Autism: What You Don't See

Samuel was diagnosed with Autism about a year and a half ago. Since then we've had many comments and advice - but the main comment we get is "he doesn't look autistic." He is very high functioning but that doesn't mean he's not Autistic. I thought I would give you a sneak peek "behind the scenes" so to speak.

What You See: He makes great eye contact and communicates really well.
What You Don't See: 5.5 years of speech therapy. At the beginning we were receiving services 3-4 times per week, it included two 1-hour speech therapy sessions plus a special preschool twice a week for 2.5 hours. It included a listening technique in which he had to look at our faces to show us he was listening. We would say things like "look at my eyes" or "look at my lips" so we knew he was listening and it would also help him focus on our words. We practice conversation skills at dinner time in which he has to ask other members of the family how their day went. We still receive speech services working on things like expressive speech and idioms. We listen for sounds and language. I never knew there was a difference between speech and language until we began this journey so many years ago.

What You See: He is able to self-regulate rather well
What You Don't See: Once again the years of occupational therapy. The brushing, pressure points, weighted compression vests, rubber pieces attached to the end of pencils for him to chew on, suckers and noise-canceling headphones.

What You See: Me leaving a play date early, our family not attending an activity or our quick exit for no apparent reason.
What You Don't See: The signs of an approaching meltdown. What seems like an age-appropriate reaction to another child (a slight shove, taking a toy, etc) is actually the signs of losing control. Covering his ears, hyper-activity, or curling up into a ball might all seem slightly cute and endearing but for me it means it's coming. The screaming, hitting, body-checking meltdown. Sometimes we've had a very trying day/week and we know if we attend activity A it will push him to his limits and it's just not worth it.

What You See: A kid who is potty trained.
What You Don't See: The YEARS, literally, it took to potty train him. The fact that he wasn't fully potty-trained until he was almost 5. The fact that he still has enough accidents I send an extra change of clothes to school with him every day. How I have to continually remind him to use the bathroom and how the first thing I find when I go somewhere new is the public restroom. How I still won't go to parks or other areas that do not have easy access to a bathroom.

What You See: A child who is obedient, but whose mother seems to bribe him a lot.
What You Don't See: The logic of an autistic child - they need to know why to do something before they do it. They need a reason. We have a positive reinforcement system set up - when his behavior is good he earns a star. Usually around 5 stars he receives a small prize. Sometimes, he can earn bigger prizes like a new Lego set with 100 stars. We also have a red/green system. If he is on Red then he loses privileges, TV time, iPad time, toys, treats, whatever might entice him that day. You'll often hear me say "2nd warning." That means if I have to remind him again he goes on red and loses all privileges until he earns his way back to green. Not to mention the hours of behavioral therapy we attend.

What You See: He's rather successful in school.
What You Don't See: He's repeating the first grade, we moved to a school with an autism program set up to handle him better, and an IEP pages long (not to mention the countless hours in meetings). Academically he is doing great but socially he is behind even though he is doing much, much better this year.

What You See: A child who acts fine for you.
What You Don't See: The let-down that follows at home. Picking on siblings, controlling behavior, his alone-space. The resetting we have to do to get him back on a routine, get him back to normal.

What You See: A messy house, hair that needs to brushed, kids wearing clothes with holes in them.
What You Don't See: The countless hours I spend each week in therapies and routines. The exhaustion that comes with handling an autistic child plus two rather strong personalities. The battles you have to pick to fight because honestly, if his Tuesday shirt is long-sleeves in the middle of summer and it doesn't bother him, why should it bother me?