A rose by any other name …

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Shakespeare didn't get it wrong. He was being ironic. In his play "Romeo and Juliet", Juliet says to her star-crossed lover, Romeo, one of the most oft-quoted lines in English literature: "A rose by any other name would smell as sweet". What she meant was that it didn't matter to her that his family name meant they were supposed to be bitter enemies; she loved him just the same. Very romantic. And in great Shakespearian tradition, they both die. Thus the irony.

The point, I think, is this: labels do matter, but that doesn't mean you should allow them to define how you think about something.

We've all been there (or know someone who has) - you know something is not quite "right" about your child. At first, people tell you not to worry, that children develop at different rates. But at some point you just know, and so after some amount of navigating whatever medical system you live under, you end up talking to some kind of pediatrician or psychologist or whatever who gives you a label. "Your child has autism." It might be a bombshell if you aren't expecting it, or it might be a relief if you're far enough along that you know how the system works.

Different people have different labels for it. Those labels absolutely make a difference. As far as the schools are concerned, it's a disability. That way he gets help. Same goes for the government - disability tax credits to offset the cost of intervention programs that go beyond what other programs provide. In our case, that is (or used to be) the Ministry of Children and Family Development. They needed a diagnosis of PDD or ASD (it's a "disorder"). Psychiatrists like to call it a disease. But good luck trying to put your kid in a school saying they have a "disease" and hoping they don't get treated like a leper.

Many years ago, we were with a large group of friends. Among this group is a boy only a few weeks older than my son. I think they were about 6 or 7, and being a curious lad he asked us why this kid hardly ever conversed with him like his other friends did. Not in any demeaning way - he was actually very kind and diplomatic, saying that he really liked him and considered him a good friend, but was just curious why he acted the way he did.

So we told him. He has autism. He was born with it. His brain works differently from other people. He's really good at some things and not so good at others, like communicating. And you're a good friend for asking.

"Cool." And he went back to whatever LEGO thing they were building together. Years later, this same kid who couldn't carry a conversation with his inquisitive friend helped that same friend get through summer school math.

I really like the term "Neuro Divergent", which someone used recently in a comment to one of my posts and brought it to mind. Having my formative years in the 80's I learned to distrust ridiculous political correctness (I'm not vertically challenged, I'm short) but this one is not a euphemism. It recognizes something really important.

"Dad, I heard you talking about autism. Do I have autism?"

"Yes"

"Is that bad?"

"Not at all. It's just part of what makes you who you are. It means you need extra help with some things that other kids don't need help with, but that's OK. Everyone needs help with something. It just means you're different. Some people might have a hard time with that but that's their problem."

So some people need to call it a disease, or disorder, or disability, or something else that sounds negative. They need that in order to their job, which ultimately is to make assistance available. Some people call it that out of habit.

Personally I try to carefully choose words designed to help people feel good about themselves, and others. They also happen to be the truth. But that's just me. Maybe I'm different too.

26 thoughts on “A rose by any other name …

  1. Liz Enderby

    Thank You! I saw this shared to my twitter feed and am so glad I read it. Labels are good and they give us power over the outcome of what that label means. Thank you!

    Reply
  2. Marv Conroy

    Great post. Never been here before but will return. I like the way you tied it all together. Honestly after being forced marched to read Shakespeare I always thought he might be on the spectrum.
    Good stuff!
    Marv

    Reply
  3. Ruby Innes

    I am so happy this was shared to me. I am the Grandmother of a very active boy on the spectrum. I have read many blog posts but not many of those have hit the mark. Your post comes from a place with a voice of experience and I am happy to read heard that voice.

    Reply
  4. Kim Greenley, Autism Mommy

    Some Schools do consider it a disease, and that’s just wrong. In our State its hard to get a diagnosis and even harder to keep your kid in a normal classroom once their “label” has been attached to them. Our school only allows so many IEP’s per classroom, for good or for bad, and this makes it even tougher. I wish our world were more inclusive. Scratch that, I wish our Country was more inclusive. I am guessing things are marginally better in Australia and Canada. Wish we had your Countries understanding. Thanks for the Blog.

    Reply
  5. JacobKibbe

    All hail the great Twitter God, for it has brought me to your blog. Can I just say that I love your blog? I have been poking around your entire site for the last hour and it looks goooood. Downside? I have no idea what your program does or how it works. I think you need to describe what Ababkis actually is and what it can do for us parents. Regardless I am intrigued enough to ask for a demo.
    Now onto your blog. I think your son was lucky enough to stumble onto some nice, open minded children and parents during his formative years. Our son has not been so lucky. He lives in his own world where other children have no desire to go. I am not sure I mind but his mom sure does and so do I. Do you have any advice to help parents bridge the gap between the “normal” kids and ours?

    Jacob J Kibbe

    Reply
    1. Mary

      It’s hard for most of our Kiddos to make friends with Normal Kids. I think it all depends where you are on the spectrum. There needs to be more play groups for our asd kiddos. Great Blod BTW. Really got me thinking.

      Mary

      Reply
    2. Erik Post author

      Thanks Jacob. A demo is the best way to see what ABAKiS does. We’re also working on a short demo video to make it easier to see how it works at a glance. Your question is not an easy one. The study I mentioned in another reply (further down I think) might give you some ideas. It’s all about how you structure it. Siblings can also be a valuable asset if you have other children.

      Reply
    3. Karen Greybower

      I agree with Jacob. Your son was very lucky. i watch my Grandson struggle with social acceptance every day and it breaks my heart. I think that acceptance starts with parents and filters downward. I do also have to agree with Jacob as I also do not understand what your program does or how it can help my Grandson. Your blogs are so open but your Website is very closed off. I will keep looking in on your blogs and hope to see your site make changes. I am sure your program/product is lovely.

      Karen Greybower.
      Grannies for Autism!

      Reply
      1. Erik Post author

        Thank you for the feedback! We are working on some updates to our website to make the product offering more clear. Acceptance is not easy for a lot of people. A lot of it has to do with culture, which can vary greatly even within the same city. That can have a huge impact on parents. If we can make even just one part of that journey a little bit easier, then we’ve done what we set out to do.

        Reply
  6. Shelly Anne Gerrold

    Thanks for this blog topic. It gives me hope that my daughter will eventually make lasting friends. Some kids are kind but do not want to play with her. Some kids do ask what is wrong with her. When we explain they usually just shrug. Life can be lonely for autistic kids, but I am not 100% sure my daughter notices. I sure do.

    Shelly Gerrold

    Reply
  7. Nate Yukin

    Good blog post. Got your Link from a Parent Group the Misses and I are on. Have seen a flurry of activity about your company but am not really sure what your company does. Clear as mud mate.
    So labels are double edged and can go either way in our society. As a dad of an Autistic (apparently that’s the trendy term) we try to let our child live a life free of stigma. Yet the schools, in order to build the proper IEP want the label, nay need the label to pigeon hole children. The sad part is even if they progress, even if they improve and change and grow like all children that original label always follows them. I wish it were more cut and dry, but such is life. Great post but your site needs an overhaul.. just a thought..

    Reply
  8. Anni Leung

    I was compelled to check you out after getting a lovely email about your “Back To School” package today. I came right away to get more details and there are none. Seriously? I am trying to figure you out. I scoured every inch of your page and while it’s a nice looking site it does not tell me any more about your company. Lots of wodd, no substance. I came here based on a fantastic, well designed email and am left wanting… Good blog posts but nothing consistent as the dates reflect. Overall I am confused.

    Reply
  9. Soldide Corvina

    Translated from Spanish..

    Our son is struggling to make friends. Children are very accepting but their parents often are not. You are very lucky. Your son sounds like he is deeply cared for by his friends. Please write more about your struggles. We have very little available for us in Mexico for autistic children.

    Nuestro hijo lucha por hacer amigos. Los niños son muy aceptantes pero sus padres a menudo no lo son. Tienes mucha suerte. Su hijo suena como él es profundamente cuidado por sus amigos. Por favor, escriba más sobre sus luchas. Tenemos muy poco disponible para nosotros en México para niños autistas.

    Soldide

    Reply
  10. Jaclyn

    An intriguing blog discussion that is definitely worth comment.

    I do not have many other parents in my situation to talk about these things with,
    it might not be a taboo matter but typically people don’t speak
    about such topics. We need more openess about our children on the spectrum. Thank you for the hope of the future. To the next! Best wishes!!

    Reply
  11. Lillian Boyette

    Hi Eric,

    We are going through something similar with our son except with a twist. He seems to be rejecting the attentions of other children whether on the spectrum or neuro typical. Did you ever have your son reject other and what did you do about it? As he grew what was the number of his peer group? Did he have a group of friends or just the one?
    Great Blog my friend!
    Lilly

    Reply
  12. Ken

    Your post gives us educational messages to maximize their child. As the latest part of Toy Story series, the movie tells the storyplot of how Woody leads his squad to obtain clear of day-care center to get back to Andy. This is because they were friends regardless of hoe each was. Our Autistic children should be like this amd treat each other as friends. It is not always the regular child who rejects the autistic child bit sometimes the other way around.

    Reply
  13. Karen Clemmie

    I’m really impressed with the the other boy in the story and how you explained autism to him. You are a good dad. I am here because this was shared to my facebook page and I wanted to say thank you. This gives us some hope for our Grandson. Hoping for more blog posts soon.

    Reply
  14. Marcos

    Having read this I thought it was rather enlightening.
    I appreciate you takіng the tkme and energy to
    put this short article toɡеther about autism and your son. I oncе again find myseⅼf spending a significant amount of time both reading and posting comments.
    Buut ѕo what, it was still worthwhile!

    Reply
  15. Amanda White-Banrane

    This is inspiring. I just saw this on twitter as I follow you guys. Love the articles, blogs, autism facts and inspirational stories and pictures. Our son went through something very similar and to this day is still friends with the first boy he made friends with. After he made that friend he was not interested in making more. Did your son end up with a larger peer group or was it just the one friend? We are concerned that he has no interest in other children. We have tried to invite other children to his birthdays but he has a meltdown when he finds out. I agree with a few of the other parents that this gives us hope. Thank you and God Bless.

    Amanda

    Reply
    1. Erik Post author

      This is a really good question! In my case, my son is now 19 and has always been a loner. We have a large extended group of adult friends that he is comfortable and engages with when they are around, but otherwise has always seemed content to just do his own thing. I’m not a psychologist of any kind but my take on it is, every child is different. What’s best for one is not best for another. Parenting I believe is a constant balancing act between nudging them in the right direction and following their lead. Having a child with special needs is a constant journey to new unknown places.

      Reply
  16. Amee Lee Tac

    You are right when you said that we all know when something is not “right” with our Kiddos. We always want to deny it but when it becomes clear it’s time to seek assessment. The day we got our formal diagnosis was both the worst day and the best day. It was the last day we thought our son would grow to become “normal” but was the first day we truly met our son for the first time. I pray that he ends up meeting understanding children but so far none. Thank you for this blog. It gives me hope. Thank You!
    Amee Tac

    Reply

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