Autism or autistic?

[thebighappyhouse]

Which term do you all use?

I always say that my son has autism....

And I don;t get all crazy with the labels either..pdd, pdd-nos, HFA, Aspergers..
to me it's all the same..autism.

I find that when I tell people my son has autism, they always seem to say "Really? He doesn't look like it."

Also, do you keep your child dx a secret or to you tell others?

I tell anyone and everyone..

Laura
Sonoma CA

[nclober]

I tell others as it comes up naturally in conversation. I definitely don't hide it but I try to let others see it's a part of our lives, not what defines our lives.

I tend to say my son is autistic. No real reason for it, it's just what comes out.

[Smith]

I say 'she is autistic' whenever someone tries to start a conversation with her and she doesn't respond.

[drhum]

My son is diagnosed Aspergers, but since that requires more of an explanation we just stick to what makes sense to people. As for autistic vs. autism (I think that's the question) depends on the context. However it fits in the sentence, I guess. I use both. Who do I tell? Most people who need to know already do. If there's an obvious issue, it might come up. If someone asks, I'm an open book. I don't begin conversations that way, but we don't hide it either. At 12, he knows and doesn't see it as a thing to be embarrassed by. There are times, like visiting the National Aquarium in Baltimore, where they make it easier for him if they know. Then I always make a point of telling. If we eat out in a restaurant, the wait staff will ask about his food (GFCF) and I'll answer the questions they ask. We have an autism licence plate. So yes, sometimes we tell. Sometimes it's not an issue.-Ellen

[josie]

It bothers me that the media is calling all the people who have autism, "Autistics". My son is a person first. In many ways he is like me and in many ways he is like my husband and in many ways he is his own person. Autism is treatable, he can and is learning every day to cope and function in this world. He is not "an Autistic", he has Autism. He is a sensitive, beautifull child and he is unique.

[thebighappyhouse]

It bothers me that the media is calling all the people who have autism, "Autistics". My son is a person first. In many ways he is like me and in many ways he is like my husband and in many ways he is his own person. Autism is treatable, he can and is learning every day to cope and function in this world. He is not "an Autistic", he has Autism. He is a sensitive, beautifull child and he is unique.

Josie..

I feel the same way about calling some autistic.
It just feels stange,....

[Pinning Down Autism]

I agree. Autistic implies describing who my son is. Autism is something that he happens to have. It may seem subtle but there is a difference.

[kmllc3]

My daughter is Dx PDD-NOS and I find most people have no idea what that means. If I am in a position where I think someone needs to know I say she has Autism.

[AuttieFamily]

:mad: I absolutely HATE the comment, "Really he doesn't look autistic" And I wish that I could think of some snappy come-back! (Thats ok, you don't look stupid) Ugh.

Ok, done venting, thank you

[jaynebyrd]

I have always used the term Autistic...I remember one plumber was here at my house when my son was still small and seemed curious about my sons behavior.The man thought I said ARTISTIC....and just rambled on and on. It was a humorous moment now that I look back on it. He said his grandaughter was a great drawer too. There are SO many terms as you said. Neils diagnosis was PDD initially and then a neurologist labeled him Autistic...the spectrum is one huge umbrella that is for sure.

[therearenolimits]

My son is a happy, energetic, funny 5 year old boy who happens to have autism. It is part of him it is not all that he is! I don't feel I need to tell everyone I meet as I feel no need to make excuses for him or explain his behaviour. I tell health care professionals to make it easier on my son but other than that I don't see a need.

[thebighappyhouse]

My feelings about telling people about my son is only done when a question is asked about him...

Or when he starts public school...I will not keep it a secret from anyone.
I truly believe that knowledge is power...If parents are going to judge him because he's "different", then I want to at least know WHY they are judging him.

I think if we want to break the sterotype of autism, we must discuss it openly and honestly.

When people say "he doesn't look autisitc", I reply with knowledge and compassion. Look, 6 years ago, I KNEW NOTHING about autism..and I would have jumped to the sterotype conclusions...so I am willing to give people a break and speak to them about all the types of autism...I do not get angry with the looks or the stares or the questions...I want to help everyone understand.

[Monica]

I use both terms...autistic and autism. An example over why I don't get all bent out of shape over WHICH is used is this:
I am very artistic........I love to draw, paint, sculpt, and just CREATE things. This makes me artistic....but in another context....I AM AN ARTIST. I am also musical....I am a musician. I believe autism and autistic are THE SAME EXACT THING.....it's how the word is used in a sentence. Just because a mother calls her child autistic doesn't mean she is devalueing her child. The whole "he's autistic" vs. "he has autism" thing is BEYOND silly in my humble opnion.....

[BonBon]

doesn't really matter to me...autism...autistic...healed...My favorite is 'overcomer'. ;)

[terriporter]

:mad: I absolutely HATE the comment, "Really he doesn't look autistic" And I wish that I could think of some snappy come-back! (Thats ok, you don't look stupid) Ugh.

Ok, done venting, thank you

Awesome, love that comeback! Will have to use that one! :)

[thebighappyhouse]

I use both terms...autistic and autism. An example over why I don't get all bent out of shape over WHICH is used is this:
I am very artistic........I love to draw, paint, sculpt, and just CREATE things. This makes me artistic....but in another context....I AM AN ARTIST. I am also musical....I am a musician. I believe autism and autistic are THE SAME EXACT THING.....it's how the word is used in a sentence. Just because a mother calls her child autistic doesn't mean she is devalueing her child. The whole "he's autistic" vs. "he has autism" thing is BEYOND silly in my humble opnion.....

I get your point Monica....:)

I just kinda like saying autism instead.

I was really kinda curious because I never use the term autistic..I always say autism.

[autismdiva]

I say I have an Asperger's dx (does everyone know these abbreviations, it it obvious what dx means here?). I say my ASD kid is on the autism spectrum. I have a license plate on my car that indicates either me, the driver, or the car, is autistic. I think of myself as autistic since the DSM may get rid of the distinction between Asperger's and Autism in the future.

Autistic describes the way I operate, on a deep level. I don't think I can separate autistic traits and brain functions from who I am. I don't get huffy about "have autism" or "is autistic" though, and I do use "has autism" and so forth sometimes.

[AirForceMom]

:mad: I absolutely HATE the comment, "Really he doesn't look autistic" And I wish that I could think of some snappy come-back! (Thats ok, you don't look stupid) Ugh.

Ok, done venting, thank you


LOL... this made me giggle.

I hear ya, and the people who say it think they are being nice. That's the sad part.

[emilysfolks]

This has always been an interesting question to me. The way I look at it is when a child has a cold nobody says that child is "cold" they say that child has a cold. Keeping this in mind I always say my daughter has autism. As anyone who reads my future posts will be able to see I am not a PC guy but when it comes to this I just don't ever want to define my daughter by this condition.

[mamasfive]

I never knew others felt the same way as I ,when people say he looks normal. How do you reply to that? I think people immediatly feel uncomfortable and say something they hope will make you feel better. I guess! :p

[Tripletmom]

I always use the term autism and never autistic. I understand what others have said, but I don't identify my son by his disability. I also don't tell everyone I meet about it. If it comes up in conversation, fine, but I don't usually tell people unless they need to know. When he isn't around and I am explaining why he is still in school or why he isn't in Kindergarten with his brothers, I usually say that he has special needs. People are always asking my other two sons if they are twins and they always correct them and say triplets, so the next question is always "where is the other one". My son is moderately/severely impaired, so if you observe him for a short period of time, it is obvious that he has autism.
Colleen

[heymiki]

While we are on this subject, you know what I hate...when you say, "My <son or daughter> has autism" and people look at you like you just grew horns out of your head. You stand there in uncomfortable silence for a few seconds and they say something stupid to the extent of, "Well, I just hate when doctors give kids all those diagnoses of ADD and things, all kids are the same if you ask me, kids these days need to stop being spoiled is all" and you just stand there dumbfounded at the person thinking...oh joy, now what...do I actually attempt to explain to this person or just smile and say yep and move on.

I cannot tell you how many times that has really happened to me. Or, you get those people that go, "Ohhh" and then look sorry at you like your child is growing two heads or something. :eek: :rolleyes:

If only we could hand over those people those signs for their necks that say "STUPID" HERE'S YOUR SIGN :D

I just want to say, "Believe it or not, my son has more intelligence in his little pinkie than you do in your whole body!" :p

[thebighappyhouse]

When it comes up and I tell someone that my son has autism..and you get the look or the I'm sorry..I NEVER get upset...because if what these people know about autism is Rainman or what you see on tv nowadays..the nonverbal/sever behavior issues..then of course they look at you with pity.
Because my son is mild..and "appears normal", it's a great learning opportunity for to share that not ALL kids with autism bang their heads and bit and spit and not look you in the eye or show no affection..some do and some do not. I am thrilled with the coverage autism gets now, but you sure don;t see enough of the milder cases..and I think that's what leads to the misinformation out there...

I never fault anyone for that...they just don't know. When I speak to people about it, I take it as my chance to give someone some information that they might not have.

I live in CA..maybe folks are more open to autism here..but I have NEVER run into anyone that would critize or call my child "spoiled".

[heymiki]

Laura,

It is not that I am not the sweetest person in person, I am more or less venting on here :o

99% of the time I am willing to explain myself, but in my mind I am thinking those things from the previous post. I just get so tired of the looks. My mother thinks I need to stop worrying what people think, but it is not that. I just feel like I am becoming more hard in fact. The more people stare the more I am becoming hard to what they are looking at and feel like saying rude things. I use to be nice and say, "Would you like to know about Autism?"...all sugar and sweet, but more and more I feel like saying bad cuss words to them. I am more of an advocate than how I sounded, so please don't get me wrong from my previous post :D :)

[tm4csons]

My son is now five and had intense ABA and now he seems "normal" to most people. What do I to people who ask if he was mis-diagnosed or maybe wasn't Autistic at all!! If they only knew all the hard work he has done in the last two years ! What do I say!!

[tm4csons]

doesn't really matter to me...autism...autistic...healed...My favorite is 'overcomer'. ;)
I am a mother of three teen boys and a five year old son who is overcomming Autism. Sounds like we can relate! Love to hear from you.

[BiomedMama]

I'll often say he's autistic. It's the proper form of the word and it's not saying 'what' he is -- it's a descriptive word, like saying my daughter is epileptic. Those words don't define them, they just describe them. It all depends on the situation though. Some people just don't need to know, so I use it when necessary. No shame here, but some people are extremely judgmental and if I don't have time to have a little educational speech with them, I don't bother starting it.

[billygoatsdad]

I would say My son is autistic more often than has autism but it does matter :D how the question is asked or why I need to give that answer. I know one father who says his daughter has Autism, because you wouldn't say a cancer patient is cancerous.

[thebighappyhouse]

Laura,

It is not that I am not the sweetest person in person, I am more or less venting on here :o

99% of the time I am willing to explain myself, but in my mind I am thinking those things from the previous post. I just get so tired of the looks. My mother thinks I need to stop worrying what people think, but it is not that. I just feel like I am becoming more hard in fact. The more people stare the more I am becoming hard to what they are looking at and feel like saying rude things. I use to be nice and say, "Would you like to know about Autism?"...all sugar and sweet, but more and more I feel like saying bad cuss words to them. I am more of an advocate than how I sounded, so please don't get me wrong from my previous post :D :)

I knew you were venting...:D

I just figure that to get pissed at people is giving them power over me...life is too short to let others dictate my happiness level.

I love my son..and to be quite honest, I have learned alot about myself having a child with autism.

[thebighappyhouse]

My son is now five and had intense ABA and now he seems "normal" to most people. What do I to people who ask if he was mis-diagnosed or maybe wasn't Autistic at all!! If they only knew all the hard work he has done in the last two years ! What do I say!!


just tell them the truth.

[princessoflaw]

I just had a conversation with someone who thought I said my daughter was artistic. It really was very entertaining. The person started talking about art and all of this and I never got a chance to tell him I said Autistic.

[galady3744]

I get that statement about my son not looking autistic all the time. He is HFA, so it is not immediately apparent to most people. Of course, spend a few minutes watching him and he will spin for you...lol...

So, my reply to them when they say he doesn't look like he has autism. A friendly smile and "1 in 150 kids are dx with autism. That many kids would look different...and, he is just one face of autism." I have never had a negative comment from anyone...actually, it gives me the opportunity to tell them a little more about it, because they seemed shocked to hear that number...

[eplourde1623]

Hello,

Both of my children have PDD-NOS. When the issue comes up in coversation, I tend to tell people that they are on the autism spectrum. Most people who are uneducated on the subject get that far away look in their eyes. I try not to discuss it because for quite some time now, autism has been my sole topic for conversation.

However, how can I not talk about it? In the not so recent past, my family including my sister and my mother were not educated and being they live in a different state and do not see my children, attempted to convince me that my children did not have any issues.

When my daughter first started exhibiting symptoms, at age 10 months, I received an entire array of unsolicited advice. For instance, did you know that if you read to your children every night they will naturally develop speech patterns? That was an outrageous claim, I read to my daughter every night and she still did not speak until she was nearly 3 years old and only in echolalia and robotic/scripted speech.

Oh yes, and the people that told me if I take my children out in public more often, they will become less sensitive and more sociable. What a bunch of mallarky.

At times, I think the outrageous unsolicited advice, as ridiculous as it is, is people attempting to be helpful. Therefore, I have resorted to only speaking about my children in a positive light. I do not let their autism define them. I let their individual personalities define them.

I explain to people that even though they have autism spectrum disorders, the diagnosis does not mean they are incapable. My children are the most precious people in the world to me. They keep me on my toes, bring an immense amount of joy to my heart, and there is no way in the world that I will allow autism run their lives.

We are all different, yet at the same time, we are all the same.

God bless each and every one of you in your quest to find and/or fund the research for the cure.

Ericka:)

PS;

Some people have told me that my children do not appear as if they have autism. Others have insisted there is nothing at all "wrong" with my children. They are right, there is nothing "wrong" with my children, they have an autism spectrum disorder.
Others have stated that they will pray for the cure. I thought great! Until in the next breath they stated they will pray for the cure so that my children can benefit and become normal. Wow - normal! They are not walking around with three heads, they have an autism spectrum disorder.

Sorry, that I am ranting, but whilst I am on the subject, has anyone ever had their children discharged from special education service only to have someone ask the most ridiculous question, "does that mean she is cured?" Come on now, autism has no known cure presently was my response. I also informed the person that they should go and read a book about autism.

It is amazing the amount of children being diagnosed with an Autism spectrum disorders. My children and their respective diagnoses are so amazing to me, that I decided to return to school at age 35, so I can earn my degree in psychology. My children have compelled me to believe in myself and move on to bigger and better things for them.


Thank you for reading my post and have a great day!

[AmyK526]

I took a series of workshops on how to best advocate for your child or anyone with a disability and they had made a big deal about saying "my child has autism" instead of "my son is autistic" because saying it that way makes it sound like it defines who he/she is instead of it just being a part of who they are. There is more to my son than that, even though sometimes the autism is all-consuming to my family. I never really had a problem with people saying "my son is autistic" but I did have a problem with people calling them "autistics".

[beddyrn]

RIGHT ON SISTER!!!! MY SON IS ENERGETIC. MY SON IS FUNNY. MY SON IS BRIGHT. MY SON IS MUSICAL. MY SON IS ARTISTIC. MY SON IS AUTISTIC.
HE HAS AUTISM !!!!
I WANT THE WORLD TO KNOW !!!! HOW WILL WE GET THE WORD OUT ABOUT THIS EPIDEMIC IF WE DO NOT SHARE ???
AUTISM IS OUR LIFE RIGHT NOW, BECAUSE OUR SON IS OUR LIFE.
I DON'T CARE WHAT YA CALL IT -- LET'S JUST GET THE WORD OUT!!!!

[TKforBen]

Hey all. I have used both terms, as one person said, as the context of the conversation calls for. Doesn't matter to me one way or the other. I can't say I have ever thought about it. I've had a few people say the "doesn't look like he is" comment over the years. I sometimes was mad, sometimes not - I think it would depend on the situation at hand - if my son was having a meltdown or playing and HOW TIRED I WAS at the time it happened.

Alot of how I reacted to a lot of people depended on how TIRED I was. Not so much now that he's older and easy to deal with. Also, anyone who knows us in my small community knows Ben is autistic. All who know him are kind and speak to him. Take care all. Have a good day!! TK:)

[Margaret Romao Toigo]

I used to say, "he has autism," and thought nothing of it because that is what I had heard others say and it didn't sound at all offensive to me. I have also always used "he's autistic," thinking that both phrases meant pretty much the same thing.

But just like most homosexuals prefer to be called gay/lesbian, and just like most people of African descent prefer identified by their ancestry rather than by a generic description of skin color; most autistic people prefer to be called autistic people/an autistic person; or simply, autistic(s).

The distinction is that "he has autism" suggests that autism is a disease, instead of a natural variation of human neurological wiring, which is what most autistic people see themselves as having.

I have also heard the opposite; that "he's autistic" suggests that autism defines who he is; rather than just being a part of who he is.

It's all very confusing, this political correctness; but a lot of it does involve identifying groups of people in the manner that they prefer, so I play it safe and call autistic people autistic.

[Smith]

It's not exactly....."....most autistic people..."

Some autistic people are so severely intellectually delayed, even sometimes profoundly intellectually delayed, that they have no concept of having a preference as to how they wish to be labeled nor are they able to grasp the concept of the origins of their suffering.

[field]

While we are on this subject, you know what I hate...when you say, "My <son or daughter> has autism" and people look at you like you just grew horns out of your head. You stand there in uncomfortable silence for a few seconds and they say something stupid to the extent of, "Well, I just hate when doctors give kids all those diagnoses of ADD and things, all kids are the same if you ask me, kids these days need to stop being spoiled is all" and you just stand there dumbfounded at the person thinking...oh joy, now what...do I actually attempt to explain to this person or just smile and say yep and move on.

I cannot tell you how many times that has really happened to me. Or, you get those people that go, "Ohhh" and then look sorry at you like your child is growing two heads or something. :eek: :rolleyes:

If only we could hand over those people those signs for their necks that say "STUPID" HERE'S YOUR SIGN :D

I just want to say, "Believe it or not, my son has more intelligence in his little pinkie than you do in your whole body!" :p


You said it! That's how I feel too!

[TKforBen]

What Heymiki just said reminded me of something that happened when my son was really young and I was getting his teeth cleaned. I usually had the same person do it everytime, but when I got to the dentist's office, I found out she wasn't there for some reason. So, I took a chance and had someone different do it. WHAT A DISASTER!! I usually sat him on my lap and we both leaned back so we could do his teeth. He was actually pretty good about it if I kept him in my lap. She didn't want to do it that way. I tried explaining it again and we haphazardly started getting the job done. Half way through, she asks me what the issue was with him and I said something to the effect that he was autistic.

So, in front of him and GOD, she says to me, "What is he, slow?" I said, "NO, he's not slow, he's quite intelligent", and then I got up and left. I got home and, of course, you always think of things to say afterward. I thought, I should have told her that he could think rings around her he's so smart!!!! Slow!!! Already reading, could count to 100, knew all his shapes and colors!!! Slow!!!!!! So, yeah, she was quite ignorant about autism, but she could have asked me what it was instead of adding to her ignorance with that comment.

Never went back and called after a few days (cause I had to cool down enough so I wouldn't swear at anyone) to speak to the "head" dentist. All he said was that if I wasn't satisfied with the cleaning, he'd give me one free cleaning for my son. I told him I didn't want a free cleaning, I wanted him to teach his people not to call "anyone" slow. Got nowhere!!

Boy, being on this site sure is bringing back memories to me that have been packed away in my brain. My son is now 16. Long time ago.

Have a good night. Take care. TK:)

[Stacey]

I decided to join the message boards after reading this one. I am glad someone asked... I really don't like hearing that my son is autistic, because he's a boy, a human being. I feel really offended by this, he has autism, but I don't want this to be the only way that he is identified. Yep, I'm pretty sensitive about this one, because he is so much more. There are some people who struggle with getting their child the diagnosis of autism because of the 'label' issues. For my son, getting the diagnosis was imperative to receiving his therapy. Yet, saying he is autistic somehow labels his entire identity, for me saying that he has autism is a way to explain why he behaves a certain way, and how he views and interacts with the world (which btw is actually pretty neat!). But, he is a boy first.
Thanks for bringing this up,
Stacey

[Stacey]

I used to tell everyone that my son has autism. I think it was because I was pretty thin skinned at the time and their looks and comments hurt me. Now I tell them if they need to know, sometimes if they are rude and I have it in me that day to educate. I think it was really difficult in the early days to cope with my son's meltdowns, help him cope with his meltdowns and try to educate others at the same time.. but I did. Then finally I just decided that all my energy needs to be with my son when he is going thru this, not with the people passing by. There have been some pretty awful public moments. It was really difficult to go from, your baby is so cute to 'what a monster, he needs a good spanking, that's what he needs" or "give me 1 day with that kid.." I would lose it.. but really, what benefit did that have for my son in those moments?

Now, I have learned to have joy and appreciation for my son's eccentricities (it's a bit harder to have with his meltdowns..). He's such a silly little man, and when others look at him strangely, sometimes I just let them wonder... unless they need to know, or I require some compassion in the moment! I refuse to keep him out of the malls, or restaurants because of other people not understanding or not liking to be around people who are different. I want my son to have the regular experiences of life, (and he loves shopping btw!) and other people need to deal with it. I wish more people brought their special needs kids out and about, but sadly I know many people who wouldn't dare.
Thanks,
Stacey

[Tami]

I absolutely HATE the comment, "Really he doesn't look autistic" And I wish that I could think of some snappy come-back! (Thats ok, you don't look stupid) Ugh.

Ok, done venting, thank you


Funny I have used that reply. I figure if they are gonna be stupid might as well label them right. :)

Remember darlins...KEEP YOUR SENSE OF HUMOR!! Don't get all wrapped up in labels, it will just waste good energy that you could be using with your kids..:)

[josie]

I got a flier at the Arizona Summer Institute of Inclusive Practices. It made some important points about People First Language. I am not quoting the whole flyer but some of the important points. "Eliminate generalizations, assumptions and stereotypes by focusing on the person rather than their disability. People first language refers to the individual first and disability second. It is the difference in saying, "autistic child" and "a child with autism". "Never equate a person with a disability such as referring to someone as retarded or epileptic. These labels are simply medical diagnoses. Use people first language to tell what a person has not what a person is. Emphasise abilities not limitations. Say for example, "a man walks with crutches" instead of , "he is crippled. Avoid negative words that imply tragedy such as afflicterd with, suffers, victim.

[lovingthem]

But just like most homosexuals prefer to be called gay/lesbian, and just like most people of African descent prefer identified by their ancestry rather than by a generic description of skin color; most autistic people prefer to be called autistic people/an autistic person; or simply, autistic(s).

The distinction is that "he has autism" suggests that autism is a disease, instead of a natural variation of human neurological wiring, which is what most autistic people see themselves as having.


I really appreciated this post. I do feel sometimes if I say, "He has autism," people act more like it's something they can catch because they are uneducated about it. When I say, "He is autistic, it seems they just accept it as an individual issue that explains why he acts the way he does.

My way of thinking is that it is not a disease or "bad" thing. It is a different process of thought. Thought processes can sometimes be altered whether you have ASD or are NT. My children don't have some freaky disease that must be cured or else their quality of life is less.

"He was diagnosed with autism," sounds more clinical and scary. Ultimately, I can't tell my NT 5 year old about a diagnosis. But I can tell her that little Ron licks her dolls because he's autistic. I think both sides have a valid point, and I think parents should do whatever they think is best.

I would really love to get Hellen Keller's view on the subject of autism.
Maybe it's not about us making them adapt to our world, but us facilitating a path of communication so that they can be themselves within this world.

Side note: My son and daughters are their names, not their attributes or qualities.
My son RonDavid is smart, handsome and autistic.
My Daughter Diamond is beautiful, an awesome singer, diabetic and auditory processing delayed.
My Daughter Sunshine is sweet, bright, fiesty and autistic. I don't think that's negative.

I think some people are in denial. I think some people want to hide that their children have autism. But you know what. I'm a proud parent of autistic children. It goes without saying that I hold my head high when he licks the grate at Wal-Mart, or she walks up to people and tells them they smell. :)

[Lucas McCarty]

Agree with Marge, most Autistic children can talk so they can be asked what they prefer and most do prefer to be called Autistic. I'm a Autistic British Secular Agnostic conservative(with a small c) person.

Not a personally conservative(with a small c) Agnostic Secularist Brit with Autism. Notice though how neither term restricts me at all as being defined by only one thing? I can still be lots of things as an Autistic or person with Autism. Person-first langauge though is not used for certain people though: women are not 'people with femaleness' nor are blacks(in the US they are called African-Americans but in the UK they prefer being blacks it seems) 'people with blackness'. I've been told that for some reason comparisons with gender and race are inappropriate for Autism, even though those are distinctions which have also once been socially-accepted as inferior. Homosexuality would be the closest comparison: it's been in the DSM and there are still plenty of religious people that see it as a disease a person needs to be cured of; like Autism then, much abuse has been done in the name of finding that cure(Lovaas Femine Boys project to name one).

[DaisyMama]

This issue came about with "people-first language."

For example, if someone says "a blind girl," your brain focuses on the word "blind." If they say "a girl who is blind," your brain focuses on the word "girl." One way puts attention on the disability, and the other way puts attention on the fact that she's a person.

The same goes for "an autistic person" or "a person with autism." My daughter is a person first and foremost -- a daughter, a sister -- and I want to keep the focus on that. So yeah, I say, "she has autism." If someone says, "she's autistic," I don't correct them, because I'm not militant about it. But when they registered her for the nursery at church, they wrote down that she "is autistic," so I asked them to phrase it differently on her nametag. The lady apologized and asked why. I don't think I explained it very well, though.

"She's autistic" makes it sound like that's who she IS. "She has autism" makes it sound like that's one aspect of her character. At least to me. And when we talk about her, we use the people-first language, because she is a person first, and her autism is only a small part of that.

My two cents'.

[tomandcarri]

I get asked all the time, because DJ looks "typical" or in other's words, "normal" ... I always ask them how do you define normal?
As for the Autism vs. Autistic ... I use autism, just because.
I have people question me about the autism, if I've had a second opinion, etc. and I just ask them if they would like copies of the thousands of dollars worth of therapy bills that has helped DJ get where he is today.
That usually stops the conversation right there because people don't know what to say when I offer the receipts! LOL

[spydyee]

In the autism community This is the general terminology.

The "disease" "difference" or whatever the heck you know is Autism. We say Autism Awareness not Autistic Awareness

Neurodiversity is the term used to describe the way we view ourselves. Our brains are wired differently (for whatever reason) so we are neurologically different from what is considered 'normal' therefore we are neurodiverse and neurodiversity is good.

Most of us subscribe to Jim Sinclair's concepts about people first language. in other words we don't like it and we don't use it. Just google Jim Sinclair and you can read all his writings.

With regard to people first language he said:

I am not a "person with autism." I am an autistic person. Why does this distinction matter to me?

1) Saying "person with autism" suggests that the autism can be separated from the person. But this is not the case. I can be separated from things that are not part of me, and I am still be the same person. I am usually a "person with a purple shirt," but I could also be a "person with a blue shirt" one day, and a "person with a yellow shirt" the next day, and I would still be the same person, because my clothing is not part of me. But autism is part of me. Autism is hard-wired into the ways my brain works. I am autistic because I cannot be separated from how my brain works.

2) Saying "person with autism" suggests that even if autism is part of the person, it isn't a very important part. Characteristics that are recognized as central to a person's identity are appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about "male" and "female" people, and even about "men" and "women" and "boys" and "girls," not about "people with maleness" and "people with femaleness." We describe people's cultural and religious identifications in terms such as "Russian" or "Catholic," not as "person with Russianity" or "person with Catholicism." We describe important aspects of people's social roles in terms such as "parent" or "worker," not as "person with offspring" or "person who has a job." We describe important aspects of people's personalities in terms such as "generous" or "outgoing," not as "person with generosity" or "person with extroversion." Yet autism goes deeper than culture and learned belief systems. It affects how we relate to others and how we find places in society. It even affects how we relate to our own bodies. If I did not have an autistic brain, the person that I am would not exist. I am autistic because autism is an essential feature of me as a person.

3) Saying "person with autism" suggests that autism is something bad--so bad that is isn't even consistent with being a person. Nobody objects to using adjectives to refer to characteristics of a person that are considered positive or neutral. We talk about left-handed people, not "people with left-handedness," and about athletic or musical people, not about "people with athleticism" or "people with musicality." We might call someone a "blue-eyed person" or a "person with blue eyes," and nobody objects to either descriptor. It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person. I know that autism is not a terrible thing, and that it does not make me any less a person. If other people have trouble remembering that autism doesn't make me any less a person, then that's their problem, not mine. Let them find a way to remind themselves that I'm a person, without trying to define an essential feature of my personhood as something bad. I am autistic because I accept and value myself the way I am.


Copyright (c) 1999 Jim Sinclair



Therefore we will use terms like Aspie for those diagnosed with Aspergers and Autie for anyone else. Girls with Retts often call themselves RettGirls, RettAngels or as Kassianne Sibley calls herself "rettdevil" (She can be rather 'In Your Face' about accepting her neurological differences and respecting them.) Most of us have seen society try to divide the community so we have been slowly moving toward referring to ourselves as Autistic regardless of the "kind" of autism we have. Now I often talk about my family's various types of autism as 'flavors' So I will say I am Autistic(Aspergers Flavor IQ 148) I do the IQ thing just to be rude! I know it is rude but I am sick of being talked to like I am a 2 year old by people that are not Autistic and think they can tell me about how it is to live as an Autistic. Some of us with kids that are Kanner's Autistics will call our kids Kanner Cuties. As long as you park the people first language you won't offend the autistic community. Now I can't speak for all the people that want to wrestle their children away from the big green hairy monster of Autism. i don't know how they feel about their child being autistic as compared to a child with autism. If they do not see the autism as a part of their child then they may not like their child called Autistic. For the most part I have only seen that attitude in the most extreme "curebie" parents.

[DaisyMama]

As long as you park the people first language you won't offend the autistic community. Now I can't speak for all the people that want to wrestle their children away from the big green hairy monster of Autism. i don't know how they feel about their child being autistic as compared to a child with autism. If they do not see the autism as a part of their child then they may not like their child called Autistic. For the most part I have only seen that attitude in the most extreme "curebie" parents.

This is a lot of good insight! Thanks for sharing your perspective with us. As far as people-first language goes, I will do some more reading of Jim Sinclair. Thanks for sharing the excerpt that you did.

With my own child, I prefer people-first language, not because I want to separate her from her autism, and not because I see it as something apart from her ... but because I want other people to remember that she's a little girl first and foremost. I don't want to tell someone she's autistic and have them see her dx instead of seeing HER. I say she has autism, because I want them to see that that's NOT all of who she is. Sure, it might color everything she does ... but who she is is so much MORE than her dx. She's not limited by it. She's not defined by it. It's one more aspect of who she is.

So my own choice of phrasing is not because of my own perspective on autism; I don't say "has autism" because I want to separate it from my child. I say it because I want OTHER PEOPLE to see past it to the heart of my little girl. I don't want them to look at her and see only her dx and think that's all they need to know about her. I want them to see her personality, her sense of humor, her beautiful smile, her pretty blue eyes ...

Anyway, that's my opinion. I will certainly do some reading on the subject. If autistic people in general prefer to be called "autistic" and not be described as "having autism," then that's what we should ALL do. Who are we (NTs) to decide how to refer to autistic people? If they have a preference, we should respect it and honor it.

[beddyrn]

lovingthem
thank you -- that is the point i was trying to make

[Lucas McCarty]

The thing is that if I'm a British person, does this mean I am less of a person? It doesn't, so why change the rule when it comes to being Autistic?

[spydyee]

So my own choice of phrasing is not because of my own perspective on autism; I don't say "has autism" because I want to separate it from my child. I say it because I want OTHER PEOPLE to see past it to the heart of my little girl. I don't want them to look at her and see only her dx and think that's all they need to know about her. I want them to see her personality, her sense of humor, her beautiful smile, her pretty blue eyes ...

Anyway, that's my opinion. I will certainly do some reading on the subject. If autistic people in general prefer to be called "autistic" and not be described as "having autism," then that's what we should ALL do. Who are we (NTs) to decide how to refer to autistic people? If they have a preference, we should respect it and honor it.

As a mom of autistic kids I fully understand what you are saying and I used to say the same thing. But as someone else posted if you say it like it is a disease then they treat your child like they have something they can catch and that is worse than seeing the child as the Dx. They are going to see the Dx either way as long as you use it at all and if you don't use it then they expect her to act like an NT child and she is not (for whatever reason medical or genetics). She is one of us. She is a "little sister" to all of us. She is autistic and we love her and you love her. We just have a different perspective about how to best demonstrate that love because we know how we have felt and how the autistic mind wraps around language. It is a very different process from the way the NT mind processes language. We do some interesting communication based training at the foundation here and you would be surprised how vastly different the perceptions of what a person is saying varies between Auties and Aspies alone and when you throw a couple of NTs into the mix, communication goes right out the window! The one thing that the Auties and Aspies agree on without a doubt is the ditching of the whole people-first "crap" with the language. Fewer words are better particularly when they are more accurate. The whole people first thing actually developed among the physically disabled and I see their position. I HAVE Systemic Lupus I AM Autistic. My SLE is devastating to my life. I deal with serious depression issues because of my SLE. My Autism is just the way I think. I am a person with GERD. I medicate that so I don't develop esophageal ulcerations. I HAVE Sensory Integration Dysfunction and when I cannot avoid public appearances I medicate that. They are not a part of me as a person. I guess my perspective is that if I have memories of my life without a particular Dx affecting my life whether I was diagnosed or not(I had Lupus 3 years before we got it diagnosed) then I HAVE whatever it is because I existed without it. If I cannot place a single memory of my life without the effects of the Dx then it is a part of me and I AM that Dx. So with that being the measuring stick. Then I AM an Autistic woman WITH Systemic Lupus, Sensory Integration Dysfunction, and GERD. I don't have a lot of memories without the SID but I do remember it was less pronounced when I was younger. Puberty was when i really remember the sensory issues becoming problematic. The older I get the more it devastates my life. I am thinking that I may have been "passing" by suppressing stimming behaviors that help release the pent-up energy and diffuse the sensory issues and now it is catching up with me. I stim only at home and therefore I have to have help to lessen the neurological overload I experience when out in public so I medicate using a variety of prescription medications under my doctor's supervision so I do not develop addictions to any one drug. Sometimes we use mild narcotics while other times we use Neurontin. By rotating them and only using them when I go out into unfriendly environments I don't wind up being strung out and unable to be a parent to my children. I hope this helps you see things from our perspective. Remember, your daughter hears and understands what you say. She wraps her mind around language like any other autistic. So think about what she is hearing you say about her. Put more focus on how your kids process what you say about them whe you speak to people about them while they are present. Don't worry about what the world thinks of them right now. We adult autistics are working to change the world perceptions of all of us so our little "brothers and sisters" won't have to live in the same world we have lived in for far too many years. You have been blessed with one of us. Love her, acknowledge her as who she is, teach her, build her sense of self-worth and help her to be the best Autistic person she can be. Let us fight the battles of tolerance and understanding. We are here to help you. Just ask.

[thebighappyhouse]

I guess then, you should use the word that you are most comfortable with.

:D

[DaisyMama]

Thanks, spydyee! What a great response!

You've definitely given me some things to think about, and I'll have to reconsider how I describe my precious little girl from now on.

[volunteerkelly]

When I explain that Geoff (or myself) has Asperger's, the most common remark I get is "you need to stop making excuses for him/yourself". I wish I could peel open my skull to show them that while I may look 'normal' on the outside, my brain is wired differently than theirs! I am able to do anything they can, I just get there on a different path, there is nothing wrong with that.

I try to tell them that I am not trying to make excuses, I am merely explaining why I need to do things a certain way. Usually this falls on deaf ears, I guess this must mean that they have a hearing problem????

I LOVE the comment " really, you don't look stupid..." I will have to try that next time, maybe that will work better. :)

[ericsmom]

When describing my son, I like to say, my son is a really handsome, smart guy who happens to have autism. I remember being at an autism conference a really long time ago, and the woman who was speaking brought this particular issue up about describing your loved one who has autism. She said remember, they are people first, who happen to have autism. That just really stuck with me.