The Autism Bully

There is a bully in our house.  It's called Autism.  I have been saying this for years, and it's even more true in the teenage years.  Autism causes rigid schedules, and strict guidelines (at least in her mind).  Our autism has a complete set of rules and regulations that everyone in our house must follow, or we get the wrath of a meltdown.   We have adjusted our way of life completely since this autism bully showed up at around 9 years old.  As if life were not hard enough on this child, she also was blessed with "womanhood" at 9 years old.  So, hormones and autism collided and what we had was a huge problem.

First and foremost, this autism bully wants food.  CONSTANTLY.  I am not sure if it's anxiety based, or hormone based or "rule" based, but it's a constant every day.  She will do anything to get what she wants.  Throw things, hit things, and yell constantly until every nerve in my body is worn down.  I have a set eating and snack schedule for her, but some days it's literally every 10 minutes that I am asked for food.  A person can lose their mind when a bully is constantly in your ear begging, yelling and fighting for food.

Second, this autism bully has a schedule.  It's not our schedule, it's not a realistic schedule...it's her schedule.  She has decided when we need to get up in the morning (have not used an alarm clock in 10 years), when we should eat breakfast, and what time we ABSOLUTELY need to be out the door.  If you think I'm exaggerating...you need to stop over.  If we are more than a few minutes off schedule...this bully freaks.  She will yell, and get agitated for a while.  It takes a long time for anxiety settle down.  If Phoebe has a 1/2 day of school, and it starts at 11:00...she gets up at the usual time and frets over what time the bus will come.  Her coat is on at 8, and sometimes she even sits in the driveway waiting.  How dare the school screw with the schedule?  Whoever is here sitting with her...gets the wrath of 100 questions of "When do you think the bus will come", "Who will be here later?” and "When I have a snack?"  This may not sound like bullying, but when the questions come every 3 seconds for 3 hours...you'd understand what I am talking about.

Lastly, the autism bully seeks attention.  Again, this happens at a constant rate.  For someone who does not distinguish very well between positive attention and negative attention, this is exhausting on her family.  About once every 3 days, this child with autism will go in her room and be alone for about 10-15 minutes.  That's it.  Otherwise, she is by me asking questions about schedule, eating, and anything else her mind is mulling over.   I can tell when she is going to seek attention to a disturbing level, and I can tell when she genuinely needs me to sit by her and calm her nerves.

You'd think at some point I'd get used to this bully.  I have been living with her for 13 years, 10 months now, however it never gets any easier.  In fact, it's slightly scary what the future may hold for this bully.  I'm hoping that someday she will have the will to fight it internally.  For now, we will fight it externally, and live with it.

Thinking about Autism

I've written this before, but I'd like to write it again.  We have all been those people...those people, who look at a "different" child and wonder.  I used to do it myself.  You can't help it.  It's simply human nature to wonder why a child would be different than the norm.  What happened to them, and how did it happen?  It's not mean spirited...just shear curiosity about the differences.  The stares get worse as these children get older, and act like they are 5 years old, but look like they are 16.

When I am out with my 13 year old daughter, who is autistic...I see your stares.  I see that you think I'm a bad parent, when she screams that she can't have her 4th snack in 2 hours.  I know what you are thinking.  "That woman can't get control of her child."   You are exactly right.  I have no idea what this child's brain is like.  I don't know how her brain functions.  I can almost ALWAYS predict behaviors, and pre-cursors to those behaviors, but I still have no idea why these things happen.  And, when they do happen...why does it take 2 hours to calm her down?  What happens in her brain?  These are questions I will most likely never be able to answer.  Socialization is the key to her success, so I try to get her out as much as possible.  And, in doing that...meltdowns and behaviors are likely to occur when her world is uncontrolled.  Does this mean I will just let her get away with anything?  Heck no!  She will not have a snack an hour after dinner, or lunch, or breakfast.  I will make her walk on the treadmill, and earn her rewards.  She will not hit her brother for no reason, smack the dog or throw things without consequence.  Just like any other kid.

Long ago, I gave up on the notion of a "normal" daughter.  However, I grasped the concept of a special daughter.  A daughter that is not broken, or in need of fixing.  I don't want to place societal norms on her--just because that's what people want.  She doesn't learn like other kids.  She watches, listens, mimics, and memorizes. She can't write very well, but can change the settings on an iphone in 3 seconds.  I want someone, other than myself, to look at her and say..."wow...she has a special gift."  This child is not stupid, and she can hear your words.  She wants what ever kid wants...to be accepted.  So, go ahead and stare and make your judgements, but if you'd like to know what 1 in 88 children are dealing with - please ask.  I have a little bit of knowledge in the type of autism at our house.  

Our autism is not the same as everyone else's, but I'd be happy to share.  You might just see what an autistic brain is like.  (or at least her autistic brain)

Temple Grandin wrote:

“What would happen if the autism gene was eliminated from the gene pool? You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.” 

I truly believe that.