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Climb off your high horse already

Warning: I’m venting a bit here. I’ve had a really bad week and I’m sick and tired of being judged/corrected by people who are supposed to understand. I really don’t understand why people can be so intolerant of another person’s choice to refer to their own child as Autistic. I have been corrected many times by people who are offended by me referring to my own kids as being Autistic. Are we really that petty? 

 

As a father to 3 Autistic boys, I’m sensitive to the words people use to describe them. I have called for the removal of the word “retard”, so as not to be used to describe person’s with special needs. However, I have noticed a growing, arrogant and judgmental trend within the community itself.

There are people going around policing (for lack of a better word) blogs and comments and correcting the use of the word Autistic. I have personally been approached (and by approached I mean more like attacked) by people for referring to my own children as being Autistic. I know this isn’t isolated to just me as I have heard from many other people, sharing a similar experience

A blogging friend of mine ran into this same situation recently over her choice of words and it got me thinking about all the times this has happened to me. I have learned to kinda brush it off. However, I’m left to wonder why are people so easily offended by something like this? Why do they feel the need to openly criticize other special needs parents when we are all supposed to be on the same side?

When I talk about my kids, especially on this blog I refer to them as being Autistic, having Autism or having special needs. For example, I say things like, “Emmett is Autistic” or “all 3 of my boys are Autistic”. However, over time, it has become clear that there is a level on intolerance within the community for a parent’s word choice when it comes to describing their own child’s condition. I have been corrected on more then one occasion by people who are offended by my choice of words. They tell me I should say, Emmett has Autism instead of Emmett is Autistic. Personally, I use the words interchangeably, as to me, they me the very same thing.

I really don’t get it. I don’t understand why people are so uptight that this would bother them. Are they suggesting that I’m somehow disrespecting my children by referring to them as Autistic? DO they believe that I don’t love my kids because I’ll say they are Autistic? It certainly feels that way.

Perhaps they are they questioning my intelligence or my ability to use the English language? Maybe, they look at me as insensitive? Do they think they are better or more politically correct than I am? I simply don’t understand why anyone would climb up on their high horse and see fit to crusade against parents who refer to their child as Autistic? I mean, don’t we have much bigger things to worry about?

What I have gathered of the logic, if you want to call it that, behind this movement (for lack of a better word) is this. They would say, Emmett is not Autistic. Emmett is…well..Emmett, and he just happens to have Autism. By saying Emmett is Autistic some people must feel like Emmett is identified by his condition rather than by who he is. That’s my admittedly limited understanding of the motives behind these corrections.

The more I think about this, the more I actually find it offensive and even a bit arrogant. I take offense to someone correcting me when I say my children are Autistic. Why is that such a problem?

What if I say that my boys are Americans instead of persons residing in America? Is that offensive?

What’s the difference? When I introduce my kids to anyone I introduce them by their name not their diagnosis. Saying Emmett is Autistic doesn’t make him any less Emmett. I know who my son is and I know what he has. He’s my baby and I would do anything for him. The same thing goes for all of my boy’s.  Who are you to say otherwise?

Maybe the problem lies in the fact that some people haven’t accepted the fact that their child is Autistic?

Maybe for them, they are unable to separate the two. Perhaps hearing me or anyone else referring to their own child as Autistic somehow shatters their view of their own child. I don’t know, why anyone would be so passionate about this? Judging by their reaction however, it must be hitting a nerve.

I guess the whole point is that we all have much bigger things to worry about. I know I do.

Whether you say, your child is Autistic or your child has Autism, the reality of the situation doesn’t change. Choosing to say that your child has Autism instead of your child is Autistic doesn’t lessen the impact of an Autism Spectrum diagnosis what so ever. My kids are first and foremost my kids. They are individuals and have their own thoughts and feelings, likes and dislikes.The word Autistic, to me doesn’t identify my children but rather a condition that makes up a piece of who they are.

We should be more worried about some of the truly offensive words being used or perhaps more focused on building a better future for our children. Splitting hairs over word choice is ridiculous. Why can’t we all respect each others choices and work together rather than creating resentment and ill will.

By chastising other parents who are more comfortable with their child’s condition or simply more tolerant of word choice, you are alienating yourself from a community that would much rather be your ally then your enemy.

A final note:

 Doesn’t the “child first” language kinda make it seem like their is something wrong with being Autistic? If you focus so much on putting the child before the disorder, when in fact, the disorder is part of who they are. Doesn’t that send the wrong message. Shouldn’t we be embracing our children for who they are (Autism and all) and not try to separate out the parts we are uncomfortable with? Just a thought…..

Recommended Reading on Lost and Tired

About the author

Lost and Tired

I'm Rob Gorski and I started this blog in January 2010 as a means of sharing my family's real life journey raising 3 boys on the #Autism Spectrum.
It's important for people to understand what Autism can really be like and the impact it has on the family. We aren't a TV show and there are no actors. This is our struggle, our journey...and it's all true.

I am "Lost and Tired" and
this is "My Reality #Autism".

Permanent link to this article: http://www.lostandtired.com/2011/05/29/climb-off-your-high-horse-already/

  • http://www.lostandtired.com/ Lost and Tired

    Well said ☺

  • EvieLevina

    I’ve seen people corrected for referring to THEMSELVES as autistic. This person-first language doesn’t come from the autistic community, but from parents who, as you suggested, probably won’t accept that their kids are autistic. A lot of autistic people actually find “person with autism” offensive, because they consider autism an important part of their identity.

  • Mrs.Mommie

    Hi just came across our blog and I am loving your posts. I can truly relate. I have a child with Autism, Aspergers to be exact. However, I usually refer to him as ‘having Autism” as most people are now similar with that term and not Aspergers. I am one of those parents who do not refer to their child as Autistic. However, I am not offended by the term, I just feel that, for my son, it is not the best description for him. I feel it defines who he is. I have worked hard to instill in my son that Autism is something you have, not who you are. My son recently told me that he rarely thinks about his Autism/Aspergers. He does not like to be referred to as Autistic or called an Aspie. (which I thought Aspie was a cute phrase but he was actually offended by it). I found it greatly interesting that he rarely thinks about having Autism and that it doesn’t affect his day to day life. Very interesting, since it dominates and rules my life. He sees his difficulties (Asperger and sensory challenges as things he has to work harder at then others.) This is just how we define our situation and by no means is it right or wrong for other families. I am sensitive to the fact that many use the Autistic term and I respect that. When someone refers to my son as Autistic, I may take that as a teaching moment and explain for our family we refer to him as ‘having Autism” and our reasons for this. However, there are times (and with certain people just makes sense) that we let it go and move the conversation onto another subject. This is our families perception and how we see it for us. We respect others and do not judge how you or any other family. I find it so upsetting that within our community we feel judged and have to defend our time of view. We should be supportive or each other. With much respect. Pam

    • http://www.lostandtired.com/ Lost and Tired

      Nice to connect with you.. :-)

  • http://autisticreflection.blogspot.no/ IChris

    My own experience is that people inside the disability community who has a physical disability which is very visible (like having to use a wheelchair) work hard to prevent the use of words like autistic. The reason behind is that they work against discrimination and it is a need to hide their disability as much as they can; they will show that they are capable of most things despite their disability. As an autistic that is not my goal and so their word policy fail to support me. My need, with a rather hidden disability, is for it to be visible; showing that my disability makes me the person I am and that I am capable because of my disability. People with a physical disability but a neurotypical mind does not understand this, and so I am often met with negativity and what I feel as discrimination because I define myself as autistic and wants my disability (or identity as I call it) to be seen.

  • http://www.specialhappens.com/ specialhappens

    Sometimes I wonder if people are just looking for someone to blame for something.  Obviously, there's not enough turmoil in their lives.

  • Melisssssa

    To me, this is more Political Correctness GARBAGE!  I honestly have never heard of saying or referring to your child as "Autistic" as being a problem to others.  Wow.

  • MikeNYvetteKennedy

    I personally believe that the people who attack you for the way YOU refer to YOUR children do so b/c they haven't yet accepted the truth about their own life or child(ren) yet.  Maybe they do so b/c they are insecure.  I have found that in life people who feel the need to judge others do so b/c they are afraid to look at their own life, so they judge others to make themselves feel better.  It is YOUR business and YOUR business only to refer to your children however you'd like, within certain parameters of course ;-).  Hell, whenever I talk about Lizze or you guys, which happens to be quite often, I usually say something along the lines of "I have three pseudo nephews who are Autistic"  I never really thought I was "offending" someone by saying that, seeing how it is a factual statement and not opinion.  If people paid more attention to their own lives instead of constantly finding something to criticize in everyone elses' the world just may be in a little better of a place than it is now.  <3

    • MikeNYvetteKennedy

      Not that I go around talking about you guys all the time LOL  let me just make it clear.  It is usually in reference to someone saying something that sparks a conversation :-)

  • Jeanine

    In my school in NY, we're not allowed to say "that autistic student" or "that autistic child". My school believes you should never allow the disease to define the child, but rather the child defines the disease. So we HAVE to say "the student with autism" or "the child with autism". I personally don't see what the big deal is, I also use both terms (out of school of course – God forbid I break their cardinal rule) and have heard many parents use the phrase "autistic" as opposed to "has autism".

  • Jesse Roberts

    I work we employ ndividuals with Autism. It is a part of who they are, each has a name and I enjoy using their name, but they have Autism. Sorry you had to blog on something that in the scheme of things does nothing to assist your children and or my employees. I personally enjoy each of my employees (3 with autism) very much. They are some of the best crew a man could ask to work with.

  • Jen

    I do not even know how to begin to address this issue for my son and family. I have only discussed his "learning disability" with a few select people. I am still coming to grips with how I feel about autism. Is it an illness? Is it simply a learning disorder? What exactly does this mean? Do I even need to label my son? Most people have no idea what it is like to live with a high functioning Autistic child that is equal parts angel and devil depending on the day. What I know, is that I will do whatever it takes to help my child become successful throughout his life. Call it what you want and ignore the ignorant. This is a difficult road to walk.

    • http://lostandtired.com Lost_and_Tired

      Very well said Jen. :-)

  • Jay

    I'm autistic. I also have autism. I am also a man, a son, a brother, a musician, a university student.

    If I told someone "I'm autistic" and they said "that's an insult" I'd have questions as to who the socially inept one is between us.

  • http://www.themiracleproject.org Elaine Hall

    Hi Rob, thank you for your post . I once did a poll once on FB asking folks 'with autism' or shall I say, my 'autistic friends' what they preferred to be called. The findings:
    My autistic friend, Stephen Shore said that 70% of the autistic adults he polled preferred to be called 'autistic." My son refers to himself as autistic – or may say that it is " his autism" that is contributing to a certain situation. I also found that some parents may wish to speak of their children with "people first language" so that teachers, other parents, etc. look at their child first and the diagnosis second. I actually write about this in my book, Seven Keys to Unlock Autism: Making Miracles in the Classroom (co-authored with Diane Isaacs) http://www.amazon.com/Seven-Keys-Unlock-Autism-Cl

    In other words: It is up to the individual what they prefer to be called – and up to an individual parent how they wish to refer to their own child.
    and finally, "what is in a name – a rose by any other name would smell as sweet."
    Enjoy your 3 boys!
    All the best,
    Elaine Hall
    Founder/The Miracle Project

  • Kristin

    THANK YOU!!! Of course then I am probably judging people for judging but, I don't think we should be so sensitive. I think people should learn to be sensitive to others preferences but, I don't think we should try to scare them into saying nothing. Recently, we were having a conversation about how the super moon and if it could affect behavior. My son was acting way more autistic than usual for him. I mean the outward signs of it. My friend said even normal kids act different and went on to talk about what happens in the classroom. She felt so bad for saying normal and apologized right away. I didn't even notice. I knew what she meant. She didn't know to say neuro typical. It is really difficult to offend me because most people have good intentions. Sure there are some things that can annoy me but, even then I am very forgiving about it and don't say anything most of the time unless it is family.

  • http://lostandtired.com Lost_and_Tired

    Great feedback everyone, thank you so much :-)

  • Elizabeth

    It has been my experience that the sort of person who feels they have the right to “correct” others on something like this isn’t usually open-minded enough to discuss it. After numerous encounters, I finally decided it wasn’t worth the emotional toil & I trained myself to say “has autism”. If my child ever expresses a preference though, I’ll honor it.

  • Shan

    I am an Aspie. I am the mother of two (teen) Aspies.
    We struggle, we progress and we overcome, but we're always going to be Aspies.
    It is our reality and you know what? Being an Aspie is pretty great, once you get a handle on it.
    I've been attacked for this attitude, because parenting Aspies is hard; how dare I?

    But, I'm an Aspie, too.
    I am so lucky to be inside my children's world. We can really relate- even now in the teen years.
    There are strengths and advantages, ONCE you are diagnosed, supported properly and grow into yourself and ACCEPT yourself.
    I didn't have that growing up, but times have changed and I've made damn sure my children have it better than I.

    Do you know who can't take us calling OURSELVES Aspies?
    People who cannot accept us for who we really are.

    My children's father is one. He cannot stand for anyone to think that there's something WRONG with his children.
    We're none of us made wrongly, we're just different.
    And when we can accept ourselves and our ASD, we can do things that no one thought possible of us.

  • Janine

    I think you are totally correct on this issue. If your child had diabetes you would say so and so is diabetic, if you know someone who has a problem with alcohol are they not considered an alcoholic? What about someone who has schizophrenia are they not schizophrenic? Come on people my daughter is autistic and that will always be a part of who she is, I love my autistic daughter.

  • Kimm

    My daughter is 15 and has multiple issues. Nothing that really has a "label". She does have mental retardation and epilepsy… I am always so worried about being "politically correct" that I am not sure what to say! Cognitive delays?? Is that the appropriate term… Does it really matter. Until you have walked a mile or two or two hundred in our shoes as parents of a special needs child – just be quiet and keep your opinions to yourself. Wouldn't want to offend anybody now would we?!

  • AnneB

    I am so with you on this one. Saying it one way or the other doesn't change what we and our children live every single day. After reading Temple Grandin's book, "Thinking in Pictures," along with a few blogs written by autistic individuals and a video done by a woman who would be considered severely autistic, I've found that autistics and aspies actually dislike the "person first" language. They see it much as you described it above – it's language for parents who don't want to accept that autism IS who their children are. It's not separate from them. It is a crucial part of what makes them uniquely themselves.

    My son isn't old enough nor does he have the language skills to tell me what his preference is, but until he can, I'm going to err on the side of other people with minds like his. To me it just makes sense to listen to the opinions of people who are actually living it over parents who are in the same boat I'm in – watching our kids live it.

  • autiesmama

    Oh well, talking and criticizing is the part we do best when we feel at our worst, I think. Is my friend T. a diabetic, or does he have diabetes? Does my friend's daughter E. have epilepsy, or is she an epileptic? Do I take pleasure in being artistic, or in being an artist? What does any of it change? Ahh…I don't know. I think that if we look at how the English language has changed, even in the last fifty-ish years, there's a bit more perspective–connotation and denotation have been altered considerably, you know? If we say that someone is diabetic, epileptic, or autistic, the connotation is that the condition is what defines the person. Ironically, this is literally easy for me to "see" because I am a synesthete–I have synesthesia, a neurological circuit mix-up in which words are pictures and letters have colors. So when I see the word "autistic" I see a complete circle around that person, formed by the condition. I really *do* see that in my head. If I see "______ has autism" it is not a circle, but rather a branch of the individual. It is the same with all those other conditions. Now, while I "see" different pictures with different words, I sort of prefer the branch thing, but only mildly so. And if not for the synesthesia thing, I doubt that I would care. By the same token, my mother recently passed from a rare form of dementia, thus, she was "demented." True–horribly and painfully true, but that second way of describing her condition, while just as accurate as the first, held far too many ugly (but still true) connotations for me to bear. So I chose what I could bear to say and hear. Perhaps it is the same with these other people–it is what they can bear to say and hear. That said, this gives them no jurisdiction over your choices, you , who knows your child best of all, you get to pick the words you use. I can't imagine criticizing another parent in such a way. My son has autism and he is autistic. *I* tend to say he "has autism" because remember, I *see* the branch and it fits my son better than the circle. But that's *my* thing–it changes nothing, and I can't fathom getting my undies bundled because someone said Daniel is autistic. He is. I guess the thing is that we get to pick the words we use, but that's the extent of it–with the obvious exceptions, of course. Other people have that same right–they get to pick their words as well. And nobody is more accurate or correct, because these word choices–'has autism" v "autistic" don't define our children–does that make sense? What a useless point to argue. Surely we have better things to do. And if we're to demand respect for our children, then we are bound to have mutual respect for each other as parents and advocates for our children. God, criticism comes so easily–it's the junk food of language–cheap and useless and we find it everywhere.
    I think I may have gotten a bit tangled up in there…hope it made sense. *sigh*
    –Leslie, blond with blond hair (okay, grey is in there as well) ,synesthete with synesthesia who has a son with autism who is autistic.
    My recent post And If That Don’t Beat All…

  • https://www.facebook.com/profile.php?id=1058908634 Ericka Grant

    I do not like my son described as his diagnosis. In that way I do understand what person first language is about. My son is Brink, his diagnosis and other things about him are secondary. That said, who am I to correct how a parent speaks about their child if they are not an abusive jerk? I am not the language police.

    • http://lostandtired.com Lost_and_Tired

      Ericka,

      Thank you being the perfect example of how we all should be acting. I completely agree with you. I call my kids by there name. When I'm discussing their condition, I'll say Autism or Autistic. The condition may be part of who they are but it doesn't define them. Despite the struggle and there are many, I hardly ever think of the Autism. I only see my kids.

      That said, to me, I don't care if someone says Autism or Autistic. It's their choice. When my kids get older and can share with me their preference, I'll certainly respect that. Until then, I will do the best I can, showing as much care and respect as possible.

      Ericka, you are a great example of someone whom I may have a differing of opinion with but completely and utterly respect. My whole point with this article was to try to say what you did so well in your comment. We are not he language police. Thank you :-)

  • https://www.facebook.com/profile.php?id=638986666 Karen Croxon

    I think you should be more worried about the fact that you have baby goats (kids) for children

  • https://www.facebook.com/profile.php?id=638986666 Karen Croxon

    I think you should be more worried about the fact that you have baby goats (kids) for children ;-) lol

  • Katy Murray

    My son has Smith Lemli Opitz Syndrome. Along with that dx we get Autism, physical disabilities, speech delays, slow growth, tactile issues, and mental retardation (to name a few). I tend to use "child first" phrasing simply in case I might offend someone, but I understand why this has happened. It's the R word. It's hearing someone make fun of someone by calling them a "retard" that hurts. Because my son is mentally retarded, I take it personally. I see how hard it is for him to learn something and how hard he tries to achieve the basics, and I can't help but stop people if they do it around me. My theory is they really mean "stupid", so when they say "retard" they are trying to insult someone by saying that person is like my son. My son is not stupid. He is amazing with his achievements, his memory, his strength, and his tenacity. But I don't hear people making fun of people by saying they are autistic. We're not trying to eradicate the adjective "autistic" from our language. And we don't have famous movie stars accepting that type of behavior as comedy. I think "child first" is an effort to help people with disabilities count just as much as people who are "abled".

    • http://lostandtired.com Lost_and_Tired

      Well said. While I don\’t have a problem per say with child first, I have a problem with others forcing their views on others or feeling the need to correct others for saying autistic.

      In my experience, most adults with Autism want to be called Autistic.

      Thank you for sharing your views in such a well written and respectful way :-)

  • Katy Murray

    My son has Smith Lemli Opitz Syndrome. Along with that dx we get Autism, physical disabilities, speech delays, slow growth, tactile issues, and mental retardation (to name a few). I tend to use "child first" phrasing simply in case I might offend someone, but I understand why this has happened. It's the R word. It's hearing someone make fun of someone by calling them a "retard" that hurts. Because my son is mentally retarded, I take it personally. I see how hard it is for him to learn something and how hard he tries to achieve the basics, and I can't help but stop people if they do it around me. My theory is they really mean "stupid", so when they say "retard" they are trying to insult someone by saying that person is like my son. My son is not stupid. He is amazing with his achievements, his memory, his strength, and his tenacity. But I don't hear people making fun of people by saying they are autistic. We're not trying to eradicate the adjective "autistic" from our language. And we don't have famous movie stars accepting that type of behavior as comedy. I think "child first" is an effort to help people with disabilities count just as much as people who are "abled".

    That being said, I completely agree that Chase is autistic. The semantics on this one are petty. Anyone who sees him flapping his arms or opening and closing his door 300 times in a row or even screeching in the mall because it echoes will realize he is autistic. And they'll see clearly that he is mentally retarded. Great…the more diagnoses he gets, the more money the school will get to care for him. Just don't call an abled person a "retard" or a "tard" in front of me or I am going to tell you that it hurts my heart. It's not fair to all of those people fighting so hard to achieve our expectations to be defined by an insult.

    Maybe instead of getting angry when someone fights for "child first" or "person first" language, we should thank them for making the effort and for appreciating the fact that we see our kids as people before the diagnosis. But then we can gently explain that not everyone expects that terminology and being judgmental is not necessary. When I call people out for using the R word inappropriately, I'm not mean. They always say they don't mean it as an insult or they're not talking about Chase. I just say that maybe they don't realize how many people they are hurting and can't they just say "you're stupid" instead? At the very least…don't do it in front of me or anyone in my family. Being like Chase is not an insult, it's a compliment!

  • Silachan

    Autistic = descriptive word of a person with autism
    Autism – the condition itself.

    Does the logicistics and semantics really matter to people? It's a word. It's like saying 'diabetic' vs 'diabeties'. Who cares abotu the difference? I identify as autistic because it's who I am and it's shaped my personality. Who would I be if I weren't autistic? I do'nt even know. Maybe i'd be some crazy teenager who goes out and parties every night…or Maybe I'd still be the geek sitting in the corner of the room with a book or laptop. :P

  • https://www.facebook.com/profile.php?id=100000734853396 Isadora Arielle

    I've had similar struggles trying to decide which is the "correct" language to use. My son is autistic. My son has autism. I personally don't feel a charge on either description, and my son is nonverbal so I don't know how he feels about it. I've been doing a lot of editing, and re-editing on my website as I flip back and forth between the two. And I'm still not settled on the subject. I have included a blurb at the bottom of most of my website pages to explain this dilemma, including the fact that there are people diagnosed with autism or Asperger's that refer to themselves with the "person first" language, and others who do not. So here I thought I could go to the community of people living with autism to learn the best language, but even so, there is no consistent use either way. So what's a parent to do? I'm choosing to use the "person first" language at the moment, and maintaining my intention to be respectful of all people including my son. And I think its really important for parents with opinions one way or the other to consider why its so important to them, and to take personal responsibility for how they feel about it, without attacking any one else or insisting that another person's opinion is wrong. Thanks for sharing your view Rob.

    • http://lostandtired.com Lost_and_Tired

      Very well said. To me, \”with Autism\” or \”Autistic\” mean the same thing. They are descriptive terms that in no way define who my child is. I think of my kids as my kids. Autism or autistic us used to describe a conditions, not who they are.

  • jessica silva

    I had a teacher try to correct me about my own son> She told me that is not the politcally correct way to indentify my son.. I had to laugh. I told her I guess I didnt get that memo. I was to busy raising my son. I alson told her most of us parents really dont care about that crap. We care about our children and people love for them> We care about awareness and support. Take all our text book terms and shove it.. I totally feel your frustratration on this,

  • http://www.thethinkingmomsrevolution.com lj goes

    Rob,

    Great point Rob. I am a writer, autism activist and VP of PR for The Thinking Mom's Revolution. I think people find it objectionable because they are seeking medical attention for their kids and the more they learn the more they realize autism is iatrogenic and IN SOME CASES avoidable. So, I think they are expressing distaste at the wrong thing. When I made the mistake of calling my own son autistic (which he is!) I was told, if he had cancer is you wouldn't call him "canceric". I explained calmly (really, I was calm!) that it is too hard to say, "he has mitochondrial disease, methylation failure, metabolic dysfunction, bowel disease and auto-immune compromise" She just started crying. I think some people are just so overwhelmed with the hard reality of our lives they just focus on the littlest thing to explode on. It's easier than addressing the global inhumanity that caused it. Respectfully, lj goes

    • http://lostandtired.com Lost_and_Tired

      Couldn\’t agree more. Well said :-)

  • Lori

    I have found that those that work in the DD field (caseworkers, supervisors at adult sheltered workshops, job coaches, etc,) are overly sensitive to how people with mental/physical disabilities are described. In the presence of special needs children or adults I take the cue from the person with the disability. I've had a blind adult say "I'm blind, not visually impaired. I'm okay with people with referring to my blindness, although that is just part of who I am."

  • evelyncox

    Wow, I had no idea we weren't supposed to say "My son is autistic". Oops, I've been saying it for 3 years now! :-)

    It is amazing how easily offended we as people are. I was interviewed about my son's condition once, and asked if people using the word "cure" offended me. Um, nope. Why would it? If someone feels their kid can and/or was cured, yay for them!

    I'm sorry you've had to deal with this. That is just insane.

  • http://twitter.com/oneinpurpose @oneinpurpose

    I go through this with my bipolar. I always say, "I am bipolar." Some people would rather I say, "I have bipolar." No. I *am* bipolar. It's a fact of my life, it's made me much of who I am, and I won't run from it after 40 years of trying to figure out what was wrong with me. I also try to be open about it because after all these years, people still treat it like it's catching. In response to people saying these kinds of things, I offer this response, "You worry about you and how you define yourself and your children. You are not allowed to define me or my children. I do that."

    • Lost_and_Tired

      Wow. Very well said. More power too you. Very cool. Thanks you for sharing.

    • Dorothy

      I got the same thing from my doctor about bipolar, with the implication that my saying it correctly would help me so much. It didn't. I'm bipolar, two of my children are autistic. I have said "have autism" at times. It depends on the conversation with me. How about we worry about funding or treatments or any other major issues not semantics?

  • Aspie Woman

    Perhaps they think the child is being defined by the "condition" when someone says ____ is autistic.

    I'm an Aspie. It's part and parcel of my being. I don't even think of it as a condition. It's how I'm wired. Personally, me considering it a condition rather than a state of being is offensive to me. LOL! I have ME/CFS. That's a health condition, an illness. Oh sure, I think my environment, including the food I eat, might affect my being an Aspie, but that is true for NTs. My wiring is a challenge, but so is being left handed.

    I can't live my life as if it is an affliction; it's a difference. I once had a paren, who jumped all over me in a guest blog because I used my Aspie perspective (one challenge of mine) to poke fun at NTs. Apparently, I wasn't supposed to be able to make fun of myself because having Asperger's is REALLY, really horrible (according to this woman), and by using Aspie humor, I was insulting all of the struggles that family and people with the condition went through. She even alluded to my being self diagnosed… like it's a "condition" de jour. I was diagnosed by a neuro psychologist after years of treatment lead to a number of neurological tests.

    I don't get the attack mode mentality.

    Discussing this is interesting, but going all judgmental on someone's word choice, I don't understand.

    • Lost_and_Tired

      Thank you for sharing your perspective. I agree with you. I don\’t get why people are so judgemental.

      Thanks again. ;-)

  • AdamG

    I'm an adult autistic. I do not "have autism." I AM autistic. Anyone who tries to tell me differently will get an earful.

    We tend to think this is just semantics-chopping, but the fact is, words matter. Saying that someone "has" something means that that thing is not central to their being, but just peripheral, and can be eradicated or erased. Saying that someone "is" something, on the other hand, means that it's central to who they are. Curebies want us to all say we "have" it because they can't tolerate people like me and your kids. They want us to disappear, to conform, to stop bothering them with our differences. Meantime, this is my life that they're trying to dictate the boundaries of, and I'm not going to put up with it.

    I AM an autistic. Don't you ever try to take that away from me, curebies.

    And Rob, you keep on keepin' on, man. You're a light in the curebie darkness.

    • Lost_and_Tired

      Adam,

      I don\’t know what to say. Well said doesn\’t seem to do that justice. Thank you so much for posting that. I often wonder if I doing the right thing or making the right choices. Hearing from you makes all the difference in the world.

      You are a class act and you have my respect and gratitude. Thank you my friend :-)

  • marie leslie

    Amen. Wouldn't we do better to focus on the child instead of the phraseology? If you have a child who is autistic, has autism, falls somewhere on the autism spectrum (or however it makes you happy to say it), wouldn't it be a lot better if we spent our time tending to their needs instead of worrying how someone refers to their condition? Saying someone is autistic or asthmatic or allergic or whatever doesn't define them, it simply defines their condition.

    Clearly some people don't have enough to do with their time. This is definitely a post worth sharing.
    My recent post Journey to Success

    • Lost_and_Tired

      VERY……VERY well put. Thank you

  • http://www.livinglifewithasideofautism.com Jen

    I have no issue with the term Autistic. It doesn't bother me at all. I'm not fan of Autism, but it has never occurred to me not to say Autistic. There are WAY bigger fish to fry…WAY bigger.
    My recent post Invasion of the Body Snatchers

    • http://lostandtired.com Lost and Tired

      I was waiting for you to chime in :). Always glad to hear from you Jen. :)

  • http://www.facebook.com/Franstuff Francine Johnson McGee

    Dawn, you have hit the nail on the head. Ignore what doesn't matter…and fight for what does.

  • Dawn

    Trying to keep up with which words, in which context, that will offend which people, is a full time job. I used to put more effort into it, but over time I've just come to the conclusion that no matter how good you think you are doing, you will always end up offending someone.

    On the flip side, very little offends me. Not because I'm immune to offensive behavior, but because I make the choice to ignore that which doesn't matter. Letting myself get all whipped up into a frenzy over something I ultimately can't control is just a waste of my time and energy. I think this comes from being a kid with a leg brace. Any time I got upset over something someone said or did, my parents would just tell me to ignore it. It's amazing how much happier a person you can be if you can just let go of all the dumb stuff and be satisfied that YOU are a good person, and that's really the best thing you can do. It rubs off on people. :)

  • Megskitchen

    I have a bad back, it will heal and go away… unless something drastic happens, autism isn't going away and therefor will always be part of my son's makeup. Sorry to those who feel its important to state it a special way, but my son IS autistic, he IS also creative, cheerful and very coordinated. All of those are PARTS of my son. and I dont introduce him as my autistic son, I introduce him as Soren…

    • Lost_and_Tired

      VERY well said. I just don't get some people.Oh…I love the name Soren :)

      • Susan

        .Megs kitchen: ..I love how you say.."he is also creative, and cheerful and very coordinated!! "My Trevor is also funny and charming and delightful and loves the singing chickens on the muppet movie…and and and and….
        Love your comments and your insights….Thank you.

  • http://www.facebook.com/profile.php?id=100000111739587 Rob Gorski on Facebo

    Lost_and_Tired commented on Lost and Tired:

    VERY well said. Thank you for sharing that…..oh and I love the name Sorensen.

  • http://www.momologist.com Larkins Mom

    I enjoyed this post as I don't have a child with Autism but I have a child with Down syndrome and catastrophic Epilepsy. I have often wondered why parents who have children with Autism refer to them as being Autistic instead of saying they "have" but I chalked it up to the fact that I don't walk in your shoes therefore I don't have the right to judge.

    I have accepted my child's medical issues 3x over now and each and every time I correct people who refer to her as a diagnosis. She is not a "down's kid" or a "down's" which INFURIATES me (not just because it is insulting) ~ she is a lot of things before her medical diagnosis. Yes Down syndrome is a part of her however Epilepsy has taken over our lives and I rarely even think about DS.

    I don't refer to her as an Epileptic. I don't refer to her as brain damage child. I don't refer to her by a diagnosis.

    Our children have issues that do take over our lives and as we move forward to help them live the very best lives they can I prefer to give her a name or gender vs a diagnosis although I do explain her issues when people ask.

    My recent post From here to there

  • mmb

    Thank you for writing this post. It gives everyone a different perspective. I worked in education for a few years and they always pushed the "person first" terminology. I, however, would NEVER correct someone who has children with special needs if they are using the word autistic. But I can see how other people, especially those in education really should use the "person first" terminology simply because I have met many parents who are sensitive to the fact that their children have special needs in the first place. And in education that is one less battle to deal with, when ultimately the teacher just wants to help the child and parents, but the sad truth is that parents get caught up in the stupid little things such as terminology rather than the big picture.

    That being said it is quite possible that people are just sensitive to the fact that their child or someone close to them does have autism and they have just not come to terms with it.
    -dnathan13's wife :)

    • Lost_and_Tired

      Well hello…. Thank you for taking the time to share your perspective.You make a very good point and I think you are right. People just don't come to terms with their child's diagnosis and so are overly sensitive. Nice to finally meet you. Tell your husband I said hello. :)

  • http://twitter.com/sugrNspiceLife @sugrNspiceLife

    Thank you Rob! I was actually "corrected" at a support group meeting recently (not an autism support group BTW) for using "autistic". I told the lady that I was aware of the "child first" language, but that it didn't really bother me. She said that's because I had accepted my daughters diagnosis. So…I'm sorry, but because other people aren't accepting of a diagnosis I have to watch my terminology??? I don't see it as any different than saying "my daughter is diabetic". Like you, I don't go around saying "this is my autistic daughter" or "this is my daughter with autism"…I say "this is my daughter, Samantha".

    • Lost_and_Tired

      More power to you. Sorry you were met with such arrogance. I just don\’t understand people. We are all on the same team.

    • onewomansworth

      THANK YOU! :)

  • http://Website Dearest_Nikky

    I think your right Rob. The people who feel they NEED to make the distinction between dx and the person haven’t accepted their own child’s dx or are one of those people who think a certain celebrity was able to “cure” her son by following another crackpot. (I’m now ducking before LIZZE starts throwing things :) )

    *I* refer to your boys as special needs or as being “on Autism Spectrum” when I talk about them. But we know that I’m a rarity. *I* think you are doing a fanTABULOUS job of raising your boys to try and achieve as much as they possibly can in their lives. Screw everyone else and their judgmental bull crap. You know your kids better then anyone – so continue on being the best parent you (can) and are being and let the rest of em kick rocks.

  • http://lostandtired.com Lost_and_Tired

    Doesn't the "child first" language kinda make it seem like their is something wrong with being Autistic? If you focus so much on putting the child before the disorder, when in fact, the disorder is part of who they are. Doesn't that send the wrong message. Shouldn't we be embracing our children for who they are (Autism and all) and not try to separate the parts WE are uncomfortable with?

    • http://twitter.com/sugrNspiceLife @sugrNspiceLife

      yes! That's what I've been wondering too! If you're so focused on the language it seems to imply that there's something horrible and wrong and embarrassing about autism. I do try to use the person first language because I know a lot of people are sensitive about it, but I see a lot of people with autism refer to themselves as autistic. It's a descriptive term, that's all.
      My recent post Rationalizing autism

    • HeatherLiane

      I fully agree , My son Holden is 18 he has autism , he will tell you he is Autistic — our littlest who is 8 now , a few years ago — when she was 5, was telling her class about her family and was saying different things about them one by one and in my opinion she summed it all up when she said Holden is Autistic and I am Artistic — in my house it is just one more adjective like –talented, pretty/handsome, smart , amazing , creative , sensitve ……….. all of the other facets that describe my Son too!

  • Stuart Duncan

    What gets me is that it's always (in my experience) parents who insist that it be "person with autism", meanwhile it's the people with autism that I have talked to, that insist that they be referred to as autistic since it's who they are.

    I insist, that it be either. Stop telling me how to speak. I refuse to spend my time and energy nitpicking terminology. I am not that desperate to find an excuse for an argument.
    My recent post Apple packaging- Autism and blogging Putting it all together

    • Lost_and_Tired

      Thanks Stuart

  • Michele

    go Rob! there is a visiousness in the community , I have too been targeted…most ofthe folks have harrashed me have turned out to be on the spectrum themselves.. so do we excuse the rudeness or do we wonder why the best method of communication for many on the spectrum because of the removal of the need to read faces, eye contact and the time honoured ability to self edit before posting and the delete button are not used in order to spit venom in a very misdirected way and offer forgiveness ?

    High horse…or fat ass?

  • Lost_and_Tired

    Thank for the support. You know life is tough enough with out having to navigate all the land mines being thrown our way by people who are supposed to "GET IT"………. Good luck to everyone and know that I'm in your corner…not that it really means much.. But it's the thought right. :)

  • katscafe

    Retweeting! THIS – I'm directly linking the blog post I was working on to this so that folks can see your words on this situation as well.

    When did language awareness become language intolerance, parent intolerance? I've been reduced to tears by the words of some "well-meaning" people who were offended by the fact I call my children special needs children.

    Why – at what point did my ability to care for my children become apparent by the words I use to communicate with other parents? At what point did I become disrespectful and vilified because I choose a different way of speaking about my children? MY children.

    Thank you, Rob, for putting this into words and actually, giving me just a little bit of courage to go ahead and put my own thoughts out there as well. I've been just a little hesitant, perhaps a little too hurt by what strangers think about me and my parenting. You never cease to amaze me with your fearlessness.

    –Kat
    My recent post Developmentally Disabled – label or hype I say …

  • Shelley

    Isn’t it sad that you even had to write a blog post about this? Some people are just never happy and will point out anything they can find to bitch about.

    You are 100% right!!

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