World Autism Month and Poetry Film – Christina Jane and Steve Downey
April is World Autism Month / Autism Acceptance Month which began on the 2nd of April as World Autism Awareness Day, and includes Autism Acceptance Week 2–8 April. Though for many it might seem a fairly new idea, this important time of year has roots going back as far as the 1970s.
Some years ago now – 2016 – I was external project lead on a poetry film project with Autistic teenagers at Butterflies Haven, Keynsham, Bristol, (with Director Trisha Williams). The project was run by the experienced team of well-known ecopoet Helen Moore and prize-winning digital filmmaker and musician Howard Vause. It turned out to be a great success and the parents found the process very revealing in helping those with Autism to articulate through film and a group situation, their particular experiences of life, school etc. As a mother with a daughter diagnosed with ADHD and many aspects of undiagnosed autism and ADHD in myself and in the family, I gravitate to any sharing of neurodivergence, in order for others to gain familiarity and understanding. I also have personally found that often there is a profoundly creative streak within Autism Spectrum Disorder (ASD) alongside less welcome factors such as anxiety and depression.
The poetry film world often deals with views from ‘outside the box’, and on many occasions the creatives involved are speaking from their own experiences – the position they find themselves in. I am extremely proud therefore to introduce a poetry filmmaking team – filmmaker and director Steve Downey and performer and poet Christina Jane (who prefers to be known as CJ). They are not only at the forefront of raising awareness about living with Autism and ADHD – they have made a series of four short films on both subjects – but also have received over 82 awards at international film festivals across the globe. I was so impressed with their approach to making creative yet informative and eye-opening filmmaking, that I suggested they should present their work at the CAW (Centre for Art and Wellbeing at Brighton University) online research talks, run by CAW co-director Dr Helen Johnson, which they did to much success in December 2023.
CHRISTINA JANE
Christina Jane (CJ) has both Autism and ADHD and is an extraordinarily creative person. To read her biography is to find a truly multi-talented individual. Poet, actor (since a child and with that all-coveted equity card), singer, spoken word artist, public speaker, digital artist, founding lead member of Neurodelicious as a performer, dancer, juggler, model, stylist, props etc. … the list goes on! Gaining an English literature degree at the University of Essex in 2004, (where she studied Modern Drama, Theatre, Shakespeare, Performance, Creative Writing, Playwriting and Screenwriting) Christina is an example of a person where life and art are one and the same: where if something needs to be done or said she will be the one to do it. She also is a full-time carer for a son with Autism and ADHD and as a parent is an active advocate of raising awareness of living with Autism.
CJ AND THE IMPORTANCE OF GETTING DIAGNOSED
‘My son was diagnosed with Autism in May 2016 and I was diagnosed in February 2017. He was diagnosed with ADHD in 2019 and I was diagnosed with ADHD the same year. Being undiagnosed with Autism and ADHD when I was an adult meant I didn’t understand until then why things were so difficult for me. This led to me secretly blaming myself. I didn’t know I was masking at all. I just thought I was doing what everyone else was by trying very hard to fit in. Trying to be like everyone else was a near impossible task. The diagnoses changed everything. I felt like I now understood why things seemed to be twice as hard for me compared with other people and why I had been misunderstood in the past. It felt awful going through it, but things make more sense now. I’m now focusing on the positives by public speaking on awareness and acceptance of both conditions and writing and performing about my experiences, which has often moved people to tears of relief.’
CJ ON PERFORMING WITH AUTISM AND ADHD
‘I’ve acted since I was a child in theatre and film and it’s so much fun working in a team and playing a role. My first performance as a Spoken Word Artist was for Autism Anglia’s ‘Neurofantastic’ in 2017 in thanks for the support that the charity had given me. Live performance isn’t the most inclusive experience for some autistics, so I wanted to put my poems into video form. My biggest collaboration has been with Steve as Director. All of them were visualising poems I’d written; therefore, I was the Screenwriter and Actress in front of the camera whilst Steve was the Director behind. It’s so much fun working in a team and playing a role. My Autism and ADHD can cause misunderstandings, but to counter this I might ask more questions on set or ask for more ‘direction’ to clarify what I need to do. I think my professional background in modelling and acting means that, as long as I know what is expected of me, I often surpass expectations. I can remain patient, determined, and consistent through multiple takes. I also feel that Autism helps me as a performer because I’m used to being a “chameleon” and changing according to who is around me. Most actresses only work when filming a scene, I’ve been an actress for my whole life through subconscious Autistic masking just to fit in! Also, my ADHD can be an advantage because I have a lot of natural energy, perfect for long days on set. I’ve never seen any actors like me, with both Autism and ADHD, except for our films.’
STEVE DOWNEY
Steve Downey also has an extensive and widely creative biography, and recently won the accolade of ‘Maestro of Cinema’ from an organisation in Calcutta. He says: ‘I originally trained in Fine Art (painting), leading to a two-year, post-graduate course at the London Film School, specialising in film direction and graduating with first class honours. After working in the film industry as a film and sound editor on a feature, documentaries and adverts, I spent the next 20 years working in the field of media resources as a senior manager in the Inner London Education Authority (ILEA). This included setting up the first Sixth FormFilm Studies Course in conjunction with the British Film Institute as well as overseeing the work of 600 media resources staff working in schools and colleges across London. In 1990 I went back to being an artist as well as arts consultant/administrator, culminating in heading the Arts Development Team for Essex County Council. As an artist I have held more than 30 solo shows, created dozens of public artworks, attended seven artist residences across four continents and run many art training courses for people aged 3 to 83.’
BEING DIAGNOSED WITH AUTISM
‘In 2020 I was diagnosed with Autism. This explained a lot about my experiences as both a child and adult as well my current disabilities including not being aware of social interactions, difficulties with sounds, not understanding what people say, not recognising faces and forgetting names. I believe that my autism has also provided me with certain talents, which include my unique artistic vision, ability to focus on tasks and organisational skills.’
BECOMING A FILMMAKER AGAIN
‘During COVID, the long period of self-isolation affected me greatly, including an “artist’s block”. I decided to do something radical about this by taking up filmmaking again after a long gap. My original training and experience were with film technology so now I had to learn how to work with video. In 2001 I had been successful in gaining a grant from the Arts Council to develop my practice in moving images, sound and writing as well as a Bursary from the Firstsite Gallery. These awards helped me gain additional training in video editing.’
COLLABORATING
Steve first met Christina when she posted a request on Facebook for filmmakers to help make her poems into films. It was also serendipitous as they both live not that far from each other, in East Anglia. With each artist being so prolific in their own right, I asked them to describe their joint approach and working relationship in more detail, as well as their experiences of being diagnosed with autism. I think they have produced a really fascinating insight into the filmmaking process for the four films: We are the Lost Girls, Invisible, What is it like?and Appropriate Social Response Number 3, all made between 2021 and 2023.
Steve takes up the story: ‘Christina and I started collaborating when she put out a call on Facebook in 2021, requesting help to make films about her poems. She did this because she acknowledged that live performance isn’t the most inclusive experience for some Autistics. We arranged an initial meeting to discuss the possible collaboration. We immediately felt a connection, partly because both of us had been diagnosed with Autism as adults. I read Christina’s wonderful collection of poems and we agreed on four poems to be made into short films, starting with Christina’s very first poem “We are the Lost Girls”.’
We are the Lost Girls is particularly poignant in that it concerns female diagnosis of autism.
CHRISTINA JANE
‘I wrote my first proper poem, “We are the Lost Girls”, when brainstorming for a speech I was going to perform as a public speaker in front of parents of Autistic children and professionals on the Good Beginnings course I had already attended. I wanted to give hope to the other parents and help them feel better, because I’ve been where they sat. I’ve written poems about Autism, ADHD and various other topics.
We are the Lost Girls
We are the Lost Girls deals with the ongoing issue of undiagnosed Autism in women and girls, who often present differently to males because the diagnostic criteria for Autism is based on research with Autistic men and boys. Traditionally males are more likely to be diagnosed at a younger age than women and girls with the same condition. Women and girls are also more likely to copy or ‘mask’ the behaviour of others so that they can fit in socially. They hide their differences and difficulties to avoid being teased or isolated. This complex picture can hinder the observation of recognisable symptoms and behaviour patterns. Thankfully we are finally reaching a stage of understanding where Autism and ADHD are becoming more recognised and accepted with the possibility of real diagnosis and help available to all. “We are the Lost Girls” came out of my hope that if I could improve the life just one woman or girl with Autism then it would all be worthwhile.’
STEVE
‘I created a storyboard treatment based on this poem and filming started during the late summer of 2021, utilising my art/film studio in Suffolk as well as location shooting at High Woods Country Park, Frinton-on-Sea, Norwich, Colchester Arts Centre and the City of Colchester. The filming went very smoothly. The editing was a lot trickier, because of my inexperience in video editing (having previously worked only with film). However, my one-to-one training with Jamie Weston from Signals helped solve this problem. I used copyright free music and sound effects where necessary. The editing took a long time, with Christina and I going through the rough-cut stages, until we were both happy with the final result, which was just over five minutes long.’
Here, Steve finds numerous settings to expand on the idea of different ways of changing identity: the running away from the camera repeated again and again, in a dark tunnel or a sylph-like setting with flowing dress and long hair. Of course, Christina is adept at playing these roles. I really like how CJ repeats the phrase ‘copied your actions’ of course emphasising the very process she is describing.
‘we are the girls who copied your words / … copied your actions / copied your actions so well / you thought we knew what to do / we never knew … we changed into actresses / to belong … chameleon girls … / we changed into masks to be normal/ we lost ourselves to fit in/ .. Lost girls who found so-called simple things difficult …
https://www.youtube.com/watch?v=-pHxHcZChgU&t=4s
Invisible
Once they had made We are the Lost Girls they began work on the three other films. Invisible is again particularly autobiographical for CJ as it concerns the issues of being an adult living with undiagnosed and unmedicated ADHD. Though, now diagnosed and therefore with more self-awareness, CJ says there are still issues she faces daily.
CHRISTINA JANE
‘Invisible starts by describing how difficult it is to see, explain and come to terms with the invisible disability of ADHD. It later discusses the chronic difficulties of the condition including poor memory, zoning out, time blindness, difficulty following instructions, struggling with attention, concentration, recipes, maps and timetables. It discusses the toll it takes on a person who is not diagnosed until they are an adult because the constant struggles create negative feelings like blame, shame, frustration and disappointment leading to mental health issues of anxiety and depression. The film ends on a positive note with my final diagnosis of ADHD, thereby getting the answers I needed to begin living. Invisible was shot in Steve’s studio and grounds, plus locations at High Woods Country Park, my house and garden, Firstsite Gallery, the City of Colchester and on Clacton Pier. The film incorporates a large range of copyright free music and sound effects.’
STEVE
‘I believe that my long career as a visual artist facilitated a highly original use of colour and composition, including using my own artworks as studio backdrops. I also used three of Christina’s original digital artworks in Invisible. Fortunately, I also had an excellent mirrorless digital camera and purchased a good microphone and a basic set of studio lights.’
I think that Steve does a fantastic job in creating scenarios where being invisible can be seen! Or, put another way, where the subject clearly feels invisible, though is seen by the audience. For example, looking in the mirror, ‘Who am I looking at?’ or CJ feeling her way along a brick wall. Disorientation and a sense of the surreal are also depicted in all four films. One of my favourite images or visual metaphors is where CJ lies flat on the floor wearing a red dress against a red background. Her long, streaming hair flows out behind, and she slowly moves her arms as if swimming. Of course, she is stationary but with the sound of a river flowing by we really feel a sense of frustration; of not only blending in, but also swimming against the tide, or running to stay still. And of course, Clacton (an English seaside resort with an amusement park) and its funfair chaos (particularly a speeded-up Ferris wheel) provides a visual metaphor for the mind: ‘racing thoughts churning and burning long into the night’.
CJ’s delivery is spare and direct, unequivocal and clear as a bell. Yet, at the same time she is also sharing that nagging voice in her head: a constant preoccupation with the self as a sort of constant puzzle to solve. Wondering why life is like it is in her experience, and the awful truth that for many of us correct diagnosis comes late in life, after misdiagnosis that can cause shame and a highly negative sense of self-worth.
‘It takes a toll upon me / Something I am still figuring out / Something I blame myself for / internally shame myself for … because for me there are no simple things / … so invisible even doctors couldn’t see it / … diagnosed with anxiety and depression a decade before ADHD / therapists showed me how I’d failed but never why’…
https://www.youtube.com/watch?v=2mCNBNl0kY8
What is it like?
CHRISTINA JANE
‘What is it Like raises thoughts, feelings and comparisons drawn between autistic and so-called “normal” people, between neurodivergent and neurotypical people. It’s about what it feels like to have Autism, comparing it to being a robot or an alien.’
This four-minute film was shot in Steve’s studio and grounds, plus locations at Clacton Pier. Christina appears beautifully made up, evoking party makeup, against glittery fairground attractions or in contrast a country scene, but staring out blankly or searching, as if somehow uncertain of her surroundings and disconnected. You feel as if the makeup represents part of the ‘mask’ Autistic people wear, another way to fit in; but at the same time, it also conceals her sense of feeling like a robot. She ‘cannot learn automatically like they do … I have to learn everything manually / like a robot / without a manual / on how life works… I have to figure out what to say / how to act.’
‘what is it like to have autism / how would you even answer / if I asked / what is it like / to be normal’
The wide disparity between neurodivergent and neurotypical people seems to be a gulf that at times feels unbridgeable. The very question ‘How are you?’ is not easy to answer for a neurodivergent person who often wants to say exactly how they are, rather than the accepted response. Being ‘normal’ actually seems to be attuned to a whole raft of conventions that people spout or display that are not authentic, but done to further a particular social gain or from learnt understandings of status, power and acceptability. Being able to see these played out, if you are neurodivergent, is not necessarily pleasant, nor a way to protect yourself, although as CJ says, acting and masking is a way of learning to mimic behaviour and ‘fit in’ and be included. In my view, if neurodivergent people sometimes appear naive, child-like and too honest, saying what they think, life can also feel like a never-ending roundabout you can’t jump on, coupled with social exclusion and misunderstanding at every turn.
https://www.youtube.com/watch?v=S2zmMe4YxXE
What is it Like? is being shown locally at the Colchester Independent Film Festival in May 2024 and the Southend Film Festival in June. This follows the first 2 films being shown at both these festivals in 2021 and 2022.
Appropriate Social Response Number 3
The fourth film Appropriate Social Response Number 3 about Autism, mental health and friendship, was shot at Steve’s studio and on location at a real gift of a surreal location at the Clacton ‘Upside Down House’, Clacton Pier and beach. Here, Steve’s filmmaking choices inside the house really support the meaning of the text, where Christina stretches from the ceiling to the bedside table on the floor in an upside-down bedroom. She ruminates on the ability or inability to make the right connection through words; when you feel a square peg in a round-hole world. Or, for example, when laughing at the wrong moment and others could take offense or be hurt or confused by the wrong response. Yet the need to keep trying is ever-present. ‘What are we without the words that bind us’.
For Steve and CJ, as well as being brought together by fate, it does feel as if their geographic location on the East Coast of England has contributed a great deal to their overall creative achievements. The ‘noise, show and glitz’ of Clacton’s entertainments, lapped by a grey North Sea, provides a perfect backdrop for expressing a masked and overactive, yet anxious state of mind.
https://www.youtube.com/watch?v=bNwZOjj_S3Y
CHRISTINA JANE: THE RECEPTION TO OUR FILMS
‘The films have been met with both positive personal responses and great critical acclaim. We have been blown away with the phenomenal success they have received! We are the Lost Girls and Invisible have each received over 20 International Film Festival Awards from all over the world and What is it like? has won 14 awards so far. The running total is now 82 Awards in a variety of categories. All the films are still being screened at Film Festivals across the world and the awards are still coming in daily. It makes me very proud and pleased that so many have seen my messages of hope and that they have deemed them worthy of such praise.
All the films have been shared extensively online on Steve’s YouTube Channel, through social media and screened at over 80 Film Festivals plus recent stage events called ‘Neurodelicious’. I’ve received such wonderful feedback on my poems and films across the board. One person even said that my “Lost Girls” poem inspired their master’s dissertation, therefore providing valuable research on female Autism. When performing the poems, people often come over and thank me personally, some in tears of joy, relief or recognition. Some people have contacted me later with news that my poem encouraged them to seek either a diagnosis for Autism or ADHD for themselves or family members. I’ve felt immeasurable joy being told that being successfully diagnosed has had a great positive impact on them, some saying “it’s like that film was made for me!” Neurotypical people have also found the films instructive, gaining insights into the challenges of those who are Neurodivergent, in a variety of ways that is unique to them, as well as simply being entertaining, colourful and uplifting.’
THE FUTURE
STEVE
‘I am planning a short documentary about our four films incorporating behind-the-scenes footage filmed by Tsvetislava Kirkova. The idea is that the films plus the documentary will form the basis of a TV programme broadcast by a TV network, as well as public performances.’
CHRISTINA JANE
‘My dream would be to act for a program about Autism, like ‘The A Word’ or ‘Atypical’, as they normally focus on the stereotypical male autistic journey. I have diagnoses for both Autism and ADHD. I’ve never seen any actors like me on TV or Film with both diagnoses. It would be a landmark in disability representation to have a character with both diagnoses accurately portrayed in a primetime TV show or big budget film as there is zero representation right now. Literally zero. Aside from my films of course! I’d be delighted to have the chance to audition for any suitable role.’
It is really rewarding to bring CJ and Steve’s story to you this April: from their fated random first encounter and their shared experiences of life with Autism, to a series of crafted and creatively informative, accessible yet also award-winning works. Not only are the films an inspiration to others but they are an achievement in their own right. Steve Downey and Christina Jane have used poetry and poetry film to shed light on their own lives, and thereby bring hope to others and raise awareness for those who are neurotypical. Importantly, these two poetry filmmakers have used the medium to find exactly their own way to communicate, (not an easy task for anyone whether neurotypical or neurodivergent), and as a result, in their capable hands, poetry film has provided a perfect vehicle for discovering more about Autism and ADHD.
Find more information on Christina Jane at: https://linktr.ee/ChristinaJane and Steve Downey at www.stevedowneyart.com
If you would like to learn more about Autism, ADHD and Autism month see:
UK
https://www.autism.org.uk/get-involved/raise-money/world-autism-acceptance-week-2024
https://www.autismtogether.co.uk/autism-acceptance-month/
USA
https://www.autismspeaks.org/world-autism-awareness-day
For an excellent book I can recommend on female diagnosis of autism: Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age, Sarah Hendrickx, UK: Jessica Kingsley Publishers, 2015.
