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Autism vs. Autistic…There’s a Difference August 27, 2008

Posted by hopeauthority in Autism, Children, Family, Health.
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I have a son with autism.  I do not have an autistic son.

Time to air one of my pet peeves. I hate the word “autistic”–not that I love “autism”, mind you–but there really is a difference between the two terms…

One is a label. The other is a trait.

To say you have an “autistic daughter” implies that that is all she is–autistic.  That she is defined only by her autism. But, isn’t she really much  more than that? Of course she is.

However, if you say you have a “son with autism”, you don’t allow the disability to define the child. Autism becomes a trait, like hair or eye color.  Just one of the many traits that make up the whole child. The whole wonderful, challenging, beautiful, challenging, loving, challenging child. (Did I mention challenging?)

Seriously though, how people will respond to your child may be influenced by the words you use to describe his place on the spectrum. So, choose carefully.

I have a son with autism, twinkling green eyes, long brown hair, the cutest smile, an infectious laugh, and an apparent lifelong obsession for the freakin Wiggles. Not an autistic son.

See the difference?

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Comments»

1. asdmommy - August 27, 2008

I struggle with this too, and always used to say “with autism.” But then some adults “with” autism told me that saying “with” implies that autism is something you have, a disease or a condition or a disability, instead of something you just are (autistic). Not that it’s all that they ARE. But their point has been that it’s NOT a disease, condition or disability, it just IS a trait. So I still struggle with it, because I do think MY son has medical based autism (as in, a “disease”). Not necessarily a disease that can be cured, but a medical issue nonetheless that affects his brain.

So now I use both. :-P

2. Karen - August 27, 2008

Excellent point! Labels are one of the cruelest forms of self-protection that we use. It defines our connections by sorting them into “those like us” and “those different from us”. And it prevents us from ever knowing “who” another is by first judging “what” we believe them to be.

3. DrM... - August 27, 2008

Thank you for expressing yourself and educating the rest of us on autism.

When my son had seizures from age 3-5, people,even doctors, would say, “he’s epileptic” or ” he has epilepsy” and we would say, “no he occasionally has seizures.”

Since age 5 he has not had any seizures despite what some told us about “epileptics.”

We did not label him, so today that is not how he is defined.

4. tiredmama - August 27, 2008

Thank you for putting that out there! I believe in the difference, too. I have a son with autism, and it has always bothered me when other people refer to him as autistic because that is not all that he is. Thank you! :)

5. hopeauthority - August 30, 2008

Thanks everyone for your input.

ASDmommy’s post was particularly interesting in that I hadn’t really considered how an ADULT with autism was affected by the different uses of autistic vs. with autism. (A 6 year old with autism kinda keeps me in the here and now…)

Maybe when we speak of our young children, we are bothered by terms that seem to be labeling-like “autistic”. Maybe it’s just our natural instinct to protect them in their young and vulnerable state and to get defensive (even unintentionally) when the terms others use to describe our special children rub us the wrong way.

It’s good to remember that as these special children grow into special adults, they will have their own preferences about how they choose to be defined by the world around them. Maybe we just need to love them, guide them, and get them connected to that world –so THEY can grow up to tell US what they prefer.

Johnny - May 20, 2009

WELL put… The idea of my son growing up and expressing his opinion on the situation brought tears to my eyes. Thank you.

hopeauthority - May 20, 2009

Hi Johnny. Thanks for weighing in. It’s been awhile since that post, and I have come around quite a bit since then. I’m more open to either reference, thanks in part to readers’ responses like yours. Best of luck with your son.

6. oxoxjmariexoxo - August 30, 2008

I am so jumping out of my chair right now! Okay well I’m on the couch, but same difference. Why, you ask? I just asked this in one of my posts. I was wondering which term is politically correct or just purely correct because I have read that some parents say “with” some say “Autistic” and it is very very confusing to the newbies like myself. So I truly appreciate this post. And love your site! You have only posted a few things and I am already a fan! The other post about vaccines is one I was going to post up next as it is so in the news, in your face, and all over the place nowadays. Again thanks!

7. asdmommy - September 1, 2008

Hopeauthority, yes, good points, and ultimately the most important is your last paragraph of your reply.

I was never aware of any issues until I started blogging and found some adult bloggers who educated me! I still struggle a bit with using the word “autistic” and tend not to use it in reference to my own child. What really gets me, however, is not the “he is autistic” wording, but the “he’s an autistic.” That one bugs me. But overall, I don’t have a problem with the label itself and disagree that it “defines” people in a negative way. Perhaps I see things through rose colored glasses…

It’s all interesting, for sure. Never a dull moment! :-)

8. Erin - September 8, 2008

I found it so interesting to read everyones comments and opinions on this matter. I am a therapist who provides ABA services to children with autism, primarily EI and preschool aged, and this reminds me of one of the first lessons I learned when I began my schooling. My first special education course was taught by an elderly nun (it was a Catholic college) and she set our class straight on the first day. She told us “you can learn everything there is to know about a disability- the statistics, the possible causes, treatment options, how to teach students with a specific disability; BUT, if you lack the ability and compassion to seperate this child from their disability, to show them the same respect and to help them strive to reach their fullest potential, just as you would a “typical” student, then you will actual do the child a disservice. ” She went on to say that in her class the only way we are to refer to our students we are discussing, is as “a child with autism”, “a student with a disability”, etc.. And this is a lesson I have carried with me through my teaching career. I don’t know if I ever would have thought to say it this way had she not pointed it out.

9. hopeauthority - September 10, 2008

Erin: Thanks so much for providing a therapist’s point of view on this issue. What a wise old nun! I LOVE her advice! She so eloquently pointed out what was bugging me about the use of the two terms. If more people had the ability and compassion to separate the child from the disability, the world would sure be a better place!

10. FatherOfOne - September 10, 2008

While I can understand the heart behind your post, I do have to counter that using the term “autistic” in no way implies or defines a limit to say that the person exibits no other traits. To say someone is “artistic” does not say that art is the definition of who that person is, but merely describes a trait of that person as being exceptionally gifted at art.

If the word “autistic” is analyzed for its etymology, it would mean “exibiting the traits of autism”, so saying “autistic” is merely saying “with autism” in fewer words. I can say I have a two year old daughter, but that does not imply that she is merely 2 years old at the exclusion of all of her other charateristics, abilities or disabilities.

Shouldn’t we all focus more on helping the world understand Autism itself rather than picking at words?

11. Cliff - September 10, 2008

Just out of personal interest; could you please explain exactly why the stigma is being worse when the “autistic” usage is preferred, as opposed to “with autism”? What makes the difference any less a personal quality than before?

I’m asking as a high-functioning autistic who has always found the usage of “with autism” to be far worse. It seems to me personally that it’s, if you will, a mechanism of acceptance by exclusion; that one has to blatantly ignore that the individual is autistic for him/her to be ok. But I’m asking with an open mind.

12. hopeauthority - September 10, 2008

Thanks for recognizing my heart.

True, linguistically the difference is just semantics. However, many people do feel strongly–one way or the other–about using these terms interchangeably.

I suspect those feelings may have something to do with society’s generally negative association with “autistic”…as opposed to its generally positive (even desirable) association with “artistic” and its generally neutral association with “being two”.

And before everyone jumps on me for saying that there is a generally negative association with autism in society, I don’t mean negative as in bad…just not warm and fuzzy..not positive..not my kid, please God, etc.

I would love to educate the world on autism itself. I hope that this blog will do that at times. But to me, part of understanding autism itself is realizing that, for some of these special people, how you refer to them matters to THEM. And one of the biggest hurdles in autism education seems to be getting people to realize that our kids have feelings and, even when they can’t speak, they do understand everything that’s being said about them.

So maybe understanding autism itself needs to start with an understanding and respect of the feelings of the child or adult when choosing words or labels to apply to them. Then we can proceed from there. Just a thought…

13. hopeauthority - September 11, 2008

Cliff: Thanks for weighing in on your reasons for preferring “autistic” over “with autism”.

The responses so far (mostly from parents and therapists) overwhelmingly prefer “with autism” to “autistic”, although one responder noted, interestingly, that autistic adults she’d encountered preferred “autistic”.

It’s hard to explain exactly why this difference in terminology seems to bother so many parents. Maybe, as its been noted, it has something to do with society’s use in a negative way of the term “AN autistic” that has so many turned off to “autistic”.

My guess is that it comes from that place inside a parent’s heart that is blindly and fiercely protective of their child, especially one who is arguably more vulnerable (at least as a child) than child without autism. And in this heart, parents wish their child could go through life without any extra challenges..including those that come with lower-functioning autism.

Autism is one part of what makes my son my son. Sadly, the people who see him and love him and accept him for all that he is are few in comparison to those who can’t see the wonderful boy beyond the behaviors. And that bothers me to no end.

So I end up like many parents…between a rock and a hard place. On one hand, basically wanting the autism to “go away” at least to the extent that my son can become high-functioning and “mainstream” and have an independent life..and using every available resource to get him there. And on the other hand, wanting people to accept my child as the whole child he is–autism and all–because he is such a beautiful and loveable child.

So the use of these terms will be semantics for some and personal preference for others…the basis of which is hard to define.

And while we may not always agree on which term should be used and why, I think we can agree that –if we have a preference–it has been shaped by the journey we are on.

Cliff’s journey is different than mine. I can only try my best to understand his life as an autistic adult and he can only try to understand mine as a parent of a young child with autism.

The roads we are on are not the same, though they are in a similar neighborhood. Maybe my son will travel on Cliff’s road someday.

So thanks again Cliff for sharing your insight and for being the voice of the future for some of our kids.

14. Anne - September 23, 2008

I have two children who are autistic. I have five children who are brunettes. I have 2 children who are girls. I have 3 children who are boys. All of these sentences say something about my children. None of them say everything about my children. Saying that 2 of my boys are autistic doesn’t mean that it’s all they’re about. And that someone would hear that and hear that my child is all about autism says more about them than me, or my boys.

In short, it doesn’t bother me.

15. DrM... - September 26, 2008

Nicely put Anne.

How is it homeschooling 5 kids?! Some days my wife and I pull our hair out over only 2.

Dr Marks
http://www.healthybeyondreason.wordpress.com

16. athenivandx - November 18, 2008

As an autistic adult, I prefer “autistic” as opposed to “with autism” by far.

Ivan

one of three personalities sharing a blog

the other two are The Integral and Athena.

17. Johnny - May 20, 2009

I’m preparing to write an article for a non-profit, and in doing so I’ve spoken with many autistic adults (or adults with autism). Surprisingly, amongst the 50+ that I’ve spoken with an emailed, an overwhelming majority prefer to be referred to as ‘autistic’ as opposed to ‘has autism.’

I can see both side of the argument I guess, but I have asthma; therefore I’m an asthmatic. My father has diabetes, and refers to himself as a diabetic. With those labels, nobody assumes that these labels define ALL of who we are, why is autism different? I mean, I suppose it very well could be the case, but why?

My personal opinion: I agree with Anne, it doesn’t bother me either way. Although when someone tries to correct me when I’m talking about my own autistic son, that DOES bother. If that’s what you hear and what you focus on when people are talking, then you’re paying attention to all the wrong details.

18. Sophist - May 5, 2010

If I considered “autism” as only traits of impairment, then yes I would have a problem with calling another person “autistic”, because every person has abilities and disabilities, autistic or not. But since autism is not just the bad but the good and the neutral– an entire profile– I don’t take so much issue with it. More normally I will refer to someone as autistic unless they ask me otherwise, in which case I will happily oblige to refer to them as they wish.

hopeauthority - May 9, 2010

Its time, and responses like yours, that have softened my stance on the issue. I still don’t really like autistic, but it bothers me less now. Thanks for your input.

19. Why We Heart Dirk Hayhurst | Bus Leagues Baseball - February 4, 2011

[…] from his use of the word “autistic” – I’m more of a “people with autism” guy – I love what he has to say here. I’ve worked with people with special needs […]

20. autisticparent - March 14, 2011

Firstly, my nom-de-plume was put together without much thought. I blog about my daughters who are autistic and wanted a name that got across the fact that my blog was to do with autism and parenting. Anyway. I don’t have a preference on this. I always feel that it’s the attitude of a person that counts far more than the name you use. Saying ‘with autism’ or ‘autistic’ doesn’t matter much if the attitude of the person is poor. I think we can get tied up with semantics sometimes, and that’s not the most important thing.

21. Joseph Bayot - May 23, 2011

Thanks for teaching me about this distinction! All your points make so much sense. Kudos for your awareness and your blog post about this peeve.

hopeauthority - September 30, 2011

Sorry for the late response Joseph. Serious illness of 4 months in ICU for my father in law…
Thanks for stopping by the blog. Over the years since that post, I have “softened” a bit on my stance, though I still prefer autism over autistic. The whole thing about living with autism in the family is that everyone changes by the experience. Some pet peeves get replaced by others!

22. Kellie - November 10, 2011

I am a mother of a four year old with autism. If he decides he prefers the term autistic when he is older more power to him. I use “with autism” or “has autism” so that people who are not educated about it see that there is more to autism than rainman…no one looking at or observing my child would think rainman…but sadly, that’s what many well meaning people still think of first when they hear “autistic”. I have had people ask me what his special power is….what? So, I feel that if I use my preferred phrases it helps people see him as a person first with quirks second. If other parents want to say their child is autistic over with/has autism that’s fine. I think at the end of the day attitude is everything. I have a positive attitude about my child. He is wonderful. I love that he wakes up really excited and ready to go. I love that he is genuine…there is no faking that kind of sincerity (when he tells you he loves you he means it) and when he’s happy to see you, you get a screeching knock you over bear hug. I love that I get to appreciate every baby step of progress and development he makes…many parents over look things. This week we finally discovered that it’s ok for books to have plots! Hooray! Of course, he’ll only let me read “The Very Hungry Caterpillar” but still… If he takes a bite of any new food I want to cry because it’s that exciting. I also have a typical two year old. I want him to know that his big brother is just that…his big brother. Having a diagnosis doesn’t change who he is…he’s still the same kiddo. So we’ll say “with/have” autism until my son says otherwise. I will respect his decision. But for now I want the focus on him first….autism second…or even third or fourth. :)

hopeauthority - November 11, 2011

Kellie: I love your outlook, and I feel the same about the with/have, and with my son making his choice later. Special power??? Wow. My boy’s 9 and I’ve never gotten that one! My jaw would probably hit the floor!. The milestones certainly are worth big time celebration and are never taken for granted. And those phases of break-throughs…which I’m lucky enough to be enjoying right now…are euphoric! At least you’ve got “The Very Hungry Caterpillar”. How would you like to be me with “Walter the Farting Dog”?! Thanks for coming by!

23. dml.vs.asd - February 20, 2013

my son was diagnosed with moderate to sever autism at age 2 but now he is enrolled into a class called “reach”. it is 2 hours a day monday-friday. but my question to any one who has a child whom is labled as “AUTISTIC” how did you react to finding this trait has been
carried to your child?

hopeauthority - February 20, 2013

Hi: I guess my reaction was the typical shock, denial, anger, fear, grief reaction. Still working on acceptance after 9 years, but will never stop trying to find holistic ways to help him be the best he can be. I personally don’t believe in the “carried trait” theory in all cases, though in families with multiple generations or multiple siblings having autism I do. I think certain kids may be suseptable to autism and that in those kids who are, some trigger occurs that sets it off for that child, whether it be a vaccine or an environmental issue. Again, my personal opinion only.~Tracey


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