Autism and Me – Part 1
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I don’t often write about Autism Spectrum Disorder, I actually try not to. Every time I write about Autism Spectrum Disorder I always seem to start some debate or get people mad at me. I hate people being mad at me… so I don’t often write about it.
Lately though, as some of you know. I have been working on a secret project, my secret project its a collection of memories about me growing up. I don’t think I will put these on my site or share them with many people… but its important I do them. As many of you know my life has not been that happy and its only the last few years that I have felt safe.
But! While I was writing them I realized… I have never really written about Autism and Me, so … here it is… a piece of writing about Autism and Me. It might be written a bit funny, but I hope no one minds.
– Autism and Me part 1 –
When I imagine my Autism, I imagine a kind of round fuzzy creature with some scary sharp teeth and a really big nose. Probably with googly looking eyes and definitely a pair of antennas … not to mention two arms with three sharp claws on the end… who lives inside my head.
Yup that’s how I see my Autism Spectrum Disorder. A stand alone creature… something that can be very scary… but something that sometimes makes you go wow that’s cool.. but all the time something that makes you stop and think a bit more about things. It can sometimes be friendly too. I mean… all creatures can be friendly sometimes, but it can be mean also.
But as I said my Autism is a Stand Alone creature, its not me… but it lives in me … yep… I am still my own person even if I didn’t have Autism, but I have Autism so it is part of me… but just because its apart of me doesn’t mean its all that I am.
I have said before that I wish I could cure some of the things about me that Autism has probably created. Things like my anxiety and strange sensory issues… not to mention banging my head when I feel my brain is being squeezed… and I wish I could care for myself more… I am still hoping that one can happen even just a little and I am still working towards that. But the fact remains if I could, I would… and I think that’s why I make people mad and upset… which confuses me because they are not me and don’t understand my feelings.
You know what hurts my feelings most though .. its those people that say “If you didn’t have Autism you wouldn’t be who you are now” As if they are trying to talk you out of something that hasn’t happened yet. I think those people are really mean for saying that. If I didn’t have Autism I sometimes wonder if I could be doing more… or what life would be like… and although I wouldn’t fully be the same person I am now because I wouldn’t be living a life centred around care and support, I do believe I would still like many of the same things… I still think I would be writing and I do believe that I would be able to focus better and finish bigger art projects.
So I guess I should tell you how Autism Spectrum Disorder affects me now… but get comfortable this will be long!
For many people reading this you would be going, “Wow you are so high functioning Matty” … but the truth is… I’m not. Nope. That’s because High and Low functioning does’t really exist. Autism is a spectrum. That means that everyone with Autism is affected differently and everyone with Autism is an individual. That means if you put two Autistic people in a room together, although they may have things in common… such as maybe not making eye contact or stimulating their senses. They will be different, their needs will be different and their abilities will be different. So before I go into how Autism affects me I just want to make it clear. High functioning doesn’t really exist. Right!
So How does Autism affect me? Well in many ways. For me Autism brings along OCD like behaviour. For instance I can’t go past my mailbox without checking it. I tend to go through phases of obsessions too. Sometimes I am obsessed with the wild west, sci-fi movies, space or history… You should have seen me when I was going through my 1592 to 1598 Japanese invasion of Korea phase… I drove people crazy… Especially when got even more obsessed with one particular battle, the siege of Jinju Fort. Actually sometimes my obsessions can be rather incredible. Like at one point I was so obsessed with marketing and in particular viral marketing and on-line community development and management that I was being invited to guest lecture at universities. I probably could have turned that into something really good for myself if I could have kept it going, but… my obsessions burn out and then its on to another.
Then there’s the anxiety and sensory issues… which generally end up with me having anxiety attacks, this is probably the second biggest thing that autism impacts my life negatively. Everything can set me off… from a balloon being blown up and popped unexpectedly to a construction drill noise. If its unexpected, you can expect an anxiety attack and hyperventilation. Sometimes this can make me seem like a control freak too. You know, that we should only do what I want to do and go where I want to go… but really its not me controlling anything but rather something that I have coined called predictability Comfort… being able to predict what will happen and being comfortable to do things due to that predictable environment.
So you maybe wondering what happens when I do have an anxiety attack… other than the mentioned hyperventilation. Well when I have extreme anxiety levels, I can’t think… and when I can’t think I can’t process anything going on and when I can’t process what’s going on I begin to do strange things. Like wander off somewhere without thinking, or bang my head with my hands and cry… that one usually happens if its a noise… I have very sensitive hearing and I always hear very loud noises as coming from within my head rather than around me. Then there’s the freezing up… yup… freezing. When I am overwhelmed and my anxiety is on the rise I sometimes freeze up, just stand there like a lost statue. If friends weren’t with me I would surely be in trouble, but since I don’t go out on my own I know there will always be someone to grab my hand and guide me along. I am very lucky to have people around.
Which leads me to the next topic.. the sensory system. Now before you get super confused I should tell you what that is. The sensory system is part of the nervous system that is responsible for processing our senses. Autism affects my sensory system, and everyone who has sensory issues because of Autism… is affected differently.
Probably the most important in terms of the sensory system for me, is working out when I am sick, hurt or uncomfortable. I seem to not feel pain and other things like temperature the same way as everyone else. Like this one time… and this is a bit funny, I was really cold. Only I couldn’t work out that I was really cold. So I sat there in the cold for about an hour… getting colder… trying to work out why I felt uncomfortable! It should have been obvious the signs were there, rain… wind… cloudy skies. But nope! I just didn’t click. I also sometimes even shiver and get goosebumps when its hot! I always think that’s weird.
Then there is my hearing… which I mentioned before when speaking about my anxiety… so I won’t go into that much more, but one thing that many people don’t know is that although I have very sensitive hearing and hear loud noises even louder than most people! I also hear voices strangely. There are some people that everyone can hear perfectly… and I can’t hear at all! Then there are others whose voices I can’t recognize every time I meet or talk with them because the pitch seems to be changing so often that I can’t pin the voice down specifically as belonging to one person.
Oh! And lets not forget my touch. I don’t just mean touch as in me touching things and not being able to handle it… but also what touches me… and even touching some things and having it feel incredible and calming! For instance… the receipt at New World where I get my groceries feels so horrible that it hurts, I mean… holding it makes me feel so uncomfortable that I have to put it down within a few minutes or my eyes begin to water. Egg shells do the same thing! And gooey/soapy liquid on my hands makes me feel cold and shiver and get distressed.
So what about things touching me? Well if anything unexpectedly touches me I panic, I guess maybe its some of that predictability comfort coming into play. But when something does touch me, its not just anxiety attacks and hyperventilating I have to worry about. But also inside feelings. I can feel so uncomfortable and so distressed that I cry, feel pain despite nothing hurting me… and even so overwhelmed that I hit my head. Its kind of like an anxiety attack mixed with something distressing and uncomfortable that makes it even worse. Always ask to hug me please!
And then there’s the other end. The touch I love! Like weight, I love to have something weighted over me… which for me is my fluffy blankie. When I am inside I have my fluffy blankie on me and it makes me feel so calm and happy! It also makes me feel brave and stronger, that I am not alone… I guess its like a hug. Its a bit heavier than a normal blankie but it is so wonderifically amazing! There are other things too… I love to touch flower petals! They are so incredible and calming and fascinating too! In fact I love it so much you may remember I painted about it for the Autism New Zealand 2012 conference! Oh and trees, I like to touch trees and… well I guess I could go on a while!
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WOW! I have written so many words, I think I will stop for now… but there is so much more I want to explain and tell you.
Please let me know if you want me to keep going about how Autism affects me, about what my life is like and I will keep going π If you have any questions also feel free to ask. I really hope this will help those that care for me to better understand me… my friends to support me better and of course anyone who is just curious for how one persons life with Autism is affected π
A little nervous posting this… so I really hope its okay and reads fine… You all have no idea how many hours has gone into this!!
~ Written with love and care
Click here to read Part 2 π
About The Author
Matty is a 37 year old girl who is an Autistic Poet, Writer and Artist and lives alone in Christchurch New Zealand with a kitty! Matty has given many talks on autism and about being unique in a world that's often not accepting, Matty has also engaged with artist and worked on Art projects Matty usually works on an Art project at the same time as a writing one! This means posts can be a bit delayed!
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37 Responses and Counting...
Matty thank you for opening up and giving us a window into your world.
I am so proud of you for writing your personal story as am sure it will inspire people to just stop and think about how it is to walk in your shoes.
I like your fuzzy creature Raaaaarrrrrr hehe π π π
I love this post Matty, and I very much want to hear more about how autism affects you and how you experience the world. I found this very enlightening. I think it’s wonderful that you shared this, and I’m going to share it with others too because there’s a lot of valuable information here about the difference between what we see from the outside looking in, and what can be going on inside, and how that differs from many other people’s daily experiences. Thank you for writing this xxx
Thank you so much for sharing your perspective.
Thank you so much for sharing these insights! I’m trying so hard to understand what my son needs so I can help him find his own way in the world, and hearing from adults who are also on the spectrum is truly a gift.
I really really want you to keep writing about your autism and I will devour every word. thank you so much for being so brave and telling your story.
Incredible… just incredible.
Please keep sharing how Autism affects you Matty. As a parent of a little boy with ASD it can be really hard sometimes to understand my boy and posts like this one help me (and in turn him) a lot. This was a great post.
I’m so proud of you, Matty. This is a beautiful post, and looking at the other posts, you are helping so many people by writing this! Good for you! I look forward to seeing what else you write about your autism. You are a treasure, Matty. <3
very good Maddy enjoyed this part 1,,look forward to reading the nx one …I understand how hard this problem is have a few friends who little ones have it ,,and see what they go through..stay stronge Maddy and know there are people out there who care …
Well done, Matty. You write so well and relay your information in clear and honest terms. You share your experience beautifully! Sharing is caring. Thank you for caring! Keep up the good (and hard) work of explaining difficult things to the rest of the world….xoxo
This is wonderful. Looking forward to part 2!
Thank you so much for sharing Matty! Those of us that work with people who are on the autism spectrum really benefit from know how it feels from the inside out. You are helping many others with your insight.
This blog was very informative and interesting. I think you could eventually publish a book if you wrote enough on this subject and about yourself. Good job!
I think you should keep writing about Autism. Many people with Autism don’t have the words to describe it and even more people don’t understand it at all. This really helps.
Dear Matty, Thank you so much for writing this. I’ve only ever experienced Autism through the words of my dear friend overseas who is a mother of a child with autism, through your words when talking with me, or at a distance when out shopping etc. Your writing from your heart like this helps me and others to understand that what we see is nothing like what is really going on. Thank you Matty and I look forward to the next part.
I also think it is a wonderful idea that you re writing your life story. Love and hugs Vanessa
Matty, this is wonderful, please do keep writing, this does not only give your perspective on autism, but also helps so many other people :). I am so proud of being your friend, can’t wait to see you and give you a big hug! Lucia the crazy scientist-pirate-doctor-midwife.
Hi Matty,
Yes, please write more. My son cannot speak much (and is still young and can’t read or write), and while I know how different autistic people are from one another (just like every other person on the planet), about the only thing I can do right now is read the words of people like you to try and get just the tiniest sense of how my son feels/thinks/experiences the world. Thank-you so much for opening the door a little into your mind and body. I look forward to reading more in the near future.
Sincerely,
Maya
For somoene who does not know much about Autism, this is amazing. It has opened my eyes to see what it is like in your world. Thanks for sharing. Please write more!
Matty, I’d like to read more of your insights. I especially liked the way you described not recognising that it was the cold making you feel uncomfortable – sounds just like my son! Thanks for writing this and for sharing it on ASDFriendly.
Hi Matty,
I am a primary school teacher and in my class this year I have a little 6 year old boy with autism. A lot of what you so clearly described fits him. I know that no two people with autism are the same but I just wanted to thank you for writing so eloquently about autism. It really helped me to understand why for example my little boy enjoys rubbing his face along my leg or likes to hide under the cushions in the library corner when the classroom gets too noisy for him.
Sophie
Thankyou Matty for this brilliant piece of writing.
You are truly gifted and write so well.
Thankyou for your courage
Matty! This is so great and giving of you to allow us all to know you a bit better. I don’t know you well, but I’ve watched you play with the beach balls in a virtual world and have always left our accidental meetings feeling lighter and happier, your spirit is so pure and sweet. Please continue sharing your world with us.
Hi Matty,
Thank you for writing so eloquently about how Autism affects you. You have taught me many things today.
Regards
Lola
Thank you Matty for sharing, I have a teenager with Autism who is non-verbal and I often wish I could get inside her head to know how she feels about everything. You write extremely well and I look forward to part 2.
Keep well…xxxx
Hi Matty:
That is a very nice piece. You make it so that others can understand. Perhaps they will even find some similarities in themselves (without presuming that they are on the autism spectrum). I too am sensitive to noise and leaf blowers make me antsy/uncomfortable.
Renate
Hi Matty, thank you so much for sharing your feelings and sensations in such an eloquent way. I am a teacher and next September I will have a class of children with autism. It really really helps to be able to hear from writers like you what it’s like to be a person with autism and how it impinges on your day to day living. Keep on writing if you can – you have no idea how many people will be helped because of your words!
WOW Matty
It was so good for me to read this, it is fascinating how you explain it. And obviously you have touched many peoples hearts by writing this piece………..keep writing!
Thank you Matty! This is really encouraging. I am a teacher and often wonder about my autistic student’s future. Please continue writing. You are amazing!
HUGE HUGSSSSSSSSSSSSS Matty very well said Jules π
Dear Matty,
I have a son with autism and your wonderfully written piece has opened my thinking and will help me to understand him better. While no two people are alike, I am pretty sure that he shares commonalities with you as well. Thank you for taking the time to share what you are feeling. The story you tell will help people and is appreciated.
I think sometimes people get mad because they want everything to be alright and it distresses them to hear that you are suffering. I believe, however, that we will never be able to help anyone, whether on the spectrum or not, cope unless we know exactly how they are feeling.
Wonderful work, Matty! Please don’t stop writing or worry if people seem mad- they need to hear what you have to say. My kindest regards, Claudia Brown
Oh Matty
I am in tears
How are you so eloquent on describing what occurs
It has been 9 months since my confirmative diagnosis that I have autism. I didnt want to face the reality
Reading this allows me to acknowledge my autism, put the symptoms in words, and find “scripts” on what to do on certain occasions
Please don’t be scared on sharing. Others need it, I need it
I am fascinated by the imagery description of your autism. This gives me insight on how I picture or describe my “creature”. As each to their accord, I think my image is merely a down this: If you watch the movie Split, James McAvoy plays Hedwig to the tee on the imagery of my autism.
I too have always thought what would my life be without my autism. But then again, I wouldnt want it any other way. Due to it, I am the smartest person in the room yet my self doubt has me thinking I am the dumbest person in the room. This gives me incentive to meet the other smartest persons in the room. Now we know that spectrum does not have a clear definition so I just find the most interesting people to my liking. Works out fantastically
I love the freezing paragraph. ANother reason why I freeze up is because I dont know how to react because I dont know how i feel about it. Its worse when its a heightened tense situation. Thought process goes: “oh god whats going on, how did it get here, what is the best option to do next(10x)? Is that what i want? oh god, ive been unreactive fro 10 seconds, theyre giving me weird looks.”
I dont immediately react. Its a good thing because impulsive people and instinctive reactions usually get people in trouble.
I like to compare that to the story of the wren. I recommend looking into it
When I first started hyperventilating, I didnt know what it was. My heart would pound too. I would go for a minute run! It would make my heart get back to normal bpm.
I never know when Im cold. I have allergies problems and i never bother to fix or adjust myself to stay away form the culprit. I just know it will eventually happen
I love my obsessive periods! I feel so alive! I thought i was addicted to Pokemon and League of Legends but i absolutely love those games! And I dont mean just playing. I watch videos of pro’s, look into regional tournaments, egg hatching (oh so many!), stat knowing, and comparing it to other games. For example, League is alot like chess just more action haha
Other obsessive or peak interests: movies (films), writing, reading, socks, MUSIC. Music, from playing multiple instruments to knowing lots of other genres with in depth knowledge of the history, music theory, and artists
But it also has this unique observation I have.
I sing the lyrics to know what to say and react to situations.
Examples:
-When unclear of my thoughts and decisions, Stairway to Heaven comes to mind. “Theres always time to change the road youre on”
-When with a bad relationship. Danger by the Flirts. “Danger, shes dangerous just like TNT”
-When in discussions, I pull up quotes like “We’re just two lost souls swimming in a fish bowl” (Pink Floyd. Wish you were here)
My professor told me Im high functioning. But I will explore more on your statement of that spectrum not existing. I will challenge it and research it. Thank you for this thought
Oh lord. The touching. Im clumsy and bump into tables and spill alot but it doesnt make me so in “caution mode” or peak anxiety as someone brushing me with their elbow or shoulders. I use to think it was intimacy but nah. My nervous system just says “woah, youre sin in your temple, something is touching it.
i cant elaborate more than this: I am very ticklish. With a small impulse to punch the culprit so they can stop and get away.
Despite the wondrous travels through wanderlust, the amazing trips of knowledge, the guilt by others but immersive world of entertainments… I find autism allows you to experience things much better and in a unique perspective. Something so many children lose between the ages of 16-22.
Thank you Matty. Please bear this long letter. May your future be bright, filled with many experiences, and always cast out the negative
I have found Tim Ferriss. I recommend that so highly to look into
[…] suggest reading this. http://www.mattyangel.com/2013/04/13/autism-and-me-part-1/ though only 5 […]
Thank you so much for posting this! I work with kids with autism and I always wonder how they are feeling. I know everyone on the spectrum processes things differently, but I feel like I’ve learned a lot from this post.
Hi Matty,
I found this really informative and useful, thank you. I have several relatives with autism and this has really helped me understand how they might be feeling, and some ways I might be able to change my behaviour to help them. Best wishes from Liverpool, UK!
I don’t really know anyone with Autism, I have a very basic understanding of it so reading this was really helpful, I want to be as informed as possible and not hurt the people around me, we’re just humans, right? Thank you, I’ll have to read more of your work. Γ°ΕΈβ’β
I don’t really know anyone with Autism, I know the basics but not nearly enough about it. This really helped, I want to be educated and treat everyone well, we’re all just humans, right? You’re a very admirable person and your writing is so professional!~ In a cool way!
Thanks.
Ah! I had to rewrite the message cause I thought it didn’t send, sorry. :p