Homegrown ABA Therapy

This week I bought my husband a new-to-us car.  (by the way, big deal, this is the first car I’ve ever purchased on my own.  I’ve always had someone else around to test drive and negotiate for me)  When I took it out to drive it, the owner came with me.  We got stuck at a light that was broken for a *very* long time.  I told him that we were frequently in that area and he asked why.  Here’s how the introduction to the conversation went down:

“oh yeah?  Why are you down here so much?”

“well, my daughter goes to ACI over there.  We come down a couple times per week.”  (the autism center she goes to for play therapy)

“Oh, so your daughter is autistic?  I have a friend whose son has autism.”

“well, she and I both are autistic, yes.”

blinking “what?  You?  How??”

Hahaha, I was pretty nervous at this point, but it occurred to me that I had an option.  I could help him understand that autism may not be what he thinks it is or I could get offended at his ignorance and clam up.  Ever the activist, I pointed the conversation towards how lots of autistic girls can be so adept at blending and how so many of our issues bubble below the surface.  We talked about hiding anxiety and learning not to stim in ways that people find odd.  We talked about societal norms and how the struggle is very real, even if it doesn’t “seem” that way to the outside observer.  We even discussed my experience with what I jokingly now call “Homegrown ABA Therapy.”  (I told you we were at that light a long time!)

At the end he was as excited as I am about my daughter’s service dog and her strengths and I could tell he was still unsure, but his mind had been opened to the possibility that autism is maybe not what he thought it looked like.  It made me much happier to buy that little convertible from him, too.  So, note to autistics: if you choose to disclose, be kind and patient.  Note to neurotypicals: if an autistic person lets you into their world, listen and be ready to have your perspective shift. 

Now onto what the heck is Homegrown ABA Therapy?  I think it can take all kinds of shapes, but it’s anything that helps us build our perception of “normalcy” to the outside world.  For me it was being a pageant kid.  I was in dance classes and pageants from the time I could walk.  I learned how to walk, how to smile, how to talk, how to move, how to impress people, what seemed “weird” and how to hide the weird.  I learned how to appear confident and how to talk over the butterflies.  As a result, I’ve always been pretty good at masking most things and can even be more “functional” than some neurotypicals in certain ways. 

Being that outgoing and putting on that much of a show does take it’s toll, however.  I do need frequent breaks from being around people and when I crash I crash HARD.  I struggle to maintain that level of composure with my family (I feel like I shouldn’t be fake with them) and then am wracked with guilt that I treat strangers “better” than I treat my own kids.  I also struggle with knowing people for years sometimes and then letting down my guard (or dropping it, because I can’t hold it up anymore) and then them thinking I’m completely jacked up and they never really knew me at all.

One thing Violet has on me?  I won’t make her hold up that face.  I want her to have *real* confidence in who she is.  I struggle with these lessons because I haven’t even learned them myself, but so far she is far more sure of her strengths and weaknesses than I was. We’ll just keep parenting with intuition and learning WHO our kids are and what they need and hope for the best.  Just like my parents did.

Why May 1st?

So I promised a post about *why* we chose May 1 as opening day for Autistic Women’s Collective.  When Jen, Silver and I “sat down” (read: opened a group chat, haha) and discussed logistics, we decided April would be our prep time and that May would be a good time to officially open the community.  Jen asked for possible dates and I piped in with “May 1 is Violet’s birthday.”  Thus, May 1st became the day AWC would open its doors to you!

But wait; who is Violet?

Violet is my youngest daughter.  Violet has a very special story I’d like to share. 

When my husband and I decided to try for our 2nd child together, we got pregnant within a few months and miscarried.  We were devastated, but ended up pregnant again just 19 days later.  From early on in that pregnancy we knew that our child was “different.”  (I would like to point out that at the time, I was ignorant about many things that I’m well researched on now.  I’d like you to take a few things I say in the next paragraphs as experiences that shaped who we are and have brought us to this understanding we have now)  I had a very strong notion that I was not supposed to immunize this child, despite the fact that our older 2 were fully immunized.  I nervously had the discussion with my husband, who agreed that he had the same anxiety over the subject.  At that point the word ‘autism’ was forming itself in our minds.  Since the rates of diagnosis at that time were 5:1 favoring boys, we were pretty sure that our child was going to be a boy.

Approximately 15 weeks later we found out, to our surprise, that our child would be a 3rd daughter!  At this point I rather threw the idea of autism out the window and forgot about my concerns, though we decided to delay her immunizations.  The rest of my pregnancy was my easiest.  She was a calm baby in utero and loved music, especially Dave Matthews Band!  She was very sensitive to light and sound and would respond to outside stimuli in the most loving, understanding way.  We decided to name her Violet after the oldest sibling in A Series of Unfortunate Events-a book series very dear to our hearts-because we knew she would be cunning and resourceful and lovely and a warrior spirit. 

Violet was born at a birth center a week late.  She came into this world suddenly and quickly.  She has been the same ever since…quiet and contemplative until she is absolutely ready to do something.  Then it’s getting done RIGHT.NOW. 

Violet was the calmest baby I have ever met in my life.  She was snuggly and joyful.  She smiled at everything and everyone.  She loved to be warm and cuddled against someone, even in our 100+ degree Texas heat.  She communicated with her entire body and all her soul, it seemed.  She took particular interest in watching my husband work, I always joked with him that if anyone helped him restore cars, it would be Violet. 

As Violet grew and became mobile, she was constantly into things.  She was also *very* quiet about it, so often she pulled off toddler heists without our knowing until it was too late.  She was stubborn and would only do something asked of her if we made it seem like she was helping in some way.  Again, we joked that she was like my husband, who we liken to the “secret squirrel” and we just parented her differently and accordingly.  She flourished.

Her younger brother came into the world when she was only 17 months old and they have been fast friends ever since.  It was around that age she attended her first program outside of home.  She was one of only 2 girls in a class of 11 and the youngest in the room, to boot.  Despite that, she systematically “beat up” every boy in the class and was often off playing by herself. 

We took her for her first immunizations at 26 months and afterwards she had large welts on her legs at the injection sites for 6 weeks, accompanied by fevers on and off and general crankiness as well as regression in her language and communication.  Our previously calm child began being more and more aggressive and “screamy.”  We saw that happen 4 times over the course of a year before we decided to lay off.  We have since determined that Violet is very sensitive to toxins, like her mommy.

We lost our 5th pregnancy the summer after Violet turned 3 and decided to never have another birth child.  We did, however, decide a year later we would try to adopt.  When we attended a weekend long seminar on parenting “children from hard places” we realized that Violet fit many of the descriptors in Sensory Processing Disorder.  By this point, we had heard from numerous friends that Violet was a “difficult” child, but we pressed on, always parenting her according to her unique needs and succeeding well enough to feel that we didn’t need any outside help. (We strongly suggest The Connected Child by Dr Karyn Purvis to ANY parent, but especially parents of adopted, traumatized or ASC children)

Between June 2012 and May 2013, our pediatrician referred us to the local autism clinic not once, not twice, but FOUR times.  Each time I secretly flipped her off for being a jerk after what was always a harrowing visit with 2 toddlers in tow.  I really did not understand why she would try to refer us there.

It was spring of 2013 when a friend of mine suggested I watch “The Lady who Thinks Like a Cow” and I watched Temple Grandin’s account of her life in wonder as I recounted trait after trait that described Violet to a “T.”  My friend and I discussed it, but being as Violet was still thriving under our wing, we let our suspicions pass. 

One day, as my husband was looking through old pictures and videos, he called me to the computer.  He showed me a picture of Violet at each of her birthday’s until that point (we were nearly about to celebrate her 5th) and when he flipped back to her first birthday he said, “look how much more alert she was…look how much more engaged…”  My husband is very reluctant to label anything, so I took his suggestion to heart and we began researching autism ad nauseum.  Part of our reluctance to come to the idea was that she didn’t fit what we saw as autism.  She was nothing like what we had heard through the media!  She showed us all great love and she was so smart and funny! How could she possibly be autistic?  Still, we could no longer ignore the signs.

That summer our family moved to Upstate New York and we enrolled our girls in a summer program there.  While enrolled, Violet did not get along with the kids her age.  She made exactly 1 friend, who was a disabled boy.  The other kids would hit her or shove her away.  She repeatedly snuck away from the group and frightened the leaders.  She didn’t want to participate in the programs with the other children. When they would go to the beach, Violet would walk further and further into the water, up to her nose, even though she couldn’t swim.  With all of this in mind, we watched her on a playground one day and saw that she played solely with her brother and sister.  When they would find another friend to play with, Violet would play by herself, or get aggressive with her siblings.  It was then we decided to make that call to the autism center.  We knew we didn’t have the tools in our toolbox to help her overcome this.

We first talked with Dr Lisa in September 2013, but couldn’t have an appointment until November when we moved back.  During that time I wrote down Violet’s every “odd” behavior and researched the heck out of childhood autism.  In November of 2013 she was given an official diagnosis of PDD-NOS with Sensory Integration Disorder.

Boy have our lives and perceptions changed because of this child!  In 6 short months our eyes have opened more than we could have ever dreamed.  After determining that I probably couldn’t see how “difficult” she was because I understand her on a very deep level and reading loads of books and blogs by adult autists, I got my own diagnosis in February of 2014 and the rest is very recent history.   Sometimes I blink and wonder how we got to this point from where we started, but most of the time I just *know* that I felt it in my bones from the time of her conception-that this was going to be our destiny together.

On May 1st, Violet will be 6 years old.  I believe nothing better could mark the day of her birth-the day she began changing the wide world she dwells in-than to open a groundbreaking sisterhood for Autistic women and mothers of Autistic girls.

And so now I tell you, (again.  This is my special interest, after all! ha!) what my goal is with AWC.  My short-term goal is for women on the spectrum to find a safe place to discover who they are in sisterhood.  My medium-term goal is to see mothers of girls on the spectrum raise daughters that aren’t riddled with the self-doubt so many of us have experienced.  My long-term goal is to see the world drastically changed for my girl.  A world where she is accepted and appreciated for who she is and what she has to offer.  Her gifts are unique and important.  She will also need some accommodation.  She’s been lucky to have a mom and dad who parented with intuition, but many in the world are not intuitive about autism…yet.  My goal is to see it become so; for me, for Violet, and for every woman and girl like us! 

I hope you will join us!

When the Default is to Shut Down

I have recently had the privilege of making some friends.  It’s been so long since I’ve had a “real-life” friend.  Every time I’m getting to know someone I feel excited and a little hesitant, insecure about the responses people have had to me in the past.  Currently I also wonder *why* I should bother making friends when our lives are so busy right now and we’ll just be leaving in a few months?  And then there’s the social fear, knowing that spending an afternoon or evening with a friend will be lovely, but leave me exhausted.  Much of this is silly to outside people, because overall I seem to be a very likeable, sociable person, if a bit passionate and quirky. 

People sometimes think that because social interactions drain me, that must mean I don’t really love the person I’m interacting with.  I’m going to tell you that the opposite is true.  Because social interactions exhaust me (and yes, unfortunately, this includes interactions with my family) if I choose to spend my energy on being with you, I *really* love and care for you.  Conversely, if I am not spending time with you, it may mean I have no energy to give at that moment.  I find myself more in the latter realm these days, with all of my spare energy going to my children and then some.

I find that as years go by, my default is to shut down any acquisition of new friends.  I have wondered if I’m just getting “more autistic” (as if there were such a thing) but I have come to realize that the reason for this shutdown is this: last week I spent an afternoon with a new friend.  It was so nice, but it was exhausting.  The next day I took another new friend to ice cream and it meant so much to me to simply have other human beings surrounding me and laughing and sharing their lives with me.  Connection is in our DNA.  We all need it to some extent or another.  But reawakening my heart to having friends to share life experiences with leaves me feeling *very* lonely the rest of the time.  I feel so deeply sad when the excitement of the time together is over and I settle into my apartment-alone.  The exhaustion hits and I wonder if I should even reach out at all.  Sure it was nice, but my heart will only end up broken.

It was different when my husband was home, but I still found myself suffering a rebound of sorts after spending time out with friends.  People talk about being rejuvenated by “girls’ night out,” but I simply don’t understand what that feels like.  He padded the crash because I wasn’t really alone, but I still experienced it.

The good news is, for a long time I just thought there was something devastatingly wrong with me.  Now I understand that social situations do not necessarily come easily to me because I have to “play the game.”  The game is constantly thinking of how to say something so that the other party will understand you, or trying to keep your hands still so that you don’t look like a complete freak, or trying to interpret what the other person meant by that phrase just before they laughed…the game is not revealing too much, too early (I fail at this game most of the time) or prying too much as to seem creepy, or tempering your reaction to make sure it matches the emotion of the conversation.

The game is not calling friendship a “game” because even though I understand that wording and so do most of the autistic women I’ve met, it seems that neurotypical people think that means you’re not being genuine and then they get upset.  (I learned this by trying to explain to my husband how hard it is for me to speak sometimes.  Turns out husbands don’t like to hear that you play “games” to be able to interact with them or your children.  Sorry, honey, I promise I didn’t mean that the way it sounded!)

I used to think everyone does this, that everyone has an inner monologue constantly playing phrases like, “you already used that word 3x, you’d better find another one to describe what you’re trying to say.” “She is very sad about this, and even though it doesn’t seem very important to you, you should show her sympathy and ask a question.”  “he seems stand-offish, it could be because your arms are crossed.  Uncross them and see if he seems more receptive to you.” etc.  Now I know that most people find interacting socially no big deal and that there is a component here missing for a lot of autistics…we just don’t quite “get” the unspoken social rules.  I’d also like to point out here, that this is one big difference in male and female autism and part of the reason we girls/women don’t get diagnosed as we should, because we are naturally more social creatures and learn to “mimic” the social behaviors of others in order to fit in.  Oh, we are so very clever, aren’t we?

I’m not sure what the answer is to this, or if there even is a solution.  But I do know that I was created to connect and that the good feelings outweigh the bad (until the bad hits…haha) so I’ll keep reaching out and trying.  I do hope, though, that this post will help someone think about their relationship with autistics in a slightly different light.  Trust me-if we give you our little bit of energy and brain function, we love you.  Don’t give up on us if we simply can’t always say yes to an outing.  We still need you, but we may be all tapped out for the time being or needing to save our brain power for something upcoming.  If we say something silly or offensive, please ask for clarification and forgive.  But also, take us at face value.  If we tell you we are “playing a game,” it’s not likely because we’re toying with your brain, trying to manipulate you, but because we simply see life as a game that must be played according to a set of rules and we have to be in constant thought of what those rules are if we want to be understood/heard/loved.  We also live with the knowledge that we don’t know all the rules and that sometimes people change the rules on us or interpret the rules differently. 

And remember-no one WANTS the default to be to shut down.

The Importance of Sisterhood in ASC

First, let me clarify what ASC stands for: Autism Spectrum Condition.  I woke up the day after my unofficial diagnosis and felt all at once elated and incredibly angry.  The thought that spurred the elation was being a really fabulous Autist instead of a failed neurotypical.  The thought that spurred anger was “Autism Spectrum Disorder.”  For once in my life I feel like I don’t have a darned thing wrong with me (that doesn’t mean there are no struggles) and yet I have a “disorder.”  That same day I saw a speech by Simon Baron Cohen that discussed the benefits of calling it ASC instead of ASD.  I like it.  I’m running with it.

Then we get to the sisterhood part…almost immediately after my diagnosis I read Jen’s blog over at Wild Sister about coming out of the Autism closet.  In that post, Jen said, “I really want to connect with fellow Aspies. Also, if you know of any awesome resources, books, communities, events, or peeps involved in the Aspergers or Autism Spectrum world, send ‘em my way.”  So I took her advice and I reached out, telling her how thankful I was for her post, her openness and that I’d love to be one of her peeps.  As we talked more, we discussed the great NEED for a “safe place” for Autistic women to be educated, empowered and heard.  Over a short time we came to decide that we could fill that need with an Autistic Women’s Collective.  We joined hands with one more super strong, amazing woman named Silver, entrepreneur extraordinaire and this collective is coming to life.

The importance of all this is that we are made for connection.  I can tell you from experience that when an Aspergirl wanders through life without a sisterhood, it is a lonely life.  I can look back and see a multitude of ways that my family and friends helped me become who I am today, but I know with a sisterhood of girls/women who “got it” I could be so much more authentically and unapologetically ME.  How many other Autistic women and girls are out there just struggling to stay afloat?  How many others wonder what on earth is wrong with them?  It’s time for that to come to an end.  In this age of internet connectivity and information, there’s no reason for people to feel so alone or so unsure.  It’s time we came together and built a community safe for all of us to discover our bests and be encouraged.  We also need a place where we can discuss our struggles and frustrations, because a lot of times it seems people just don’t take us very seriously.  We deeply desire to be great daughters, sisters, friends, employees, girlfriends, wives, mothers, entrepreneurs, etc but sometimes that means we need special accommodations.  A community by us, for us will be able to put all these amazing minds together and make us better able to reach these goals despite our struggles.

In case I’ve rambled on and lost you on the point…I will give a personal example.  Last night a new, dear friend came over.  We are getting to know each other because she knows I’ve been willing to become a voice in the wilderness for the female Autistic community.  She and I laughed and talked about our quirks and “stimmed” in front of each other and giggled over apologies that weren’t necessary, because we were speaking the same language.  This morning I was a happier, more secure person.  I was a better mom with more patience and love.  Did we talk about anything life-changing?  no.  Did she call me out on the carpet for my recent bout of depression?  no.  We simply HEARD each other and sometimes, being heard, seen and *known* is all we need.  We autistic women are some of the strongest people you will ever meet, but many of us live in constant guilt or fear because of our past experiences with people.  I believe that when we take the time to build the confidence and knowledge of Autistic women, we will see world changers born.  Even better will be if we can capture the moms of girls on the spectrum while they are young, so they never have to develop the debilitating guilt so many of us are familliar with!

So with pride and excitement and complete and total humility, I introduce you to the Autistic Women’s Collective.  Our community will open on May 1st (I’ll write more on that date later!) We’d love to have you with us!  Check out the link and get signed up to recieve updates.  And while you’re at it, leave a note in the comments about what you think would most help you in a community like this?  What do you think you would most benefit from?

https://www.facebook.com/events/492811344164240/ (this is the event page for the grand opening)

See the link for Autistic Women’s Collective above for the press release to sign up for the newsletters and up-to-the-minute updates on progress and opening!  And thanks so much for being here/there!

We are Brave. We are Strong.

If you are autistic, I would like to tell you, YOU ARE BRAVE.  YOU ARE STRONG.

If you have a loved one who is autistic, I would like to tell you; That person is brave.  That person is strong.  

I am going to speak in some generalized statements-paint some pictures with a broad brush, if you will, because I feel this needs highlighting.  However, I would like you to keep in mind that autism is a spectrum and not everyone will feel the way I do.  Autists-it’s okay if you don’t feel the way I’m going to describe.  Loved ones, your Autist may not feel this way, so I encourage you to start a dialogue with that person (in whatever way that person communicates…communication is not always speech, folks!  you are reading this, correct?) and see how they DO feel.

As an autistic person, I walk around a world that was not made for me.  I live in a society that was built for neurotypical people.  This world, this society, they scream at me all the time.  I hear it telling me I am not fast enough, not smart enough, not good enough.  This man-made world offends every one of my senses on a very regular basis.  Very possibly because of my differences, I was targeted and abused, so now the world screams louder and it also whispers the most terrifying thing of all, “you are not safe.  you never have been, you never will be.”  But everyday I wake up and I put on my brave face and I walk out that door because my loved ones need me to and I deserve a hero and sometimes I’m the only one who can be that hero.  We are brave.  We are strong.

These days and this world are a conglomeration of smells, sounds, sights that conjure emotions, both good and bad.  They invade my brain and demand attention.  Something smells good and it alleviates stress, something smells off and it can destroy a day with the memory it is tied to, playing like a horror film in my mind on repeat.  Something sounds pleasant and it draws me in, making me feel light and joyful.  I may laugh out loud or dance in public for the joy.  Something sounds harsh and it can cause me to curl inside myself, if not outside, as it squeezes my brain and looks like violence in my mind’s eye.  Things that are pleasant to the eye cause me to stare and drift away from myself, but a mere pattern woven into a rug being off can disturb me and cause angry music to play in my mind and upset my carefully crafted balance.  The worst part is not the experiencing this-the worst part is knowing the world hates it about us and thinks we’re “dramatic” or “crazy” or “throwing a fit.”  But we are us and we can hardly be anyone else, though we often try.  We are brave.  We are strong.

These things alone could cause us to be very tired after a day out in the wide world, but I haven’t gotten to the hardest part.  People.  The inhabitants of this strange land who are all at once offensive and beautiful.  They are infuriating and mysteriously intriguing.  They have so much power and yet they rarely recognize a speck of it.  Do they not see that they can create life or incite death with their very gaze?  Even moreso with their words?  They understand action-action is direct, it is distinct, it is sudden and telling.  But we struggle with action.  Our body language doesn’t match our words.  Sometimes we Autists make sudden movements that neurotypical people see as threatening, when we are rarely even registering the move we just made.  We sometimes melt down.  We flee when we so badly want to stay.  Or we stay when we so badly need to flee.  No, words are how most of us are better able to explain ourselves, (not always spoken) but it seems we are speaking a foreign language.  Many times I will believe I have spoken and been understood, only to find out later (devastatingly) that the person greatly misinterpreted what I had said.  More often than that, I will not understand what someone is trying to tell me and they seem to lack the ability to explain the subject in other ways.  Or my words come out jumbled and I can feel the other person staring, waiting for a coherent thought and counting the moments that are being wasted.  All these struggles to communicate and yet we talk…because we are brave.  We are strong.

Neurotypicals, regular people, earthlings, whatever you prefer to be called: many of these things are relatable because they are human conditions.  We all experience overstimulation and loneliness and an inability to communicate from time to time.  So keep that in mind when you are dealing with your beautiful soul.  Your autistic loved one.  We are not as mysterious as we sometimes seem. 

But you also need to understand that a big part of the difference between being neurotypical and autistic is in the severity of these things.  You may smell something that reminds you of a bad experience, but does it send you into a complete panic for the rest of the day, cause you to lie awake at night and replay that experience over and over again?  Do you frequently wish you could just “get over it?”  Do you tell yourself that you’re crazy and try to run away from everything that makes you human?  Do you tell yourself that the wholewideworldissickofyourbellyachingsojustshutthefuckupalready?  Do you hide the emotion from other people because you’re pretty sure they will tell you that’s ridiculous-because you’ve heard that before?  We experience these things constantly and still try to connect.  We are brave.  We are strong.

You might think we wish these hypersensitivities would go away, but you would be wrong.  What we really wish is that people would accept and accommodate these hypersensitivities and appreciate our strengths.  We wish that more people would be patient when they are talking to customers or patients.  We wish that people would think before they speak, even if it means there is a pause.  We wish that you could see that our lives are not a living hell until we learn that the people we love believe they must be.  Or worse-that they think we are completely normal and then hold us to that same standard.  We are set up for failure every day and we keep trying.  Because we are brave.  We are strong.

This is a very brief post.  It contains some broad generalizations and it doesn’t cover nearly a quarter of what any Autistic person experiences in a given hour of a given day. My prayer and my hope for the future of this world is that our quiet, misinterpreted voices will soon be so many that more and more neurotypicals take notice and that together we can change the world to be a little friendlier to people who are neurodiverse.  That we can raise the future generation to accept and love the differences we all offer.  We will keep speaking and praying and creating that world and day.  We are brave.  We are strong.

 

 

Body Language

Monday our downstairs neighbor came up and spent 15 minutes at our door telling me that the children are too loud.  She said it all with a smile on her face and a friendly voice.  Here are some key points she made:

1. her dad is disabled and near irate and she didn’t want him to have to come up here

2. they know I don’t have a man in the house (my husband is deployed)

3. it sounds like cirque du soleil up here

4. I don’t have control of my kids

5. they have heard loud noises up here during school hours

6. I have an inordinate amount of children

I stood there listening to her complaint, with my ASD daughter by my side and my NT son playing in the background.  He was doing a little tap dance typical to 4-year-old boys on spring break and she pointed into the house and said, “see that right there?  See what he is doing?  That’s crazy!”  On the contrary, I am sensitive to noise and vibrations and he wasn’t doing anything out of the normal scope of a child. 

Occasionally I would try to defend myself and the children by saying something like, “it’s spring break.”  “They’re children.”  “I don’t allow them to run or jump in the apartment” but I was immediately cut off as the complaint continued.  When I explained to her that we are usually all gone during the week, she said that couldn’t possibly be true because they hear noises during the waking hours. 

When she finally left, I was irritated, embarrassed, exhausted…but what blew me away is when I sat down to talk it through with someone she said, “she threatened you.  Call the manager now.”  I had to get her to explain to me what the threat was, because I just wasn’t comprehending it.

1. she was digging for info on whether I had a husband or boyfriend around

2. she was telling me how mad her dad was and that he was ready to come up here (to do what??) and she was protecting me…but she doesn’t live there.

Wow…I was blown away that I hadn’t caught that and I wondered why, but I called the office, who also thought the interaction was a really big deal.  They assured me that they would tell the downstairs neighbors never to approach us with complaints again and apologized.  I was still a little confused, but at this point 3 people had agreed it was a scary situation.  I was more than a little perplexed as to why I didn’t see it that way.

Later that night we were sitting down to dinner and the children were buzzing about the woman confronting me.  Our spectrum daughter spoke up and said, “That lady was really nice.”  I replied that, no, she was NOT being nice, she was mad at them but my girl argued quite vehemently with me that the woman was very nice. 

Then it clicked.

Body Language.  Tone of Voice.  Our autistic brains saw nothing very wrong with the interaction because her voice remained calm and kind, and the words were put in such a way as to infer threat, but not actually threaten.  Inherently I knew *something* was wrong, but I couldn’t quite put my finger on it because it was masked with nice sounding speech. 

Autistic people have a tendency to not understand intonation or body language.  This is why a lot of people on the spectrum don’t “get” sarcasm.  (I have a post for that on another day) It’s also why no matter what someone is saying, if they say it in an angry tone of voice, or with exaggerated movements, it is scary and threatening to my daughter and I.

In a way this frightens me.  How often are we in danger we do not percieve?  Is this why rape statistics for autistic women are so startlingly high?  Is this why I’ve managed to make my own rape story “my fault?”  It seems that this tendency leads us to lose our “voice.”

In another way I feel like this keeps us out of a lot of trouble, because we seem “harmless” to people.

And in yet another way I am really grateful to learn this now, because clearly this is an area we need to be “smarter” in, so to speak.  Now to work on learning how to judge what someone is saying without actually saying it. 

this.

sounds.

exhausting.

I “get” Autistic Kids

While I was still pregnant with our youngest daughter, we knew she was “different.”  We knew she would be highly sensitive to chemicals and suspected possible autism.  I’m sure that sounds strange to a lot of people, but I’ve always been pretty in-tune with my babies in-utero.  She was highly sensitive to sound and very particular about music, swaying about whenever Dave Matthews Band was playing in a grocery store or restaurant.  Despite being 2 weeks late, her pregnancy is the one I remember with the most fondness and calm.

After she was born, she was the most cuddly, quiet, calm child I had ever met.  She loved to be outside, the warmer the better.  She was quite content to sit on the porch with me in 104 degree Texas weather.  My mother-in-law said many times that she had “no personality” but my husband and I knew her personality.  She was affectionate, happy and most of all, completely tuned in to everything around her.  I was incredibly bonded with her, and when people would wonder what she was listening to or looking at, I always knew.

As she grew, she became the child that people thought of as frustrating.  She would not do anything except of her own volition and was particular about anything having to do with her sensitive senses.  My husband and I just learned to parent her differently, and I found her to be very agreeable for the most part, and easy to get through to, even though others felt much differently about her.

Don’t get me wrong, we have our issues.  Anytime you live with someone full time they can get on your nerves.

But all of her short years on this earth, I have connected with her on a level I don’t connect with many other people.  This is not to say I love her more or that she’s more special, just that I can understand her very clearly even when she is not able to speak, as if we are linked. 

Still, we could not ignore the growing evidence that she couldn’t quite function in the world outside of our home as she approached school age.  A summer program for children is what finally sent us to the child psychologist because despite our different tecniques, we didn’t feel we had the tools to help her learn to fit in with her peers.  The rest is history now, they diagnosed her PDD-NOS with SID (mildly autistic with sensory issues) and she’s been going to group therapies that seem to help her build confidence in herself. 

Despite the diagnosis and what it said about her, I still marveled that overall, she is my easiest child. 

I must admit that at first I was a little afraid of autism.  Like everyone else in our society, I had heard ugly things about “those people” and I wasn’t sure I wanted our girl lumped with them.  I balked a bit at the therapy and wondered if she would pick up “bad habits” from the other autistic children who may be more severely impaired than she is.  My fears were laid to rest in 2 ways.  The first was that God showed me that He made her brain exactly the way He intended to and that not one piece of her was an accident-which means neither was any other autistic person.  The second was when I attended a parent training at the therapy school she attends and discovered while I was watching all these beautiful Autistic children that they are AMAZING and I had never been so “at home” with a group of children (or people) who weren’t my own family.

How does this relate to my diagnosis?  As we settled into our new normal and I found myself with a few extra hours per week, I began to research adult autistics, knowing that she would one day be one and wondering what I needed to help her prepare for. As I read blog after blog I realized that the words I was reading were straight from my own heart.  Page after page I saw myself in the writing and suddenly pieces of my past began to make so much sense in light of the idea I might actually be “part” autistic myself.  I began taking online quizzes and scoring borderline.  It made sense to me, she has half of my genetics, after all, but something still seemed amiss.

I don’t know how or when it came down to, “this fits me to a T” but I know I had pretty much figured it out by the time I took the rdos.org “Aspie quiz.”  On that quiz I scored a 179 out of 200 for Aspieness.  I was 55 out of 200 for neurotypical.  After that, I decided to see a therapist who declared me “pretty Aspie.”  I trust her judgment, given she’s also has Aspergers. 

And now I’m on this new road.  Rediscovering who I am and realizing my deep connection with Autists.  It feels good, knowing that instead of a failed neurotypical I am a really fabulous Aspie. 

Hearing Issues

When I was a kid, I had “trouble” hearing.  The trouble was, I knew I didn’t really have a problem with my ears, I could hear just fine.  The real issue was that I needed to give my mind a minute to process.  It was like I had to wait for my brain to translate what my ears had just heard.  This resulted in a delayed response to people or worse, ended with me getting distracted or asked the same thing a second time and then having to say “what?” all the time.  About 75% of the time, after I asked “what?” I realized what they had said before they had a chance to say it again.

I had a few hearing tests, and they never detected anything was amiss.  By the time I was 12, I had gotten people irritated with my “what??” enough times that I developed a hypothesis.  I told people I had “bad ears” because I had so many ear infections as a baby.

In fact, I did have a lot of ear infections when I was little, so many that I had tubes in my ears a couple of times.  But it did not lead to hearing loss, as evidenced by the hearing tests.

This is still a problem as an adult (taking a few seconds for my mind to process what my ears have heard) but I have learned other ways to compensate.  My saving grace came when we moved to Texas and everyone I spoke with begged me to “slow down.”  I have, in fact, slowed my speech down, (though I can still get ramped up!) and now there are often long pauses in my conversations with other people.

I recently realized this is due to the autism.  I can pick out a song by a few notes.  I can tell what a noise is by hearing a very short clip, I tend to have sensitive ears, but when it comes to people speaking, it takes me a moment to process what they’ve said.  It’s called Delayed Audio Processing.  I find that the delay is not as significant if I’m not looking at the person’s face who is speaking.

While this has been a very annoying deficit over the years, it has had an up-side.  I am an excellent note-taker.  Since my brain is tracking several seconds behind the speaker anyway, I can repeat the information on paper nearly verbatim and not lose the place in the lecture.  Since I seem to learn best through *seeing* the written information, this is a very helpful adaptation/skill.

And more pieces of the puzzle are found as I move the furntiture around…

Overstimulated

Today was a long day.  We didn’t actually start it until almost noon, but I knew when we pulled into the Target parking lot that I was asking for trouble if we actually went in.  I was feeling very overloaded already, but we needed some things.  We didn’t have a terrible time, but I was definitely distracted, tired and ready to leave by the time we made it out. 

It was an absolutely gorgeous day and I was not wanting to miss it.  The kids were really wanting to be out and about, too.  Again, I knew I was doing too much, but this evening we went out to eat at one of our favorite places.  While we were there, I found myself snappy.  Then they brought out our pizzas.

See, I have to order gluten-free pizzas for the youngest kids and tonight they brought out more pizzas than we had ordered.  They said the extra was on the house.  What a sweet surprise!  But when I opened the box, it was a variety no one in our house would ever eat and it was too covered to pick the toppings off.  I really didn’t want that pizza to go to waste, so we messaged a local friend who also eats gluten-free…

And then we took the pizza to her.  And I was such a space case and the kids were, well…kids.  And I was all at once wanting to flee their nice home and sit there in the chair all night because of the exhaustion.  I have no idea if we overstayed our welcome, I really hope not.  I have no idea if I even made coherent conversation, I really hope so. 

Now, sitting here, WISHING these children would just shut up and go to sleep, I am really wishing I had listened to myself, but also glad we got out of the house-for their sakes.  I don’t know what all of this means.  I have always pushed my needs aside for those I love.  The time has come to stop that, but I find I default to old habits.  *sigh*

At least I’m not angry with myself for being so worn out this time.

Disclosure

I am on the fence about disclosure.  I have had to disclose my diagnosis to a few people in the last several days because they’ve seen me (on my personal facebook page) posting things that out me in other conversations.  I am so torn, though.

On the one hand, I am really excited that I now have an answer for all the “weirdness” over the years.  If I have the opportunity to pad the blow my daughter will experience in life with her autism, I am all for it.  If I can be the one the people we care about “teeth on” while they figure out what it means to them that we are autistic, fabulous!  Not to mention I am an activist at heart and always have a cause to fly a banner for.  I am brave, I am loud, I am a little crazy.

But on the other hand, I don’t want people to treat me like I’m stupid.  I don’t want people to see me the way our society tends to see autistics.  I don’t want people to disclose MY diagnosis without my permission, or-even worse-as an excuse for behaviors, opinions or what-have-you that has nothing at all to do with autism!  I am brave, loud and a little crazy, but I’m also sensitive, unsure and little scared.

I know I will openly disclose to anyone who asks, because that is who I am.  I know I will probably pick up this banner and become one of the loudest autism activists you ever heard.  But for now I’m a little nervous-in the words of my daughter.