of insights but with a central focus on neurodivergent people, this of course, including autistic people.

This event, this conference, will feature, amongst other speakers, Emma Dalmayne, autistic mother and CEO of Autistic Inclusive Meets (AIM, an autistic-led charity that I recommend) with whom I shared Liverpool's protest.

The Labour Autistic Network (LAN) was set up by Adrie van der Meer and Carly Considine, two autistic people, after the steering group for The Labour Party's Neurodiversity Manifesto was set up, but especially recently, both entities have overlapped in the good name of autistic people.

Whatever happens from here on out, in the aftermath of the Labour Party's conference tonight, wanting to develop a 'manifesto that tackles discrimination and delivers real gains for autistic and other neurodivergent people' will take all kinds of stakeholders and TIME.

 

October 2018 - The Potential Of Us

Hello there! Thanks for reading yet another edition of Autistic Lincs.

You may recall Combine and Conquer (Autistic Lincs, Lincs Free Press, 9th September 2018) wherein I discussed the possibility of merging our communities in the name of another Going Forward Festival.

Well, last week, I attended an event held by the Lincolnshire Autistic Society (check them out here www.lincolnshireautisticsociety.org.uk which has done a lot of work behind-the-scenes for so many years...and that's the issue.

There was a networking meeting held with Lincolnshire's community groups both online and offline to talk about how we could all increase visibility and work together.

About how we can practically 'combine and conquer' if you will. It's an ongoing path but the footsteps have been laid and I think that open conversations about what each service offers, each group represents, are necessary because we do not talk enough.

The Lincolnshire Autistic Society is a society with a very positive track record in terms of actually 'doing' things and this links to how I am. We have to ask ourselves as societies, groups and the like as a whole in relation to autistic/disabled people; What are we doing?

What have we done? Can we use a platform, like the Lincolnshire Autistic Society or the Going Forward Festival or a regular conference to showcase ALL our county's works?

Similarly, with the free hugs on market day, do we WANT to open up our worlds to expand and grow the future?

The line gets blurry with the formal labelling of autistic and being 'disabled' and what each of those words mean but the principle remains. Everyone can DO more together. There is under-utilised potential in autistic and NT people alike, That, is the potential of us.

Check out my TEDx talk on utilising autistic people's potential here:

www.youtube.com/watch?v=oq9vcfOMKHM&t=348s



October 2018 - Foundational Steps

Oh so you're reading this right now? WELCOME!

This is the place where, every week, you get an authentically autistic point of view on issues that I'll pick and choose because there is simply so much of the world to digest and I only have one week!

If there's ever anything you feel like you want to know as a casual reader or there is a massively publicised issue that needs an autistic voice, I will do my best to get onto it pronto!

Perhaps you feel more experienced in the world of autistic people. Contact details are at the end of this column and I encourage open minds regardless of your role in society; Complacency and ignorance are toxic qualities in the autistic community, so let's work to clear the air.

I am mentioning all of the above because I am so passionate about creating tangible change and outcomes for people but also because I am launching a new support/action group for autistic adults.

What does that mean? Well, for those autistic people who are18+, I am welcoming discussion, job searches, expression through the arts...somewhere to go.

I call it an 'action group' to mean that things like protests, joint projects like art exhibitions, films, theatre shows will be worked on here. Of course, group participation is NOT required (believe me, I used to be scared to leave my house due to anxieties) and I will work on making this work for attendees.

Last week, I talked about the blurry line between formally diagnosed as autistic (like myself) and the many, many people that are undiagnosed but very much in need of validation if nothing else. All people that feel they will benefit are welcome!

The journey may vary but it is always autistic led.

More info coming very soon!

October 2018 - Life Is A Box Of Chocolates

So much to channel into one brief article again but here we are; Autistic Lincs!

Starting off, Kanye West met Donald Trump.

Surprisingly, The White House survived as opposed to imploding on account of the gigantic amounts of controversy both men have caused.

Though important subjects seemed to have been discussed, I do wonder how a meeting with Eminem and Trump would go now. (If you're not aware of Marshall Mathers' AKA rapper Eminem's feelings on The US President, check out his BET freestyle...)

Kanye, Trump and Eminem are all characters that either have suggested links or publicly acknowledged links to neurodiversity. Kanye himself has said that he is bi-polar. Trump and his son Barron have been called 'autistic' and Eminem is believed within the autistic community and perhaps further afield, to be autistic.

All sorts of fascinating for good and bad reasons.

Kanye and Eminem's high-profile artistic endeavours make them awesome advocates for neurodiversity, despite the same status in hip hop music having potential to cause a lot of damage to the name and value of neurodiversity. Donald Trump, surely the highest profile in the USA, has already done so much damage to autistic and disabled people with his mockery, remarks, affiliations with Robert DeNiro Junior on the brink of what appears to be a 'vaccine safety' panel/board in the hope that autism is 'cured' or 'prevented,' both of which are unwanted and unnecessary.

Does being diagnosed as 'autistic' excuse such reckless behaviour and bad decisions? I don't think so but it highlights a major need to reshape his perspective.

An online article from May 5, 2018 by The Independent (New York City) says: "As it is, Mr Trump appears not to have so far pulled the trigger on establishing the advisory panel" and I'm not sure where everyone is on the process but I hope we do not go on in such harmful directions.

Kanye and Eminem have created controversy too, sure, but in the case of Eminem, particularly focusing on autism, he is not in the public's mind as an autistic individual...which may be of benefit to him.

Considering how ruthless the rap game can be, with battle rap specifically designed to be oppositional with your words as weapons, I wonder about the backlash Eminem may face as well as how the hip hop community responds. Certainly, if Eminem announces without question that he is autistic, it will be a time to unite and celebrate rather than shame and stigmatise. As an autistic man that has loved his work and loved the man himself, I would also love if he stepped up to the mic with an unashamed declaration of autistic nature.

One can dream. You can say he already has with lines such as You're just gonna have to leave those other chumps on the backburner, you got buns, I got ass burgers/Asperger's from Heat but many would argue that until an official statement comes directly from The GOAT (Greatest Of All Time) as he and several others declare that he is, the jury is still out.

 

My own verdict on this topic is that there are various layers I have not explored in this trichotomy but I am excited to see where this world takes all three people.

If you read On The Right Slice Of History (Autistic Lincs, Free Press, July 16) you will know I was at the Trump protest in London...but I've internalised and much like with the National Autistic Society, I do not come from a place of hate...but of passion.

I have a passion for tangible change, for example in attitudes, to nurture a culture of acceptance and I believe that we will get there in spite of the immensely questionable/awful events of the past concerning Kanye West, Donald Trump AND Eminem.

Tom Hanks in Forrest Gump once said: “My mom always said life was like a box of chocolates. You never know what you're gonna get.” However, I DO KNOW that we have a future and it may not be Christmas yet...but we have a present...

October 2018 - Carefree Chaos

Good morning all!

This past week, in a picture, would be a flower growing in a war-torn country. There is still room for blossoming amidst the conflict.

Breaking this down into a few articles I read last week, I think of Claire Dyer.

Claire 'is among 34,000 people with autism in Wales and many have "fallen through gaps" in care provision, leaving families struggling to cope. The Welsh Government is trying to address this and is rolling out a Wales-wide integrated service. But parents have also called for more input in devising appropriate care plans.'

Additionally, I think of an article about Matthew, because, in reference to a care home setting, 'When he had a seizure, he would become aggressive, trying to grab people and they would lock Matthew in the central courtyard. This extreme behaviour was linked to sensory overload and anxiety but no specialist seemed able to tie it all together'.

This is a cycle rife with inconsistencies in practice, incapacities to cope educationally, financially or any other way and injustice within the care system in Wales and beyond.

Care home staff continue to abuse autistic people, through deliberate efforts or indeed neglect, due to misunderstanding what the autistic person is feeling/sensing and it hurts me.

More needs to be done.

Appropriate care plans should invite autistic people, online and offline, to participate in tangible conversations around what might be best for an autistic person.

I also believe that anyone that knows the autistic person and has a positive effect on them should be involved in the process. Unfortunately, that isn't necessarily the people a council might automatically go to, such as teachers or even parents. The communication channels have to be crossing both ways, as I have always made clear, for any real change to happen because this is awful news.

The final piece of news that entered my consciousness is about the three-year court case to overturn an initial pathologist report of Heddwyn Hughes, who 'had autism and was unable to communicate what he needed or how he felt, had been in the care of the state since the age of nine.

'The inquest, on the morning of May 6, 2015, heard that he suffered a "catastrophic" injury after collapsing to the floor of his bedroom whilst being lifted by staff. It took around four hours for him to be seen by a medical professional and it later transpired he had broken his neck'.

The doctor was originally unaware of such mistreatment and called it a stroke.

Mass communication difficulties resulted in a lost life. This kind of event is occurring far too often but if anything it reminds us to work towards compassionate, accepting communities that can do more in their own area as opposed to sending autistic people away without solid reasoning.

Autistic Led, a support group I am evolving, is to start this Thursday at Tonic Health, Spalding, from 4.30pm - 6.30pm and I hope that despite thoughts of many that 'services are stretched and it seems like there is no capacity for autism' I want to create a service with our local community that works for autistic PEOPLE.

Autistic people, especially with overlapping SEPARATE learning difficulties may never be free of care...but we, as a community, cannot be carefree.

October 2018 - The Journey Is Always Autistic Led...

It's here. The foundation steps of a prosperous journey for all, a support/action group for 18+ autistic adults; Autistic Led!

Many years ago, I felt like I should do more in my community as an autistic man who has been in the depths of depression and endured the stifling pressures of anxieties and fears. I am able to speak out and speak up for people like and unlike myself, passing the microphone to those that need their spirits and issues raised because society for too long has told them they're not worth it.

I endeavour always to provide a platform and utilise my own platform of the arts to create tangible conversations and get tangible results.

Autistic Led will be an extension of these principles.

But what about our existing services? How are we faring?

Let me tell you now that there are many more services and such that I do not mention but I felt it was only right to wave the flag for a few certain gems in our community.

Please contact me or the paper to let us know what you're doing within the community and any experiences you've had. Let's build each other up, hey?

Firstly, there is Little Miracles. They have so much that they do but one of those things are the monthly sessions in Spalding where parents can 'chat with other parents while your children play'. Catering for children with additional needs and/or disabilities, they open their arms to anyone!

The nature of their work is timeless necessity for not only Spalding but in life.

It's not best for you to hold onto any unaddressed issues because you feel vulnerable. It's a case of when you bury your head in the sand, the vultures come picking.



November 2018 - Filling The Gaps Of Knowledge

Callum Brazzo here again, sharing more Autistic Lincs and today, let's address a particular question;

Has Daniel always been autistic?

This question, if the morning TV segment could be isolated, is one that fired up social media pages like Twitter and Facebook but also the world in general.

Richard Madeley, best known for the daytime television show Richard And Judy, has been called 'embarrassing,' 'ignorant' and 'an idiot' because of his treatment towards Daniel Wakeford, member of popular show The Undateables. My view will not be everybody's view but i have seen this view floating around and it is that Richard Madeley's comments weren't all that bad in a grand scheme of things.

Yes, he is naive and you do not 'become' autistic due to vaccines or any exterior or interior influence at a certain age. Yes, he could have been more informed about autistic people before interviewing an autistic person and this in itself is indicative of a lack of communication in the media industry, but I would use this moment as an opportunity to learn.

It harkens back to Paddy and Christine McGuinness whom I talked a lot about in a previous edition and how they are making a documentary about 'autism and how it manifests' (taken from FemaleFirst.co.uk)

The McGuinness family and Richard Madeley are such high-profile people and all autistic people want in many cases to be listened to. That's all I want with the upcoming documentary and that's all I want from Richard Madeley. If Richard had made an inflammatory remark such as 'Autism must be awful to have' then I would more readily launch into why that is disgusting language to use about people.

The question 'Has Daniel always been autistic?' was answered quite well by Daniel's mum who said it was 'controversial' but that they discovered a difference in the pattern of development around about 18 months (that's not how she said it) but it was definitely a topic to stay clear of because the 'cause' of autism is so focussed on, it's ridiculous, because it shouldn't be a primary concern.

Autistic people want to date and be dated and whilst sex is not all that you need in a relationship, my thoughts on this aspect were shared in an earlier column, (Sex, Sexuality and Stigma) and relationships, sexual engagement and marriage are still not perceived as 'normal' for autistic people. This is why The Undateables is as polarising as it is because it's consciously promoting a separation between 'the dateable' and the 'undateable' but if Daniel himself saw it and volunteered himself for the show as it emerged that he did, then I'm all for it.

We have to utilise the platforms we have to embrace neurologies like the autistic brain, to engage in helpful conversations like what we can do to provide tangible results for autistic people and not pity and pander to them because we think they are 'less' than us.

A friend sent me a video of a TEDx talk in Singapore, with the event called TEDxPickeringStreet when Dawn-Joy Leong talks about Autistic Thriving.

That's at the core of it all. Thriving in a world that isn't historically skewed to how our minds work and whether it's singing, like Daniel Wakeford, or performance poetry like myself or perhaps Autistic Led, we have to find and sustain our platforms of expression and community engagement so that the most productive messages for autistic people can grow.

Our media outlets have a responsibility to uphold the best known resources and be the most authentic platform when it comes to autistic people.

 

 November 2018 - Feedback And Foodchains

As it always is, this following week was one of stark contrast. In Scotland, we had this news:

'The Autistic Mutual Aid Society Edinburgh (AMASE), an Autistic People's Organisation, published a report on November 7, highlighting major issues with mental health provision in Scotland, with over a quarter of survey respondents saying they were directly denied services because of their autism diagnosis, and many more saying practitioners failed to recognise serious distress.'

 

It's positive that such a report was conducted, therefore making information public and setting us on a path to potential recovery but it also reveals the deep wounds of our mental health system on autistic people.

Practitioners failing to recognise serious distress could tell us what many autistic people know; mental health issues such as depression and anxieties may present differently.

It is never okay to 'normalise' the suffering of ill mental health in autistic people or anyone else.

Unfortunately, this feeds into two more stories from last week about an event claiming autism is a 'man-made epidemic' and 'curable' and a wide-reaching online conflict on Twitter regarding ABA.

In Leeds and Manchester, there were events taking place that seemed to lump together autism and cancer (one topic was modern society's technological habits and somehow linking Wi-Fi to childhood leukemia and brain tumours).

Long story short, the original venue hosting the Leeds event cancelled it but it is my understanding that the event merely moved to another local venue.

With parts of the world spreading this hateful, poisonous rhetoric with actions to match, is it any wonder autistic people have mental health issues?

A final blow to the autistic community comes in the form of ABA (Applied Behaviour Analysis). Now, I have chatted a little about ABA before and will be protesting against what I see as 'tunnel-visioned endorsement,' meaning that any different views (primarily autistic) are excluded but it is obviously very popular.

 

There is an almost overwhelming load of info to cover this in full but a prominent autistic perspective on this therapy for autistic people is that it aims to make us 'less autistic' in favour of the world around us. Blend in. Act 'normal.'

(See more of my thoughts in September's Do Your Dance, Chloe). 

 

Again, factoring in this sometimes subtle training to 'fit in' to norms that are so often unnecessary and often viewed with that same tunnel-visioned endorsement, it is no wonder why autistic people get put into our fractured mental health system.

The Great War is over but there are still conflicts that exist that we must work to overcome. The ignorance and vulnerability that often fuels poisonous rhetoric and actions have to continue to be addressed.

In a world where we are fed so much information, through apps, churches, schools, newspapers and myriad other sources, we the people get to choose the foodchain we buy into and the feedback we give and take.


November 2018 -  A Wild Show

Now, for many of us, Chris Packham's contributions to society have been via his wildlife TV show offerings such as Springwatch. However, when his documentary Asperger's And Me hit our screens, he registered on a whole new kind of radar.

In Talent Speaks For Itself, I asked how Lee Ridley AKA Lost Voice Guy and comedian Robert White might choose to utilise their positions of power, what 'causes' they would fight for and perhaps which charities they would align with.

 

And while I feel like they are both doing well for themselves, I am admittedly unclear about their current journeys. The same can be said for Chris Packham; however, I DO know a place he visited last week: Gosberton House School.

The ECO school status of Gosberton House School aka GHS could not be a better match for the environment enthusiast and I am so happy that a man with his privilege would connect with such a place, let alone a local one. I may have mentioned this before, but many years ago, I worked at GHS - only for a year, but I learned a lot about myself and have learned so much more since as an autistic man and would love to return one day very, very soon.

 

Chris Packham also participated in an interview for the new documentary Return Of The Wolves, with the creators emanating from Lincoln. This is culturally intriguing but also symbolic of autistic nature. Chris was reported as saying once on a website about wolves and lynxes in the UK: "People are resistant to the idea of them coming back, which is a shame...because we do know better and we do need them and it would be tremendously exciting.”

I will not claim to know all of the factors involved in reintroducing these pure beauties into specific parts of the world but aren't autistic people much like wolves and lynxes and the 'norms' of society?

Autistic people 'coming back' from the depths of oppression, after many years of such counter-productive therapies like ABA and other, more apparent, abuse like the bleach enemas I've mentioned before. But it is tremendously exciting to have Chris Packham in our world because as with all autistic people, we can offer so much.

So with Chris and GHS as leaders in their respective sectors of humanity, you could say they're ahead of the Packham. Puns aside, they show that by putting autistic people forward and working WITH them in the world of school and work, it can be a Really Wild Show.

 

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

 

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