A few months back, I joined my first Discord group. It was a nice pleasure because I am meeting autistics from all over the world. Another advantage of joining this specific group under a chanel for “Yo Samdy Sam” has a couple book groups-one group for comment on amazing books and one book club. It was in this book club that we as a group decided as our first book we were going to read Odd Girl Out by Laura James.
The book is the story of a late diagnosis autistic women, her attempt to catalog her life experiences and how they fit into this new world that has opened up to her. I was glad we had decided to read this book as it was shorter than the other book we were considering and it also had audible options along with digital and paperback versions–something someone with ADHD/autistic struggles in executive functioning truly appreciate.
*********WARNING: SPOILER ALERTS************
This feels like a “duh” in my mind when you’re reading a book review, but not always. So what comes hereafter may be a spoiler alert. There are also some mild trigger warnings from the events in Mrs James’ life including divorce, discussions of addiction and a lot of emotional topics personally set me off some nights.
So let’s dive into the book. It is divided into 16 chapters, mostly in chronological order from August 2015 when the author first reads her evaluation about her autism diagnosis while on a getaway vacation she is taking before her children go to university. The book follows the events that transpire in her life interjecting a couple sections throughout random chapters where “flashbacks’ appear mid-thought. She is a writer for the Telegraph and even writes about her “coming out” as autistic in one of her articles. At first, this thru me off. But listening to the book on tape a little helped me out a lot listening to it while taking a long walk or when driving in the car. But then I realized I wanted to highlight almost every line on every page. So I did have to spend a lot of time sitting with the audio. But it was worth every minute. And yes, my poo paperback is covered his markings. Several markings.
Besides the book being completely relatable to my autistic life experience — the author is excellent at writing out her thought process. This is extremely helpful because I feel as an autistic person– sometimes people don’t hear how we are thinking. And (surprise!) we do NOT think like everyone else. I know personally I have a great problem with people putting words and thoughts in my head and this is typical of most autistics. So to hear words from another autistic in the words (like word for word phrases) was hugely supportive. Page 99–i highlighted half the page. Same true with pg 164-65. Here’s one form page 154 “If my interests were people-focused, they would be too painful to deal with. People are unpredictable. They say one thing and mean another. Autistic honest has a purity. Ask us a question and we will tell you the truth. One hundred per cent. Undiluted by squeamishness. Unadulterated.” I tell people this all the time–that my questions are true inquiries and I am several times too honest for life.
Another discussion I enjoyed was at the end of Chapter 6–about finding information and being happy with this as an autistic. Laura James talks about Sarah Wild (a director of a school made for autistic brains) and how she believes that Autistic happiness is different and that neurotypical people need to stop judging autistics by their neurotypical standards. “Meeting experts is pure heaven for someone autistic. The access I am given to someone’s knowledge never fails to make me happy. Even more so if they happen to know something about one of my current intense interests.” (pg 111-12)
So I would arguably say if you have an autistic family, friend or you yourself are autistic–please PLEASE read this book. It’s worth it. To hear a voice is huge.
I’m going to admit something that people may know but don’t see a lot about me. It’s something I struggle with every time we go on vacation, when we moved and even when my schedule gets altered a little.
Yep. Transitions. I struggle with change all the time. I used to think i was good at handling things but i gradually realized its only the severe difficult thing I can process because I have the ability to separate myself from reality for a little bit. For example– when my mom died, I was able to come home, enjoy a meal she liked and go to Disneyland to let loose. But with everyday change and transitions, I struggle. A lot. I need a therapist for it. Let me rewind to our last major vacation. We were leaving the Disney Cruise Ship, a friend was picking us up and while Austin was crying (new car, leaving mickey behind, etc-he has my transition issues for sure) half way back home, I started bawling in the car. I couldn’t figure out why. I wasn’t hypervenilating or had a raised heartbeat. But I couldn’t stop crying. My body felt as if it was leaving something behind. Something I felt safe in. And it was like getting shocked in cold water. The crying was an uncontrollable reaction. Even though I managed to be strong for a movement to get Austin in his carseat–my spoons were already gone. (google spoon theory and autism.)
Difficulty with transitions is common among those who are autistic. Change affects our perception of our world and our brains and our bodies cannot intake the sensory movement between one item and another. And because our social and communication sensors are overwhelmed or even off– we resort to stimming or eventual breakdown/meltdown and burnout. What happened after I returned home? — I had to go hide, self-care, be left alone and actually snuggle with something soft. I always need a day after a vacation. Not to just get back into the normal schedule–but to make sure I’m in a safe place to digest the change.
So be kind to those of us still trying to gradually work through our transitions. This world seems like its in a constant state of flux and routine is more comforting than chaotic movement. Allow us to be free, to feel, allow us time and space. We will come back . In our own time and way. And we will value and respect what we are given.
So I’ve been thinking a lot about myself lately. Maybe it’s because I’m that age. Maybe it’s just wanting to be myself or at least understand more about who I am. Maybe…just because. I have that right, don’t I? 🙂
So I put down Game of Thrones and Lord of the Rings and started reading some others material. I got a recommendation from a few of the female autistics I follow online and decided to read Everyday Aspergers: A journey on the Autism Spectrum By Samantha Craft. It is very uniquely structured and extremely personally relevant book. I will do a post when I finish it (its 300+ pages so it will be a while)
But I wanted to talk about this one specific chapter (more like insert thought bubble.) Number 37. “Fake it or Break it.” Its a brief chapter about how women with Aspergers (now classified under the umbrella of autism) are constantly in a state of acting or more commonly known as masking. For the author–she talks about this constant process of evaluating people because in order to survive in a neurotypical world, you have to at least fake being involved or you may, well, “break.”
It was the first reading regarding autism that I was fully able to relate to. Over the past 6-9 months, I have been floating around this idea of identifying as autistic. My son definitely has something going on and we share so much in our sensory world that I wanted to explore. And while i talked about reasons WHY I feel I am autistic in previous posts, this whole section was a description of what typically goes thru in my back thoughts in most of my daily life. And by what I mean by “back thoughts” is that these internal thoughts about what people are thinking that happen before/during and after interactions with people/new situations.
For example– when I go to a new place (like the PetCon event in downtown L.A.), I will purposefully hang around the edges (walked around the edge of the event, sat down in a cornered place, etc.) and eventually when I try to break into the invisible social/communication line (by talking to some one about dogs or with another guest why I’m there), I’m either still evaluating what people think of me/my people/things or I start talking so much I push the emotional confusion out for a bit (like a hyper focused individual.) Let’s just say I barely made it thru that day and I’m still processing some things even now (like why I wasn’t included on the stars’ youtube channel with my adorable but totally sensory seeking kid which probably didn’t even register on the person’s mind let alone as something that they had personally done to offend me. Wait-nope, still sad/angry. Moving on.)
I don’t know if I have been doing this ALL my life but i’ve definitely been doing this most of my young adult/adult life. I used to think people did this to evaluate themselves, make themselves better, try to move up the work or social ladders, but it appears I was WAY off. Only recently did I recognize what I was doing because its so automatic to watch others. But if non autistic people wants to realize why women have trouble getting early diagnosis and why a lot of us “don’t look autistic.”, here’s why:
1) First, its a common thing for autistic women to do this because we learned it at a very young age how to survive in our communities (regardless if you’re neurotypical or diverse.) I don’t know if it specially a women/girl thing but definitely in younger girl groups, structure happens and women react on it quick and sometimes in mean ways. (talk to a standard 10 year old girl.) But autistic women such as myself do this as a way to figure out what is being communicated in order to survive. I remember intentionally thinking about other girls at my school and what they were doing to survive (makeup/music, etc–which it wasn’t surviving to them) and trying to buy the right thing or learn the right trick to get accepted. I’m still doing this now-almost crying when they provided a class on lynda.com called “Office Politics” and understanding the dynamics of working in a business world. I struggled hard when I first got hired to where I am now.
2) Second, this is not a verbal/visual thing and it is very easy to hide. For some, it looks like the person is an introvert. For others, it can look like a mental disease or psycological issue. Don’t believe me–ask the countless adult autistic women who have either been diagnosed wrong with a mental illness or have co-existing mental health issues. (I could write many blogs on this i’m sure but as a people/nation/whatever, our understanding of mental health is sorely lacking.) For me? – its a spy sneaky game to me, to watch others, to wonder what is going on in their head and to hide in their world. Yep. I disassociate. Always have wanted to and it doesn’t help there are elements of my faith that encourage this. (its okay–i realize as Christians there are theological reasons why that doesn’t exactly work.) Oh and it’s bad if some one interrupts me. I get personally offended. Get angry. Even though they did nothing wrong.
3)Third–It’s not just wearing multiple hats. Autistic people wear multiple hats because we distinguish between the hats. They are separate identities. Even separate souls I guess you could say (descriptions for autistic people can be…um…not problematic but just… different.) It’s hard to see all identities as one person. At least from my perspective. I struggle really hard right now with even just being mom, wife, employee and me. Yes, that’s true-I have my own separate category. Even though I am all these at once, I am still separate some days in my mind ( Our God-Like quality?-okay, i promise not to jump into theology mode.) And I really only feel like me when I take off every mask. That’s when I’m free. Free to Be. It’s also why I find so much joy in my faith—between me and God, I don’t have to worry about being [insert any choice descriptive language.] Because God’s just that awesome.
Anyways– I hope that this blog can give an insight to how a neurodiverse/autistic mind operates. Maybe it can give a little information for those that don’t think about how they are communicating.
So i am please to say I am working on doing more reading as I begin the year 2019. As I stated, I haven’t been readying as much since I had Austin and its something I’m beginning to miss.
So, to break the curiousity of my mind (and some of my son’s issues), I decided to take some recommendations from a facebook parent group i’m a part of and look into this book: The out of Sync Child by Carol Stock Kranowitz.
This book is about what is says on the cover: recognizing and dealing with Sensory process disorder in children. And yes — I will admit that I think Austin has some of this as I will explain in a minute. The author is a former school teacher with a Masters in Education and “Human Development” (I’m taking from the inside cover of my copy of the book) who I can say its pretty much the most experiental expert for this topic. She also has worked with an occupational therapist for children to confirm her reseach who wrote the other recommended book for this disorder: Sensational Kids by Lucy Jane Miller, Ph.D., OTR. (yep, got that book too.)
For those of you who don’t know — sensory processing disorder is where a child has issues processing sensory items in their environment so much that it inhibits their daily routine. This is not limited to the 5 senses we all know (like touch/taste/sight/hearing/smell) but also the others related to your sense of self and your relationship to gravity and space. For some, sensory processing issues can be loud noises or scratchy clothing. For my son–it means a lot of things taste funny or weird and he never wants to wear a hat. I mean will throw tantrums if you put anything on his head for a second. And I mean rarely eats toddler appropriate food. Some related issues he has is that we are now seeing a speech therapist for his delays there and seeing an occupational therapist so he can learn age appropriate functions like dressing himself, how to experience new things and yet self-sooth.
Now–there are many reasons why I personally am reading this book. But the information I am learning surrounding sensory processing and its related issues are reasons I want to recommend this book to everyone. First– it has given me a new awareness of things I do to compensate my sensory processing. I know–i’m an adult– but there were things I did as a child I now understand why and as an adult I can learn and help myself function better. Second–it has opened up my eyes and my heart to seeing children (and adults) more neurodiversally. Meaning that some times, people take in information and release out other information differently. And that’s not a bad thing.
What’s been interesting is that sensory processing is tpyically linked with Autism spectrum issues. Many times autistics have sensory processing issues and vice versa. I’m not sure if Austin has it himself (i’ve been told no but he’s still under 3 so you never know where things go at this age,) but I am interacting on social media with parents who have sensory/autstic families and adults to help/support/understand what it means to look at the world differently. That’s a huge reason in itself to read this book.
So if you need some non fiction ready for something very insightful and severely misunderstood, read this book.
I know you’re probably all wondering…is the Christmas season over yet? You’re trying to clean up small bits of wrapping paper or pine needles while trying to pawn off the leftovers still in the fridge.
But nope. Not yet.
But…that’s okay. Maybe we need it. Or at least the need the dreams it can ensue.
I am always a fan of celebrating Christmas longer than the 25th. Not only because it allows for me to take the time to tear down the fire hazard sitting in my living room but to be true to the history of the holiday, there are really twelve days of Christmas. Well, maybe not birds in a tree or “10 drummers druming” – But between Dec. 25th and the next holiday in the church calendar, it is supposed to be the days between christmas and ephiphany. The day the kings (or wise men or whatever) came bearing kingly gifts to a baby in a manager.
Personally, I know that three guys bringing gifts to a baby sounds a little of a stretch, especially being “kings.” But as a christian–it is the reminder that some dudes found Jesus important enough to leave heavily valued gifts. I also like the idea that sometimes the greater gifts come later and that digesting true greatness can also take time.
So if anyone ever asks why the lights are up past New Year’s…tell them Jesus’ stat stated lit long enough for 3 fancy smashy guys to find him and bring him stuff so you’re hoping for the same.