Aphantasia Factsheet

You can download the content of this factsheet as a PDF here.

‘’Aphantasia is the inability to visualize mental imagery. Otherwise known as blind imagination.’’

‘’If you are like the estimated 1—3% of the population with Aphantasia, you may be unable to visualize any type of image in your head.’’

What Is Aphantasia?

Aphantasia is the inability to visualize mental images, that is, not being able to picture something in one’s mind. Many people with Aphantasia are also unable to recall sounds, smells, or sensations of touch. Some also report prosopagnosia, the inability to recognize faces. (Wiki)

Aphantasia was first named in 2015 by Prof Adam Zeman, a cognitive and behavioural neurologist at the University of Exeter. Zeman first became aware of the phenomenon when he was referred to a patient who had ‘lost’ his visual imagery after a heart operation.

Aphantasia was first described by Sir Francis Galton in 1880 but remained largely neglected until, Dr. Adam Zeman began his work in the early 2000s and coined the name from the Greek word “phantasia,” which means “imagination.

There is further research into this contention as it is largely unstudied at this time and is poorly understood. There have been long debates by researchers into the mind’s ability to visualize and how it relates to the brain’s memory functionality. Currently researchers have no indications that the impact of Aphantasia is negatively affecting memory. As many people are born with Aphantasia they do not realise that their experience of thinking about an item or person is different to how others experience. This means that there are people around the world that are living with Aphantasia without knowing.

When asked to visualise a sunset, for example, people with aphantasia are unable to conjure any kind of image to mind and will often have assumed that terms like the ‘mind’s eye’ are purely metaphorical. At the other end of the spectrum, people with hyperphantasia describe imagery so vivid that they can find it difficult to be sure whether an image was perceived or imagined

 

Key Facts

 

  • Some people are born with Aphantasia, whereas others can acquire it through traumatic incidents such as brain injury or periods of psychosis

  • Spatial imagery (e.g., the ability to recognise the distance between two places or mentally rotate and object) are unaffected by Aphantasia

  • There is some evidence to suggest autistic people are far more likely to have Aphantasia

  • Many Aphants also report having Severely Deficient Autobiographical Memory (SDAM), and most Aphants report reduced ability to remember the past or project into the future

  • Aphants appear more likely to have prosopagnosia (face blindness), a condition characterised by a reduced ability to recognise faces

  • Some people with Aphantasia dream visually, whereas some others report more having a sense of what is happening in the dream

  • Many do not discover that their experience is any different from that of others until their late teens or early 20s. It might be while reminiscing about the past and realizing they are having a different experience with memory than their friends or family. It is not that they do not notice that they do not visualize. They just do not know that other people do.

Signs

  • Unable to conjure a clear image of a family member,
  • Difficulty pictures their characteristic movements and gestures?
  • Unable to remember or visualize
  • No image at all, only “know” they are thinking of the object

 

If you feel like you might have aphantasia there is a VVIQ test you can do here on the Aphantasia website.

 

Reference Guide

NYTIMES

Aphantasia.com

Very Well Minded

Science Focus

Technology Networks

Blogs. Exeter

Scientific Research and Papers

A cognitive profile of multi-sensory imagery, memory and dreaming in aphantasia

(A)Aphantasia and severely deficient autobiographical memory: Scientific and personal perspectives

The blind mind: No sensory visual imagery in aphantasia

Aphantasia, imagination and dreaming

Reflections on aphantasia

Refusing to imagine? On the possibility of psychogenic aphantasia. A commentary on Zeman et al. (2015)

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.”

 

Making a Complaint

by Nicky Watkinson.

Having a bad experience sucks. Whether it’s poor customer service, an interpersonal interaction gone awry, or straight-up discrimination, there are lots of scenarios when a complaint is called for.

There are a number of barriers that prevent people from making a complaint – such as believing it will be ineffective; not being sure whether what happened is complaint-worthy; low self-esteem; social conditioning to silently accept uncomfortable situations – and even once these are overcome, the complaints process itself can often be overwhelming and confusing. This blogpost is a basic guide to complaints: why you should complain, and where to begin. It will be regularly updated, and will be accompanied by some template letters that you can adapt to your own needs.

 

If you want to complain, complain

 

As autistic people, we’re often trained to be apologetic and not “make a fuss”, but legitimate complaints are important. Most organisations take complaints seriously and will try to rectify the problem once they’ve been alerted to it. Even if your complaint doesn’t result in immediate change, it helps build a body of evidence for the future.

It is vital that we combat the myths around complaining. It’s natural to worry that you might be overreacting or misreading (especially if you’ve always been taught that the fault for any negative social interaction is with you, as an autistic person). However, if you had a bad experience, then you had a bad experience. Whether or not it seems like it’s “worth” complaining about is irrelevant; if you feel upset, angry, or even just confused, that is worth attention.

If you find yourself dwelling on an interaction more than a day or two after it happened, or complaining about it to people in your day-to-day life, or if the thought of it makes you anxious about future re-occurrences, then those are all signs you should complain. It might be worth thinking of complaints as a process of notification or providing feedback, rather than complaining – the word “complaint” has a lot of negative associations, and it can sound quite strong, which can be off-putting if you feel like it’s just a small thing. But if you frame it as a comment rather than a complaint, it can be easier to go through with – if you were the person in question, or the head of the organisation, wouldn’t you appreciate feedback?

The best case scenario is that you get an apology, your money back or some other appropriate compensation, and the bad thing never happens again. Even if it turns out that the complaint is unfounded – we’ve all misread things, whether neurotypical or not – you’ll hopefully get some clarification of the situation, and some closure.

 

The process

The key to complaints is going about them in the right way. Most of the time, a complaint is made after the fact, to someone who was not directly involved in the incident (I am assuming that if you’re reading this piece, you’re probably not one to immediately kick up a fuss with the person in question). The process will vary depending on the nature of the complaint and the organisation, but here are some pointers for figuring out where to start, and some resources to help you along the way.

 

 

  • Determining what kind of complaint or comment you want to make

 

Did you experience something completely awful and obviously discriminatory? You’re probably going to want to frame that differently to a comment about something small, e.g. how signage in a venue could be improved. Think about what grounds you have for the complaint or comment – is what happened illegal, or borderline illegal? Are you advising the organisation of a change they can make so that their customers have a more positive experience? Be clear on this so you know what tone to take, and what kinds of templates to model your response on.

 

  1. Determining the recipient of the complaint

This will vary quite a lot depending on the situation and the organisation. The first thing to do is check the organisation’s procedures for complaints – some venues will have dedicated customer comments email addresses or phone lines, others will direct you to the department in question. Exactly what you say in your complaint will have to be adapted based on the recipient – if your words are going to be seen by the person in question, that requires a different approach to if you’re complaining to a third party such as their line manager or a dedicated complaints department. If you can’t find any information on the organisation’s website or printed materials, contact their general enquiries team or reach out on social media – the best way to approach this is to ask “hey, where should I direct complaints / comments / feedback?”, rather than to launch in with the complaint.

 

  1. Drafting the complaint

There are lots of resources online for making complaints, some of which are linked below. Some things to think about are:

 

  • Tone: there’s a fine line between assertive and aggressive, and it’s important to stay on the right side of it. Don’t attack the person reading your complaint, especially if they aren’t directly to blame! Keep the tone as calm as possible – it’s fine to talk about how you feel (“I felt like I wasn’t being listened to”, for example), but it’s important to state this as plainly as possible and without aggression (“all your staff are terrible and should be fired” probably won’t get you anywhere!). Equally, don’t be too soft: make it clear that this is a complaint (or comment) that you expect them to act on – if you are writing an email, using “Complaint” in the subject line is a good way to both grab attention in a crowded inbox, and to be explicit about the fact that you expect them to take it seriously.

 

  • The facts: state, clearly and concisely, what happened. Give as many pertinent details as you can (where, when, who, etc), but try to keep it short as well. They don’t need a blow-by-blow account of the interaction or problem – they can contact you if they require more information – but it is good to give an overview (e.g. “In the lobby, at roughly 2pm on Tuesday 8th April, I was told I couldn’t breastfeed by a male staff member with a shaved head and glasses.”).

 

  • Outcome: what do you want to happen? What do you think is likely to happen? Company policies, if these are available online, are useful here, because they give you an idea of how the organisation plans to deal with incidents like this. It’s tempting, especially when we’re upset, to leap to extremes, but it’s important to be realistic – unless an employee did something extremely bad, constituting gross misconduct or illegal behaviour, they are unlikely to be removed from their post. Likely outcomes are things like giving the employee a warning, placing them on a probationary period, and retraining (either the employee or the whole team / organisation). Specify whether you are just raising the point for their information, or whether you expect a particular outcome: do you want some form of compensation, or an apology, or assurance that the organisation is reviewing its practices? This is useful information for the person reading the complaint, as it gives them something to act on.

 

  • Next steps: Do you want to be notified of the outcome of your complaint? If you don’t see evidence of them responding to your comment, will you escalate it to an external body or go public? It’s good to explicitly say that you expect a response within a certain (reasonable) time frame, as again this gives the person reading your complaint something to work with: e.g. “Please do keep me informed about the steps you’re taking to resolve this issue. I would appreciate a response within five working days.” (If you then don’t hear back within this time frame, I would suggest one follow-up email or call before escalating the complaint.)

 

  • Escalating the situation: if you don’t hear back from them within the time frame you set out, or they don’t respond appropriately, what will you do next? Options here include making a public complaint (e.g. on social media), or reporting the person / organisation to a third party.

 

Put all this together, and you have a complaint!

 

For further resources and template complaints via letter and telephone, visit our follow-up article inThe Vault (Citizens only).

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.