Wednesday, 06 April 2011
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My autistic 12-year-old vs My 12-year-old with autism.
I recently got a question from a Twitter Follower: “Is there a specific reason you prefer ‘my autistic 12-year-old’ versus ‘my 12-year-old with autism’?”
Yes. "Thank you for the note," I replied. "I've long considered your point interesting, especially since I've heard that the adjective isn't viewed as positively as the phrase 'with autism'."
A pretentious beginning, but the right tone.
“Part of the reason is the space limitations of Twitter and Tweets. I also found when I started on Twitter that ‘autistic’ tended to be a better searchable word than ‘autism’ if one was looking to be found. But the major reason, I think, is that I feel autism is in front of my son, blocking the boy behind it. ‘Autistic’ has a harsher sound, I think, than ‘with autism,’ and sometimes in the frequent struggle that is parenting Alex, I feel harsher sums up the situation more clearly.”
The guy wrote back that I owed him no explanation, and “as the parent of two children with special needs and as someone involved in the special needs community, I find myself ‘correcting’ the media when they use certain terms improperly. I absolutely respect your wording and the meaning behind the statement. I have always found this a great resources to pass along: http://ncdj.org/styleguide/ . By the way, I am working on launching the largest online resource and community for parents and caregivers of children with special needs. Let's stay in touch and I wish your family all the best.” That was pretty classy – and if he’s got two kids with special needs, he owes me no explanation!
I understand “people-first” language and the theory behind it. It’s the person, not the affliction or condition, you’re dealing with, conversing with, talking to, trying hard to understand and fit into your vision of the world. And that when you’re talking to someone who isn’t your kid, someone in whom you don’t invest one of the most terrifying of human loves, then maybe “people-first” is the language of progress. I hope that everyone speaks to Alex in “people-first” language in the time of his life after I’m dead.
I wish I had room in the father-son connection for the language of progress. I stick by “autistic” because it is the language of clarity and honesty (and, as a friend once said to me when Alex was still an infant imprisoned in a hospital, “You’re the father – you’re allowed to be a son of a bitch”). Autism stands between us when Alex rock-walks down the sidewalk, darts into doorways, punches four elevator buttons on what should be a straight shot between the first and ninth floors.
It’s not Alex I address when I talk to him, but autism. I’ve never met Alex. I’ve met his autism, which has always barged ahead, elbowing aside all others and insisting on shaking hands first, like a real self-centered son of a bitch.
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About the Author
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- From: jeffslife
- Name: Jeff Stimpson
- Location: New York City, New York, United States
- About Me: Writer and speaker on being the dad of a boy with autism. Author of "Alex: The Fathering of a Preemie" and "Alex the Boy: Episodes From a Family's Life With Autism." www.jeffslife.tripod.com/alextheboy
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Comments (11)
Facinating. I have two girls with autism. One 20 years old, who is severely compromised, and the other 17 years old and could be noted as Asbergers. I was, like you, a person who referred to them as "my autistic daughters". As they got older, I learned something very important from my eldest who does not have autism. All three of my girls have different personalities and are affected differently by their exposure to autism, but all three are children and have the same human responses to stimuli. They just process it differently.
I agree with you that autism is "In Front" of my girls, but they are present too! I find that when I learn what their autism is, I am much better at understanding what they need. When I fail to identify who they are under the autism, I fail to address their needs first.
The point at which we differ is what the impact of autism is on my relationship with my children. For me, autism comes along for the ride. It is in front, behind, above, and below all of the conversations with my daughters. In the midst of all that, they laugh, cry, get excited and angry. They demand, refuse, shout, and scream, and love within the scope of their autism, but they are still in there and they have a unique voice. Just like my eldest who does not have autism.
Now I'm preaching when all I wanted to do was simply to say that my children's autism is a complication, it is not them. I wouldn't introduce my children, if they had cancer, as "My cancer riddled child", nor would I introduce them as my "Cold child", or my "Fat Child", my "schizophrenic child". They would be introduced as my "child with...". For me, physical or mental, they are my children and they have autism. My relationship is restructured, but I am still a father.
I am an adult, formally-diagnosed Aspie with an 18-yr-old Aspie son, and we are quite proud to call ourselves Autistic, and we dislike "person-first" language. It's ridiculous to make verbal cartwheels when reality is reality, and disliking that kind of simpering inauthenticity is exactly part of how we are differently-brained. We don't like a lot of impractical BS surrounding us, nor pity, nor the thought that we need to be "cured".
There's nothing wrong with saying a person is blonde, or clever, or crabby, or blue-eyed, or gifted, or ginger, or paraplegic, or epileptic. These are honest, clear adjectives that access a shared nomenclature and don't obfuscate the reality of the individual person in any way. Being brunette doesn't make me less "Shannon"! My autism is an intrinsic part of who I am, it's not something that could be separated out or removed without destroying who I am, any more than you could eliminate my "female-ness" without fundamentally altering my identity.
Shannon, my only point is that a person with autism is still a person. There are no verbal cartwheels in that. And after 20 years of Autism and being undiagnosed Asbergers myself, I understand your language. However, my language is not simpering, and, I will not treat my children as though they are only autistic. They are artists, gifted, maddening, difficult, infuriating, and impossible. Everyone who comes into contact with a person with autism needs to understand that. If I treat you as an "Autistic", I miss Shannon. If I treat you as Shannon who has autism, I treat you as Shannon who has autism. Shannon is not separable from her autism, but Shannon is also not only her autism. Neither are my children.
Person first, in my opinion, only seeks to address the fact that there is Shannon. Making her autistic first excludes most of what Shannon is. Being brunette does not make you Shannon, nor does it make you gifted, paraplegic, or epileptic. Shannon may be all of those things and she is more. Making Shannon only those things makes Shannon less.
This is not verbal gymnastics. My daughter, Rachael, is the way she is. Oh, by the way, she has autism as well. I need to understand that Rachael is more than her autism, and that autism is not Rachael.
Thanks for the reply.
@Shannon Ahern - AMEN - both to Jeff's post, and your exceptional clarity (from another Aspie mom of an Aspie boy...).
Coming from a program in college of Developmental Service Work, we were always taught that it is 'person first'. Our professors made it seem as though everyone would feel it was insulting if you used the term autism, or autistic first.
I have had a lot of experience, however, with many young adults with aspergers, and the opinions from them, first hand, is incredibly different. There are some that will say that they are proud of their label as autistic, and will wear it proudly while thinking that it is not an affliction. While others have told me that they feel as though people should not be labeling the person first, but rather have it (as you put it) "My twelve year old with autism". Some feel that it will be seen as an over all affliction and it feels less threatening when you put the person first.
This was interesting to read, and the comments as well, because it is something that will become more and more prominent in the world of disabilities.
I have a now grown son who is an Aspie. I never referred to him as my autistic son. Granted, my experience is vastly different from that of a parent of a profoundly autistic child. The way I understand it is that autism is one thing that is true about him, it does not sum up who he is. He is also artistic, musical, science oriented, funny as hell, blond, tall, etc.
Nor have I every believed that he is or was meant to be anyone other than who he is. I never thought to myself "I wonder who he is if we could just get rid of this autism thing" its part of who he is. There is no "real" him trapped behind it, no more than there is a "real" him trapped behind his other traits and talents and vulnerabilities. All of our characteristics and truths make up who we are, no matter what aspects of those may have been labeled syndrome, disability or disorder by someone or other.
Again, I do not fully understand the experience of a parent with a profoundly autistic child, and my statement here are not meant as judgment on a situation I have not experienced myself. But I do have some diagnosed disorders myself, and from the inside out I do feel they are aspects of myself, not simply things to be overcome, cast out or endlessly trying to be done away with. I never felt or wanted my son to feel that there was something inherently wrong with him that we were on a full time mission to do away with so he could be the person we always hoped he could be. Nor do I want people to treat me that way, that I am only a fraction of who I should be/could be because of these pesky syndromes and disorders.
I have taken care of many children with autism, and although do not have any children of my own I know that it can be quite a struggle. But personally, I find it easier to get through any situation when I remember that they are a human being before autism. It helps me to realize that I can get through any situation with these children because they are in fact people, and just like the rest of us they can be reached at some point or another, although it might just take a little longer to get there. All of these wonderful kids have their own personalities, regardless of their autistic behaviors which in and of themselves are unique to each child, and I couldn't ask for anything more.
"I’ve never met Alex. I’ve met his autism."
This strikes me as one of the saddest things I've ever heard a parent say about their child. Your son may not be who you would have him be, or who he would wish to be. But to say that you are speaking to your son's disability because is it pervasive is to insist to the world that he doesn't exist, only his autism does.
The reality, however sad and unwanted, is that Alex is a person who has a disability. Call him his name, and use person-first language to show the world what you want them to do when you are gone. "Do as I say but not as I do?" If you can't see him, why do you think others will?
I like your explanation and both have 'boy' as the main part. What I hate is the faux-cuddly term 'aspie'. We don't say retard, cripple or any other pejorative term and aspie is just the same. There is no longer a person with a disorder but a just the disability itself. A bit like someone with a thalidomide malformation saying 'I'm a flipper'. Nasty.
As an 18 year old with a learning disability that is commonly confused with Asperger's (Nonverbal Learning Disorder), I REALLY prefer people first language. I HATE when people don't use it. Everyone with a disability is capable of doing something. It's horrible people don't realize that.
Related to this, I really hate when others cheer on those with disabilities just because they do something a person without a disability can do. Both this and not using people first language is very discriminatory.
Mark my word: I hate being called the disabled girl, when I've grown up into something no one ever expected me. I've really proved a lot of people wrong in my life. I much rather be the girl who happens to have a learning disability but can conquer it.
I know from my mom it's hard, but as parents it's wise to begin looking past the disability and all the negative and start looking at what your children are capable of. I've stumbled many times and my disability still makes me awkward in some areas, especially socially but it doesn't make me any less of a person nor does it make any other people with disabilities any less of one.
Thanks, Jeff, for your honesty.
I've been "corrected" by friends...also parents of kids on the Spectrum...who advocate people-first language. Their kids have Asperger's, though. My son is affected much more severely by his autism. It sometimes seems as though the parents of kids with high-functioning autism are more inclined to use the term that is less "harsh," perhaps because autism has not dealt their families as harsh a blow. Seems like it's just another sign of the division within the autism community.
We're all in the same boat, people, whether you like it or not, so we'd better learn to row together.
(I freely bounce between "autistic" and "with autism"...and my son will always be a person first with me!)