Monday, October 6, 2014

High-Functioning Autism: Why It's Hard and How the Steeles Roll With It

I've heard it said (and you may have, too), "If you've seen one child with autism, you've seen one child with autism."

The layers of meaning within that one seemingly simple statement have hit me full force in the face multiple times since we received David's diagnosis last spring.  

I had an inkling of an idea of what life might look like, based on the little I knew about autism.

Just an inkling.

Actually, I didn't have a clue.  

The thing is, as David has developed and adapted, with all the therapy, strategies and supports we have worked so hard to put in place for him in the last (almost) 18 months, his autism has, in many ways, become more complicated and challenging.  

It's unreal how that 38 lb., 42" tall, five-year old little boy can dictate the course of our day-to-day lives.  

High-functioning autism. 

It’s tricky stuff. 

The descriptive “high-functioning” is deceiving.  It’s there because his IQ is in the average to above-average range.  He’s a smart little guy.  But the host of challenges beyond his intelligence keep us on our toes around here. 

And that label “high-functioning” can be pretty misleading.

It leads to expectations, which lead to disappointments, which lead to hurt and frustration, which is really hard.

Does Davy function at a very high level for a child with autism?

Yes.

And I am grateful.

Is Davy able to exist and function in most typical environments?

Yes.

And I am grateful.

But Davy continually struggles with...
- sensory processing
- social cues
- gross motor and fine motor delays
- coping skills
- family relationships

And these make living with autism hard for us.

I don’t know how our family compares to other families with children on the spectrum.  From the various books and blogs I’ve read and the friendships I’ve made with other moms and dads with spectrum kiddos, I think we’ve probably got it pretty easy.

But the problem with “easy”… the problem with high-functioning autism… is that, as a parent (or a sister, or a brother, or anyone else close to the child), when things are going well, when your child is acting “normal” (because he often can), you tend to start second-guessing the autism. 

And when you start second-guessing the autism, you get lazy concerning the autism.

Your expectations of the child increase.

Your response to the child’s behavior changes.

Your compassion for the child diminishes.

Your sixth-sense for those little triggers that could trip the autism BOMB is dulled.

And then.  All of a sudden. 

There’s an explosion.  

All.  Over.  You.

And it hurts.  Everyone.

A child with high-functioning autism is STILL a child with autism.

For us, this means that even though we often can walk in and among our community looking quite typical, there are undercurrents of stress, emotion, sacrifice and accommodations running through the make-up of our family at all times.

So this is a bit of what autism looks like in the Steele home…

- The success of any given day is usually assessed by how well we each maneuver our interactions with David. 

- Each “big” person in our house has learned to anticipate triggers that can set David off.  Sudden noises are avoided AT ALL COSTS.  We don’t sit next to him or attempt to engage with him in an activity unless he invites us in (though he often does).  Physical touch is on his terms.  His room is sacred.  Change something at your own risk.

- Structure and routine are of utmost importance.  Sometimes that’s unrealistic in a house of teenagers, but we do our best.

- Our teenagers need us, too.  Mark and I work hard to make time for them.  Most often this happens late at night when David is in bed.  Yes, I’m exhausted at this time… but that’s what coffee is for, right? We have a couple of really great babysitters that know and understand Davy and have worked to build a relationship with him.  We budget so we can take the big kids out on a regular basis, do special things with them, make space to give them the undivided attention they need… and that we want to give them. 

- When things get tense at home (as they often do), we give the big three permission to escape to their rooms… with no guilt.  That’s been a big adjustment for us.  I never liked the idea of my kids shutting themselves away from the activity of the house.  But Davy has changed all that.  And it’s okay. 

- Unfortunately, the big kids often bear the brunt of Davy’s angst.  We try our best to be a good buffer, but it doesn’t always work out.  And because we are often under a good deal of stress, we can get short with one another.  Repentance and forgiveness are a regular practice around here. 

- My big three can walk into a room and, in a moment, assess the atmosphere and what needs to be done (or often more importantly, NOT done).  Autism has taught them this.  I believe this skill will serve them well in life.

- Expressions of affection are invaluable.  When one of us receives a hug from David, we all celebrate.  Quietly, of course.  

- The world does NOT revolve around David.  But often our home does.  No, it’s not fair.  No, it’s not easy.  But, the word “autism” actually means “selfism.”  His brain is literally locked on himself.  Believe me, we are working on this.  He CAN learn, but it takes time and patience.  As he grows and develops, he will learn more about how to make room in his heart and mind for others. 

- David and I (and sometimes Mark or another member of the family) go to five therapy sessions a week.  FIVE.  We are constantly working on all the challenges that come with high-functioning autism (for him and for us).  It’s a sacrifice for us in many ways. 

- He’s worth it.  So, so worth it.


David is here because God put him here.  He was GIFTED to our family.  And, honestly, the "gifts" that have come into our make-up as a family since his arrival, and even more since his diagnosis of autism, make us who we are.  

And I wouldn't change a thing.







5 comments:

  1. Hi Kaysie,

    I've just found your blog through a friend. Reading this post is like a page from my life. Just wanted to encourage you and your family in living with Autism.

    Our family has been walking this Autism road for many years. From the time our son was 2, I tried to get a diagnosis. I knew something wasn't right. Finally in 2006, at the age of 5 he was diagnosed with high-functioning autism aka aspergers. It's not an easy life, but there are bright spots. :)

    I can relate to the huge amount of time spent in helping your child, especially in the early years after you get the diagnosis. From the doctor's appointments, counseling sessions, therapy and social skills - it's non-stop, especially when they are young. It's exhausting!

    Now that my son is older and maturing, some of the issues that concerned us when he was younger aren't an issue any longer, but they are replaced with other concerns. Especially the fact, that he's getting older and we have to prepare him for adulthood. While it wasn't easy, the time and money we spent in therapy and social skills has helped give our son a good foundation that we continue to build on to this day. You are on the right track!

    It sounds like you have a strong support system in place; it's important to make time for yourself, your spouse and your other children. For years, I have looked for a support group for siblings of children with special needs. I've asked professionals we have worked with about starting one, but so far there isn't a group where we live. There's such a need for this - our typical children need support, understanding and a place where they can "vent" and know they aren't alone. Living with autism can be chaotic at times.

    If I can give you one piece of advice this is it: take one day at a time - don't look ahead, because it's easy to become overwhelmed. Trust God and ask Him to help you and direct your paths. He's given us strength, hope and peace during this journey. Looking back, I see so many times when He's answered prayers and helped us along the way.

    May God bless you and your family.
    Carla Miles

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  2. I just wanna say, you are so right. I forget. I forget he has autism. We have a great day and then suddenly WHAM and I freak out with a big 'ol dose of 'what is wrong with you today.'

    And we aren't even that high functioning. We have a LOT on our plate, but I still forget. And when I do it blows up. Every. Time.

    I've triggered the BOMB a few times lately. Just because I forget. *sigh*

    Here's to being reminded ;)

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  3. Thank you for sharing your heart and also a glimpse into your world and home!

    What a beautiful gift your family is!

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