Autism Show Introductory Remarks – Transcript

The Autistic Empire had a presence at the Autism Show London 2019 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 the Autism Hub Theatre (managed by the Participatory Autism Research Collective) on “Sense and Sensibility: findings from our Grand Sensory Survey”. 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 – if you want to find out more about the findings of the survey, we will be speaking at the other Autism Shows as well:

Saturday 22nd June 12.00 – 12.30, Birmingham (NEC)
Saturday 29th June 12.00 – 12.30, Manchester (EventCity)

We will release a write-up of our findings and what we intend to do with them after that.

Transcript

“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.”

 

 

Autistic and LGBTQ: The Facts

Being LGBTQ is incredibly common among autistic people. If you’re involved in the autistic community, this is easily observed, but there is also factual evidence – and we all know how much us autistics love factual evidence! Pride is a great month to spend some time learning about the way being LGBTQ and being autistic intersects, so we wanted to share some of the facts with you. Here are some studies and articles detailing the science behind the intersection of autism and queerness.

Sexual Orientation in Autism Spectrum Disorder Statistics

In a 2017 study by the International Society for Autism Research (INSAR), 69.7% of autistic participants reported being non-heterosexual. Researchers surveyed both neurotypicals and autistics. Only 30.3% of the neurotypical participants reported being non-heterosexual.

Increased gender variance in autism spectrum disorders and attention deficit hyperactivity disorder

In this study by the Center for Autism Spectrum Disorders, they discovered that compared to neurotypical participants, autistic participants where 7.59x more likely to express gender variance; participants with ADHD where 6.64x more likely to express gender variance.

Dual spectrums: More people with autism identify as LGBTQ than general population

An article by the Daily Herald touches on the statistics of being autistic and LGBTQ, and showcases the stories of three autistic and LGBTQ individuals.

Why we need to respect sexual orientation, gender diversity in autism

In an article by John Strang for Spectrum News:

“There may be solid biological and psychological reasons for the high prevalence of sexual orientation and gender diversity among autistic people.

Autism and sexual identity may share a biological pathway, perhaps one involving sex hormones in early development. Or sexual orientation and gender diversity may be expressed more often in autism because of a decreased adherence to social conventions. Or perhaps a greater forthrightness and honesty in autism allows some autistic individuals to acknowledge feelings beyond traditional sexual orientation and gender identity categories.”

Living between genders

A Spectrum News deep dive article tells the stories of autistic and trans and/or gender-nonconforming kids, teens, and adults. “Trans people with autism express a gender at odds with societal expectations, or reject the male-female divide entirely. Many are breaking new ground on how identity is defined — and what it means to also have autism.”

 

Trans and Autistic – Resources

Many members of the autistic community are transgender, non-binary, and/or gender nonconforming. Many of us have unique experiences and perspectives of gender. Here are a few resources:

Overview

Statement by Autistic Self-Advocacy Network, National Centre for Transgender Equality, and LGBTQ Task Force on the Rights of Transgender and Gender Non-conforming Autistic People (2016)

Sexual Orientation, Gender Identity and Asperger/Autism by the Asperger/Autism Network – General overview of some of the ways autistic people experience their sexuality and gender identity.

Personal experiences

Gendervague: At the Intersection of Autistic and Trans Experiences – Lydia X. Z. Brown

How Our Society Harms Trans People Who Are Also Autistic – Katelyn Burns

Science

The Link Between Autism and Trans Identity – Article in The Atlantic on how autistic people who are trans may be prevented from accessing healthcare because of their neurological status. Interesting fact: “The study found that participants on the autism spectrum were 7.59 times more likely to “express gender variance.””

Living between genders: A in-depth study of research into gender variance and autism from Spectrum.

Autism Traits in Treatment-Seeking Transgender Adults (2018) – Autism Research Centre sponsored article looking at whether there is a correlation between trans people registered at Gender Identity Clinics and autistic traits.

Abstract:

“The present study aimed to compare prevalence of autistic traits measured by the self-reported autism spectrum quotientshort (AQ-short) in a transgender clinical population (n=656) matched by age and sex assigned at birth to a cisgender community sample. Results showed that transgender and cisgender people reported similar levels of possible autistic caseness. Transgender people assigned female were more likely to have clinically significant autistic traits compared to any other group. No difference was found between those assigned male. High AQ scores may not be indicative of the presence of an autism
spectrum condition as the difference between groups mainly related to social behaviours; such scores may be a reflection of transgender people’s high social anxiety levels due to negative past experiences.”

More background information one of the authors, Anna Nobili, who is doing her PhD on interpersonal issues for trans people transitioning: http://programme.exordo.com/epath2017/delegates/presentation/32/

 

Some autistic trans people to check out

Seranine Elliot, a musician, model, and activist: Bandcamp, Facebook

Alistair H, artist and activist: website (fr) YouTube (fr)

Asharah Saraswati/Art Twink, artist: FacebookInstagram

Shain Neumeier, attorney, advocate: websiteTwitter

s.e Smith, writer, editor: websiteInstagramTwitter

Lydia X. Z. Brown, advocate, organizer, writer: websiteFacebookTwitter

Making It Through the Holidays Relatively Unharmed

Many of us dread the holidays season for many reasons from family troubles to blaring Christmas music and flashing lights. Here’s a few survival links to help you plan ahead to avoid as much unnecessary trauma as possible.

If you are traveling or just going to visit, this will help you through the planning process.

How to Attend to Attend Family Gatherings When You’re Autistic

This is a lovely blog post viewing your participation and their respect for your needs as gifts.

Autistic Gifts and Expectations

The day of a family gathering consider some exercise, meditation time, or gentle music to ease your stress. Try to relax. The less you start off, the less you accumulate throughout the day.

By now you’ve got preparations down, so now it’s just family or friends to get through. Hopefully, this is the pleasant part, but for many of us it isn’t. If you have a toxic family you can’t avoid, try to remember it is only for a limited visit. You can leave if you need to. Try to keep the conversation light. Avoid controversial topics or subjects of family disagreement. Refuse to engage in blame games, but forgive yourself if they rope you in. Know you can also walk away for your own mental health. *You are not required to engage in painful or triggering conversation just to please others.* Repeat that previous sentence as often as you need.

I also try to prepare aftercare ahead of time. Do you need a dark room and silence? A small treat? Exercise? Just something to be kind to yourself and help you unwind. These two may already be part of your regime for regular life as it is for me. But if you aren’t thinking ahead, you may struggle to release the stress when you return home.

Hope you have a happy, safe holiday. We’ll have more for you next year.

 

 

So you think the MMR jab is dangerous…

 

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.