“He Doesn’t Look Autistic”

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“Alright, let’s see what you got there.”

I handed our accountant our pile of tax paper’s, getting ready to have our taxes done for the year.

The accountant went through the pile of paperwork and started putting things in piles.

“What is this one?” The accountant had stopped sorting and looked at the form, through his glasses that sat on the tip of his nose.

“It’s Declan’s Medical Assistance,” and when I saw his eyes go from looking down at the paper to over his glasses to look at me, I continued.

“Declan has autism.  He is on Medical Assistance.”

The accountant looked from me to Declan who was walking around, looking at the ceiling holding a hockey puck.

“Oh.  He doesn’t look autistic.  I would have never known.”

Doesn’t Look Autistic

Let’s be clear here.  I love my accountant.  My husband and I have been seeing him for years – before we even had any children.  He’s watched our family grow, we’ve watched his grandchildren come and grow.  I love our talks about family, local sports teams and his help with our finances.

I understand “doesn’t look autistic” is a common statement.  I’ve heard it many times from many different people.

I don’t think everyone is trying to be mean when they say this statement.  They are stating the obvious.

One cannot see autism.  Autism is an invisible disability.

But it also minimizes all the frustrations and tears we have fought through.  The day-to-day stress we must work to overcome.

It was 2 years ago, the accountant made that statement.  Declan had been diagnosed with autism 6 months earlier, and it had taken me almost all that time to accept and come to terms with the diagnosis.

And to recognize all the difficult behaviors come together into one diagnosis.

And as I sat with the accountant as he went through the papers 2 years ago, I thought,

“He just doesn’t know….”

He doesn’t know I can’t let Declan be around other kids his age at the playground.  Declan doesn’t see them.  He pushes past them or hits them.

The accountant doesn’t know Declan doesn’t come to me when I call his name.

And that his language is so limited.  He can’t tell me his wants, needs, hurts, loves.

Declan does not follow directions.  I know he can hear me, right?  Why can’t he process my words?

The accountant doesn’t know Declan doesn’t cry when he is hurt.  Cut and bleeding, I am the only one shedding tears.

He has never seen one of Declan’s meltdowns – how scary and severe they can be.

Does the accountant see Declan holding a hockey puck?  Does he realize Declan doesn’t play, watch or even know what hockey is?  Just that he likes to hold the puck?

That he doesn’t play with toys?

Does he see him running around staring at the ceiling lights, shaking his head?  That my husband and I are sitting around him not asking him to sit as that request is futile?

Do all three-year old’s drool like Declan does?  I should probably wipe his chin.

Does the accountant realize Declan is here because we do not have a babysitter for him?

 

I thought about all this yesterday as we got our taxes done.

Those are things I could never tell the accountant.  Nor anyone else that ever said “He doesn’t look autistic….”

You can’t explain day-to-day life.  You can’t explain the challenges Declan must face.  The challenges the family has.  The stress.  The times of heartache and the magnitude of the joys.

All I can say is that when someone tells you their child has autism, just know you can’t see it.  Just know the person, the child and the family has been through a lot.  Trust me.

I looked down at Declan on the floor, wearing his Spiderman costume and thought about our visit 2 years ago, and just thought, “how far we’ve come!”

And when the accountant congratulated Declan, telling him he did a really good job at the appointment, I smiled and thought, “how far we’ve all come.”

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16 thoughts on ““He Doesn’t Look Autistic”

  1. People really don’t know, but many are starting to understand. It is such a relief when the people around you “get it.”
    Even when having an I.E.P. is a contingency plan because he’s alright until he isn’t.
    Even when the autism expert is asking you “what do you do if,” and you have to think about it, because you have spent the last few years preventing the “if” from happening.
    Even when success means being dropped from therapy because you’ve met all the goals.
    And Even if we all know that if you’ve met one kid with autism, you’ve met one kid with autism.

  2. I know that without reminders of the things that are better, all the things we still have to work on would overwhelm me sometimes. Even friends & family don’t get it. I gave up trying to make them understand why we couldn’t come to their house with all their glass knick knacks long ago. The important thing is helping Ben navigate and grow with as little pain & as much joy as possible.

    1. You’re right – sometimes I have to look back to remember what we were trying to overcome then to praise where we are today and give me strength to face forward. I agree – we have the same goals for Declan here!

  3. Was not aware that there was an way autism people looked! Maybe the accountant should enlighten the rest of the world with her delusions. Drooling is not a sign of autism, just a sign of having gotten something foul in the mouth somehow! Basically most people drool after a dentist procedure, so does that mean most people are autistic? Sorry, I just can’t follow her reasoning to the conclusion.

    1. I see what you are saying. And I agree, autism does not have a look. Declan does actually drool – it is difficult to understand what he is saying and his speech therapist told me that his mouth muscles are just weak. Which is why it was hard for him to talk (he hadn’t talked for so long) and to be understood. Or control drool from coming out of his mouth. He chews on theses chew toys to help build his mouth muscles. It’s working! I think you can understand him better.

  4. You really helped me feel your emotions like I was going through it. I had just learned a few months ago that my cousin is autistic. I felt embarrassed that I had not known, with him being 12 now, although I have never met him I had started talking with his mother (my aunt) again after a couple years. We talk pretty often now and I just recently found out that my cousin and her had a rough last week because she had to send him to a center. She informed me that because of his autism he gets pretty depressed and talks about death sometimes. I’m glad to see hope through your posts that I’ve read thus far.

    1. I am so glad that you have found the posts helpful – that really means a lot. That is really tough that he is depressed and talks about death. I am glad your cousin has supportive services in place!

  5. I totally get this. It is hard to live in a state of constant misunderstandings. My brother said to me once about my daughter, “I knew she had autism before you did”. I doubt it. Of course my brother likes to think he’s something when he’s not. But anyway, that comment still hurts me 6 years later. People can be utterly insensitive.

    1. I agree – we are all fighting a pretty hard battle and sometimes people can make pretty insensitive comments. It’s nice to find those people who help and support!

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