Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Monday, September 3, 2012

Autism Parents and People With Autism

I find it quite interesting that the same people who are so insistent on person first language being used to describe their children (and all autistics, including ones who are adults who prefer "autistic person" or even use "autistic" as a noun sometimes, like me), are the same ones who call themselves autism moms or autism parents or autism siblings. It's... confusing, to say the least, and certainly hypocritical. So, why do they do it?
(This came up because I saw that it was bothering someone else, too. That's actually how a lot of my ideas come up- someone says something or asks something and I go "I need to talk about this. BRING ME MY BLOG.")
Anyways, I thought and I thought. People put identities that they consider an integral part of themselves first, but not identities that they don't consider an integral part or which they don't want other people to see as an integral part, right? That's why a person is a woman or an asian or agender or any of a number of things, but has a broken leg or has cancer. Being female, being asian, being agender, being X is important. A broken leg is something that is transient, yes, but it's also not all that important to who the person is. An amputation is permanent, but as far as I know, people with amputations actually do prefer people with amputations to amputee. Sure, it's important information in some situations, but it does not define who they see themselves as or they do not want it to define how other people see them. Cancer is interesting too. People have cancer, which is unfortunate and generally not used as an identity. People are cancer survivors. So they think that's important.
Which leads to an idea. Autism parents consider the fact that they are taking care of an autistic child to be an important part of who they are and what they do. That much is pretty clear, so wanting to call themselves that makes sense. The ones who call themselves autism parents tend to be the same ones who subscribe to the tragedy model of autism, who want it cured, who sometimes think that autism stole their kid. So the idea that autism is part of who their kid is probably hurts too much to look at, and so the kid is a person with autism. Seeing anyone call this thing they see as having stolen their kid from them a part of who they are hurts. So they are person-first crusaders. Does this make sense? Well, it's not completely consistent, but we're humans. Logical consistency is not one of our strong points. However, it would explain the discrepancy. I will, of course, be asking an autism parent about this, but I don't expect much of an answer. So, what do the rest of you all think? Is it possibly this or am I way off base?

17 comments:

  1. I find this point you have made very interesting... I am an "Autistic Mom." But my son... I would never choose to "cure" him. There is nothing to cure. He is who he is and he is wonderful. Sure he is challenging.. but he is also amazing. My son is autistic. He's also blonde. He's Irish American. He's tall. These are just terms that apply to him. However... I do think of myself as an Autistic Mom. I have a neuro typical kid too. When it was just her I was just a Mom.... which is a pretty amazing thing to be. But when my son came along... I learned to do things I've never done before. It's like being a mom with super powers. It's not a bad thing and I don't use the term because I want sympathy or something crazy.... it's just part of who I have grown into.

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    1. I don't think there is anything wrong with considering yourself an Autism Mom or an Autism Dad. I'm mostly looking into the minds of people who do that AND correct Autistic people that they are really "people with autism" because there is a disconnect there- it gets to be a part of their identity, but not ours?

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    2. I don't like when NT parents describe themselves as 'autism moms' or 'autism dads', because it's confusing. If you are autistic yourself, feel free to call yourself that. I also get the impression that many of these 'autism parents' have never considered that autistic people can actually be parents.

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    3. Same, honestly. I actually find it insulting—especially when paired with "our autism". .-.

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  2. I have to say I am really fascinated by the distinctions you raise. Since Gage, (my son) was diagnosed.. I have always (when asked) said I have an autistic son, not that I have a son with autism. And I guess I have never thought a whole lot about it. In spite of spending some time reading things from the perspective that autism is some terrible tragedy.... I guess I assumed that a parent of an autistic kiddo must surely know better.

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    1. I wish that the parents of autistic kiddos consistently knew better. Some do, but the worst writings about the tragedy of autism come from parents and siblings of autistic kids. (I feel kinda bad about disillusioning you, but it's what is, and it's good to know what you're up against. Those parents aren't going to be nice to your son when he acts like he's a human being with rights, not a tragedy. :( Neurodivergent K has talked about stuff parents have done to her, and I give warning- it's not pretty.)
      To some extent, it's only a big deal on the language thing because self-determination is an issue. Respecting what a person wants to be called is a pretty good leading indicator for respecting their other choices.

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  3. Ugh. I am not going to be nice to them either! My son is priceless and beautiful and worthwhile! He is MORE human than some humans I know. He is happy, honest and loving... and the idea of anyone treating him as anything other than that makes me very angry. What is wrong with these parents you're talking about??

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    1. If I knew, I would tell you.
      If you really want to be embarrassed of your neurotype, go watch the Congressional Autism Hearing. Or read anything Generation Rescue advises. (Trigger Warning) Or the comments on any article about how some parent killed their autistic kid. (End Trigger Warning.)
      I rate knowing lower than making go away, but it would be nice to know...

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  4. I just found this post and LOVE IT! Although I have to admit where I have always referred to myself as an Autism Mom (Proudly mind you)I do say sometimes "My Son has Aspergers" I certainly do not want to cure him or think he needs to be cured. I also do not think there is anything tragic about him either. He is JAY!!! And Jay is a wonderfully funny, bright, compassionate person who is deep and multifaceted and yes has Aspergers. When I say he has Aspergers, I am using it in the same as I would say he has brown hair or hazel eyes it helpd to describe him to the outside world it does not define him. First and far most he is just JAY my son then all the other things! HOWEVER we also use the term Aspie and Aspergers as a subcategory that my boy can feel he belongs to. In the same way that I am a female or I say I am Jewish. I think it is important that he feels he belongs to a group. Not sure if this makes sense. I can understand your points here though. I just wanted you to know that not all moms who refer to their children as people with Autism are in denial or trying to cure their child. My son is 11 now and we take his lead. If the day comes that he chooses otherwise, well then of course we will change our terminology.
    Thank yous o much for this though. For forcing me to actually stop and think about what I say and how it could be interpreted.

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  5. I'm glad you liked it :)
    This is pretty specifically discussing the thought process of the ones who INSIST on ALWAYS "has" and "person with," even for people who prefer otherwise, but I do think I make points about the meaning of language pretty well here, if I do say so myself ;)

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  6. I say my son has autism the same way I would say my son has hazel eyes or my son has blond hair. I have said my son is autistic as well. But it is my son who has autism, not me. Right now he is 7, and how he identifies himself has yet to be revealed. I would never call my self an 'autistic mom' any more than I would call myself a twin mom. Why define myself as something that doesn't belong to me? He is, first and foremost, himself. And he is far greater than the sum of his parts...his autistic part, blond hair part, or hazel eye part. And every part is perfect.

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  7. I tend to use the terms interchangably, sort of depending on the context of the sentence. but I most certainly do not insist on so-called "person first" language, and I would N.E.V.E.R. even dream of correcting an Autistic person on what they should call themselves!! Good gravy. LOVING this site, by the way. Im a very proud Autism Mom and am so hungry to know more about the Autistic community and cherish these perspectives. Thank you for your voice.

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  8. I just found your blog and I love it! Thank you for sharing your perspective as an Autistic adult.

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  9. THANK YOU FOR SAYING THIS!!!! I am in a PhD program for Clinical Psychology because I have an autistic son. I prefer to say "autistic" because it does describe the way he exists, but to say he HAS autism is to give it far too much importance! (Not to mention, it is always grammatically awkward.) I asked my 12 year old son who has limited language which he preferred, and HE said he is autistic, not a kid with autism. Autism is a part of him, but saying he is autistic is more like saying he is jolly or clever. It describes ONE attribute of him, but it doesn't encompass all of him.

    Good for you! I am glad to see you speak out! Keep it up!

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  10. I can't easily agree with parents of autistics calling themselves "Autism Mom" or "Autism Dad" because as an autistic person (Aspergers/HFA) and a mom, I think of the terms too literally. I actually am an "Autistic Mom" because I'm autistic and a mom (and my son has Aspergers as well). It frustrates me when I try to find other parents who are autistics themselves, because all I find are parents who have autistic kids, but are not autistic themselves.

    But that's me looking at the term literally, as I am wont to do.

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    1. I agree, I'm autistic and I'm a mom and a grandmom. That makes me an autistic mom, etc.. I don't understand the importance of identifying with someone else's characteristics, I have enough trouble identifying with my own ;)

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    2. In the event that someone comes back, I found a post earlier about actually autistic parents. c: https://autnot.wordpress.com/2016/05/06/parenting-and-autisming/

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I reserve the right to delete comments for personal attacks, derailing, dangerous comparisons, bigotry, and generally not wanting my blog to be a platform for certain things.