Sunday, June 24, 2012

"Autistic" VS "Has Autism" Is this debate still going on?!

Is this silly debate about saying someone "has autism" vs saying someone "is autistic" STILL going on?!

I use them pretty interchangeably on my FB page and on my blog, but I'll ready admit that I usually say my son "has autism."

It seems to me like parents of low functioning ASD kids prefer "has autism" while highly functioning & aspergers folks prefer that they "are autistic."

People have tried to suck me into the debate from time to time or made a comment on the page or blog complaining that I'm using the wrong phrase no matter which way I go.

I really don't care to get sucked into the debate....I really dont care what you call it. It truly doesn't bother me either way..

But I will say this
(which I'm sure will spark a big debate :-)

I thnk the reason i usually say that my son "has autism" is that I readily admit that I think of it as a disorder, something that I would give back in a heartbeat. (I wrote about giving it back in an old post that you can read HERE)

Anyway, the same way you say "she has cancer" I say "Kyle has autism". It doesn't define him as a person, it's just something that he has and he has to live with and fight...the same way you fight cancer.

I think the high functioning and aspergers "autistics" prefer autistic because they feel that their autism is an integral part of who they are. And that they'd be a completely different, and not necessarily better person without their autism.

And that may be true for them but if that's true for them then they are truly dealing with almost a completely different type of autism then my son.

My son has severe / classic autism (there i go again, notice how I didn't say "he is severely autistic"). Anyway I've said in other blog posts I truly feel like without his autism I'd still have the SAME kid with the SAME personality but without the autism he could talk, and he wouldn't have seizures, etc, etc, etc.

I can think of a million things that the disorder that he has which is called autism prevents him from doing but talking, hell communicating in any way tops the list!

And if your an autistic person and you take offense that I think of my sons autism as a disorder I point you to Carly Fleischmann. She is non verbal and classically autistic but she writes about the struggles she has to deal with and how she wants to talk so badly yet cant because of her autism and she writes about some of her sensory issues and how because of her autism she sometimes feels like she has ants crawling over her body. It sounds like she'd give back her autism if given the chance.

That's all i got. As usual I'm rambling so I'll end it here.

And I'm sure this post will start a huge debate but that was not my intent. I think we can live with both terms and if you are autistic I can see your point of view and I hope you can understand my point of view on this issue.

That's all. The end.

Go in peace...


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102014

47 comments:

  1. I've never been offended by one term or the other. I have bigger battles to fight.

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  2. I agree. My daughter is severely Autistic, and also has intellectual Disorder. I feel like with all the mud us ASD families go through with this fickle phantom that is Autism you must have things pretty good to be able to care about verbiage.

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  3. I go between the two.... sometimes he's autistic and sometimes he has autism! Depends on who I am talking to I guess. It is a big part of who he is but isn't WHO he is......if that makes sense. I don't guess I'll ever know if he would prefer NOT to be autistic. That is one of my hopes.... that he will be able to communicate. I would LOVE to know what he thinks of all of us "normal" people!!!! In the meantime he is a happy camper most of the time and allows us a peek into his mind/world occasionally. Once again thanks for sharing A.D.

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  4. I could have written this rant :) In fact, except for the description of the child, I have said the same thing to many other people.

    I asked my daughter, and she said this( I scribed for her):

    I have.....
    red hair
    autism
    a sunburn
    freckles
    a tabby cat
    a blister! AAAHHH get a bandaid!!! MOOOMMMYYY!!!

    I am.....
    left handed
    kinda short
    a girl
    funny (so I'm told)


    My ID card describes me as:
    caucasian-whats that mean?
    female
    minor
    brown eyes
    red hair

    Autism isn't all of who I am. I'm good at art, and I got good grades this time, and I like to help people. Hey, did you see this video yet? (pay attention) Oh. I made a thing in paint, but it wasn't for school or anything. (pay attention!) Oh. I like to help kids at school who have worse autism, why don't people get that he like...*can't* to be touched, and he isn't just playing? I mean, why do they have to understand WHY before they just not do it? Can't they just say, 'oh, okay' and not touch him? He lets me take him to class cause I won't hold his hand, I hold his sleeve on his coat. It's not hard, he's not stupid, he just doesn't talk. And I talk all the time, so we sort of match! Hey, did I show you that thing I drew? (no, not yet.)


    Did I mention she also HAS ADHD? But it isn't all of what she is. She would still be the same caring, funny, red headed, left handed, person without it.

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    1. Well said.

      But you can also be autistic, left-handed, intelligent, funny, artistic... and still be all of the other things. One of the things I like about using the term "autistic" rather than "has autism" is that it allows for more gradation - i.e. you can be somewhat intelligent or very intelligent and your are still intelligent, you can be a little funny or extremely funny and you are still funny, you can be a little autistic or very affected and still be autistic. It's just another part of you - not all of you. You can also be moderately vision impaired or have no vision and still be blind.

      And there are things about my autism that I would change if I could just as I would some of my other traits.

      In any case, we are all different and what word we use is less important than the compassion we show for each other.

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    2. This has brought a tear to my eye ,she sounds just like my 3 boys who are on different places on the spectrum !!x

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  5. I have a child with diabetes. He is a diabetic. I have also a daughter with autism. She is autistic. To-may-to? Tah-mah-to? Whatever, I love them both.

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  6. whats the difference, I dont get it? somebody explain please

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    1. The difference is a of higher functioning people don't like to accept the fact that there are a lot of sick or severely disabled people with autism.This is the main reason.

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  7. A rose by any other name would smell just as (bitter)sweet.

    "has Autism" "is autistic" It's all the same to me.

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  8. We just learned about my son Hunter's diagnosis of asd late last year. He'll be three next month. I'm also still trying to figure out how to, or when to explain to people about my son's Autism. It's weird for me bc I don't feel like I need to shout from the rooftop, but taking my son on a small choo choo train ride at the zoo i felt like I needed to tell the driver that my son was autistic and if we need to get off if that'd be ok.
    I've never thought about autism vs autistic. I dont see why there's a need for debate. You can't be autistic without having autism!
    But going to my sons IEP meeting, and filling out paperwork for school, I can't get over the term "sped" teachers. It's a term I get, but don't like. It's the words people use that urk me. (ex: retarded, sped, short bus) I get hyper sensitive to those, but have to realize not everyone is living our life, and I can't expect people to change on our part. All I can do is be patient, protect my kid, and rip anybody's throat out who hurts him. :)
    Autism Daddy, your page really makes me feel better sometimes. Thanks for being positive and having a great outlook. It's infectious.

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  9. Great post! Personaly, I don't even understand why people feel its necessary to,even argue about it?

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  10. Some people do tend to get caught up in the semantics....
    Autism Daddy I just wanted to tell you not to give up on the talking. I work with a young man with autism. He functions at about a 2/3 yr old level for most things, also has a seizure disorder and had no functional language until he was about 19 or 20. I do not know what his choice would be, but if I got to choose for him, it woul get rid of the autism!! He is an amazingly funny, sweet generous guy. We have a great time together! But if I could trade having a job with my friend Allistar, to just having my friend Allistar, I would in a heartbeat.

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    1. This fills me with hope, thankyou so much for thinking of writing this :)

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  11. just found you from a fb link. i like your ranting...i refer to my blog posts as rantings, good for you! i have a bi-polar disorder and i would give it up in a heartbeat. i try not to say 'i am bi-polar' it is not the definition of me. just part of what makes me, me. i tell everyone about it very casually, if it is relevant to the conversation. i don't shout it from the rooftops!! but, i do think it is good to let people know, because they can learn that i am so much more than my 'condition'. knowledge is power. it sounds to me like your son is a lucky boy to have parents that are so engaged in his life. i am glad i found your blog, i learned some things about autism today. thank you, scarlet

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  12. I did a blog entry about this forever ago...I decided in the end that it was probably just word conjugation. It all comes down to about the same thing (to me anyway).

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  13. I think that however you and your son refer to it is how I'll reference it with you. I think however my daughter and I reference it is how we'd appreciate you referencing it with us. Ultimately I don't really care one way or another except that I'm aware of it's sensitivity to OTHERS.

    So while I just try to be sensitive to the wishes of the people in the autism community who express a preference, I also don't tolerate people pushing their views on me. If that makes sense.

    Good post.

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  14. it pisses me off that I used "it's" incorrectly above. That's going to bother me all day. But it won't bother me enough to delete it and repost it directly. Also, I hate captcha.

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  15. I learned "person first" language to respect the person. So, 'child with autism' vs autistic child just like I would expect another medical patient to be 'woman with cancer' vs cancer patient.

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  16. I always stumble over Autistic when referring to my son. I guess "has Autism" means there is room for not having it sometimes. "Is Autistic" doesn't afford that luxury. Hum, I will have to think about this some more.

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  17. "And that may be true for them but if that's true for them then they are truly dealing with almost a completely different type of autism then my son."

    As the mom of an Aspie - I totally agree with you. My friend's son has classic moderate to severe autism. These kids are in two separate categories when it comes to autism (now, they both rank high in the "good looks" category, just saying...)

    He's your kid, therefore, the way you word it IS the correct way for your child. End of argument.

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  18. Are you surprised there's no real debate in these comments? I'm not. I think people are mostly supportive and less judgmental in autism circles - but I'm relatively new.

    What's really caught my interest in your post is the reference to two kinds of autism - beyond high functioning and classic. The "give it back" vs. "part of me" debate. (I've heard this before and find it fascinating).

    I'm in the "part of who my son is" camp - mainly b/c everything I've heard first hand is that autism is "pervasive" and there's no cure. Of course I want him to be accepted and I want people to accomodate his needs - he thinks, learns, and see things so differently that I feel the need to make people see his perspective. My hope would be that the world integrates these hearts and minds into our society and that we'd all be richer and better for it.

    On the other hand, I would probably give it back in a minute too, even though he has learned to speak/communicate, to make it easier for him to get through school and social situations.

    There's even a campaign "call it what you want, but don't call it autism" that I think refers to this "other" kind of autism... I'd be really interested to hear other's thoughts - esp. yours Autism Daddy!

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  19. Cute story first: My son is high functioning so he is highly verbal. He is also a huge Phineas & Ferb fan. The other day we were have a discussion about how difficult it is for him to make friends. Most of what we discussed were issues that are autism based, such as lack of eye contact and difficulty seeing another viewpoint than his own. At one point he stopped and shook his fist while saying to the sky "Curse you, Autism!" Thank you Dr. Doofenschmirtz for giving my son a cool universally understood way to vent his frustration with living with this disorder. It's so much better than his usual penchant for the F word, which also puts off potential friends.

    I use the two "labels" interchangeably because no matter how politically correctly or people firstly you state it, my son still has it and still deals with it and so do we. And I agree that without it, he'd still be basically the same kid. His sense of humor is amazing and so is his ability to find the fun and joy in any situation. The difference would be how much more other's would benefit from these traits and a dozen others he has. It's incredibly difficult to watch your child become increasingly aware of how different he is and how that can put off others.

    Fortunately, we have some incredible friends who are teaching their kids to appreciate our son and be patient with him. Interestingly, none of the kids use either term. They are much more concerned with him in terms of how this disorder affects him and them. They ask lots of questions about why he does or doesn't do things. They want to know how to help him or themselves through tough situations. And even though they get incredibly frustrated at times, they are the first ones to come to his aid (or defense) in situations with strangers. I love how they couldn't care less about the label, but rather look for ways to validate our son. But then they have days when they don't want to deal with it, and I completely understand. If I were 9, I wouldn't either...

    And even though having Autism in our family has made us all stronger and better in ways we would have never dreamed, if given the chance, I'd be soooo tempted to give it back. But that is a slippery slope I choose to stay away from.

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  20. I usually say "with ASD" or "has autism" but do sometimes use "is autistic". I'm not offended by the latter terminology, it's just that I prefer to stress that she's a person first and foremost. A person who happens to have the medical condition of autism.

    What does drive me up a wall is when people with HFA or Asperger's reject the search to cure autism. People with other medical conditions don't go around loudly and obnoxiously proclaiming that they are their condition and that they don't need to be cured. Or that they're "more evolved" or some other such B.S.

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    1. Very well said Crimson wife..!

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  21. I've seen the debates and I don't get it. My son has Autism, he is Autistic, or ASD if I'm in a hurry. SO WHAT ? I also noticed people taking offense to the "Puzzle Symbol" for Autism. Mostly from highly functional ASD that feel it shows them as not whole but as a part of, which is offensive to them. My son drawls ALL THE TIME, but he does not like being called an artist, drawling is his gift, he will tell you it's his talent, but he is not artist. He doesn't like the word, for what ever reason. I take strong offense to the "R" word and truely believe I can spew fire if needed. I guess it's your choice, use these words however your comfortable, just don't take offense or be judgemental towards others that don't understand your way of thinking. Because your defeting the purpose if we are fighting amongst ourselves.

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  22. The fact is what-ever you say or how-ever you say it, it still mean my child is special need and people are not knocking on my door to change his diaper,allow him to spit,hit,kick,slap,or outright attack them. His behavior will never be excepted as the norm so what-ever you need to say to make you feel better say it. I'm happy when he's not call retard.

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  23. Anonymous, that is perspective.

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  24. I say them both. Because if I have to actually explain.....
    Well, he is severely autistic and brain damaged from febrile seizures and also has a genetic disease called TSC....and and and.
    https://www.facebook.com/CaptainJacktastic

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  25. Must admint I had never really thought about how I describe my son - mainly as I rarely talk to anybody except him! He is high functioning but I would describe him as having autism as it is just one part of him, albeit a large part that I would happily cut out and get rid off given the opportunity.

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  26. You wrote this almost a year ago, and this thing is still getting comments! I just googled autistic vs. has autism, and your page was one of the first to come up. And I think what I've learned from this post is that I was worrying about offending people, when I should really be worried about how my kid's doing. Good show, old chap.

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  27. Seriously, this is a ridiculous debate. My son has autism, he is autistic. I use them interchangeably as well, and for those who want to tell me I am labeling him well pfooey on you! His autism does define him, but it also defines me because I am his autism mama! Just like I have brown hair, and geeky glasses. We live autism around here.

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  28. This comment has been removed by the author.

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  29. I do use both of these two terms. My son is autistic (exhibits the behaviors) because he has classic autism (the condition). Thoughts?

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    1. That's exactly the way I look at it, too.

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  30. I got it! Just use both terms it doesn't matter! Its America your able to say whatever you want! There end of story!

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  31. I guess I think those particular HF autistic people either don't understand or don't remember what it's like not to be able to communicate. They are autistic and quirky; my son is autistic and quirky AND non-verbal. No one will ever be able to convince me that it's a good thing, or "just part of his personality" that he can't communicate what he wants effectively. What IS a part of his personality is a desire for ultimate efficiency, he rejects the illogical. So I imagine that he would choose to talk if he could. But that's the problem, I can only imagine. He. Can't. Tell. Me.

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  32. I don't mind the words has autism or autistic. I just don't think it matters. Sometimes I hate the difficulties that I have with being autistic and sometimes I think there are good things. I can't imagine things that haven't happened so I can't imagine a life without autism. This dad should be allowed to say whatever he wants without people saying things to him. I do have a disability I need a lot of help and support from my family. Autism does mean difficulties but those difficulties are caused because I think differently from other people and I process the world in a different way.

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  33. Hi, just thought you might like to read this short article written by my 19 year old son who has autism/is autistic. The article is written for the Autism Daily Newscast and so is written in a journalistic style, but he did also post a blog giving a more personal opinion in which he states that there are more important things to worry about than the has autism/is autistic debate. We use the terms interchangeably to be honest :-) Jane
    http://www.autismdailynewscast.com/autism-and-the-use-of-language/12578/paddy-joe/
    Hope you like the article :-)

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  34. Call it what you want. It is what it is. Whatever gets you through the night. However I will say that my son's autism (very hardcore low-functioning) is a defining characteristic if not THE defining characteristic. It effects every aspect of his being so I tend to think of him as autistic. It isn't an illness or a disease it is fundamental to the way his brain and body function. I can't separate them. But at the end of the day who cares what I think or choose to call it? He certainly doesn't.

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  35. I go between the world terms all the time I didn't think it mattered and I 2 boys with Autism my oldest is high functioning and my youngest has severe. I guess I never paid attention to how it is supposed to be said it's what's comfortable for me at the moment

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  36. I use both terms. I have 2 boys with Autism one who is high functioning and one who has severe. I never knew there was a right way or wrong way to say it. I say what ever makes me comfortable with at the time. I never knew there was difference
    So much bigger things to worry about.

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  37. My son is high functioning only because he can walk and talk. But mentally he struggles.His Anxiety and Sensory are considered severe.He has to be home schooled,public places are a disaster. The meltdowns are the worst.My sweet son will never live on his own,get married,drive a car etc...We call what it is Autism.

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