My lovely boy was born in 1984. We grew together – father and son – enjoying word-sounds, rolling toy cars across the floor, playing ball in the garden in determined and complicated patterns and he fiddling my ear while he fell asleep and, later, while I read endless books to him and … whenever he needed reassurance. He went to school, but there were accumulating difficulties with his routines, his outspokeness, his knowing a huge amount of detail about things far beyond the step-by-step build of education. He received a diagnosis of Aspergers but still had to fit into a society that neither really understood what Aspergers (or, even, Autism) is (and still doesn’t, by the way) but whose media was nonetheless ready trigger-happy to name whenever someone went on a rampage with a gun. He was mostly supported and accepted through primary school, but underwent a corresponding lack of understanding and (almost inevitable) bullying as his age-peers hit their adolescence and needed something against which to define how normally they were developing. My innocent and pattern-seeing boy became hurt and angry as he grew through his education, completing with a degree in History. He has learnt to become self-sufficient and self-determining despite all the lack of understanding he has had to live within. In recent years he has become very involved with movements concerned with autistic advocacy and representation – groups engaged in convening autistic experience, in campaigning against misrepresentation of autistics, in creating a Neuro-diversity Manifesto for the Labour Party, in bringing together information and support groups for autistic people. Especially, he has organised and run an Autistic Pride picnic in Hyde Park for the last five years – nothing more than a picnic where autistic people can meet and talk and be and relax and sing and recite poetry and connect and express themselves – and everything because of that. Joe gave a speech this year which moved me to recognise how much I love this 35 year old man who used to twiddle my ear when he was young. He has given me permission to share it with you all (the emphases, italics and bulletted iterations within the speech I have kept in):
-~~~ “AP” ~~~-
Pride, as a concept applied to marginalised groups, originated from the black power and black pride movement that sprung up in the wake of the civil rights movement in early 1960’s America. After the Stonewall riots in 1969, gay pride became a concept. Both movements were reactions to the dominant cultures at the time, which saw black and LGBT people as subalterns rather than full citizens and human beings, whose role in life was to either hide, keep their heads down, or assimilate. Both movements asserted the right to be conscious of your own dignity rather than look to wider society and its dominant White Anglo Saxon Protestant culture. For their sense of identity, both movements looked to other sources of validation, African culture in the case of black pride, and other liberation movements in the case of LGBT pride, but they also looked to other black and LGBT people for a sense of identity, looking to each other to empower themselves. Instead of assimilating and ‘keeping your head down’, both movements publicly asserted the right to be different, and emphasised this difference through dress, actions and many other ways. From the beginning, ‘Pride’ has been a self-empowering and self-determining movement: it grows from those very individuals seeking to establish themselves in society, and it grows through those very individuals achieving their own place in society.
Over the decades other marginalised groups have applied the concept of pride to themselves. Disability Pride came about in 1990, and Psychiatric Survivors Pride, which later evolved into Mad Pride, originated in Canada in 1993, which aimed, like the previous movements, to increase visibility and challenge the dominant narrative. Mad Pride is probably the most direct precursor to Autistic Pride, as the initial aims of the movement were to reclaim the identity of being mad from a negative one to a positive one, and also to reclaim terms such as ‘mad’, ‘nutter’ or ‘psycho’ from pejoratives to positive words. ‘Pride’ therefore seeks to:
- publically assert the right to be different by challenging society’s discriminatory laws and institutions (self-determination)
- publically assert individuality, visibility, identity etc. in the face of society’s prejudiced views (self-empowerment)
In 2005, a decision was taken on the internet forum ‘Aspies for Freedom’ run by Gwen and Amy Nelson, to bring the concept of Autistic Pride Day to the masses. The date of June 18th was picked because it was the birthday of the youngest member of the group at that time. Initially it was celebrated online, but in 2006, Amy Nelson led a group of people into Hyde Park on Autistic Pride Day and had a picnic there. This was quite a symbolic gesture and provided a template for public celebrations of Autistic Pride. Hyde Park has been a centre of public life for hundreds of years, and many radical movements originated there. Also, because it was in a park, people celebrating Autistic Pride were not cut off from the rest of society, autistic people were out there, in society, publicly and openly asserting ourselves, not hiding away either physically, or hiding ourselves from society, or each other.
I first came across the concept of Autistic Pride in 2007 when browsing on the internet, and was immediately inspired by this concept and the strapline “Acceptance, Not Cure”. I was diagnosed with Aspergers at 11, and by my early 20s I had partially accepted my autistic nature. While I had embraced some aspects of my autism – for example I was proud of my ability to memorise facts, my attention to detail, my strong and focused work ethic, my strong system of personal ethics, my ability to think for myself and not get swayed by group-think – if someone had asked if I was proud to be Autistic then, I’d have said yes. But in reality I was more proud of doing things that people said I couldn’t do. There were still parts of myself that I was ashamed of and wanted to hide and suppress. I was ashamed that I wasn’t as verbally fluent as others, that I struggled with speech and handwriting, and that I could be very emotionally sensitive, at times, both about people and inanimate objects, that I would have unusual facial expressions or body postures, that I could get overwhelmed by complex social interaction and could easily be taken advantage of, and various other things that weren’t glamorous or exciting. I tried to hide from the fact that these aspects of myself were also part of what I am and that they shape me just as much as my strengths. I was trying to succeed and get ahead in life in spite of my autism and I was still trying to force myself to live up to a mainstream conception of the ‘rebellious eccentric’ that wasn’t necessarily who I was. This is why coming across Autistic Pride meant a lot to me on various levels. Autistic Pride unashamedly demands acceptance from wider society, but equally calls upon autistic people to accept ourselves and everything about us. This is so important for both the self-determination and self-empowerment of autistic people.
The biggest factor that pushed me from supporting Autistic Pride to organising an event myself, was when I first went to Autscape in 2014. This was nothing less than a life-changing experience. For the first time in my life, I was in a physical space where autistic people were in the majority, and weren’t supervised by non-autistic people. It was great being amongst a group of people with mannerisms, reactions and life experiences that were similar to my own. I went away from it feeling a sense of belonging and relaxation that I had very rarely felt before, and I wanted to replicate this experience as much as possible.
In 2015 I eventually got around to organising an Autistic Pride event myself, and have done so every year since then, and will organise another one in Hyde Park on June 16th this year. Thanks to the efforts of Rachel Cotton in Reading, Kabie Brook in Inverness and many others, Autistic Pride has been brought to the attention of many more people. Although the first event I ran in 2015 was hastily organised, it was a massive success. About 20 people turned up. While most people just relaxed and enjoyed themselves in this newly-created Autistic Space, some others spoke at Speakers Corner and others entertained the group with speeches or songs. Being there, I got the same feeling that I did in Autscape in 2014. Although it has been incredibly stressful to organise the picnic, there have been many highlights for me during these events:
- I have watched autistic people go to Speakers Corner– a loud, intimidating environment – and still speak about Autistic Pride: self-assertion
- I have seen passers-bywho are autistic themselves notice us and become aware of a wider autistic community, often these people have never spoken to another autistic before: offering a sense of being
- I have seen people who aren’t autistic approach us, but acknowledge that it is our spaceand are deferential and respectful to our ways of being, which is a big difference from how things normally are: a sense of place in society
- I have seen that, although hostility is expected from members of the public, it never materialisesand the events themselves tend to be very peaceful, self-regulating and naturally inclusive of all: an autistic society
Over the four years I’ve organised Autistic Pride events I’ve seen people gain the confidence to open up, and seen people visibly relax and settle into this new-created Autistic Space. Over the years I have seen Autistic Pride develop a sense of self-determination and self-empowerment in these ways.
Autistic Pride has grown gradually over the years, but has expanded rapidly since last year: in 2017 there were 5 autistic pride picnics all over the country, but in 2018 there were 16, and I suspect there will be more this year. These were from Inverness to Exeter, from Cardiff to Cambridge, ranging from large festivals such as this one, to small picnics involving a dozen people. Autism Rights group Highland managed to fly their Autistic Pride Flag outside the Scottish government house on Autistic Pride Day last year. After the NAS and Ambitious about Autism tried to co-opt Autistic Pride in June, a group of organisers clubbed together to form the Autistic Pride Alliance, in order to ensure that Autistic pride events remain something that is run and organised by autistic people, and to swap information and help each other organise events. I’ll put up a link to Autistic Pride Alliance in the event page.
Every pride movement is different, and every Autistic Pride event is different and what works for Autistic people will be different to what works for other groups. It’s a fundamental trait of many autistic people not to conform socially, so any movement that accurately reflects the autistic community needs to reflect the individuality of each autistic person. Many of us struggle to travel long distances, many of us struggle with socialising, with crowds, with sounds and noises. And for these reasons watching the movement grow over the last year, I think it’s great how every single Autistic Pride event:
- is different in character
- has a different flag
- has a different conceptionof what Autistic Pride is
- while most events are clustered around June18th, some can be as early as April, while others can be as late as September.
- while some organisers have clubbed together, there is no centralised authority that directs Autistic Pride, and
- any attempts at gatekeeping are resisted.
Autistic Pride, as a whole, is a group that is all about self-determination. For individuals, Autistic Pride doesn’t necessarily need to take the form of public events. The organiser of Inverness Autistic Pride, Kabie Brook, told me that she celebrated Autistic Pride day by taking a walk in the park with her family. And enjoying herself.
Autistic Pride, as a whole, is a group that is all about self-empowerment/self-expression. At an Autistic Pride event you will find Autistic Pride in Action:
- Openly stimming, or vocalising or expressing yourself in your own body language is an example of Autistic Pride in Action.
- Standing up and passionately defending your own truth, regardless of convention or tone, or social dynamics even if it goes completely against the grain, or others consider it minor or pedantic, is Autistic Pride in Action.
- Seeking knowledge according to your own logic is Autistic Pride in Action
- Completely breaking social rules, if it doesn’t cause harm, is Autistic Pride in Action.
- Demanding to be treated with the same respect and dignity as others is Autistic Pride in Action.
- Walking away from something if you can’t handle it is Autistic Pride in Action.
In a world that in many ways encourages Autistic people to be ashamed of ourselves and in a world where we suffer greatly in many ways, then being happy and content with who you are, even if it is fleeting, is the most radical thing you can do, and the most challenging to the status quo.
Another thing I like about the Autistic Pride movement is everyone can get involved in it. Not only does it try to be accessible to those who attend it, if done right it is also accessible to those who organise it. And this is why I prefer that there are many events up and down the country, rather than a few large, centralised events.
Even though autistic people still have a lack of representation in wider society, some progress is being made, but Autistic Pride does not need to have a leader and a bureaucracy, and nor would it be beneficial to have them. Within human history we find that the “great leader theory” is being debunked and discredited. Activism based on a leader’s vision, or the charisma of a leader, or reliant on just one voice talking for the mass, cannot work for autism:
- having a leader will tend towards a larger organisation within which the activism can tend towards a unified message only, tokenism, and the individuality of the struggle become lost
- having a leader tends towards a hierarchy where people with better executive functioning accrue power such that the organisation will tend to meet the leader’s needs rather than retain its activist mandate
- leaders can easily become overstretched; having to assume leadership is a horrendous job to put on anyone’s shoulders (and for which only certain types of personality would be able to thrive), let alone someone with autism
- or the movement becomes over dependent and just collapses when an individual dies (Danda) (Mad Pride);
- it is not leaders who push open doors, individuals push open their own doors in their own lives
- leaders represent individuals, but don’t necessarily empower individuals within their individual lives
It is much more effective to have many autistics contribute their individual struggles to a cause than have someone do it on their behalf. As we have seen. When seeking to represent and advocate for ourselves we might borrow from the Big Issue slogan: ‘a hand up, not a handout’. We might borrow from Gandhi’s ‘satyagraha’ movement, a ‘struggle for truth’ through (non-violent) non-cooperation with established political, economic or social institutions which it was up to individuals to wage, whether alone or in groups. Gandhi resisted being the ‘leader’ beyond giving speeches about inequality and beyond simply inaugurating an action himself, which, because he was famous, meant that thousands joined in with him. The idea of ‘leaderless activity’ denotes a picture of a ‘movement’ which engages – individually or in coagulating groups – in actions which challenge established political, economic or social institutions. It would certainly be better and more inclusive for autistics if as many autistic people as possible owned a part of the whole struggle for Autistic rights and equality.
It is very exciting that this growth of activity of the last few years has happened. In order for it to keep momentum to educate wider society and its political, economic or behavioural institutions, it is clear, especially for representation of autism, that the momentum must maintain its grass-roots, the coalescence of thousands of autistic people around similar ideas working to make them happen. We need an Autistic Pride in every small town and village, as that way it will reach far more people, both autistic and non-autistic, and everyone who attends these events will play a role in shaping the character of the event.
Representation of autistic people needs to be done by autistic people, not representatives of those people. Autistic Pride will continue to grow whenever autistic individuals act to represent themselves or to express themselves – more so if they act with another autistic, or with tens, or with hundreds, or with thousands:
- “light it up gold”
- “Keeping NAS away from Autistic Pride”
- “How Autscape’s participants make it what it is”
- ABA conference cancelled in Leeds
And on a smaller scale:
- sending letters to organisations
- vocalising or expressing yourself in your own body language
- expressing your own truth, regardless of convention or tone or even acceptance
- seeking knowledge according to your own logic and need
- demanding to be treated with respect and dignity
Autistic peoples’ strengths are not usually in their charisma, or in their ability to manipulate, but in spotting details and patterns and thinking outside the box, and this is how every autistic person can contribute to our own liberation. The just mentioned events were successful because they were organised by autistics for autistics, and their success was that hundreds to thousands of autistics felt that they were legitimate and mattered and conveyed this to the wider society.
Out of all the points I have made in this talk, the one I’d like to emphasise the most from this is that each and every one of you here makes Autistic Pride what it is. A successful event will empower everyone present, and give everyone present the platform and space in order to uplift themselves. A failed event or movement will just reduce people to passive spectators of another person’s vision of what Autistic Pride should be.
Thank you all for coming to this event. We all belong here.