Reminiscing Childhood Play As a Girl On the Autism Spectrum

I've read a few news articles lately talking about the differences of how girls with autism play differently than boys do, mainly how girls don't do as much lining up and fixate on eccentric subjects.  This got me nostalgic of my childhood.  How did I play?  Was it all that much different than other girls?

I have an extraordinary memory of ages that most people (non-autistic anyway) can't remember. While I only remember snippets I can fondly recall some memories from when I was just a year old. My favorite thing to play with when I was about 1-2 yrs old was a Humpty Dumpty puzzle. Much like the one to the left.  I'd dump it out and redo it all day long. It now strikes me as something that might be a little difficult for an average 12-24 month old, but nonetheless, it was my favorite.

When I got a little older I really liked books.  I wanted my mom to read me the same books over and over again.  My favorite one was 'The Poky Little Puppy'.  I just couldn't get enough of it!

My next book obsession was the Sweet Pickle book collection.  I loved the stories and the little maps they had in the back of the book of the town.  My favorite book out of that series was:
Funny how even at age 3 I knew how anxious I was!  I couldn't stand 'Me Too Iguana', though.  Copy cats and people who are unoriginal still are pet peeves to me now as an adult!  I would recommend these books for any spectrum child, as they really capture emotions in ways that an autistic child can grasp and learn from.  My son Particularly liked 'Zip Goes Zebra'. I'm guessing due to Zebra's zany personality and love for adventure.

As a got a bit older I started playing with dolls and play dishes.  I was the type of child who could entertain herself for hours with very little toys.  I never did master the art of pretend play.  When I played, there was always a script, or a plan.  If I played with my dishes, I'd spend more time arranging them, than actually playing with them, and I never ever pretended to fill the cups with liquid, or plates with food.  I'd always use real drinks and real food.  Seemed idiotic to not use any when there was some available.  Never was sure why other girls didn't.  I rarely played tea with other girls when I was really young.  I didn't get much of an opportunity, and I was too bossy, anyway.

I didn't play as much with baby dolls.  I did however play quite a lot with Barbies.  Most girls would dump all of their barbie things out into a pile and just use things as they pleased.  I didn't do unstructured play like that.  I would line up every Barbie (I had about 5) then I'd categorize every item of clothing and accessory.  Ball dresses, skirts, shirts, shoes, ect would all have a pile.Then, if I were playing with someone else we'd take turns picking from a pile until it was finished. If there was an odd number the odd item would go to another pile to be picked through evenly at the end.  Every Barbie always got the same amount.  To me, this was fair and the best way to play.  Needless to say, other girls wouldn't always want to play with me this way.  If they were my cousins, or people that I didn't like much I'd tell them they had to or they couldn't play with my Barbies.  I'd rather play alone, than with them messing up my order.  If I were at school with girls that I wanted to be my friend, I may concede to their way, but I'd get very whiny and moody as the time crept on, with my order messed up.  It was like a small itch gradually turning into a thriving rash. I barely could ignore the fact that my routine was destroyed.  I played almost every game this way, even Legos.  Legos were categorized by shape, then chosen by the players.  You played with your Legos and doll stuff, and I played with mine.  Only under negotiation was there to be any trades.

I used to line up many things.  I'd spend hours lining up my stuffed animals. I'd categorize them first, by color, or by animal ie; lions, cats, bears, ect..  I'd line them up by a category, look at them from all different angles and from across the room, take the line down, and do it again.  I used to do this with almost everything you could think of, dandelions, rocks, weeds, silverware, anything!

I'd play 'store' a lot.  That's where I'd set up tons of objects as if they were in the store.  I'd even make little price tags for the items. This literally would take me all day.  I didn't always even get to play with the stuff I arranged because it would take me so long to set it all up.  My favorite was to play this was outside with old jars and soup cans.  I'd fill them with dirt and line them up, then dump them out and do it all over again.  My mother didn't like that one as much, and I always got into trouble for playing with broken glass jars and rusty old cans.

By the time I turned around 10 years old I was really into Little House On The Prairie books and horses.  If I wasn't reading I was drawing about it. I loved those books! I did like to dress up like I was a teacher and read the books aloud to a pretend classroom.

My obsession with reading kept on through my teen years,as well as lent itself to a love of writing.  Play was swept aside at age 13 by an old timey typewriter.  I spent many a nights clack-clacking away (much like now!) a story for the fun of it.  To replace my need for categorizing, I began making lists.  I made lists of the boys I liked, or what clothes I wanted, or friends I had.  I listed things I wanted to do, did do, or what I liked to do.  I made lists of lists.  Much like now, I could never see boredom in the world that I could always find something interesting to do.

One last toy to share before I can call this an inclusive entry of beloved toys and books:
Anyone remember the Spirograph? It used to keep me occupied for hours!

Part Of Me

There's been so much controversy here in the autism community lately about what's okay to say and who has the rights to say it.  I think that it's always best to try to not be offensive to others, but free speech is so important to me that I believe that everyone has a right to express how they feel, even if it's something I vehemently disagree with.  I still want to hear your side. I want to know what is behind those opinions, those thoughts.  Strong words usually have a story behind them. I want to hear that story and understand what has caused you to take such a strong stance.  I want to hear what makes you think that autism sucks, or why you hate it.  I want to know why some of you feel that only the parents of children with severe autism have a reason to feel angry, or the only ones that can really understand 'true' autism.

Usually, when I try to listen I get past the words to the emotions.  These emotions are strong. Sometimes, they are desperate ones. Sometimes, they are angry over lost time, money, health. Sometimes, they are sad. They are sad for what they think or even know their child endures daily. Sometimes, these emotions are from fear. Fear of who will care for their child when/if they die. Fear for the every second their child is out of their sight, because you know that in their lifetime there is a very, very, very high percentage of abuse and that teachers, carers, peers, and others will target your child due to their vulnerability.  You know that many will never understand your child.  Sometimes, it's a feeling of deep sadness, because you know your child is sad. You know how much they yearn for a friend, and to be accepted and you see that autism is what's stopping that from happening. As parents, we feel so strongly a need to take away these struggles from our kids. We want so much for them to be happy. Sometimes, the parents are just exhausted. They need sleep and they need a break.  There's so much worry that accompanies the parents of autistic children, even when they grow up. You see autism as the problem. If there were no autism, then these problems wouldn't exist.

But, autism does exist. It's a part of me and not separable from me, or my sons.  If someone gets upset about one of my autistic behaviors, I feel they are upset with me. When they hate autism, they hate a part of me. That makes it feel shameful, and bad. Like, something I need to hide away. In doing this, I have carried so much extra burden and self hate. I am now at a place in my life where I am tired of carrying it.  My neurological differences are not shameful.  They are just different. I need to put this extra weight down and relieve myself from carrying these expectations of what society says I should be.  Not because I think autism is something spectacular, but because it's part of who I am and it's not going anywhere. I may as well accept it.  I can't change it.  I can't change the fact that Beans will likely never speak, and may not even be potty trained as an adult. I can't change that Bubby may never go to sleepovers with other boys or be able to read other people's intentions. It is what it is. Some days are good. Some days aren't.  Some days coping seems to be all I can do. I always want my boys to think of themselves as someone who is loved, and deserving of the same respect everyone else is.  I want them to know that their differences may make them different, but still people of value.  I don't ever  describe the using words that are negative. I don't want them to see themselves that way and I sure as hell don't want society thinking of them that way.  Sometimes, I hate it when Beans chews up my power cord to my laptop, or pees on the floor.  I hate the situation , not the autism.  I hate when Bubby throws a fit over a routine change.  I hate the situation, not the autism.  I hate when I go to a social occasion and end up mute, not being able to join in socially, even if I want to.  I hate the situation, not my autism, and subsequently myself. 

That's my take. As I said, always happy to hear others.  Life is guaranteed to come with struggles.  Some more painful, than others. Some, seeming more unfair than others, but we all have our own. Please try to remember that when speaking to others.

Pre-meltdown

Some may be wondering about where the video I posted earlier went. I felt self conscious about it and took it down. It happened again.  It's still happening right now, as a matter of fact....

By it I mean frustrations leading to meltdown status.  I'm not yet in a meltdown, but I could so easily slip right into one, as it's close enough to taste right now.  It's that sensation of nothing be right.  How wrong it all feels. My head is hurting, my stomach is in knots, and nothing feels right.  My skin recoils from every texture, my ears feel no respite from every noise that seems to be all on max volume.  I want to run away, but have someone hug me. I want t be left alone, but talk to someone.  These are my contradictions of meltdown.  Rational thought is still present, but contained in a bubble by itself, while emotional fretting is surrounding it.  I know this is nonsensical, but it's like I can't stop it.

I don't even know when and where it began. I know I read a few things this morning that didn't sit well with me, so I tried to explain my side. I was unable to do it satisfactory, at least in a way to persuade others that my view had merit.  It snowballed from here.  It has been one of those days where everything on-line that I tried to participate in went this way.  I think a normal person would have decided it was time to pack it up for the day several hours ago and busy themselves somewhere else.  Not me. I'm not normal.  I perseverate, and I do so with vigor.  These last few days I've seen a lot of ugliness in the autism community (both from NTs and autistics). I've seen a lot of irrational behavior and assumptions that make no sense and do not fit fact.  This is not merely my view on life, but real facts.  One person's fact can easily be seen as opinion from another perspective... which I know rationally.  But, my brain can't wrap itself around such a broad concept.  My brain says, it's either one or the other.  It's black or it's white. I can't. move. on.  I'm stuck in this pool of frustration.  This frustration leads itself to criticism.  I begin to fear that maybe it's me that's wrong. My thoughts circle around this idea like this:
Maybe that person doesn't like me anymore.
I'll bet they think I'm stupid.
I probably shouldn't post/say this.
I'll bet they think I'm crazy.
I am not successful.
I don't do anything right.
People in general don't like me.
I'm not a likable person.
Maybe I ought to find something else to do with my time.
No one will miss my blog/page anyway.
They all would rather me be quiet anyway.
I have nothing to offer of value.
Maybe, I'm not autistic.
Maybe there's something really wrong with me.
Why can't I stop from feeling so bad?
Maybe, I should delete this.
Maybe, I should delete my whole blog.
Why do I waste so much time?
I'll bet my husband is going to come home and just know I wasted my whole day on perseverating over something that is really minor.
He'll be disappointed.
I'll bet everyone is in me.
Why do I let everything bother me so much?
Why do I let my thoughts get so negative?
I wish I had someone to talk to that would understand.
I wish that I could talk to someone without feeling judged.
I wish I didn't feel like such a freak.
Maybe, tomorrow will be better.
Tomorrow has to be better.
This is embarrassing.

That is the making of pre-meltdown.  Actual meltdown would have had lots more cussing, and my anger eventually spewing the other way to others, where I would have deleted my page, blog, or at least some people.  I did go 'unlike' some pages, but I didn't do anything big.  Remembering my mantra:
"Don't do anything permanently stupid, because you're temporarily upset. "  I figure if I can hold off on any actions for a few hours, then if I still feel the same, the action can be carried out then.
So far, I'm a little calmer....

My Obscure Interests

Sometimes, I'm browsing along on-line and I see a common theme pop up.  It's usually a name or some meme that has burrowed it's way into American society understood by everyone it seems, except me.  I seem to be the last to know what's trendy.  What is what the world of celebs and hot new actors.  I tend to find out about it while it's on it's way out of popular focus to make room for the new hot item that I'll be just as oblivious to.  It's always been this way.  I remember a teacher teasing some kids at school about 'The New Kids On The Block'. (yes I know I'm dating myself with that!) in 6th grade.  I looked around the classroom thinking that maybe I missed some new kids.  I thought that perhaps we had some new students that the girls were particularly taken with.  Nope.  I was sure embarrassed to find out different.  I went home and begged for my parents to buy me a teen magazine.  They said no, thinking I was too young, but what they didn't understand was that I wanted it to study, so I could keep up with conversations at school.  I was out of the loop and it was killing me socially.  I remember getting into quite a lot of trouble for having a huge meltdown over them saying no, because to them it looked like I was just having a tantrum over being told I couldn't have something I wanted.  I don't know why I didn't tell them that why it was so important to me to have it.  It never occurred to me to say anything to them other than I needed it. 

Nowadays, I don't really care what's what in the entertainment world.  Today, I've seen lots of posts and talks about Kate Winslett.  I don't even know who that is.  Last week is was Ryan Goseling.  Didn't know who he was, either. I do now, but I will likely never see any of his movies.  They don't interest me, and I don't even find him all that particularity attractive.

So, what do I watch on TV?  What does interest this odd aspie?  Here's a list of most of my favorite shows.  See if you can see a pattern, and guess what it is that captures my interest.

Hoarders-Buried Alive
My Strange Addiction
Obsessed
Hoarders
Freaky Eaters
My Cat From Hell
In The Bedroom-With Dr. Laura Berman
The Daily Show
10 Things You Didn't Know About
The Regular Show
Hot In Cleveland
Tosh.0
Big Bang Theory
Saturday Night Live
Law & Order
Oddities

I think that's the bulk of them.  Have you guessed what almost all of these have in common?  With the exception of Law and Order, none are dramas, and most are non-fiction.  Most deal with anxiety based disorders, or other mental health issues.  When I watch shows like Hoarders, or Obsessed I get to see people interact in real time.  These shows aren't staged, or faked.  I get the opportunity to sit as an observer and people watch.  I get to see the facial expressions and body language of people in moments of anger, sadness, and anxiety.  This allows me to store that information, to recognize it later in real time.  I also get the benefit of seeing these very dysfunctional people living in their worlds they've built for themselves in order to cope with what is usually trauma and loss.  My empathy grows as I see the struggles that these people have faced.  I hear their stories, I see how they have lived, I see how they've tried and feel their pain.  I carry this out into the world with me as an extra bit of Theory of Mind, remembering that others sometimes do what can with what they have, and sometimes, those are poor choices, but they're not mine.  I am reminded not to judge others for things I may not know the whole story.  I see lots of mental illness, personality disorders, and yes autism in these shows.  I see people sometimes that are so enmeshed in their pain that they spew it at everyone that comes near.  I see some blame all their issues on one person, usually the child that's the most 'normal' in their family.  I see alot of my mother in these shows.  When I see it as an observer only my perspective shifts.  I see how painful and wrong it is for the child of some of these people, even if the child is an adult at the time.  They've led a life of being the scapegoat and will never get any kind of real love from their parent.  I can clearly see how this isn't their fault, so in some ways I am able to extend this compassion to myself.  I like to be able to see conflict resolution as well as some of the ways these people handle their anxieties successfully. It's inspiring, humbling, and a learning experience for me.

Of course, I do like a good dose of comedy in there, as well, to balance things out.  I just don't like fiction and drama so much.  Not in the books I read, and not in my TV viewing.  If you're not making me think, then you'd better be making me laugh, or my interest is minimal!

Safety Solutions For Autism and other Developmental Disabilities

After our big scare the other night I have upped my previously tightly secure home to that comparable to Fort Knox.  In doing this, I thought others might be able to benefit from my research, especially parents to kids that are newly diagnosed.  Our lives are often so busy that having the time research and put together the proper resources can be a daunting challenge for parents. So, below I have listed a few things that can be done to help make life safer and less stressful for for autism parents.

Items shown below are examples only and not necessarily promoted for brand or site.

Alarms and Gadgets For the Home:

Wireless Door Alarm/Chime This is what we have and it works well, installs without tools and the chime (receiver) can be plugged into any room you choose, or even unplugged, if you want to silence it for a short time.  I can hear it on both floors of our home.

Wireless Window/Door Alarm  This is what we bought for the windows.  We bought the 3 pack, plus door.  I haven't used to the door alarm yet, but plan on putting it on our back door.  The alarms are interchangeable, as far as I can tell (meaning you can use them for either windows or doors) and are very, very loud.  So far, they have worked well. Beans has opened the windows a few times, and the alarm definitely let is know!


Baby Monitors  I know this one seems to be pretty much easy to figure out, but I thought I'd list it anyway. I use one that has more than one monitor, so that I can put it on different floors and rooms of the house. That way, I can always hear what's happening in the next room.  Even though my youngest child is over eight, I know that I will need to keep utilizing monitors for many yrs to come.

Baby Gates  This one is one that not all households will need.  I have 4 in our house, one to guard the upstairs, the kitchen, the bathroom and utility room.  Any of those places could be dangerous if Beans got in unsupervised, even just for a few seconds.

Furniture Straps These are a must.  We used them with Bubby, who was a serious climber, and now for Beans, to ensure nothing heavy ever falls over on him. Very inexpensive and well worth the peace of mind.

Cabinet locks The ones in the link are the exact kind that we have.  I bought some when my daughter was a baby to lock the fish aquarium cabinet and I am still have and use the same ones today.  They've lasted a good 13 yrs and she still can't get them undone when they're on tightly, none of my kids can!  They're not convenient, but they will keep your kids out of any cabinet you put them on!

Screen Door With a Deadbolt The screen door in the picture is the one we own.  It's very difficult to unlock, but not impossible for Beans.  It's pricey, but worth the money.

Identification and Emergency Awareness:

Medical ID Bracelets   I ordered one of these for Beans with the first clasp option, as it looks the hardest to undo.  On the front I have his first and last name, Nonverbal Autism, and on the back our address, and family cell numbers.

Short range child locator 

Temporary Tattoos 

Child Harness We don't have to use ours that much anymore, but there was a time when it was necessary for Bean's safety to use a harness.

My husband and I also made a little info sheet with Beans picture on it to take to the local police station.  It just basically says his name, address and states that he is nonverbal/ autistic.  We live in a very small town and just assumed that all the officers around here (all 4 or 5 of them) pretty well knew who we were. The one on duty that found Beans was new, so we thought a little info sheet for the police station would be a good idea.

Also, if you live in the US you should go to This Site and fill out a profile for your whole family.  Smart911 is a wonderful site that allows you to already have your address, detailed instructions to your home, your vehicle and plate number, as well as a photo and details of every member in your family already on file, so that in an emergency emergency responders can already have this info without wasting precious moments for you to fill them in.  There is even a place to put special instructions.  I put a few things, like Beans loves water, so in the event of him wandering they can know that info ASAP and begin to search near water. There's no time to waste when you have a child with no sense of danger wandering by themselves.  Smart911 allows you to share vital info with first responders without you having to verbally relay this info, thus saving precious time in the search for your loved one.

I had these stickers made for our front door, the boy's window and both sides of our van window.  This is mostly to warn first responders in case of an emergency that there are special children involved that need special care. I know that in the event of a fire it's unlikely Beans would try to leave the house, or respond to a firefighter coming to rescue him.  It's likely Bubby would, but then would not think to alert anyone that his brother is still inside. The stickers were only like $5.00.  

My mother in law made this shirt for Beans.  It's a good idea for when you might be going out to the zoo, or somewhere where he mat get lost in the crowd.  Though, the print came off after a couple of washings.  I'm thinking that if one was to get these made it would be best to go to a professional.