Autism and Me – Part 5
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So… finally Part 5! This has taken a long time to write and has been a long process, but this year has been a rough feeling year and so I hope you do not mind how slow I have been.
First Before we start Part 5 I would just like to remind everyone once again that I am no Doctor… that the only knowledge and experience I have is personal, from being an Autistic Adult. Most of what I have learned has been with help from others who have helped me to work myself out… and who have put up with me over the years. I am not saying this is how it is for all Autistic people, only how it is for me.
And for those just finding part 5, this is part 5 in a series about Autism Spectrum Disorder (ASD) and Me, well more specifically how it affects me. However please remember that everyone with ASD is different.
If you missed any of the previous parts, you can catch up by clicking on my Autism and Me =) Category –
– Autism and Me Part 5 –
In Autism and Me Part 4 we looked at Overloads… and in Part 1 we looked at Anxiety, In part 5 I am going to delve into what they feel like or what seems to help me through them. I first want to apologize though to anyone else who experiences these different to how I do, as I can only write about my own experiences. I think its very important to keep that in mind.To explain what an overload feels like, I would like you to try and visualize a stress ball. Now visualize a hand squeezing it, very fast, sudden and very tight. That is what an overload feels like… its a bit like an anxiety attack but instead of fear driving it, its the lack of ability to process… The hand squeezing it representing various types of different information being processed and instead of a stress-ball… well, its my brain. That information is shown in the three forms that I mentioned earlier. Sensory, Information and Predictability Comfort.
I can’t overstate how terrifying an overload is, Its like someone just flicks a switch. There is no warning and no real feeling that its coming… sometimes when that switch flicks a fuse blows and you end up trapped in the dark… alone… and the world you knew is just all twisted and confusing, it creates sadness and isolation. One minute you can be calm and the next something can just be to much to process, that you kind of feel detached. I think its that loss of connection with myself that takes away my ability to be verbal at times.
Overloads lead to self calming stimulation, much like what can happen during an anxiety attack. The big difference between the two, from my experience. Is during an anxiety attack it is fear driven and you are still there. During an overload you can no longer process anything and its not fear that’s driving it, but more the load of information being processed.Self Calming Stimulation that I use to do when younger included violence, I bet that shocks a lot of my friends now! I use to cream, cry, kick and hit the walls, doors and even people.I believe this was caused mostly due frustration. The frustration being caused by the lack of intervention, knowledge and understanding about what Autism was… by both myself and those around me, Sadly I had no provisions put in place to create a more calming, relaxed and safe environment. I sometimes wonder if such this were in place if things would have been different? But its a bit to late to focus on that now.
Sadly despite becoming older not all the violence that I took part in has stopped, as mentioned for my anxiety attacks in part 1, I still bang my head and have self directed harm. Although as I got older all harm to others and the environment around me ceased entirely. I can’t hurt anything! And I haven’t since I was very young. I think that the steps I took to make a calming environment for myself as I got ollder have been the main contributions to this radical change.
Other self calming stimulation includes humming, rocking, covering my ears and/or eyes and biting things (Safely designated things for this person) and deep slow breathing… for some reason I really like the sound of it, that must be weird to understand… and even standing on my toes…
Since becoming an adult I have also come up with, with support. Some other techniques to calm myself.
The main one I want to share with you is weight. I find the feeling of weight very soothing. I believe this has to do with feeling grounded. For instance… if an adult with no disabilities or developmental delays shut their eyes. They usually can feel where their hands are in space, they may not be able to guide them… but they are aware. If I shut my eyes, I can’t tell where my limbs are. This is what I mean when I say grounded. Weight seems to give me better coordination and better control of my body, I think this some how protects against overloads (and anxiety attacks) although I can’t explain how or why.
Two of the weights I carry with me often are my very large and very popular and happy pink dog! And something called a sensory turtle. This is a small hand sized, hand sewn turtle filled with sand, giving it enough weight to constantly feel while in a pocket of mine. These also have other properties that make them comforting.
My pink Dog, is much heavier and also very soft, she is better for more serious appointments where I am expected to sit still or have people touch me. Such as the dentist, doctors, Occupational Therapist meetings. The turtle is much smaller and can fit in a pocket, meaning she can go with me on the usual errands I have to do such as grocery shopping. My turtle is very bright coloured and instead of being fluffy like the Dog, is very smooth. Both have calming tactile but are very different.
Another weight I use, but only while at home or a place of residence. Is my blanket. Its a blanket thats a bit heavier than a normal one due to it being completely fluffy, it has the same tactile calm feeling my dog provides, and it really helps with sitting still to write things like this!
The next technique I want to share with you is to do with the environment around me
I am not sure when exactly I realized, but it has probably been one of the biggest realizations that I have ever had. If you have ever walked into my house I am sure you know what I mean! Basically a self discovery that occurred was that surrounding myself with certain colours, textiles and shapes has created a calm and what I would call friendly space. I talked about colour in part 2 when covering the sensory system, and it may seem obvious that more sensory pleasing objects would create a more calming environment and less overloads… but it honestly took me a long time to work that out. It also helped me understand why certain rooms make me feel the way they do.
To anyone who walks into my home, I hope that explains all the, colours, art, various toys and strange objects around me!
The third technique I will share with you is partly to do with the above mentioned environment and self stimulation, but is again in a way its own category. That is sound. When I say sound I don’t just mean what is in the environment however, such as avoidance of things like loud noises, but sounds that keep me in a pattern, for instance if I am in an overload, someone with me can often recite to me a song and get me in a pattern, such as a children’s song. Then that pattern can keep me from taking the overload to things such as head banging. I often do the same thing for anxiety when I start to feel anxious, by repeating the order of the computer keyboard much like the alphabet. Something about patterns helps.
I wonder if that makes sense? I think the only other way I can describe it is by saying… the pattern helps my brain to put things in order. It provides a structure.
The last technique that I will share with you is one that may make no sense! But it helps, that’s drawing and writing. I think it has to do with the visual focus and fixation the action requires. If you think of the world during the overload as one very fast spinning circle, the writing and drawing would be a single dot in the circle, and I would be staring at that, ignoring the spinning going on around me. What is really interesting is that often when I draw while in an overload, I just scribble and sometimes when I write, I just push letters and make words in no particular order. But it helps… I have never fully understood why this is, but sometimes there a things you should just not question when it comes to Autism, if it helps and works… that’s what matters.
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This part of the Autism and Me series has taken me a very long time but I wanted to let you all know that I have not given up on it, just that things have been a bit overwhelming this year. I am very anxious about this… As I said in part 4, Overloads/Meltdowns are such a tough topic to write about. I was scared again that I would write something wrong… and that has put me off posting it even though its been finished for a while.
Remember to let me know if you want part 6 by commenting below. Also thank you to everyone who has commented so far. I really appreciate it. I just hope its helpful in some way as the previous parts… I am unsure what topic to write about for part 6… so if you have any ideas, please let me know. Maybe I could expand on obsessions and fixations?
~ Written with love and care
About The Author
Matty is a 36 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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16 Responses and Counting...
What a different life you live than I do. You write about your own experience so clearly that I can see so much better why you do some of the things you do, and why you need the things you need. I’m very glad that writing and drawing are part of the things that are good for your health! Hugs!
Mattyangel, I think you are one of the clearest thinkers I have read. You describe things so well. It really helps me to understand a little bit of what ASD might feel like for some people. Please keep writing! And I hope your home remains a calm place for you to feel grounded and happy.
Cheers, Erica
Hi Mattyangel,
You write beautifully and very clearly.
One thing I notice with all people, is that often inside us we can worry about what other people think of us. Often we might think that we look sad, bad, incapable, foolish, or other things. But other people most often never see that at all! To other people, we look very different than we imagine! They see all the beauty, and cleverness.
You seem to me to be very aware of yourself, and the things you need to make yourself comfortable. You know things that bother you and how to calm yourself down. A lot of people would learn a lot from you! You seem greater to us, than what you feel on the inside. I hope this makes sense.
As an adult who does not have autism, I also like musical patterns to calm myself (and my kids down). I may sing a verse of a song over and over and over, or I may play a short repeating tune on the ukulele. It is like my mind gets comfortable and can relax, and all the bad feelings go away, and I can think more calmly after doing this.
I also love the sound of the tap turned on and running water. I find I think more clearly if I have that sound in the background. When I was giving birth to 2 of my babies, I loved having the tap running for each contraction, as the sound helped take the pain away.
I do hope you write part 6, and more on fixations and obsessions would be very helpful. I also hope you would get to write a book!
Do you have any ideas on how adults can help children, to find out what bothers children, and how to help children learn what could calm them down?
Great work!
Hi Mattyangel, thanks for updating this. I can see why it took a long time to write, but it was worth the wait, because what you write helps me to understand my son a little bit more. He is verbal, but mostly echolalic, and can’t tell me much of what he is feeling or experiencing.
He loves his heavy pink blanket, and now I know more about why. Thanks. 🙂
P.S. If you do choose to write a part 6, I would most certainly love to read it.
Hi Matty,
I really enjoy your writing, it helps me to partly understand your world and the struggles you have. I think your writing is very clear, and your explanations are great. I was interested in your explanations on weight helping you.
Have you heard of Temple Grandin? She is autistic. she is a scientific doctor that advises the American government on animal welfare. I read her book a while ago and she talked about going into a cattle crush ( kind of a box that holds the cows firm in one place) when she felt stressed. The firmness surrounding her calmed her.
I am very much looking forward to reading Part 6 Matty, I think your writing is brilliant. Thank you for sharing with us.
Hi Mattyangel, you have written such a fantastic explanation and it was very helpful. I am looking forward to part 6. Take good care of yourself and I hope the overload decreases for you.
Hi Matty 🙂 Oh I wish you would write another part – it all helps people like me to understand what you and maybe some other people go through. Keep up the awesome work Matty and I am sure one day you will write a book. Thank you for sharing and thank you for putting so much thought, care and love into your writings. hugs Vanessa
Thank you Matty for yet another very informative piece about your experiences of having Autism. Particularly of interest in how the patterns of reciting are calming for you. This is something I plan to try with my students.
Hi mattyangel. Our 13yo son as Aspergers and him and I can relate to a lot of what you have written, especially in part 5. Anger & frustration were a big part of our lives when he first started at a school who said they knew all about it but didn’t. Weight is another biggie for us. I used to buy him hoodies with big pockets and sew fishing weights into the lining. Even when he was a new born baby…I found him wiggled down under the blankets..he still does this. He just loved to be wrapped up like a present! If that’s his way of coping…then so be it. I find your posts inspirational, enlightening and encouraging. I think you are so very brave for not only living on your own, with the added responsibility of an animal (cat) but also for taking life by the grace of your hands and embracing, every, single, moment. Good on YOU, you rock girl
I find these articles very insightful. Thank you for sharing it with us and helping us to better understand.
Angela
Matty, you write so clearly about your autism — you are so perceptive about yourself! Keep write! I gobble up everything you write.
Matty, it’s me, Betaburn from LBM. Thank you so much for sharing this with me. I love your writing, and I’ve learned so much about your perspective. You articulate your feelings and experiences so well, it’s truly inspiring. I hope that the series will continue when you are ready for part 6, and I’m very happy to know you better.
Hi Matty. I have just read posts 1-5. You have given me a lot to think about and I really appreciate the time you have taken to write about your experiences. I constantly strive to understand more about autism and the effect it has on people. I realise that everyone is different, but it’s good to hear people’s experiences for that reason. I remember reading once, “When you meet a child with autism, you have met ONE child with autism.” This is something I try to keep in mind all the time. Thank you for taking this time to write and share with us, Matty.
Hi Matty, I’ve just discovered your five posts ‘Autism and me.’ Thank you for sharing your perspective. You write very well. It makes me realise how different we all are. And how similar we all are – we all need to feel secure, loved and comforted. I would love to read part 6 and I hope you do write it.
Thanks,
Caroline
Hi Matty. I live with Caroline and she has sent me your posts. I read them all while I was cross about something and by the time I had finished reading I had stopped feeling cross, but rather comforted instead. I imagined what I might do to comfort you if you were anxious or having an overload. I thought I would find a piece of soft white rope and show you how to make a complicated knot. Would that work? Dunno. Anyway, imagine me reading your blog, scratching my head, but smiling and feeling happy. Thanks and good wishes. Tony.
Hi Matty, thanks for sharing your experience with such details, it helped me better understand how the world is observed from another point of view, your writing is great and I hope you eill keep on writing.