Climb off your high horse already

[...] keep reading the perspective of another parent: Climb Off Your High Horse Already, by Rob [...]

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.

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".

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

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.

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

[...] Lost and Tired blogger Rob Gorski favors using Autistic to describe his three sons. Gorski feels people-first language makes a false implication: 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….. The Arc of Anchorage sees things differently and offers this advice to reporters: [...]

[...] like, my children are Autistic instead of I have 3 children with Autism. It inspired me to write Climb off your high horse already. I don’t understand what motivates this type of verbal [...]

THANK YOU! 🙂

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.

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.

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.

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

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.

Great feedback everyone, thank you so much 🙂

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.

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.

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.

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?!

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.

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…

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.

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

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

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".

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!

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. 😛

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.

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,

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

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."

[...] Climb off your high horse already by Rob Gorski [...]

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.

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."

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.

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.

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

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