Autism is a Diagnosis, Not a Label

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“Does Declan flap his hands?”

“Sometimes.  But not very often.”

“Oh….Does he walk on his toes?”

“No.”

“Does he make eye contact?”

“Eventually.  But it is very hard for him at first.”

Sometimes I feel like I answer every question that goes along with a facet of autism.

The Pediatrician is no different.  The last time we saw him he referenced the toothpick scene in Rain Man when he was examining Declan, and asked if Declan was a savant with numbers.

 

Autism is a Diagnosis, Not a Label

 

I can usually pick up pretty quickly when I meet someone who is trying to fit my children into their autism mental mold.  Their mental mold of what autism is, what autism looks like, and all children diagnosed with autism look or act a certain way.

I get it – I used to do it too.

I was so certain Declan did not have autism that I allowed for him to be evaluated.  His behavior did not fit into my mental mold of autism.  Turns out, I was wrong.  And I grieved when he was diagnosed.

 3 years later I feel like Declan being diagnosed with autism is the best thing that could have happened for him and the entire family.

Why?

When Declan was diagnosed with autism, I didn’t know what it meant.  Yes, I knew that Declan was facing challenges.  Yes, I knew that things were hard.

Did that mean things were always going to be that hard?

What was autism?

 

As we were trying to figure this out, Declan was enrolled in autism services.  He started to learn, grow and talk more.  He started to smile!

I erased my mental mold and started over.  I saw the challenges Declan and the family faced.  But I watched Declan and let him show me the way.

When Catelyn was diagnosed I did not grieve.  But I still had a lot to learn about High Functioning Autism and the Autism Spectrum.  As we did with Declan, my husband and I questioned if we share that she was diagnosed.  I knew autism is nothing to be ashamed or afraid of.  It’s a diagnosis, not a label.  We are very proud of Catelyn, and how she works through the challenges she must face.

Believe it or not, we do not talk about autism much in this house.  My husband and I talk about the kids.  We accept that autism is a part of our family, but it does not define Declan or Catelyn.  Autism just tells you a little bit about them.

Catelyn and Declan are not autism child number one and autism child number two.  They are Catelyn and Declan.

If I were to meet you on the street, I would not tell you my children have autism unless it came up.  I would tell you Declan loves Spiderman.  He loves to play video games and enjoys playing imaginary games of Ghostbusters, Star Wars or Superhero’s.  I would tell you that Catelyn loves to do cartwheels, play soccer and act on a stage.

Autism is just a diagnosis that describes some of the challenges that the kids face.  But it is not all they are.

Autism is a diagnosis, not a label

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16 thoughts on “Autism is a Diagnosis, Not a Label

  1. Love that labels on cans graphic. Ben wears a bracelet for safety but, like you, I’ll say he loves Thomas & friends, Hello Kitty and sidewalk chalk. He has red hair, hazel eyes and he’s autistic. In answer to “why does he do that” I’ve been known to say ” because his name is Ben” 😉

    1. Declan has a bracelet too – but I only put it on when we go to a crowded place. I didn’t think about that. That’s great! Nice to know those things about Ben – and I like your response. Spot on! 🙂

  2. I think the fact that you are writing it all down for anyone to learn a little more from an insider perspective is really important. If I were to pick up a non-fiction from the book store, it would be written by a doctor. As people of science, they tend to write about “the subject”, draw similarities, find generalizations in their research. Which is important too because that’s how they came to conclude diagnosis as well as find treatments. But there are two sides to the story of an individual: one as part of the statistics and the other boiled down to the fact that it IS an individual. Really, please keep writing and break the barriers of stereotypes.

    1. Thank you so much! I am blessed to have people read what I write. So I can share our story and shine a light on autism. Thank you for your kind words and for reading!

  3. Very well said, incredibly informative to those like myself who don’t know much or enough about autism. Thank you for this post! And I completely agree – in general kids and adults (especially) alike will freely assign labels without thinking about the ramifications it will have on the child, and it can be damaging in the long run.

    What’s important is that Declan needs to know Lego has a new superheros box set that’s come out and Catelyn needs to start rooting for the same soccer team that her family does! 😉

  4. I know a couple (not personally) but through a friend that their child is autistic and she got cards made and one night at a local hotel whilst out for dinner she noticed the family across the room kept “staring” at her son,she grew tired of them that she pulled out a card and handed it to the lady which read “my son has autism,he is very kind,he has additional needs and it’s not fair to stare,please as a family let us enjoy our meal as a family,we don’t get many nights like these” and then a website address was listed under it for her to view facts about autism..I thought it a great idea and a very brace and encouraging thing to do..oh and I’m completely with you in what you stated in your post..100% Xx

  5. Ha ha, this goes along with my comment on your other post. I was actually thinking about this the other day because a friend of mine has another friend and her son has some disability–can’t remember what it was now but I know he’s partially blind. He’s 14 or 15 and she babies him. Everytime he does something wrong, she makes an excuse about him having a disability. She said to me, “It must be hard to be told over and over you can’t do things. If I was told I was incapable, I’d give up.” That really struck me. I don’t talk non-stop about autism, but I can have a defeatist attitude sometimes. The last several years, I’ve been telling my kids “You are responsible. You have the skills to do hard things” and it’s made a difference. Instead of caving when they do, I tell them that, and they have risen to the occasion. I read a book about resilience and that helped me as well. If we limit our kids with labels and tell them they can’t do things or just constantly remind them of their disability, I think this does so much damage. So I’ve been trying to reverse that, although I can tell my daughter isn’t buying all of it. She told me a few months back she couldn’t get a job because “I’m not like everyone else”. That broke my heart. You know what? Who cares if you aren’t like everyone else! I sure am not like everyone else either yet I held jobs–pretty awful ones and I survived. I was even debilitated by my shyness and lack of social skills–yet today, I can carry on a conversation and look them in the eye (eye contact feels utterly strange to me because it feels like someone is glaring through my soul. I’m an HSP and not autistic, but I don’t like eye contact for very long), and ask questions and respond. I know my daughter struggles with this, but I believe she will eventually get there…maybe not like me, or how I do it, but she can find her own way to converse and be personable (to a degree). Anyway, long comment just to say I think we can and should talk about other things besides their diagnosis. Good post!

    1. Haha! Yes! I thought that when I read our last comment. Yes, I agree. My daughter has the worst time taking responsibility for herself. Or simply saying, “I’m sorry.” The other 2 are better at recognizing their role in things. But with her, I feel I need to help her see the error and then say, “I am sorry. I was wrong.” Still working on that! I agree that it would be hard for her when she got older to understand her role in things if she always excused herself, or felt that she couldn’t help it. That would break my heart too, though if Catelyn told me that she didn’t feel like she was like everyone else and couldn’t do things. She is definitely not like everyone else – but I agree, that is a really good thing. We sound very similar – in order to get through my wedding I had to work through a social anxiety workbook. In general, I had to learn social skills, what to say. Asking for help was the worst. I would just forget whatever I was going for and move on to avoid asking anybody for anything. I purposely went to a large state school for college so I COULD just be a number. So I sometimes feel like I am not helping 2 kids that have social issues. The difference is, they WANT to socialize but have problems reading social cues. But I am sure they will find a way and we will help them be the people they are capable of being, and not the diagnosis that is just a part of them. 🙂

      1. I can relate to wanting to be a number…just be a wallflower! People actually have called me that. I do notice my daughter comes out of her shell more when she’s doing something like drama or Improv or anything with humor. Maybe it just takes finding her groove.

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