“But She Looks So Normal!”

Is what someone said to me the other day when I mentioned the reason Emma wasn’t responding immediately was because she’s autistic.  And when Emma finally did respond, it was with a reply which had no application to the question asked.

If we went on looks alone, we would all be in trouble.  However in Emma’s case it both serves her as well as complicates things.  People look at Emma and assume she’s “normal”.  They see an athletic, cheerful child.  It is difficult for people to believe she cannot communicate as other children her age do.

I have had the experience of being told on more occasions than I can count, “Oh my toddler does that too!”  or “She sounds just like my son!” and then they go on to tell me stories about their impish child’s antics which remind them of Emma.  Except that Emma is not an extremely tall two-year old who is acting out.  She is an autistic eight-year old who’s verbal skills continue to progress at a snail’s pace.  When people comment she is like a two-year old, they are right in some ways, but in most ways it is an incorrect assumption.  Emma is not “delayed”, she’s autistic and there is a vast difference between the two.

Explaining Emma to our son Nic, has forced me to become aware of just how complicated it is to describe her.  To say that she is doing something – biting herself, for example – as a way to get attention, would be incorrect.  Emma is not seeking attention.  I believe she is trying to gain control around a situation, which is uncontrollable.  The pain she causes herself is more tolerable than the pain she feels from a situation she has no power over.

When I look at her brain scans and see the lack of symmetry, the bright colors, which should be dark, like a strange Rorschach test gone wildly awry, I try to detect patterns.  I try to make sense of what I’m seeing, but cannot.

“Emma’s brain is not like ours,” I tell my son and myself in times of upset.  She does not think, feel, see or hear as we do.  She is decidedly “other”.

But how to explain this to the family on the airplane we recently took when asked if they wouldn’t mind sitting across the aisle from their grown children so that we might sit next to Emma?

When they refused, the father added, “I don’t see what the big deal is, you’re sitting near her, just the aisle’s between you.”

How does one then explain how agitated Emma will become?  How can one really make people understand, who have little or no contact with autistic children or if they have, one unlike Emma?  Of course Emma did become agitated and eventually we found two kind souls many rows back who were happy to take our seats so we could sit next to Emma, disaster narrowly averted.

“I can’t imagine what it must be like to parent an autistic child,” a friend of mine said a few weeks ago.

“I can’t imagine what it’s like to have two neuro-typical children,” I responded.  Afterwards, I thought about our conversation.  I really cannot imagine.  Emma informs every aspect of our lives.  When Emma says or does something new we record it.   Every milestone, each new word uttered is met with astonished elation.

I remember when Richard and I were planning our wedding.  A friend of Richard’s told us to take a few moments to absorb everything that was happening because it would go by so quickly.  We took his advice and to this day I can remember the beautiful floral wreath arrangements hanging from each lighting fixture, the candles casting their golden shadows across the room, Richard’s handsome face as I walked down the aisle toward him.  I remember because I stopped for a moment and took the time to take it all in.

Emma has provided us with something similar.  Her progress is so slow.  We celebrate each and every tiny step forward.  Of course we are also forced to spend much more time than we’d like, being present for the steps not taken, the fumbles, the excruciating process of growing up in a world where people do not understand, who judge Emma and us, assume she’s a “normal” child who is just being obstinate, difficult or “spoiled”.

The trick is to savor it all, I suppose.  A trick I continue to work on.