The Autistic Empire had a presence at the Autism Show in London this year, where we had the opportunity to speak to hundreds of people about our work and our plans.

Alex and Sarah also had a speaking slot at all three shows in London, Birmingham and Manchester on “Sense and Sensibility: findings from our Grand Sensory Survey”. It was a long month!

You can read more about the details about the Survey here (please note the survey is now closed).

Below are a transcript of Sarah’s introductory remarks.

“Hi there, my name is Sarah McCulloch and I am the founder of the Autistic Empire, which is an autistic social organisation built by and for autistic adults to form community based on autism as a civic identity and to provide practical tools and services for all autistic people.

I became an occupational therapist after a horrible experience seeking a autism diagnosis for four years. It took forever, I didn’t need it to know that I was autistic, but I still had that moment of terror of ‘but what if he tells me I’m not?’ I wanted to try and find a way to deal with a system that keeps us waiting around for years and then only validates us in our neurology if we are traumatised enough that we can’t teach ourselves how to function in society or mask things we want to hide. We founded the Empire on the basis that the number one problem all autistic people have, that we’ve found, is low self-esteem. We removed all medical terminology, all critical disability terminology, and even trying to portray autistic as a difference, because ultimately, difference from what?

The terminology of difference still centres neurotypical experience as the norm. I do not want my mind to be defined against someone else’s. We should be sufficient in ourselves.

So with the Autistic Empire, what we are trying to create is a autistic-majority society where autistic perspectives of the world are assumed. Autistic culture exists, as you’ve heard from many other speakers on this stage. The problems we may have as treated in the Empire as matter-of-factly as the visual impairment that means I am speaking to you wearing glasses. In a society, where nearly half of all adults wear glasses, no-one even thinks about the fact that technically, half of all adults are disabled and require visual aids to navigate their way through life. In the Autistic Empire, we are creating a community where the norms and expectations are set to those of autistic people the same way that signage in this society is set to the expectations of certain ranges of vision. In our vision, autistic people are free to be autistic, to develop themselves and work on whatever sensory, emotional or social issues they have, without feeling like they’re doing it wrong.

The unique advantage of this approach is that we are recruiting people who did not previously see themselves as disabled, or in need of help, or access to services. Based on both my personal experience after a decade knowing I am an autistic adult, and also in my professional career as a mental health OT, it is my belief that the number of autistic people is hugely underestimated, and that perhaps the majority of autistic people have no idea that they are autistic. But they don’t know because our current methods of identifying someone as autistic is based almost entirely on what you can’t do, rather than what you are.

We cannot liberate ourselves as a people until those of us who are managing in the world, who maybe feel like there’s something odd about them, like they don’t really understand other people, but they’ve still got partners, and friends, and jobs, maybe they keep losing jobs, but maybe they invented Facebook, see themselves in us and take their place in their community where they belong. We cannot function when our most successful citizens, and our wealthiest, do not contribute to our community because they have no idea what we have to offer them. Autistic people built the infrastructure of this society, we discovered the maths, we designed the systems, and we spent thousands of years taking things apart over and over again until we thought of something better. In return, I think we deserve to be happy.

We’re at the very beginnings of this process, and most of the people that we’ve met so far have been haphazardly found through our social networks and ironically, because they work with autistic people and loved the idea of what we were doing without considering that it might be for them as well. The people that we have met who we’ve informed that they are likely autistic have said that more than anything, they feel relieved. They have an explanation for why life wasn’t working for them. The world makes more sense than before they spoke to us.

The thing about finding autistic people who have no idea that they’re autistic is that they don’t google “am I autistic?” They don’t go to their GP and ask for a referral to a service that might not exist. The Autistic Empire is therefore trying to find what commonalities we have with each other that allows us to identify whether a person is autistic or not that’s more concrete than aspiedar and which doesn’t involve having to spend two hours with a psychiatrist and a letter from your mum. Given that variant sensory experiences is nearly universal, we started there, and ran a survey which focused almost entirely on the senses. And I am now going to hand over to Alex to talk about what we found.”

Check out the full findings of the survey here.

The Autistic Empire is a new institution that aims to provide services for autistic adults. There are currently many autistic-led organisations that act as liaisons between the autistic community and the neurotypical world, seeking to change public policy-making in our favour. There are also many medical, social and campaigning organisations that are run by neurotypical people who may or may not consult with autistic people to determine who they are and what they should want, and allocate resources and strategic priorities accordingly. Both of these strategies assume a power hierarchy with neurotypical people at the top and ourselves either asking to be let in or negotiating the terms on which we are accepted.

The Autistic Empire aims to create autistic-majority spaces where much of the stress and feelings of marginalisation that come from our door-knocking for acceptance can be alleviated and our people can concentrate on self-development and fulfilment, the development of our people and community and mutual support networks that are meaningful and conceptually based in the way that we see and interact with the world. There are a number of autistic advocacy organisations that exist doing good work to protect all of us, but they are primarily advocating for publicly funded interventions. It is our belief that the autistic people is made up of a hugely diverse crowd of people, some with disabilities, some who do not lead independant lives, and many who do have financial and social independence and have no need of publicly funded interventions. We all have problems that we face in our day to day lives, like everyone who is human, but the way we approach and solve them is often different to neurotypical people.

The Autistic Empire is a place for autistic people to get together and share what they have found works for them, to allow other autistic people to benefit from people who have been in the same position, and to develop tools and services that facilitates people to be happy and content.

Much of the work of the Autistic Empire as it currently stands has been informed by our interactions with autistic people who have been creating homemade coping strategies that we want to provide on scale. Our Q+A, for example, was built when we realised that people were posting questions asking for autistic people’s perspectives on social scenarios, or how to do something, to their personal social media feeds. We want good answers to be accessible by the world. Our Grand Sensory Survey was built while we were trying to figure out whether you could use autistic people’s sensory experiences as a more effective form of identifying autistic people who might never think it necessary to spend two hours explaining their childhood habits to a clinical psychiatrist, and couldn’t find any research on just what people experience and how that is different from neurotypical people. This article was written after a conversation with a friend who said they weren’t interested in being around other autistic people and why should they join?

Other ideas that people have input to us that we are planning to investigate:

• How autistic parents manage being hypersensitive to sound and the sound of children screaming – we’re going to create a podcast episode with an autistic parent to advise on this and other aspects of parenting from an autistic perspective.
• Living with other people when you don’t like other people but you can’t afford to live on your own – we want to put together a guide on common solutions people have found to managing your relationships with flatmates and potential sources of conflict such as sharing bills, cleaning, and mental health problems.
• Travelling while autistic – we want to publish an article on how people have found solutions to standing in enclosed spaces, managing artificial lighting and loud noises, and the ever-present reality of constantly getting lost.
• A speaking tour employing autistic adults to explain autism and answer questions to parents of autistic children.
• A customisable autistic alert card that people who need them can select the information that is specific to their experience of autism instead of generalisations of what autism is.
• A weekly course giving autistic people in geographical proximity who grew up without certain life experiences to visit common social spaces such as bars or swimming pools in a supported environment, and to develop social skills and friendship networks with other people on the course that they can stay in touch with when they graduate.
• Non-verbal autistic adults – up to a third of autistic people do not speak. These numbers are likely to be much lower due to the unknown but huge numbers of undiagnosed autistic people, but non-verbal people still make up a huge and neglected segment of the autistic community. We have been unable to find any support groups or representatives of non-verbal autistic people other than some small localised groups or exceptional individuals who have been published. The reports of these individuals is that it is assumed by nearly all professionals and those who interact with them that because they cannot speak, they have severe mental disabilities, and therefore it is not useful to try to help them to communicate in other ways. This is completely unacceptable. The position of the Autistic Empire is that you do not have to talk to communicate, and we plan on reaching out to non-verbal autistic people to offer them citizenship, consult them on their needs and integrate them fully into our autistic-majority spaces.

There are many, many conversations taking places all over the world on these kinds of issues, as autistic people problem-solve with ingenuity, inventive thinking and panache. We are not here to reinvent the wheel. We want to gather together what people have learned, share tools that already exist and apply our own knowledge to build tools that everyone can benefit from. We want to create infrastructure that autistic people can use to make their lives better, so they can get on with the business of being happy and do what they want with less stress, less anxiety, and less depression.

Maybe none of this applies to you and you have no need of these services. Brilliant, how did you do it? Enrol now and help others to be where you are. We’re planning on starting a peer mentoring service for autistic people with more life experience to support autistic people with less. We’d love you to take part. We are one people and we need to take care of each other.

Why the name Autistic Empire?

We have spoken to a huge number of autistic people at all levels of society, ability and need. We found that across the spectrum (ahem), people feel bad about being autistic. They have low self-esteem and low mood. Some of this is just the result of minority stress. We want to go in the other direction, to say that you as an autistic person have skills and talents that non-autistic people don’t have, and we think that’s great. You are great. The use of the term empire was to invert the general power dynamic of autistic groups seeking acceptance from a neurotypical society, to an empowered community, moving forward, in command of its own destiny.

Doesn’t the organised autistic community already exist?

It does. But there are also an unknown number of autistic people who live without diagnosis or knowledge of who they are but because they may be employed, in relationships, or otherwise moving through neurotypical society without the “impairment” necessary to be picked up by social or psychiatric services, who have no autistic identity or contact with other autistic people. It is our experience that there are significant numbers of autistic people who are integrated into neurotypical society, who do not consider themslves disabled, but who nonetheless have a feeling that something is “different” about them. Like the LGBT community, many of these people have, on finding out they are autistic, expressed relief to have finally received a conceptual framework and vocabulary for these feelings of difference and to initiate some kind of relationship to the organised community.

We want to identify, reach out to, welcome and integrate these people into our tribe and to create autistic-majority spaces into which they can feel like they belong and from which they can derive benefit. Policy-making for our community, and its financial sustenance, will be impossible as long as a significant segment of our people remain unknown to us. As far as we are aware, the autistic community relies on people who have already been told they are autistic finding them. We want to go find everyone else.

So join us!

Enrolment is open now, and only costs £9 a year!

This was originally published for another autistic website, now defunct, circa 2013.

Probably one of the greatest banes of my life as an autistic person on the Internet is watching the arguments go round and round over whether you should give your child the MMR vaccine. Maybe you agree with some of those who claim that you shouldn’t because it “might cause autism”. Here at the Autistic Empire, we’d like to share five facts with you that we hope will allow you to make up your mind.

1. The man who came up with the “MMR causes autism” theory has been struck off as a doctor.

Andrew Wakefield, or to give him his full medical title, Andrew Wakefield, published a paper in 1998, claiming they had identified a new syndrome which they called “autistic enterocolitis”, raising the possibility of a link between a novel form of bowel disease, autism, and the MMR vaccine. The authors noted that the parents of eight of the twelve children linked what were described as “behavioural symptoms” with MMR, and reported that the onset of these symptoms began within two weeks of MMR vaccination.

What Mr Wakefield failed to mention was that he had illegally and unethically conducted his research on his child subjects without their parents’ consent, that he had been given £55,000 by one legal group, and £450,000 by another, to find evidence against vaccines, oh, and that he’d frankly just made up a whole bunch of his results. The General Medical Council removed his licence to practice as a doctor in 2010 – he has now moved to America where various interest groups are funding him to continue in his claims.

2. The journal that published his research retracted it and apologised for not checking its numerous errors.

After a decade of scientists attempting to replicate the original study and failing miserably, The Lancet finally admitted in 2010, conveniently just as the GMC ended Mr Wakefield’s career permanently, that they were retracting the paper completely and admitted that it should never have been published because of the numerous errors in the methodology and results. Basically, it was rubbish, but apparently no-one noticed until we’d had numerous measles scares and at least one thirteen year old boy died.

3. Andrew Wakefield stood to make $43 million a year from scaring parents away from the MMR vaccine.

An interesting argument from some anti-vaccine advocates is that Andrew Wakefield, in doing his research, was taking a stand against Big Pharma and highlighting the damage that their quest for profit was wreaking on our nation’s children.

The reality of the situation is that Andrew Wakefield filed a patent without his employer’s knowledge claiming he was working on a single vaccine that would have made £4 million a year if he had succeeded in proving the MMR vaccine was unsafe. He also planned to sell diagnostic kits that he estimated would make him $43 million a year trying to diagnose “autistic enterocolitis”, an illness that doesn’t exist.

The reality is that Andrew Wakefield wasn’t taking a stand against Big Pharma – he is Big Pharma, who used his status as a scientist to prey on the anxiety of parents to put their own children at risk of an infectious and deadly disease so he could make millions of dollars.

4. Measles kills 158,000 people a year – mainly in areas that don’t have universal vaccinations.

The government does not generally like to just hand out free stuff – they do it when there is a compelling reason that that free stuff stands to have an immediate, measurable and dramatic impact on the public well-being. In Ireland, vaccination was introduced in 1985. There were 99,903 cases of measles that year. Within two years, the number of cases had fallen to 201. That is a serious public health benefit.

However, some people cannot be vaccinated – because they are allergic, because they are too sick, and other reasons. Those people are reliant on the “herd immunity” of the rest of us to ensure they stay safe; about 95% of the population needs to be vaccinated to prevent outbreaks of disease. After the MMR vaccine controversy, that level dropped to just 78% in some age groups – who are most at risk of contracting measles now. In 2013, there was an outbreak of measles in Swansea, Wales: 1,000 people, mainly under 18s, caught measles, 100 were hospitalised and one 25 year old died. Of those who have become sick, the vast majority have been unvaccinated.

If you choose to refuse to have your children vaccinated, you are not only putting them at risk of a disease that stills kills 430 people a day worldwide, you are putting other people’s children at risk who have no choice over whether they can be vaccinated or not.

5. The MMR VACCINE DOES NOT CAUSE AUTISM AND EVEN IF IT DID THAT WOULD BE BETTER FOR YOUR CHILD THAN DYING FROM MEASLES, MUMPS OR RUBELLA.

…just to be really clear about that. There’s nothing wrong with being autistic. It’s a lot more fun than being dead, I’m guessing.

So please, 
vaccinate
your
children.