I hate the puzzle piece. I hate it with every fiber of my being. Therefore, since in a lot of places it’s national autism awareness month, I’m going to write about why you shouldn’t use the puzzle piece.
First; a little history on the puzzle piece. It was originally a national autistic society symbol. It’s history is documented here , towards the end of the piece, but the important bits regarding the puzzle piece are quoted lower down here. (trigger warning for ableism on that piece).
That first logo was this.“’The Committee decided that the symbol of the Society should be the puzzle as this did not look like any other commercial or charitable one as far as they could discover’. It first appeared on our stationary and then on our newsletter in April 1963. Our Society was the first autistic society in the world and our puzzle piece has, as far as I know, been adopted by all the autistic societies which have followed, many of which in their early days turned to us for information and advice.
The puzzle piece is so effective because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’. The suggestion of a weeping child is a reminder that autistic people do indeed suffer from their handicap.
If, in the future, we can invest in our Society even more thought, effort and commitment, our puzzle piece will, at least in this country, become no longer just a logo on a letterhead but a symbol of hope for autistic people and their families.”
Let’s take this apart. So, it was adopted because it didn’t look like any other logos, which is fine. But then this apparently tells us something about autism, which is not ok. Now, this piece is from 1997, and the logo was changed in 2002, so this does not likely reflect current views of the national autistic society, although it is still on their site. Apparently we don’t fit in, we suffer (hence the weeping child)because we are autistic, and we are puzzling/ disabled by a puzzling condition. Oh, and it’s supposed to be a symbol of hope. I’ll explain why all these things are bad later in this post, but this is mainly here to show that the puzzle piece never, ever had positive connotations.
It has now of course been co-opted by organisations far worse than the national autistic society ever was, like Autism Speaks, which if nothing else is a good enough reason it give it up on it’s own.
The first problem I have with the puzzle piece is that it’s a very childish symbol. Although many adults do love jigsaws, it is predominantly a child’s activity, and as such has connotations of childhood. This is bad for the autistic community as a whole, as more of us are adults than are children, but people really do forget we exist, and that phrases like “autistic children and their families” excludes a good chunk of the autistic population. We really don’t need more association with childhood. It’s hard to deny that images like this are undeniably childish.
There is then the issue of the implications of using a puzzle piece. It implied that we are something to be solved or fixed, which simply isn’t true. We don’t need to be fixed, or solved there’s nothing wrong with us, and most attempts to fix us, such as ABA are actively harmful. This implication of the puzzle piece is reflected is autism speaks “until all the pieces fit” rhetoric, and reinforces the idea that we are broken.
Another thing the puzzle piece is supposed to symbolise is the “mystery and complexity of autism”. Autism is no more mysterious or complex than any other neurological disorder really. And it doesn’t exist as a thing separable from autistic people, so they’re really trying to say that we’re mysterious because they don’t understand us. Clue: Just because you don’t understand something doesn’t mean it’s mysterious. The key part in that is you not understanding something, because autistic people tend to understand ourselves pretty well, and allistic less well, but we don’t get to go around calling you “mysterious”, because well, we’d look silly calling something mysterious because we personally couldn’t make sense of it. I don’t go around calling calculus mysterious just because I personally don’t understand it, because I understand that there are people who do.
I’ll touch on the colours issue since most puzzle piece art for “autism awareness” is in this colour scheme of bright red and yellow, light blue and dark blue. So, that’s supposed to represent the “diversity” of autistic people? With a really childish colour scheme? When most us are adults? Yes, we’re all different, that’s true with any group of people. I don’t really get how three colours represents diversity either. Maybe a rainbow would be better like, I don’t know, the neurodiversity symbol?Hope for autistic people. What does that mean? “hope through research and awareness” doesn’t sound very good to me. Research seems like cure, because, well has the understanding of the neurotypical brain really improved neurotypical lives? Are most allistic people somehow better off than they were a hundred years ago because we now know which part of the brain is connected to emotions? Obviously not. People being vaguely aware of autism doesn’t actually help very much either. Acceptance would, but really, the puzzle piece is about fixing us, not helping or accepting us.
We’re people, not puzzles, we’re whole, there’s nothing wrong with us. There are indeed communication barriers between autistic people and neurotypicals, but they go both ways, we are not the puzzle. You only see pieces missing from a person if you have this preconceived idea of what “person” looks like. If you don’t then you just see a person who’s not like you. This is the idea behind neurodiversity, that we may not be like you, but that this doesn’t mean that there’s something wrong with us.Now, people do argue that since it’s an established sign for autism (regardless of whether a lot of that was done by autism speaks) people should continue to use it. But is is a harmful one, it doesn’t have any positive meanings and it never really did. It isn’t, therefore, something we should be trying to reclaim as autistic people, as it isn’t really a neutral symbol used against us by organisations like autism speaks, it’s always been a negative symbol.
We have positive symbols, like the National Autistic Society’s new logoand the neurodiversity symbol so we should use them.
If you can think of any other points do put them in the comments, I’m sure I’ve missed one or two.
Links to other people talking about the puzzle piece
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January 11, 2018 at 3:42 pm
Hi Alex, I already strongly agree why the puzzle symbol is no good for us, before finding your site.
Recently I have been looking for the most appropriate symbol that I can use as a positive identifier for myself. I am an Aspie, formally diagnosed as an adult on the autism spectrum, and have had some improvement at managing the NT world with Cognitive Behaviour Therapy, which has helped me manage anxiety and other aspects significantly.
I often find it frustrating that NT’s impose their view of autism on me, including that still being autistic requires more medication. Very frustrating, when in the right environment I have been very capable of making a useful contribution in certain technical fields. The diagnosis came as a result of seeking therapy for coping skills, and further referrals resulted in formal diagnosis, and the current acceptance of the autism label has saved me a lot of frustrating explanations that usually seem to get nowhere. Although I’ve always accepted myself, at last my lifetime of struggle is understood by some.
There is still a way to go in how society treats neuro diverse people as needing fixing, rather than acceptance and support, and I feel I understand where you are coming from in what you express.
All the best
March 13, 2018 at 4:25 am
i really respectfully do not think the color of the ribbon matters. Autism has so much research and services (my brother has autism), that is the only thing we should really be worried about. The more colorful, the more noticeable something is. The disease I have is extremely under-diagnosed, many doctors have never heard of it and there is little funding. So instead of arguing about a little thing about what the ribbon looks like, i think we should all be glad there is so much research and money going into autism. This is my opinion, please do not attack me. Again I have a brother who suffers from autism. I hope we can all stop fighting, because it is not helping anyone.
May 3, 2019 at 4:52 pm
So you think you have a right to talk over actual autistic people just because you are related to an autistic person? You really think that’s ok?
Nothing you have said was ok from the extremely probmatic”suffers from” that most professionals have stopped using to the point where you went on about how we don’t have the right to criticize the colors of the logo.
Please stop and stay in your lane.
February 20, 2020 at 1:19 pm
Vanessa, I agree with you. My 26 year old daughter is moderate/severe autistic and it infuriates me that people who claim to have autism are out here making statements about awareness, logos, etc. Yes, I understand there are different levels of autism, (which I strongly feel there should be some changes with the way the autistic spectrum diagnosis is used). If a person can write such a well written statement as the lady who started this post, and attend college, and pass a bar exam, like we have seen as of late, there has to be something changed in the way the diagnosis is handled. My daughter can’t tie her shoes and can barely write her name. Yes, she is a beautiful puzzle piece. Not because she doesn’t fit in, but because she is a mystery. She is a mystery or puzzle because as her parent I have had to figure out her needs and wants without her having the ability to tell me. Down to the simplest things, like the food she likes to eat, how she feels, if she is sick etc. I am good with awareness, people need to know why she is having a melt down in the restaurant because she overwhelmed with the noise. Yes, we need acceptance, but acceptance doesn’t mean that my daughter gets a free pass to behave anyway she wants and disrupt the people we come in contact with. I want them to be understanding, but I also have to be a responsible parent and not let her disturb customers in a store owners shop or damage things that belong to other people. So, why everyone is fussing about logos, colors etc there are real problems out here. I actually had a worker at the disability office say the following ” well, how do we really know how disabled she is? ” Someone just got a law degree who is autistic” so these success stories are great, but be aware not everyone is on the same level.
April 8, 2021 at 2:41 am
Vanessa you just insulted every individual on this thread. Now I have a son that’s on the Spectrum and I would never try to tell him how he should feel. I could never do that because there’s no way I can fully understand. So just because you’re brother has autism doesn’t make you an expert
March 19, 2018 at 5:37 am
There are adult jigsaw puzzles out there.
March 23, 2018 at 5:27 pm
The fact that my blog is nowadays headed by a customised version of the rainbow infinity symbol, and that another version appears on my personal cards makes it fairly obvious where I stand. Thank you for this excellent post.
August 22, 2018 at 9:16 pm
I don’t see the connection with this symbol.
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May 16, 2018 at 2:32 pm
Hi Alex. I am an Autistic girl that loves the true symbol for Autism. I believe the true meaning behind the puzzle piece is that we all fit together in our own ways. I know that it seems odd, however, I think people prefer different things but honestly,the puzzle piece shows all of the history of autism research.
August 22, 2018 at 9:16 pm
May 30, 2020 at 3:31 pm
I love your response.
August 25, 2018 at 2:03 pm
I love this! This is exactly what it’s supposed to mean
August 25, 2018 at 2:06 pm
My comment was supposed to be in reply to someone else. It’s supposed to mean that everyone fits together uniquely and as a whole creates this beautiful human race we are all apart of. Don’t look at he negatives behind a puzzle piece that is supposed to stand for something so beautiful. And ABA isn’t harmful unless someone practices outside of competence. ABA has helped hundreds of thousands of children function and mainstream into classrooms and remove injurious behaviors that were impeding learning. I think you should do some research on the individuals who are trying to so hard to find the best ways to help those with autism.
November 22, 2018 at 12:03 am
I agree with you. I do not see the puzzle piece as childish… you are very welcome to interpret it any way you want. I choose to as well. I am 49 and proud of my Autism. It makes me who I am whatever the damn symbol. 😄😄
April 2, 2019 at 7:37 am
I 100% disagree with this blog …
I for one wear my jigsaw piece for the autistic persons I know and who I support who haven spoken with them and their mum’s, dad’s and carers also accept the jigsaw puzzle as a symbol of autism and we wear it with pride…I will not change my mind by what is written here
June 18, 2018 at 9:42 pm
As someone who has been diagnosed with autism myself, I decided to share my thoughts. Personally, I like the puzzle piece. It’s cute, kid friendly, etc. But I also like it because it shows that, no matter how different, we are all pieces of a puzzle, put together, we form the world. I never thought it meant a puzzling condition, and I still don’t. I can understand your reasoning, but these are my personal views on the subject.
August 22, 2018 at 9:16 pm
November 22, 2018 at 12:06 am
Telling someone they are wrong is your opinion. I disagree with you too. Opinions and comments and judgments… it’s what keeps life colorful. Let’s respect other people’s comments and input. 😄😄
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August 22, 2018 at 9:14 pm
Disagree with this article. The puzzle is a great symbol for Autism, jigsaw puzzles are definitely not just for children also.
The symbol as so much depth and connection to the community. Being able to find a place in this world, we are all pieces of the bigger picture, finding the world a puzzling place at times, structure in our lives, organisation. Social interaction and learning.
Many find it hard to see anything but their own percpective on this matter and have let it be hijacked and used against. The rainbow infinity symbol doesn’t have any significant meaning to Autism. It looks more like it is for pride.
November 22, 2018 at 12:12 am
Agreed. Getting hung up on the symbol isn’t the point. Whatever the symbol, the emphasis should be on actively researching, accepting and creating awareness of being respectful of neuro-diversity in its many forms. Each person’s perception and ownership or lack of ownership of the symbol is a personal decision. I’m proud of the puzzle piece. To me? It says… I’m different, proud of it and welcome a discourse with you about myself, my son, my teaching of students on the spectrum or any number of other related issues. I respect your right to share your feelings but now respect my right to mine. 😄
August 27, 2018 at 3:11 am
Totally how I feel! I love the line in the Evanescence song “Hello”… “Don’t try to fix me. I’m not broken.” I’m not a mystery for you to figure out. I’m just me. And that ought to be enough.
August 31, 2018 at 2:01 am
For those who say the symbol of autism is wrong. You either have nobody with autism in your life or a completely wrong about the entire meaning of the symbol. The old symbol that was originally founded because it did not match anything that was in the system at the time would be right. The symbol that represents autism now or days is it correct and perfect representation of autism as it is now. As a father of an autistic child I can say this. Someone I can say this as a father of an autistic child who happens to be. The puzzle piece represented as a border peace does not represent and answer it represent an answer. I say it because when you put together a puzzle no matter it be 50 1000 2000 3000 pieces most people start with a border. Yes I said most not everyone starts with a full box of puzzle pieces or a full deck of cards. My son was the world unfortunately he did pass away. When I introduce my son I never ever ever said this is my autistic child I always introduced him as my son. for those who say the puzzle peace represents something that needs to be solved is wrong. To me it represented something of a start point not end point. Not something that need to be fixed. Not something that need to be understood. But a starting point. Where do I find this symbol of autism to be offencive no I find it to be a true and accurate depiction of what it means to have autism. For those who say it is a spectrum disorder yes but by trying to find where they fit on a spectrum is still trying to find a place where they fit do not tell me that the puzzle piece does not accurately represent autism. The rainbow infinity symbol does not work. As a proud member of lbgt Society I find it offencive. The reason being the colors of the Gay Pride flag happened to be the colors of the rainbow Infinity meaning forever. So they are lumping the two together. For those who do not find that offencive there’s something wrong with you. The blue puzzle piece is a very appropriate symbol. For those who do not see it this way I’m sorry that you do not. But as a father of an autistic child you are all wrong. I understand that some of you will find this offencive. That’s some will agree. This is my opinion and that is all that matters. For I will speak for my son who cannot speak anymore.
September 20, 2018 at 12:25 pm
I think the opinions of Actually Autistic Individuals should outweigh Nuerotypicals. I appreciate your opinion, but I am Actually Autistic, with an Actually Autistic Teen, and we both are offended by Autism Speaks still searching to rid the world of our kind, and the puzzle piece.
The rainbow, by the way, goes back thousands of years. It does not belong to the gay community. It offends me that the symbol of love from my God is used by the LGBT community, and you don’t allow that love symbol to be all inclusive, ie Nuerodiverse.
February 17, 2020 at 12:35 am
Let’s respect every community’s use of rainbows. There’s no need for it to be allowed for only one group. There’s nothing wrong with us using the rainbow infinity sign and there’s nothing wrong with the LGBT community having it. Please be open minded and respectful. It offends me that you are so bothered by the LGBT community using it, how could someone in the autistic community be so ignorant is beyond me.
November 22, 2018 at 12:16 am
I am glad you wrote what you did. I find strength in it. Thank you.
June 8, 2019 at 4:46 am
But you cannot speak for autistic people that are offended by the puzzle and can speak. Your son being autistic doesn’t give you the rights to squash the rest of us and speak over us. Unless you’re autistic yourself, you have no say. You also have no right to tell us what should and shouldn’t offend us. Shame on you.
September 2, 2018 at 6:17 pm
as i see it,you buy a puzzle in a shop,it is in a box,,it may have 1000s of pieces. those pieces are shattered.and you must fit all those little pieces together,,,i have ADHD/HFA.
I Hate it,,,,
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September 24, 2018 at 7:02 pm
My daughter has autism and she is 6 years old. It took me to convince her pediatrician at the age of 2 that she either needed a hearing test, vision test, or that she is autistic based on my own research. Now, that’s where that “A” word stands out to me (Awareness). I like the puzzle piece and I feel it’s being looked at wrong. The piece is not signifying that children/adults on the spectrum are puzzles. Their condition is puzzling because no one symptom/condition fits all. There is no “cure,” there is no meaningful genetics testing for girls, on top of that it is suspected that a majority of boys are diagnosed with autism, but still no meaningful testing. Here I am with a beautiful, bright, and funny little girl who just happens to have autism. She doesn’t have a the vocab that a 6 year old is expected to have, it takes her a while to understand certain things, she does a lot of self talk, and echolalia, and she is very particular, and routine, but oh so unique with a lovely presence. I love my child to pieces and I am not here to figure her out, nor am I here to change her. I am here to understand her, respect who she is, value who she is, and to support her on her journey because let’s face it, the world is obviously cruel and we frequently misunderstand one another the way of the world is based on differences. Autism is diverse; there can be behavioral issues, non-behavioral, speech problems, social oddities, developmental delays, and also a real unique way of solving problems and catching details that those without autism may never figure out. The puzzle piece is the “condition” not the individuals with the “condition.”
December 20, 2021 at 6:54 am
I agree. I worked with autistic children for many many years before we were blessed with our gd. A lot of society can be cruel by not understanding meltdowns, her communication or her spinning by saying nasty comments or trying to educate me on how she wouldn’t behave that way if I spanked or diciplined her etc. I’m so grateful to the autistic adults who help with advice and other perception so I can help her. I don’t know what it’s like to have sensory issues or not b able to communicate etc so hearing from people who actually can educate me on this is incredibly helpful. Thank you
October 17, 2018 at 7:00 pm
The puzzle piece. Having a teenager now with Autism I can disagree with this blog in so many ways. First, my son totally agrees on the puzzle. He does NOT like to do jigsaw puzzles, but the puzzle symbol of Autism is great. My wife has a degree in teaching and special education and also agrees on the puzzle piece. Our son was a mystery for a long time, like a puzzle with a missing piece and once we found the missing piece it completed us as a family and him. What was the missing piece for us? It was NOT that he had autism it was finding what clicked or resonated with him. His is robotics, tinkering, building. Once we found that he has now blossomed and can build a robot from scratch at the age of 13. I’m sorry you DON’T like puzzles (obvious from above). You probably don’t like watching Peter Pan either (a lot about what happens when we become an adult and lose the whole childhood fantasy/imagination thing). As for you comment above stating, ” mystery and complexity of autism”. Yes absolutely true, but it being like anything is NOT true. I work for a non-profit and volunteer and work with different kids/teens/adults with needs and the spectrum of Autism is one thing that makes it QUITE different. So, maybe you should take a step back …watch a few kids movies…even a show like “The Good Doctor” which totally resonates with my son and he can explain reasons why and maybe even sit down and do a fun
January 18, 2019 at 10:55 pm
I don’t like that you say a$ is focused on children and forgets adults, but i agree. It does look childish.
March 1, 2019 at 5:14 am
Love this post, and totally agree about puzzles being an inadequate (if not downright offensive) representation – in this case. Just to be clear, I don’t like the rainbow infinity either – that too looks really childish to me.
March 9, 2019 at 5:07 pm
i agree to an extent, but u call autism a disorder when it’s not, it’s neuro diversity.. and i don’t care what symbol allistics apply to our diversity.. it only cements the fact that it’s important and thought about. the puzzle piece is not childish, it’s a good representation for the fact they don’t understand us and think we need fixing, it’s kind of uplifting to me to think that we are seen as a problem to be fixed, is it nature’s way of defending itself against evolution?.. look, i get ur scepticism but i have to say, why are u letting it bother u? does it affect u directly?.. why don’t u design a logo for allistic people, u will find it will be just as harmless. concentrate on what really matters other than the shape and colours of a logo designed to represent our difference.. the fact we have a logo makes us special and different.. doesn’t that inspire u??
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May 3, 2019 at 4:58 pm
It’s sickening how many relatives of autistic people are in the comments going on about how thier opinion is so much more important than those of actual autistic people. Kinda proves a point about how ableist it really is.
Also I hate every single supporter of ABA therapy and hope they one day understand the abuse they are letting their so called loved ones suffer. You people sicken me. None of you want to hear our voices. Only your opinion matters and I feel so bad for the autistic person you are using as a shield
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May 26, 2019 at 3:23 pm
I’ve read this entire thing and I am APPALLED. I have Aspergers which is a form of autism, and I actually like it. My mom got me an autism bracelet with a puzzle piece on it, and now you’re saying it’s negative and I have to throw it away?! My mom is gonna be so pissed if I show her this!
March 24, 2022 at 5:31 pm
Daiki… If you like the puzzle piece and it is meaningful to you, then it is not negative… for you. Wear it. And be thankful for the mother who loves you exactly as you are! We are each unique and it’s ok to be who you are.
For me… It has a negative connotation. Because of things I have been told, ways I have been treated. So, my feelings reflect that. I’m ok if you don’t feel the same way.
The most important thing… Be proud of who you are. Celebrate the ways you are unique. Those things that only you do… They’re the reason the world needs you.
July 1, 2019 at 12:51 am
The infinity symbol is already used by the Métis people of Canada. If a logo should “not look like any other commercial or charitable one” then this symbol shouldn’t be used to represent neurodiversity, as it already has a deep and important meaning to Métis peoples
March 26, 2020 at 8:24 pm
If autism research and awareness are bad, then petition for funds that go into them to be suspended.
November 13, 2020 at 5:44 pm
I absolutely love the neurodiversity piece over the puzzle piece!
I am a behaviorist and gestalt counselor, working with diverse clients, and I myself have my personal battle with brain surgery and pituitary tumor-I personally find the puzzle piece bothersome. People are perfect as they are, our personal battles and diagnoses shape who we are, no two humans are exactly the same. We all can learn new skills to help us through out our life, achieve any goal, (focus of my therapy) although we learn differently and have our personal diagnoses/experiences there is absolutely no puzzle missing from our personal value. Individuals with ASD /Aspergers -many whom experience this are the brilliant inventors, musicians, doctors… it is not to be cured and find the missing puzzle, but like anyone else- to make sure they have a happy and healthy successful life.
December 16, 2020 at 7:27 am
Personally i like the puzzle symbol more.. rainbow infinity symbol is more for gays -_- and i don’t understand the connection with it. Puzzles are more relatable to thinking & research.. but infinity symbols just making repeatable rounds for ever.
January 24, 2021 at 5:10 am
Reblogged this on Autism Candles.
September 13, 2021 at 7:44 am
I personally have Autism/ADHD. Just because I can write well, does not mean I don’t struggle every single day. Mainly because of the standards the neurotypical society burned into my brain and still expects of me. I remember being left to feel inadequate and critisised as a child. You may think you can hardly reach your child, but it knows. It knows you think it is faulty. You can say you don’t, but then why you would try to change it so much to your neurotypical standard? That is a horrible knowledge for a child to have. It is a horrible feeling. “Mummy and daddy only love me if I act a certain way, otherwise I hurt them. Otherwise I am not good enough and not worthy of theirs or anybody’s love.” Yes, they carry it into adulthood. I did. And I am stìll in therapy for it.
I encourage you to google and watch “Carly’s Cafe”. Just because it seems like something on the outside, does not mean it is the same on the inside. A mute child can still be very communicative if you just know how to listen. Just like I who appear to have nothing wrong with me to most, suffer every day. I could thrive much more, had I (had) better chances. Hadn’t I been so beat up by society and its expectations that I ended up in a massive burnout.
Of course Autism is a spectrum, a round one, which means ‘traits’ and ‘issues’ can manifest in certain ways and gradations. We don’t all have it the same way, so we probably shouldn’t be comparing. Remember, we are actually autistic adults. We have had a lifetime of society trying to hammer us into a box that does not fit. We may séém to have the right shape just because we learned to appéar to be that shape. Does not mean we àre. Also we grew up and learned things, just like neurotypicals do.
I personally also think though after years of therapy and observance, that the people who are considered to be ‘severely Autistic’, may often have a or several comorbid conditions as well. (Does not mean they can not grow and thrive as well).
Meaning what you see and think to be júst Autism, is not júst Autism, but a mix of it with something else. So naturally those who ónly have Autism or have less apparent (comorbid) issues seem different to you.
Many people on the spectrum have a comorbid condition or get one due to masking and trying too hard to fit in: burnout, high IQ, anxiety, borderline, low IQ, brain damage by birth, mutism, depression, etc. Also they are more likely to be part of the LGBTQ community.
As to the puzzle piece. It feels exclusive. We are being singled out and left out of the puzzle of life, we are the faulty piece that they don’t know where to place, so they keep it to the side. Only to be worthy if we fit. Even if that means cutting us to size or glueing bits on that are not a part of us and never truly will be. I don’t see myself as a puzzle or a puzzle piece, more as a journey of discovery. Just like every other human being has their own journey.
March 24, 2022 at 1:09 pm
Is there a national petition for this? If not, let’s start one!
March 24, 2022 at 4:45 pm
I responded to this a long time ago, and I honestly don’t remember what I said. If you come across it in comments, I hope this is perhaps more measured.
My immediate, emotional reaction to the puzzle piece is this… I’m not a puzzle for you to figure out and piece together. I’m not a mystery for you to solve. I don’t want to be “figured out”. Does anyone want others… people they struggle to relate to… to think of them as something so outside the norm, to think of them as an unfathomable mystery that must be pieced together until it makes sense to someone else? It’s… demeaning.
But let’s walk away from the emotional response… because we’re Spectrum people and we’re more comfortable with facts anyway. As a symbol, in my opinion, the puzzle piece represents an “outside” view of who I am. It is about others see me and their inability (or difficulty) in understanding me. It is not representative of how I see myself.
How do I see myself? Facts first… I am a daughter, a sister, a wife, a mother, a friend. I have people in my life that I love. Deeply. And in good black and white fashion, once I love, I love forever. It’s not love if it stops.
I am a “Creative Life Force”. That’s what my counselor tells me. My friends say it’s more than thinking outside the box. “I don’t think you came with a box.” “Yes, I did. I handed it to my husband, told him to get in it, and kept going.” I see the world in different ways than others do, and sometimes, because of the Spectrum in me, I see things others can’t.
I see the world in patterns. I tune in to them and find them naturally. And when I’m struggling, I look deep to find the pattern. Because once I see the pattern, I know what to do. If you want a symbol to represent Autism from a Spectrum perspective, find something with a repeating pattern! And then give it some pizzazz. Because I am proud to be atypical. I don’t want to be like everyone else.
I have a world in my head. I used to be scared of saying that out loud, because I knew it was different and I was afraid it meant I was actually crazy. But I’ve learned it’s not uncommon on the Spectrum. And I’ve learned that world has a purpose. It is a retreat when I am overwhelmed and need a place to get lost, a place where I am in control of what is happening. And I need that. And it is a place where I work out the things that I am struggling with in a safe way. I repeat scenarios and make up different solutions until I feel comfortable with how I feel.
So what do I want? I want to be treated with respect. I have a strong mind and I have a lot of gifts that people need. And that’s not a puzzle. It’s just me being me. I just want people to look at me… and my son… and love me for who I am, as I am.
For those of you that read this board who are not on the Spectrum… Please remember that, although Spectrum people may seem “detached” to you… We feel things very deeply. And the strong responses you see here are just that. It’s us feeling like we have to fight against this idea that we are “too different”. Quirky… Eccentric… Weird… Freaks… We’ve heard these words. A lot. And we feel very strongly that we are not these things. We feel the same things you do. We just express it differently. So, if you want to understand us, just think about how you would feel. Better yet… Ask. “How do you feel about that?” But be patient if we don’t know how to answer that question! Sometimes we don’t.
There are certain drivers… The world feels like chaos, a place where the boundaries move and don’t make sense. We like reason and logic and facts. These are things that are tangible and we can process them more easily. We crave Order. Repetition. Patterns. Things that help us know appropriate ways to respond. Remember, our “disability” (though we probably don’t like that word) is in processing social dynamics and relating to others. And that’s a very lonely place to live. We have hyper sensitivity… to sights, to sounds, to smells… And sometimes this sensitivity is actually physically painful. So we will look for ways to ease that pain. It may be by carrying noise cancelling headphones with us for emergencies when we are feeling overwhelmed or overstimulated. (We get overstimulated easily!) Or… in a matter of fact Spectrum way, we may just tell you to shut up. And we probably won’t think to tell you that we are feeling overwhelmed. We just need the “input” of information to stop. It doesn’t necessarily mean that we don’t care about what you’re saying. We’ve just hit our limit. If that’s not it, we’ll likely tell you. We tend to be pretty blunt. Generally, we don’t mean to be rude. We are just trying to be straight forward with you.
And remember… You are just as big a mystery to us as we are to you! This social thing… It’s a beautiful dance, and we are not good at dancing!
Oh! And one more thing… Everything I just said is my own perspective, from being on the Spectrum and being the mother of a Spectrum Kid. Like you… We are individuals, with our own experiences and feelings and opinions. So, my words represent me and should not be read as blanket statements about ALL people on the Spectrum. That’s important. Because each of us is unique.
So… That’s my perspective. I really hate the puzzle piece. Emotionally… It makes me feel like I am “too different”… An alien in a strange land. Marginalized into something that doesn’t fit with the”real world “. And I don’t need that. And it’s not how I want to be seen or portrayed. Unique? Yes. A puzzle to be solved? Absolutely not.
A true story… When I was a teenager at camp, I walked past a group of my peers and one of them started singing, “One of these things is not like the others. One of these things is kinda strange…” It hurt. It still hurts.
Not a puzzle to be solved.
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