Social withdrawal was our first indicator that something had changed.  We also noticed other concerns during her teenage years.  Once a very sociable and energetic little girl, she no longer wanted to hang out with us as a family to watch movies or play games.  When forced to watch a movie with us...she would stay for a little while, and then slowly slip away unnoticed back to her bedroom.  Her bedroom became her safe zone, and that is where she wanted to spend most of her time....at first she would spend her time reading books (over and over again) and then later, when she got a phone, most of her time was spent on her phone reading and going through the different social media platforms.  We had actually gotten her a phone, hoping that it would help her to interact with her friends more often through texting and video chat...but we soon realized that this was not going to be what she used her phone for.  Her time spent on social media platforms wasn't spent interacting with others, but rather researching all sorts of topics that she found fascinating.  

 

Our next indicator was when we started to notice that she didn't really pick up on social cues around her.  She didn't notice when she was in someone's way and needed to move, and didn't understand that things that she said around her brother to get a laugh, would not be interpreted as funny by her teachers when included in an assignment.  

 

Those were the things we noticed when we finally began this journey of discovery around autism.  

But....looking back, there are SOOOO many moments throughout her childhood that now seem so obvious that I can't believe we didn't notice earlier.  

 

Unusual fears

• being afraid of Gargamel from the Smurfs at the age of 8 years old. 
• Loving the slides at the McDonald's play land....and then all the sudden one day having a huge crying fit at the top of the slide....and then not going on another slide for a year and a half.  (I especially loved that I had to crawl through all the tubes to get her down....while I was pregnant!)

 

Unusual eating habits

• having a very small variety of food that she likes to eat (mostly cheese for the longest time)
• Only liking food plain
• having her uneaten food presented to her for the next meal...and still refusing to eat it.  Being so stubborn in her refusal that she would rather go a whole day without eating that eat what was on her plate).
• having unusual gag reflexes to food....we tried to have her try a bite of mashed potatoes, and almost instantly she gagged and it all came back up.
• We asked the doctor about our concerns with her eating, as we were afraid that she wasn't getting all the nutrients she needed.  Once again, this was another missed chance at getting help.  
• We now know that these reactions to different types of food are actually a sensory response to the taste or texture of the food.  

 

Unexpected reactions to pain

• She broke her arm twice.  
  • The first time she was skiing and we walked over to the ski patrol.  She became so upset and hysterical  that she started panicking and they had to give her oxygen.  
  • The second time was at school, when she fell from a tree, doing something she wasn't supposed to be doing.  She was afraid of getting in trouble, so this time she remained calm and didn't even tell a teacher.  When I went to pick her up she was calmly reading a book in the nurse's office like nothing had happened.  
  • Getting flu shots every year with no issues....and then in 3rd grade being so afraid of getting the shot that she hid in the room and it took 3 of us to get the job done.  
  • It is quite common for people with autism to have unexpected reactions to pain and temperature regulation.

 

Tics and repetitive behaviors

• starting in about 3rd grade we started noticed tics.  
  • twitches in her neck
  • repetitive movements with her hands
  • vocal clicks.  
• We asked the doctor about these as we were concerned about possible tourette syndrome.  Once again, the doctor did not notice this as a sign of autism. 
• We now know this was called "stimming" and it helps people with autism to calm and regulate themselves in different situations.   
• Now that she feels she can be herself, we see this A LOT at home!  
  • leg shaking
  • pacing of the room
  • rocking

 

Issues with personal hygiene

• more than your average teenage struggle with things like...
  • dental care
  • hair care
  • etc....

 

Trouble regulating emotions

• Being perfectly well behaved in school settings...and then BLOWING UP at home.  
• An anger that was so intense we were afraid she would hurt her siblings, by accident.  (We now know that this was a reaction to sensory overload....as her sister is quite bubbly and energetic....and can be a lot for anyone to handle).  :)
• Getting overly emotional when something goes wrong, with a reaction that does not match the situation

 

These are all things that I wish I had noticed earlier in her childhood years, so that we could have better understood how to help her.  But, you can't change the past....and you can't beat yourself up for things you didn't know.  When you know better....then you do better.  So now we know, and we are adding the necessary supports to help guide her journey, while still letting her spread her wings and make her own path in this world.  

 

She really is a marvelous human being, with so many wonderful traits.  I can't wait to see the amazing things she does in her future, once she finds the path she's meant to be on!  We all have a path to walk in life.....and this is her path.  And now I understand, that the path I was meant to walk, is right in front of me...being a supportive and loving mom, to this wonderfully unique and beautiful daughter of mine.  I feel blessed to have been chosen to be her mom.  :)