Sit down and play along

When WonderBoy was a toddler, there was a lot of discussion about “appropriate” play.  To this day, hearing or reading the word “appropriate” causes a visceral reaction in me that takes me back to those early days, six years ago.  I understood the reaction but didn’t have something to relate it to until I read this post online on the Diary of a Mom page on Facebook.

He didn’t play with toys in the same ways that his brothers or his peers did.  And often his play was not using what many would consider toys at all.  And we celebrated it, once we realized how much the concept of “appropriate” play was a problem.

11703431_10207444317248390_6958126811855439381_o
  WonderBoy, playing with a trivet. This is one of my favorite photos of him… (image shows a young boy with blond hair. He is wearing a black shirt and blue jeans and is holding a green trivet in one hand).

 

2015Marcomeme1
And that same photo made better by a friend with photo editing skills. (image shows a boy with blond hair and a superimposed image of a shark)

I actually had a hard time finding photos of him playing at all, mostly because a lot of what he did was sit and look at books.  But when he was younger a lot of his play involved lining up rows of toys of the same type: cars, rubber ducks, plastic animals, stuffed animals.  Then his play evolved somewhat, and he would grab a stuffed animal of a particular type while watching a nature documentary.  For example, if one segment of the show was about hawks, he would grab his hawk puppet. If it was about bats, he’d grab a stuffy bat, and so forth.  His play continues to evolve and it makes absolute sense to me, and to anyone who spends any actual time with him.

 

How can we begin to shift the narrative around how children play and end the use of the word “appropriate” when talking about how kids do things? How anyone does things? Furthermore, when a child who is drawn to toys/books/shows which are geared for a “younger” audience, what can we do to stop criticizing and start appreciating?

I have already figured out the answers within my own home, but that’s not really enough any more.

I challenge you, all of you, to stop using the word “appropriate” when talking or even thinking about someone’s interests, regardless of their age. Apply a different lens to the situation when you view it, apply a lens of understanding and appreciation.

Sit down, stop pathologizing, and play along. You might just learn something.

Person-first or identity-first? The debate goes on…and on…and on…

There’s a big discussion going on right now, it might be bigger than puzzle pieces or even vaccines. It’s a discussion that goes beyond the autistic community and encompasses the entirety of the disabled community.

Person-first or identity-first?  Which side of the fence do you land on and why? Oh, and did you know? No matter what you prefer, there is someone waiting in the wings to tell you that you’re wrong.

Really.

I see it most often on posts on social media where someone who is disabled uses identity-first because it is how THEY identify.  Almost immediately, as if someone was just sitting at their computer with their hands poised waiting to strike, someone (often someone who is not disabled) will correct them.  And ALWAYS they start with “ACTUALLY, the right way to say it is person-first because you should always see the PERSON not the disability”.

I cannot cringe hard enough. I’d probably pull a muscle if I cringed any harder at that.

There are hundreds of videos on YouTube on this topic (okay, I stopped counting at 40, but there were so so many) and thousands of blog posts written by people who are disabled, who are #actuallyautistic, and many of them are saying the same thing: Identity first.
But many of them are also saying my favorite part:  It really and truly is up to each person what they should be called.

In human services, the big push for many years has been person-first language.  Why? Because as our friend above mentioned, we should always see the person first.

My brain screeched to a halt on that one.

Hang on there, friend, so does that mean that without that language you don’t see disabled people as people?  You really need an ENTIRE industry to alter their wording because society cannot remember that people who just happen to have disabilities are people?

Damn.

That’s scary.  And it’s true, unfortunately.

And now we live in an age of self-advocacy.  The voices of the autistic community and more broadly the disability community are getting louder.  People are starting to listen.  Change is in the wind.

For me, personally, I prefer identity first.  I could try to explain it as the fact that you cannot separate me from who I am because, well, it’s who I am.  Therefore, I am not “with” anything.  There are those who feel that person-first better describes them, and I totally respect that.

Sensory needs and a post about bullying

That title is a little wonky, and for that I apologize.

I have missed several days of writing in the #30daysofautismacceptance challenge, but I think no one is all that surprised.  Sticking to anything for more than 8 days is challenging for me.
But I just did a training at work on Understanding and Supporting Sensory Needs and I noticed that April 16th was meant to be a post on sensory issues.  Oddly, that’s the day I gave the training.  So here you go, my weird list of sensory issues, followed by my kids:

  1. Clothing- must typically be a natural fabric whenever possible, or at the very least a blend.  All man-made fabrics feel wretched against my arms.  Tags are a big no, and I prefer my pants to be tight but my shirts to be loose (I told you I am strange).
  2. I NEED human touch.  I am constantly holding my husband’s hand, whether we are walking somewhere or just sitting on the couch.  I can’t sit too far away from him either, as I need to feel the proprioceptive input (that’s pressure) against my arm, my leg, etc.  I share this trait with our youngest son.
  3. I have misophonia- hearing other people chewing sends my amygdala into overdrive and while I want to scream and rip my own ears off my head, the preferred response is for me to simply leave the room.  Conversation at the dinner table helps this, however if it is just myself and my husband eating together I often will either leave the room to eat alone or I will put on music.
  4. Cross-conversation is too overwhelming. I don’t mind quiet conversation or loud music, but if you put me at a table with six people and they’re all talking to each other, I can hear everything and nothing all at once.
  5. I have a super-sniffer and am a super-taster… it doesn’t matter how subtle a smell is, I can detect it and usually track it down. I’m known as the bloodhound in our house, particularly when something smells bad and needs finding before it smells worse.
  6. I am hyper-reactive to any and all changes happening in my body.  I shared a video during the training about interoception that really talks about level of awareness of what is going on in your body. This is sense is called interoception. This means that for me, I may go to the doctor for something that most people wouldn’t notice.  Often I am not clinically ill or injured, however I am fortunate in that my nurse practitioner and my rheumatologist agree that just because I don’t meet diagnostic criteria for something does not lessen my personal experience with it. They take it seriously, a fact for which I am eternally grateful.  Here is a short video on interoception:

 

I am sure that I have other sensory issues, however this is what I could think of today.

My kids are a little different.  My 17 year old loathes being touched or having anyone or anything touch him.  My 7 year old seeks touch to the degree that he is often found totally wrapped around me, my husband, or one of his brothers.  My 9 year old is somewhere in between, as is my 20 year old.  My husband doesn’t like hugs, except from me or the kids. But he also grew up in a household of non-huggers, so that may be more learned than anything else.
The younger two kids, particularly the youngest, have food sensitivities which I suspect are either related to texture, smell, or taste.  They can tell if I purchase a different brand of dinosaur-shaped chicken nuggets, for example, and won’t eat them if they’re not from Aldi. They prefer things which crunch OR things which are plain white pasta.  In fact, they will eat little else, save pizza and peanut butter sandwiches.  It’s a very small repertoire of foods.

 

Okay, on to bullying.  I am going to make this a short one, mostly because I don’t have the physical or mental energy at the moment.  When I am feeling stronger I will write more.
For my entire life I have been bullied.  By friends, by peers, by colleagues, by strangers, by anyone.  In junior high and high school it mostly was physical- from getting punched in the back by a former friend every time she passed me in the crowded hallways to being dragged to the girls room for a very public fight (all the girls who were friends with the perpetrator crowded into the bathroom to bear witness).
As I got older it became less physical and more verbal.  People still will tease me for the “weird” things I say.  I’m sorry, but if I walk into your office and the air smells just like airplane air, I will say it out loud.  And then you’ll make me feel awful for doing so, and I’ll spend the next week hiding how odd I can be.

I’m finally at the point where I am learning how to own my weirdness.  Yes, I say strange things and I am impulsive yet well-rooted in routines and schedules.  Yes, I will stim in front of you IF you are a person who I know won’t tease me (or if I’m in a very crowded place and need to find my center).  I am learning how to talk openly in real life about all of these things without being scared that you’ll make fun of me.  And I am VERY slowly learning how to quickly stop the negative self-talk when you eventually do make fun of me.

 

April 9, 2019 My favorite austistic advocates and blogs!

Yay!  Something happy!  The end of that last post was hard to write.

I have a few favorite autistic advocates/bloggers/vloggers, and they’re on multiple platforms.  I’m going to link to their YouTube channels and Facebook pages below.

Neurodivergent Rebel is probably my favorite.  She (Christa Holmans) and her husband and their dogs live in an RV and they’re fantastic!  Her YouTube channel is here  and her Facebook page is here.  I like her posts because they’re full of information, they’re respectful, and when they need to be, they’re blunt.  She’s got a dynamic personality, and I love that she is honest about sometimes needing to take a moment to figure out what she’s trying to say.

Agony Autie is another of my favorites.  She’s an advocate in the UK, and she talks a lot about the lack of transportation accommodations in the UK (at times she needs to use a scooter, and the train company is not accommodating to people who use mobility aids).
Her Facebook page is here, and her YouTube channel is here.

Autistic, Not Weird is run by Chris Bonnello and he’s a fantastic advocate and teacher who speaks out quite a lot on behalf of autistic children.  I purchased his book for the Autism Lending Library where I work, and it’s a celebration of who we are which is written by children, for children.

book
Image shows a book cover depicting 67 photos of children and the title “What we Love most about Life: Answers from 150 children across the autism spectrum” Compiled by Chris Bonnello

Chris’ Facebook page is here, and this is his website. One of the things that I really appreciate about his posts on Facebook is that they are often lists of ways to support autistic people or positive things about being autistic.  This approach is important to changing the narrative around neurodivergence, which is all too often depicted as tragic.  Autism is not a tragedy.  Shall I say it louder for the people in the back of the audience?  AUTISM IS NOT A TRAGEDY.  Being different is to be celebrated.  It is our differences which make us so beautiful.

Last but not least, there is a list called Actually Autistic Blogs List.  It is literally what it sounds like, a list of blogs written by people who are #actuallyautistic.  This is a fantastic resource, and the list includes information such as the author’s age, name, diagnoses, and anything else that they shared with the blog.  If you want to do more reading of things written by people who are autistic, this is a great place to find a LOT of blogs!

 

 

April 6, 7, 8 2019

Okay, I tried writing every day.  The weekend came along and I just didn’t have it in me to write (but I did do some crafting which I haven’t had the mental energy to do for months).

I’m going to do three days in one, here we go….

Stimming- What does it mean to me and what do I do to stim?

Stimming stands for “self-stimulatory behavior” and is often used as a way to regulate or manage sensory overload.  It can also happen when someone is happy, or just simply feels the need to move.  It can look like dancing, rocking, hand flapping, the list goes on.  There are many stims, and many people have a few that are important to them.

For me, it is usually rocking back and forth in my chair or swaying slightly when I am standing.  If you see me standing absolutely still, know that it is taking me an enormous amount of energy to do this.

Another stim I have is squeezing my hands together, as if I was milking a cow.  That one happens when I’m distressed and really need help managing the overload in the moment.

If I’m walking through a busy store and am feeling overloaded, I will bounce one hand against my side or my leg.  It helps me feel solid at a time when I’m struggling to tell where I end and all the other people/noises/smells begin.

I probably have a lot of other stims that I don’t even notice anymore.

Here- watch one of my favorite autistic vloggers talk about stimming:

April 7: Talk about special interests

My special interest would have to be advocacy and social issues.  Really, I spend an amazing amount of time reading about it, studying advocates, and anytime someone gets me started (or even when they don’t) I can go on and on and on and on…. I enjoy discussing and studying social issues of many types, but the rights of autistic people and disability rights in general fascinate me. They’re important to me.  And they’ve grown in importance as I’ve gotten to better understand myself, my children, and people I work with.  My youngest has a special interest in nature documentaries narrated by David Attenborough, which he has watched since he was 10 months old (he’s now 7).  He knows an incredible amount about all things nature-related, particularly insects.  We supported his love of praying mantids by keeping one as a pet.  His name was Bobby, and he was so beautiful.

April 8: talk about ableism

I think the main thing that I’ve run into personally has been when people either laugh at my quirks (which makes me feel like I’ve just been gut punched), or encourage me to do things to appear more typical.  Guess what?  What’s typical for you is most definitely not typical for me.  In a professional setting, I’ve had to train myself to appear as though I’m making good eye contact. That actually makes me angry to even type it.  My son’s psychologist asked me what I do to make it appear as though I was looking him in the eye, and congratulated me for finding such a smart way to do it.  I still hear his words echoing through my brain, as though appearing “normal” was the end goal there.

 

 

 

 

April 5, 2019: When did you first realize that you were autistic?

It was 4:32pm on August 12th….

KIDDING.  I literally forget my own age, I’m not going to remember the exact moment.  But I can give you a little more than just sarcasm today.

It goes back to the diagnosis of my youngest, which happened when he was 18 months old.  He was the first in the family to receive formal diagnosis.  Then his older brother’s diagnosis happened a few years later, and my husband and I really started to get a better understanding of the ways in which autistic people can be so very different and yet have many similar traits. We started to look at our own lives and those of our extended family members, as well as my older two sons.

As I look back across my life, so many moments come into better focus and make more sense when I apply the autism filter.  I’ve spent enough time listing those things off for people in defense of my self-identification that I have finally reached a point of saying “look, it’s not really my problem if you don’t believe me”.  So many adults self-identify as autistic that I’m not interested in selling the concept to anyone.  Just know that within the last two years, I have finally begun to feel like I understand who I am and why I am.  I can understand why I so often say things that people think are weird.  I can’t seem to stop myself from doing that, but at least I am no longer uncomfortable with it.  I no longer turn bright red when people laugh, nor do my eyes well up with tears. I’ve built a resilience to any teasing that comes my way. Not to mention that I now work in a place where generally speaking I don’t get teased.  People there seem to accept me for who I am, and that really goes a long way towards feeling okay with myself.

This year I will turn 45.  And yet I feel finally that I am building the confidence that I need and I am starting to tear down the anxiety which so often tries to tear ME down.  And like many other adults who self-identify, I finally feel like me.  It’s a pretty incredible feeling.

I will always say weird things.  And I will always look for rainbows.  And I will probably always struggle to understand what people are feeling when I look at them (but will typically soak up what other people are feeling as though I were a sponge). And I will always feel better when things are ordered and neat (yet will always have a certain amount of my own clutter).  And I will swing on the swingset and ride a carousel happily, and stim when I need to.  And I will not hide any of that from people.  This is me.  This is #autismacceptance2019 .

April 4, 2019: What do you wish more people knew about autism?

April 4, 2019: What do you wish more people knew about autism?

Got an hour?  I could probably write a verrrry lengthy piece on this, if my hands could handle that much typing this morning.

There are a lot of myths out there still regarding autism.  Seriously, it’s 2019, and people are out there choosing to NOT fully understand it.  I say that because with all the credible and heavily researched information available to us anytime we want to access it on our phones, computers, tablets, you name it, there is no excuse for not understanding how this works, lovelies.

I’m going to break it down, and many other writers/bloggers/vloggers have done this before me so I don’t know that you’ll learn something new, but I hope that you do.

  1. Autism is hereditary.  Babies in utero already have this neurological processing, so I’m sorry to tell you this but it is not a result of vaccines (thanks so much, Wakefield, for your false study).  It is not a result of environmental factors either, so chill out.
  2. Being autistic can mean having the ability to problem solve in creative ways that no one considered.  It can mean seeing beauty in small details such as the barely perceptible pattern on a flower petal.  It is a way of processing the information coming into our brains from the outside world.
  3. The “increase” in diagnosed cases of autism is due in large part to the new diagnostic criteria in the DSM-V.  Doctors now know better that the people who went undiagnosed before or were incorrectly diagnosed should have been given this diagnosis all along. There are not more autistic people than ten/twenty/100 years ago, there are more diagnosed people.  There is a huge difference between the two.
  4. Just because I’m an adult who communicates verbally, has a family and a job and a place to live, does not mean I can’t be autistic.
  5. Autism is a spectrum, but it is NOT linear. Artist Rebecca Burgess created this comic to explain the spectrum, and I really like this one.
  6. Masking (pretending to be like neurotypical people) is exhausting.  I am fortunate to have a partner who gets that I need stim time.  I am also fortunate to work in a place where I can more or less be me, and if I can’t be then at least I have my own office where I can get my work done and fidget freely.
  7. There are coexisting conditions that many autistic people have.  These can be anxiety and depression, digestive issues, Ehlers Danos (and other related connective tissue disorders) Reynaud’s (a circulation dysfunction), seizures, ADHD, and more.  When people refer to autism and “behaviors”, often the root of a behavior is related to a coexisting condition rather than the autism itself.  It is vital to determine this rather than simply attributing everything that someone experiences to the fact that they’re autistic.
  8. Functioning labels are so awful.  Please stop saying that someone has “mild” autism.  How you experience that person might be mild, but their neurology is not “mild” or “severe”.  Also saying “high-” or “low-functioning” is just simply not okay.  I could link to all the other articles I’ve read about why this is ableist and harmful, or you could Google it.
  9. There are a LOT of autistic people out there who have written many many things.  Read them. Hear the message.  Did that?  Good.  Now it’s your turn to be a good ally and go out there into the world and do a little myth-busting of your own.

 

Okay, the Beautiful Noise mini lecture series is over for today.  These are things that I hope you already knew, but if you didn’t then I’m glad you read this far.

Peace.