There is a very good reason why I chose a jigsaw piece as the cover image for this blog. Please go with me on this whilst I try and set out why this, along with the context of the title of this blog.
The themes of this blog are symbolism and the emotions and feeling it carries, ignorance, how education should be the first port of call in instances of innocent ignorance, and that even we as members of the community can get it wrong sometimes!
Even as a member of the community, there is still a lot that I am yet to know or understand about autism and Asperger Syndrome.
I am connected with and follow another well-known autism advocate Rosie Weldon who is an excellent blogger too. These blogs have given me an insight into how the difficulty affects her differently to me, and I have gained an appreciation of how the difficulty affects her, her struggles and her strengths, and where extra support from those around her helps her. There is a beautiful vulnerability and humanity that comes with her writing that not everyone is brave enough or able to share or convey. In fact, my writing style is partly inspired by her's, as well as drawing on my own personality and character in that I like to engage people and be a little light-hearted and open and approachable in my writing about topics that may be considered heavy or complicated.
But its not just her, because I am friends with someone else who is autistic and they inspired me to go on a learning journey a little while ago. For privacy reasons I won't name them or use a gender-based pronoun as the point I am looking to make is within the conversation itself.
A couple of months ago I saw this as it came up as a "suggestion" on my Facebook feed. It was posted by a group page called Different Not Less
I saw this and thought it was a nice quote underneath - "no flaw in the code; different operating system". As someone who has a working knowledge of the different operating systems for computers and phones etc, I thought this was a novel way of trying to explain autism as different but not any lesser in a way that perhaps more people can appreciate having had our experiences with computers, phones and technology in our day to day lives.
However shortly after, I was pulled up on it by a friend and we started having a chat about it. You can read the exchange below:
Them: Are you a fan of the puzzle piece as a representation of autism? I'm curious why that is, if so 🙂
Lots of people, myself included, find it somewhat offensive as it suggests that ASD people are puzzling and/or have something missing.
Me: wasn't looking at the puzzle itself, but tried to interpret the wording underneath.
I have a reasonable understanding of different operating systems as a result of my dad having a pretty intricate knowledge and understanding of computer hardware and software, which naturally means some of it has rubbed off on me. I took it to mean that whilst there are differences between the systems, they aim to achieve the same thing which is to function to our most efficient based on the way that we are set up.
we see the obvious differences between windows, chrome OS and mac OS re visuals, layout, the different applications used to achieve the same as its counterpart (safari, IE explorer, chrome browser). they are different, not inferior or lesser. sticking with the internet browser example, each has their own view on what an internet browser should look like, how it should be laid out, how it should flow, how it should work etc.
I felt like the phrase "no flaw in the code" rang true with me due to those of us on the spectrum seeing the world differently, thus figuratively speaking working on a different OS.
take your point, though, and the design of the puzzle could have been done better. one suggestion could be to have it as a complete puzzle image and not with pieces disconnected or missing.
[A little while later after research]
Me again: I've now read further into the symbolism of the jigsaw piece, and I see now what you mean. like I said above, I didn't post this because of the symbolism of the jigsaw piece, it was because of the wording underneath it. it is likely that the designer either is a fan of the jigsaw piece symbol, or perhaps didn't know better
After reading it back again a few months down the line, its clear that I could have communicated things better! But as you can see, I genuinely didn't know that there was so much symbolism behind the jigsaw piece and such emotion generated from it.
Why is it offensive? That's the question I asked myself. So I went on a learning journey to discover why.
HISTORY AND CONTROVERSY (1)
The jigsaw piece was the symbol adopted by the National Autism Society in the UK in 1963. It was later adopted as the symbol for Autism Speaks, an organisation in America. Autism Speaks went on to use the jigsaw piece in large awareness campaigns in America, leading to the jigsaw piece being adopted as 'the symbol' for autism.
But these campaigns were particularly troubling to autistic people. They were modelled on campaigns to raise awareness of diseases and illnesses such as cancer and therefore the tone was that autism was a disease that needed to be cured. This was a truly terrible move! For such a large organisation to approach autism as a disease that needed to be cured was undeniably hurtful and offensive to the autistic community.
Not just that but in 2006 the organisation's leader at the time, Alison Tepper Singer, appeared in a short film called Autism Every Day developed by Autism Speaks where she talked about her desire to kill herself and her autistic daughter by driving off a bridge. She spoke of these urges whilst her daughter was in the room with her, making it particularly horrifying that it could ever be seen as socially acceptable for people to discuss these urges whilst autistic people, including children, were listening.
The above notwithstanding, the campaigning done by Autism Speaks in general held a lot of negative views and ideas about autism, which naturally were seen to be very unfair and offensive by autistic people and their families.
Due to this, and a lot of other issues with Autism Speaks, the community has found that the jigsaw piece is a reminder of an organisation that spent years framing it as a disease. As such, the community has viewed the piece as a negative symbol of autism, not a positive one.
WHAT IT REPRESENTS (2)
For autistic people, the jigsaw piece represents us as puzzling or a mystery, that we are a problem that needs to be solved, that it is a childhood disorder, or that something is missing.
A puzzle gives the impression that clear answers are not available. And whilst it is true that it being a spectrum difficulty means it impacts different people in different ways, many of us don't feel comfortable with being labelled as something the rest of the world doesn't understand.
Whilst the symbol can on one hand remind us of how little is known and encourage open discussion for the purpose of learning, it reminds autistic people that we, as people, are confusing which causes us to feel alienated from the rest of society.
The suggestion that autism is a puzzle that needs to be solved perpetuates the idea that there is something wrong with us, as you can see above with the controversies surrounding Autism Speaks.
There is a significant difference between talking negatively about autism itself, and talking negatively about specific symptoms or challenges. For me, I am very careful when disclosing this to potential employers so that they are aware that I encounter challenges and that some of the ways in which autism affects me can be negative, such as needing more time to fully understand something or another attempt at a task, which uses up more time that the company may or may not have. But it is very frustrating and discouraging to live our lives as if the world believes there is something wrong with us - not just with one particular thing we are doing, but with who we are!
Do you see the name of the group that I found the photo from? "Different not less".
Remember the movie Terminator Genisys? "Old, not obsolete".
I am also liking another couple of phrases that ring true, such as "Different but the same" in that we are all human but some of us just happen to be a little different. And then there's "disability ≠ inability", which is one I love because you'll find that disabled people, of which autism is technically a disability (3), have often had to overcome more obstacles than our able-bodied peers and colleagues just because of who we are and because the world is not geared towards us. I would say this makes our achievements no less than our peers, and perhaps even more due to the obstacles we've had to overcome.
The jigsaw piece is usually associated as being childish like a toy that children play with, and so it is wrongly associated with being something that only affects children and that attention should be paid to how it affects children and not adults. But autism is a lifelong difficulty. Autistic children grow up to be autistic adults. So the support may need to be adapted from what we received in our childhood when we become adults. As adults, we have gained maturity and wisdom enough to know what works and what doesn't work for us but it doesn't change the fact that we will be autistic until our last breath
The jigsaw piece also signifies that something is missing. That autistic people aren't whole and that they are less human.
But we certainly do not buy into that idea that we have something missing, and again having to go through life as if the world thinks there is something wrong with us, and explaining that we are no less deserving or worthy of the same respect and kindness and compassion and patience that are shown to everyone regardless of who they are, is tiresome and discouraging.
Why should we believe that we are not worthy of being considered just as equally as our neurotypical peers? Because we see the world differently and react differently including to things that overwhelm us that others may either take for granted or accept as just a normal part of life? Or that we benefit from that bit extra support and understanding and patience when we are working towards our goals? I do not and will not accept that just because we may need that bit extra support, we do not deserve the same respect as everyone else. The more support someone needs in order to get on in life is not correlated at all to the level of respect and kindness that we as humans deserve to give and receive.
SYMBOLISM NOW
Nowadays, the rainbow infinity symbol tends to be used by us as connected to the neurodiversity perspective.
But on the whole, we are hopeful that there will be a shift in the approach of autism awareness to focus more on creating acceptance for us in society. Acceptance of who we are, pure and simple.
Words and symbols may not appear to mean much, but the symbol of the jigsaw piece still represents a perspective that increases discrimination against us in society. And continuing to ignore the wishes of the community to do away with symbols that remind us of our discrimination in society, or that people sometimes do kill us because we are autistic, is highly disrespectful to the autistic community.
So what happened here is that I shared a photo that incorporated a symbol that is considered offensive and disrespectful to autistic people. I got it wrong! There are no two ways about it!
It should also be noted that reactions to ignorance can also play a huge part in a learning journey
Rosie wrote about the difference between someone being innocently uneducated and someone being outright hateful (4). These are two different sets of people and if we treat both as if they were being genuinely hateful, then we could lose someone who could become a valuable ally for simply being innocently uneducated at that moment in time.
At the time of posting the photo, I genuinely didn't know the history and controversy surrounding the jigsaw piece due to lack of education and awareness. So my friend kindly raised it with me and gave me the impetus to educate myself further.
Following this learning journey and gaining a greater understanding of the symbolism behind the jigsaw piece and the controversies around it, I am better equipped to see that I should have thought twice about the whole of the above image rather than just focusing on the nice quote underneath. I now know not to make that same mistake again!
The key takeaway here is that education should always be the first port of call, unless there is a real reason to believe that someone is being intentionally hateful or hurtful. I am a big believer in the idea that education starts the journey to the eradication of ignorance. But I know that education only goes so far. A person has to want to be educated and has to want to see a different perspective or side of the story. Otherwise, they are just being hurtful.
Oh and also that the aspiring advocate isn't infallible either!
Be safe and be well! :)
P
(3) A disability is defined by the Equality Act 2010 as a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities. Substantial means 'more than trivial', ie takes much longer to do a simple daily task like getting dressed, and long-term means 12 months or more, either it has lasted so far or is expected to last 12 months or more. Autism is a lifelong difficulty that can affect some on the spectrum quite substantially, eg nonverbal or very slow development academically or socially, so is covered by the Equality Act.
Credit: cover image photo by Markus Winkler on Unsplash