Image courtesy of Sarah Salles via Pixabay.
Think of autism, especially autism awareness and autism charities, and you probably think of the puzzle piece symbol - a shape that has become ubiquitous with autism and is said to symbolise the complexity and intricacy of individuals on the autism spectrum. Seems perfectly innocent, right? Well, what if I told you that this symbol does more harm than good?
2nd April marks World Autism Awareness Day, a day recognised globally, with the intention of raising and spreading awareness of autism and the challenges autistic people face. In recent years, this day has been met with unease by the autistic community, as many people and organisations share differing images, information, and perceptions of autism and what it means to be autistic.
This can leave many people, both autistic and allistic (non-autistic, sometimes also referred to as neurotypical), feeling conflicted in what to share, who to support, and how best to be an ally to the autistic community.
If you choose to engage in autism awareness you are likely to encounter the puzzle piece on everything from organisations’ branding to autism awareness merchandise, such as t-shirts and keyrings. But what does this symbol really represent and what impact does it have on the autistic community?
What is autism?
Before delving into the meanings of the puzzle piece, it is important to first understand autism as a condition, and the history surrounding it.
Autistic Spectrum Condition (often abbreviated to autism or ASC), is a life-long developmental condition, characterised by differences in the way an individual perceives and interacts with the world.
Autistic people often experience difficulties with communication (such as interpreting both verbal and non-verbal forms of communication, maintaining eye contact, and understanding tones of voice), as well as hyper/hypo-sensitivities to sensory stimuli (i.e. noises, lights, smells, tastes, and textures). Other characteristics of ASC include preferring to keep to a routine and displaying repetitive behaviours, difficulties with interoception and executive functioning skills, and developing special interests for specific topics - although there are many more.
Autism is viewed as a spectrum condition, meaning everyone with an ASC diagnosis exhibits a different range of symptoms and characteristics, each to a varying degree, and these can change throughout a person’s life.
History surrounding autism
Since it was first described by Austrian-American psychiatrist Leo Kanner, in a paper published in 1943, autism has, on the whole, been viewed in a negative light, with positive autism awareness and acceptance not beginning to take place until much later.
The term ‘autism’ was in fact coined long before Kanner used it in 1943. The term was initially used in 1908 by Swiss psychiatrist Eugene Bleuler, who derived the term from the Greek word ‘auto’ (meaning ‘self’), and used it to describe a group of patients of whom he diagnosed with schizophrenia, and saw as being socially withdrawn and overly concerned with the ‘self’.
Although Kanner made the distinction between autism and schizophrenia in 1943, the two conditions were still seen as related, and subsequently autism continued to be viewed as a debilitating mental disorder in need of a cure.
Further to this, misrepresentations of autism in the media, along with the theories of other psychologists - such as Bruno Bettelheim, who believed that autism was caused by inattentive parents have all led to people on the autism spectrum being viewed as lesser members of society. In his 1967 book Empty Fortress, Bettelheim went as far as comparing autistic children to prisoners of a concentration camp and stated that those with autism “never had a previous chance to develop much of a personality”. This has, in turn, led to autistic people being denied the same treatment and rights as allistic people, becoming more vulnerable to ostracisation and abuse, and even being viewed as less than human.
We of course now know that autism is a condition, not an illness or disorder, and does not require a cure, however, certain imagery and language used in association with autism still keeps these views and the stigma around autism alive.
What is the puzzle piece and where does it come from?
The puzzle piece symbol was first used in 1963 by the National Autistic Society, in a logo which depicted the image of a crying child in the centre of the piece. The supposed aim of the image was to symbolise how people with autism “suffer” from a “puzzling condition” and are unable to “fit in”.
Although now no longer used by the National Autistic Society, the puzzle piece has since been adopted by other organisations, the most notorious of all being Autism Speaks.
The controversy surrounding Autism Speaks
Since its establishment in 2005, Autism Speaks has been at the centre of controversy in the autistic community. From its founding until January 2020, Autism Speaks used a blue puzzle piece as their logo - undergoing a ‘rebranding’ early last year which only involved changing the colour of the logo, whilst still holding on to that ever-so-prevalent puzzle piece shape.
The controversy lies not only in what the puzzle piece represents at face value, but also in what Autism Speaks have done and campaigned for under their puzzle piece branding both in the past and at present.
Almost anyone working in autism acceptance and advocacy will tell you that ‘Autism Speaks is an autism hate group’, but what exactly have they done to earn this reputation?
Whilst an overwhelming amount of concerns over the practice of Autism Speaks have been brought to light, for the purposes of this article I have decided to focus on a select few key instances, starting first with advertising.
In 2009, Autism Speaks released a video advertisement entitled I Am Autism, wherein the ‘voice’ of autism can be heard saying things such as “I [autism] work faster than pediatric aids, cancer, and diabetes combined”, “if you’re happily married, I will make sure that your marriage fails”, and “I will plot to rob you of your children and your dreams”, among other, equally harmful and disturbing phrases.
Unfortunately it doesn’t end there. In 2006, Autism Speaks released a short film called Autism Every Day. What at first glance seems to be an innocent video of mothers of autistic children explaining their daily struggles with the condition, takes on a much more sinister turn when one of the executives of the organisation states that she has become so frustrated that she has contemplated driving herself and her autistic daughter off of a bridge, adding that the only reason she has refrained from doing so is because she has another allistic child.
Furthermore, the autistic children in the video are repetitively blamed for their families’ unhappiness, financial debt, and supposed inability to live a ‘normal’ life, with the sibling of one autistic child being heard saying “I wish I had a sister without autism”. The video ends with one of the executives explaining how she one day hopes a cure for autism is found, and that there will be ways of preventing children from being born with the condition.
Further to this, Autism Speaks has been accused of failing to include autistic people in their board, and lobbying to prevent autistic people being involved in policy making and research that affects their own lives. The organisation has also faced widespread criticism when it comes to their funding, with one study finding that only 4% of funding goes towards so-called ‘family services’.
Whilst in recent years Autism Speaks have attempted to rebrand and appear more ‘autism friendly’, many state that it is just a guise and the organisation will never be able to distance itself from its reputation, with former board member John Elder Robison stating that “it’s toxic rhetoric that has become the organization’s legacy.”
What does all of this mean for autistic people?
As discussed above, the controversy and negative implications of the puzzle piece symbol stem from two main sources: the meanings and connotations of the shape and logos themselves, and the actions of organisations under this branding.
Starting with the puzzle piece shape itself, many studies have found that the symbol evokes negative connotations. One study states that participants explicitly associated the symbol with “incompleteness, imperfection, and oddity”, and organisations such as Learn From Autistics say that the puzzle piece implies “confusion and mystery”, “something that is missing”, and that autism is “a problem that needs to be solved”.
In addition to this, the National Autistic Society’s use of a crying child on their puzzle piece logo and Autism Speaks’ use of the colour blue are seen to both spread the negative stereotypes that autism brings suffering and sadness, and that only people assigned male at birth can have autism.
All of this, alongside the actions of organisations which use puzzle piece branding, such as Autism Speaks, has led to the puzzle piece becoming a symbol of injustice and hate for the autistic community. What was once intended to be a symbol of autism awareness now perpetuates negative perceptions, stereotypes and behaviour towards people with ASC, leaving them more vulnerable to bullying, othering, isolation, abuse, and dehumanisation.
Being an ally to the autistic community
All of that may have left you wondering what you can do to better support the autistic community - which symbols to use, and which organisations and movements to follow.
Starting with symbols, a more widely accepted symbol amongst the autistic (and wider neurodiverse) community is the rainbow infinity symbol. The shape and colours of this symbol are said to represent the “infinite variations” of people on the autism spectrum, denote “endless possibilities” for autistic people, and intend to make clear the fact that autistic people do not, in fact, have a piece missing. In essence, the rainbow infinity sign symbolises that “you cannot fix what is not broken”. Other variations of the infinity symbol are also used and accepted, such as the gold infinity symbol.
When it comes to movements, arguably one of the largest events in the autistic calendar is World Autism Awareness Day. As previously mentioned, this day isn’t always met with great joy by the majority of the autistic community, as many organisations and groups use the day to spread misinformation and further perpetuate harmful stereotypes. One such organisation is (you guessed it) Autism Speaks, who each year ask the autistic community and the general public to “Light It Up Blue” in order to show support for their organisation.
To try to combat the harm this movement causes to the autistic community, the ‘Red Instead’ campaign was created. This campaign was made by autistic people, for autistic people, and aims to break the stigma and stereotypes surrounding autism by giving “actually autistic” people a platform on which to raise their voices about issues that concern them. Furthermore, the colour red is used in opposition of Autism Speaks’ colour blue, as blue is often viewed as a ‘male only’ colour, and also associated with sadness and loss. To get involved with the Red Instead campaign, simply post a photo of yourself to social media using the hashtag ‘#RedInstead’ (and wear something red if you can), to show solidarity with the autistic community.
Of course, autistic people don’t just need our support and solidarity on World Autism Awareness Day, so what can we do in our day to day lives? There are many things everyone can do to be an ally to the autistic, and wider neurodiverse, community. Simple actions such as listening to, and amplifying, the voices of autistic people, rather than speaking for us, as well as accepting our true austistic selves and allowing us to feel comfortable being authentically autistic, mean a lot. Whilst autism awareness was once of great importance as people were learning about the condition, what autistic people instead now need is acceptance and advocacy. The majority of the population now know what autism is, what is of real importance today is ensuring autistic people are accepted for who they are and are able to advocate for themselves.
Autism isn’t a disease, an illness or a disorder. Autism doesn’t need managing, medicating or curing. Autism is a condition that needs to be celebrated. Whilst autistic people face challenges growing up and living in an allistic world, given the right environment and support, we can thrive. Autistic people have so much to offer, it’s time we are listened to and accepted for who we really are.