It’s been awhile since I’ve taken a stand on something like this because normally, I just don’t have the energy. This time however, I’ll make an exception because this drives me crazy.
I mean this with the utmost love and respect but the Autism community is fickle and petty.
Of course this doesn’t apply to everyone but in general, it’s a pretty fair observation.
We spend so much time splitting hairs, arguing over semantics and judging others for their personal thoughts and opinions. This really needs to stop because all it does is drive a wedge between people who should be working together.
Here are a few example of terminology that ruffles people’s feathers:
- With Autism vs Has Autism
- Autism vs Autistic
- Obsession vs Hobby
I’ve been called out many times for saying my kids have Autism. I’m told that I should say my three kids with Autism. Okay, I’m just going to address this in a simple straight forward way. Who the fuck cares. Seriously, if you have enough time in the day to criticize people’s word choice as it relates to talking about their own children, you need a fucking hobby.
Regardless of how you choose to arrange the word Autism and your child’s name in a sentence, it doesn’t change a damn thing. Your child will be just as Autistic at the end of the day as someone who’s word choice is different.
What does it fucking matter? Seriously people. We need to grow up.
I use the words Autism and Autistic interchangeably. They both mean the same thing as far as I’m concerned.
When it comes to my own children, I use whatever term fits better within the context of the conversation.. That being said, I prefer to call my kids by their first name. Autism or Autistic is a descriptive term that’s used to describe a condition, they present with. Autism or Autistic is not who they are.
I really get tired of people saying that saying my son with Autism is obsessed with whatever.
Here’s the reality. People with Autism, my kids included, have a propensity for hyperfocusing on one thing for long periods of time. There is a quote on Instagram that I responded to because I really dislike this type of statement.
This isn’t
It is apparently the non-autistics “experts” who insist we use people first language, such as, “my son with autism”. However, it has been my experience that most autistic people actually prefer to be called “autistic person” and they are the real experts, in my opinion. I personally don’t care how my child is referred to as long as it is done with respect and kindness.
It is apparently the non-autistics “experts” who insist we use people first language, such as, “my son with autism”. However, it has been my experience that most autistic people actually prefer to be called “autistic person” and they are the real experts, in my opinion. I personally don’t care how my child is referred to as long as it is done with respect and kindness.
Thanks. Although I’ve only been reading your blog a short time, I totally sensed that.
Exactly… Very well said. Thank you
The only thing I get hung up on is that blasted people first language. As well-meaning as it may have started off being by advocates, it is very destructive. Case in point: asked a deaf teacher in my ASL classes which deaf people prefer: to be called deaf or a person who is deaf. Got immediately corrected. Why? Because for the deaf, it is a cultural issue. The deaf have a language of their own and therefore have a culture of their own and are therefore deaf people. Why is autism any different? I may have autism, but I am autistic. It is part of what makes me and part of what makes me who I am. I call it identity first language. And most autistics generally agree. The people first language makes it sound like I have a disease. Autism is not a disease. It is a processing disorder or difference.
It is apparently the non-autistics “experts” who insist we use people first language, such as, “my son with autism”. However, it has been my experience that most autistic people actually prefer to be called “autistic person” and they are the real experts, in my opinion. I personally don’t care how my child is referred to as long as it is done with respect and kindness.
I agree, Autism parents should be able to choose the way they talk about their children, but not the way others talk about their own children. Really do any of us have time to dwell in this?
Right on! That’s pretty much a triviality. Another thing that’s always bothered me is the term “high functioning” autism. My son is now 21 years old and I still don’t know what it means! Give me specifics, such as he’s reading on a, say, 3rd grade level or he can/can’t focus on a motivating task for more than 5 minutes. I really hate vagueness!
Saw this and I love it too x
So right
100% agree, I won’t be told by some muppet with too much time on their hands that I’m wrong for not using person first language…. I like a meme I saw the other day,
Thanks. Although I’ve only been reading your blog a short time, I totally sensed that.
I totally agree if I call my son’s love of Legos an obsession (vs. a hobby) it’s because I know him and his behaviors toward them. This is why I don’t seek advise even when I could really use some. Because I don’t want to argue the words, I want advise on how to deal with the issue! Thanks for addressing this issue.
I’ll say it how i choose. I am autistic and so is my son. Its none of anyone else’s business how we say things.
Totally
I completely agree. It takes a large amount of self control to not say “Get the F#@& over yourself!” when I see article after article of “What you should never say to an autism parent” or “What you should always say to an autism parent” or “What every autism parent wants you to hear.” Some people are good at being sensitive, some are not good at choosing their words. Being overly sensitive and getting offended constantly doesn’t change anything.
Everyone hear me when I say I don’t give a U0001f4a9 what you think. I am not a politically correct pansy. Who cares how it’s said, seriously? ??U0001f602U0001f602U0001f602U0001f602
Exactly… Very well said. Thank you
That’s totally fine because it’s still recognizing that it’s not simply a hobby or trying to sugarcoat what can be a problematic behavior..U0001f44d
Agree 100%
The only thing I get hung up on is that blasted people first language. As well-meaning as it may have started off being by advocates, it is very destructive. Case in point: asked a deaf teacher in my ASL classes which deaf people prefer: to be called deaf or a person who is deaf. Got immediately corrected. Why? Because for the deaf, it is a cultural issue. The deaf have a language of their own and therefore have a culture of their own and are therefore deaf people. Why is autism any different? I may have autism, but I am autistic. It is part of what makes me and part of what makes me who I am. I call it identity first language. And most autistics generally agree. The people first language makes it sound like I have a disease. Autism is not a disease. It is a processing disorder or difference.
I agree, Autism parents should be able to choose the way they talk about their children, but not the way others talk about their own children. Really do any of us have time to dwell in this?
We just quit OT. She was getting better results through her gymnastics class with a really strict coach.
Too much political correctness.
I understand the logic about putting the child’s name first, before the label. It is semantics, and no one should get their panties in a bunch if in conversation you or I do not structure our sentences that way. I do think that we should call our children’s “obsessions” by the real term, “perseverations.” But, that’s my personal choice.
Right on! That’s pretty much a triviality. Another thing that’s always bothered me is the term “high functioning” autism. My son is now 21 years old and I still don’t know what it means! Give me specifics, such as he’s reading on a, say, 3rd grade level or he can/can’t focus on a motivating task for more than 5 minutes. I really hate vagueness!
Saw this and I love it too x
So right
100% agree, I won’t be told by some muppet with too much time on their hands that I’m wrong for not using person first language…. I like a meme I saw the other day,
Thanks. Although I’ve only been reading your blog a short time, I totally sensed that.
I totally agree if I call my son’s love of Legos an obsession (vs. a hobby) it’s because I know him and his behaviors toward them. This is why I don’t seek advise even when I could really use some. Because I don’t want to argue the words, I want advise on how to deal with the issue! Thanks for addressing this issue.
I’ll say it how i choose. I am autistic and so is my son. Its none of anyone else’s business how we say things.
Totally
I completely agree. It takes a large amount of self control to not say “Get the F#@& over yourself!” when I see article after article of “What you should never say to an autism parent” or “What you should always say to an autism parent” or “What every autism parent wants you to hear.” Some people are good at being sensitive, some are not good at choosing their words. Being overly sensitive and getting offended constantly doesn’t change anything.
Everyone hear me when I say I don’t give a U0001f4a9 what you think. I am not a politically correct pansy. Who cares how it’s said, seriously? ??U0001f602U0001f602U0001f602U0001f602
Exactly… Very well said. Thank you
That’s totally fine because it’s still recognizing that it’s not simply a hobby or trying to sugarcoat what can be a problematic behavior..U0001f44d
Agree 100%
The only thing I get hung up on is that blasted people first language. As well-meaning as it may have started off being by advocates, it is very destructive. Case in point: asked a deaf teacher in my ASL classes which deaf people prefer: to be called deaf or a person who is deaf. Got immediately corrected. Why? Because for the deaf, it is a cultural issue. The deaf have a language of their own and therefore have a culture of their own and are therefore deaf people. Why is autism any different? I may have autism, but I am autistic. It is part of what makes me and part of what makes me who I am. I call it identity first language. And most autistics generally agree. The people first language makes it sound like I have a disease. Autism is not a disease. It is a processing disorder or difference.
We also opted out of hours of therapy every week and allowed our child to be a child. Best decision we made!
Absolutely right ! We will call/refer to our child however we feel is appropriate and most of the time that is “Joe”!
Well said!!U0001f618U0001f618
I agree, Autism parents should be able to choose the way they talk about their children, but not the way others talk about their own children. Really do any of us have time to dwell in this?
We just quit OT. She was getting better results through her gymnastics class with a really strict coach.
Too much political correctness.
I understand the logic about putting the child’s name first, before the label. It is semantics, and no one should get their panties in a bunch if in conversation you or I do not structure our sentences that way. I do think that we should call our children’s “obsessions” by the real term, “perseverations.” But, that’s my personal choice.
Right on! That’s pretty much a triviality. Another thing that’s always bothered me is the term “high functioning” autism. My son is now 21 years old and I still don’t know what it means! Give me specifics, such as he’s reading on a, say, 3rd grade level or he can/can’t focus on a motivating task for more than 5 minutes. I really hate vagueness!
Saw this and I love it too x
So right
100% agree, I won’t be told by some muppet with too much time on their hands that I’m wrong for not using person first language…. I like a meme I saw the other day,
I totally agree if I call my son’s love of Legos an obsession (vs. a hobby) it’s because I know him and his behaviors toward them. This is why I don’t seek advise even when I could really use some. Because I don’t want to argue the words, I want advise on how to deal with the issue! Thanks for addressing this issue.
I’ll say it how i choose. I am autistic and so is my son. Its none of anyone else’s business how we say things.
Totally
I completely agree. It takes a large amount of self control to not say “Get the F#@& over yourself!” when I see article after article of “What you should never say to an autism parent” or “What you should always say to an autism parent” or “What every autism parent wants you to hear.” Some people are good at being sensitive, some are not good at choosing their words. Being overly sensitive and getting offended constantly doesn’t change anything.
Everyone hear me when I say I don’t give a U0001f4a9 what you think. I am not a politically correct pansy. Who cares how it’s said, seriously? ??U0001f602U0001f602U0001f602U0001f602
That’s totally fine because it’s still recognizing that it’s not simply a hobby or trying to sugarcoat what can be a problematic behavior..U0001f44d
Agree 100%
I became so tired of things within the community that I opted to no longer medicate my son and not continue therapy…(we did therapies for 5 years and the early intervention made a huge impact… But it became too much ). While I don’t recommend opting out for others, it worked for us and my son has thrived. He is so high functioning that people who do not spend a great deal of time with him do not know that he has autism. I use both terms interchangeably… Has autism and with autism. It doesn’t matter. My son doesn’t do hobbies he becomes obsessed … For example he is into Disney infinity. He knows every piece he has and what pieces he needs to complete his collection. When he builds a Lego set it remains assembled. We have a massive collection in our basement that is starting to look like the Basement in the Lego movie. What terms people use shouldn’t matter. There should be more tolerance and acceptance and sadly there isnt… Even among people who should understand difference.
I shared and in full agreement on both. I believe though that obsessions can be hobbies and even for normal people hobbies can be come an obsession I also think of affixations as that term is used a lot for those with Autism
We also opted out of hours of therapy every week and allowed our child to be a child. Best decision we made!
Absolutely right ! We will call/refer to our child however we feel is appropriate and most of the time that is “Joe”!
I’ve just come to the conclusion that I will just do what I think is best for my boys. I learned real quick the so called Autism community is just as cruel to each other.
Well said!!U0001f618U0001f618
Love this! I also use “Autism” and “Autistic” interchangeably, why? Because they mean the same thing. Barry has autism, Barry is autistic…end of the day it doesn’t change who he is, nor his diagnosis.
I also use the word obsession. Barry is obsessed with routine and sorting of objects. If hes started to sort his blocks by colour and we need to go to an appointment, I promise you we aren’t getting out the house until the blocks are sorted. A hobby is something you can do, leave and come back to. Barry will have a meltdown if his obsession isn’t satisfied to his extent, if I were to try and assist him he’d start all over again. That’s not to say people with autism can’t and don’t have hobbies, however there is a difference between the two.
I guess I can kind of understand the grippe about obsessions and hobbies because autistic people are tired of obsessions being looked on as a bad thing. They definitely can be bad if they prevent someone from doing other things or learning new skills. The has autism/autistic thing though I will agree is just idiotic. At the end of the day it doesn’t make a difference.
We just quit OT. She was getting better results through her gymnastics class with a really strict coach.
Too much political correctness.
I understand the logic about putting the child’s name first, before the label. It is semantics, and no one should get their panties in a bunch if in conversation you or I do not structure our sentences that way. I do think that we should call our children’s “obsessions” by the real term, “perseverations.” But, that’s my personal choice.
I became so tired of things within the community that I opted to no longer medicate my son and not continue therapy…(we did therapies for 5 years and the early intervention made a huge impact… But it became too much ). While I don’t recommend opting out for others, it worked for us and my son has thrived. He is so high functioning that people who do not spend a great deal of time with him do not know that he has autism. I use both terms interchangeably… Has autism and with autism. It doesn’t matter. My son doesn’t do hobbies he becomes obsessed … For example he is into Disney infinity. He knows every piece he has and what pieces he needs to complete his collection. When he builds a Lego set it remains assembled. We have a massive collection in our basement that is starting to look like the Basement in the Lego movie. What terms people use shouldn’t matter. There should be more tolerance and acceptance and sadly there isnt… Even among people who should understand difference.
I shared and in full agreement on both. I believe though that obsessions can be hobbies and even for normal people hobbies can be come an obsession I also think of affixations as that term is used a lot for those with Autism
We also opted out of hours of therapy every week and allowed our child to be a child. Best decision we made!
Absolutely right ! We will call/refer to our child however we feel is appropriate and most of the time that is “Joe”!
I’ve just come to the conclusion that I will just do what I think is best for my boys. I learned real quick the so called Autism community is just as cruel to each other.
Well said!!U0001f618U0001f618
Love this! I also use “Autism” and “Autistic” interchangeably, why? Because they mean the same thing. Barry has autism, Barry is autistic…end of the day it doesn’t change who he is, nor his diagnosis.
I also use the word obsession. Barry is obsessed with routine and sorting of objects. If hes started to sort his blocks by colour and we need to go to an appointment, I promise you we aren’t getting out the house until the blocks are sorted. A hobby is something you can do, leave and come back to. Barry will have a meltdown if his obsession isn’t satisfied to his extent, if I were to try and assist him he’d start all over again. That’s not to say people with autism can’t and don’t have hobbies, however there is a difference between the two.
I guess I can kind of understand the grippe about obsessions and hobbies because autistic people are tired of obsessions being looked on as a bad thing. They definitely can be bad if they prevent someone from doing other things or learning new skills. The has autism/autistic thing though I will agree is just idiotic. At the end of the day it doesn’t make a difference.
I became so tired of things within the community that I opted to no longer medicate my son and not continue therapy…(we did therapies for 5 years and the early intervention made a huge impact… But it became too much ). While I don’t recommend opting out for others, it worked for us and my son has thrived. He is so high functioning that people who do not spend a great deal of time with him do not know that he has autism. I use both terms interchangeably… Has autism and with autism. It doesn’t matter. My son doesn’t do hobbies he becomes obsessed … For example he is into Disney infinity. He knows every piece he has and what pieces he needs to complete his collection. When he builds a Lego set it remains assembled. We have a massive collection in our basement that is starting to look like the Basement in the Lego movie. What terms people use shouldn’t matter. There should be more tolerance and acceptance and sadly there isnt… Even among people who should understand difference.
I shared and in full agreement on both. I believe though that obsessions can be hobbies and even for normal people hobbies can be come an obsession I also think of affixations as that term is used a lot for those with Autism
I’ve just come to the conclusion that I will just do what I think is best for my boys. I learned real quick the so called Autism community is just as cruel to each other.
Love this! I also use “Autism” and “Autistic” interchangeably, why? Because they mean the same thing. Barry has autism, Barry is autistic…end of the day it doesn’t change who he is, nor his diagnosis.
I also use the word obsession. Barry is obsessed with routine and sorting of objects. If hes started to sort his blocks by colour and we need to go to an appointment, I promise you we aren’t getting out the house until the blocks are sorted. A hobby is something you can do, leave and come back to. Barry will have a meltdown if his obsession isn’t satisfied to his extent, if I were to try and assist him he’d start all over again. That’s not to say people with autism can’t and don’t have hobbies, however there is a difference between the two.
I guess I can kind of understand the grippe about obsessions and hobbies because autistic people are tired of obsessions being looked on as a bad thing. They definitely can be bad if they prevent someone from doing other things or learning new skills. The has autism/autistic thing though I will agree is just idiotic. At the end of the day it doesn’t make a difference.