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What is the politically correct term for severe autism?


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I have an adult brother that is disabled by autism. Whenever I talk about him with people that don't know him I'm at a loss for how to describe him properly. He can speak but he can't carry on anything resembling a normal conversation. He probably has a the mental capacity of a seven year old. So how should I say it? Is he severely autistic? severely disabled by autism? If I just say that he's autistic people don't really know what I'm talking about. I don't like the term severe either because it makes light of people who are non-verbal and who struggle way more than my brother and yet in a way he is severely affected. I'm probably way over thinking this but I just find that I always end talking to much about him because I don't know how to concisely and properly describe this type of autism. It doesn't help that I love him to bits and wish that everyone in the world knew him to. Who else do I know that knows that I was born the same year as Macaulay Culkin or which movies he stared in and who directed those movies? Or who else would film himself playing Happy Birthday on an out of tune ukelele and post it on youtube for my dd when she turned 14? This world needs more characters like Tom. Just help me decide how to properly describe him without offending anyone.

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 Just help me decide how to properly describe him without offending anyone.

 

He is YOUR brother, so you get to describe him any way you want, and pooh on anyone who doesn't like it. The verbiage changes regularly, and even people in the autism community disagree on "people-first" language, or not.  :grouphug:

 

My best guess would be something like, "My brother is significantly impacted by autism."

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I don't think you  have to worry about offending anyone!

 

But in your shoes I'd probably say something like "severely disabled"  The nature of the disability isn't really relevant, what you want to convey is that he needs full time assistance permanently. Maybe word it something like "Bob is severely disabled, but he's our joy" so people don't feel like they need to rush to express sympathy.

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Never say he IS autistic.  

 

That's actually a debatable point, because many people within the autistic community do prefer to refer to themselves as autistic (and to have others refer to them that way). They consider it a part of their identity, not something they have. 

 

They would no more say "I have autism" than a gay person would say "I have same-sex attraction." They say I'm autistic the same way they might say I'm gay, or I'm Catholic, or kiss me, I'm Irish. 

 

Some people also think it sounds too medical, like you say I have a cold or I have diabetes. 

 

Always go with someone's preference when known, of course, but there's no settled answer to this one. 

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In situation like that I find it helpful if I'm told just something such as, "think of him as a seven year old who with a great sense of humor, and he likes Macaulay Culkin movies". 

 

That would give me all the information I need to interact with him/her in a way that would be meaningful and nice for both of us. I know to expect typical kid behavior, and that if I bring up Macaulay Culkin then he would likely find the conversation interesting and enjoy it. 

Edited by Julie Smith
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As an autistic individual, I loathe person first language with a passion. I find it stigmatizing. I am not alone in this. The very presumption around PFL, that you somehow won't remember that we are people without talking in a funny way, is insulting.

 

I would also not say that he has "classic autism", a phrase which indicates a complete ignorance of Kanner's works.

 

However, Janeway's third suggestion of spelling out that he has cognitive delays should be fine... though really, I'm more in favor of just saying he is severely disabled and leaving it at that. Unless the person you're speaking to knows your brother, they don't really need to know the nature of the disability, and they probably aren't actually interested anyway. And if they do know your brother, it should be obvious.

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You can't win, there is no good term that will be understood. 

 

I think if you could tell a few things about him it might go better. 

 

My son has autism, and I do not find that people mean the same things by any of the terms.

 

And then, people just do not know, because there is so much difference.

 

I think telling some info is good enough.

 

If you have 3-4 sentences, it is short, but it is also informative! 

 

I think what you wrote in your post could be close to how you would tell someone about your brother, and it is pretty concise.

 

My only other relative with a "name" kind of thing has Down Syndrome, and Down Syndrome is not enough to describe her.  But I can tell a bit about her in 5 sentences that include the words Down Syndrome, or where that is one sentence.

 

I think if you say some things he likes and does, and then something you think is cool -- you can pack in a lot of info and still be concise. 

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Also for me -- I do not know what is technically correct, but I would not say "severely disabled" to describe someone with an intellectual capacity of about a 7-year-old.

 

You might just say he has the mental capacity of about a 7-year-old.  That is a lot more clear I think. 

 

In conversation I think this would be very fast to say, and not seem like "here I am saying a paragraph." 

 

 

 

Edited by Lecka
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Rose M, I think from what you've written I get what you want to convey to others, but I'm not sure who you need to find the appropriate word to describe your brother to that you are concerned about. If it's a medical professional or a social services provider, they'll need the exact diagnosis and details, but most other people do not and there is no way that one term will ever be able to accurately convey everything, especially about someone else. I often just say I'm disabled or I have long term conditions -- I even have a pin on my bag that says 'disabled' -- as that's all I really need other people to know. I don't go into details with most people in person. 

 

Personally, in your situation, unless your brother has a preference, if I felt that others were not understanding based just using autism - because there is a lot of bias around it and I completely get how it can not feel like enough of a word as it is commonly understood - I would use cognitive disability which autism is but the social weight of the wording I think fit better with what I think you're trying to say. Severe autism or severely autistic means very different things to different people in my experience. Cognitive disability, while actually vaguer, has a clearer image, I think. 

 

I am autistic, I have autistic children. I know non-verbal autistic people who have written novels and maintain businesses. The problem with severe as a concept or functioning labels is not that it is offensive or not "PC", but that, just like everyone else, there is overlap depending on what one is focusing on and more often than not the focus is on how well we pass as not autistic or not disabled by it from someone else's point of view. I've had both applied to me within days of each other because different people prioritized different things. How I appear to others when I'm at the end of my pain or emotional coping ability and usual will be different and what I am diagnosed on but the underlying thinking does not change for me. 

 

So, I would say "He has a cognitive disability *and* [fill in lovely things you've listed] to give a fuller picture. And is important because his autism is part of why he does those things -- quite a few people put but there as if the lovely things are separate or make up for something that is integral to us which does hurt a lot of people. It's kinda like saying she's a woman, but she's funny. 

 

Honestly, as an overthinker who has been in disability activism for years the only bit that made me raise my eyebrow even slightly is putting an age on mental capacity.  It's not offensive as such but something many within disability activism are trying to move professionals and society away from because a lot of abuse and ableism has been and still is excused under the "they have a mental age of X so it doesn't matter". Really we have such a limited understanding of the mind that we cannot accurately say that with any certainty on anyone before we get to how difficulty in communication or emotional overload or anything could create barriers on a person showing their capacity to others. It's an easy way to frame and I understand why it is used but see it used to excuse horrible things enough time and it makes me nervous and wish there was an easier way to explain such things. 

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I think severe autism works. I'm baffled by "slightly autistic" (heard that one recently), but I understand "severe autism".

I would assume "slightly autistic" means one of two things--a) a person on the very high functioning end of the autism spectrum (diagnosed) or b) a person with some characteristics of autism but possibly not enough for an official diagnosis (or high functioning end of the spectrum but has not sought diagnosis).

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I would assume "slightly autistic" means one of two things--a) a person on the very high functioning end of the autism spectrum (diagnosed) or b) a person with some characteristics of autism but possibly not enough for an official diagnosis (or high functioning end of the spectrum but has not sought diagnosis).

 

What's the difference between autism and Asperger's? 

 

I thought Asperger's was a milder form and that that would be the proper terminology. 

The information was second or third hand...so that could be part of it.

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I think severely autistic is fine.  You could also say low-functioning I guess.

 

I have a cousin who I describe as severely autistic.  He has been institutionalized most of his life.  When drugged he can hold a simple childish conversation.  He has the physical capability to do what anyone does, e.g., get dressed and stuff, use pen/paper, but doesn't necessarily do it the appropriate way.  He has had incidents when he got too stressed out and hurt people/things without realizing until later.  Or when he took off and had to be picked up by the cops.

 

When we were much younger, "autistic" was descriptive enough, because the word wasn't used for mild situations like what became known as "Asperger's" and later "mild spectrum disorder" / HFA.  Nowadays "autism" does not automatically mean a person who cannot live without significant assistance, develop normal human relationships, or hold a normal job.  Hence, "severely autistic."

 

That said, I don't think other people need to know the details of your brother's disability, unless you are asking them for advice about him.  If someone felt the need for more information, I would probably say, "is there a reason you are especially interested in autism?"  Basically it's probing and it's impolite.

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To get across that your brother is fun, you could just say that.  "He's so fun, he keeps us up to date on ____."

 

Whenever I meet my aunt, the mother of my autistic cousin, she always has a quick story to tell with a grin about something he did that only he would do.  :)

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What's the difference between autism and Asperger's?

 

I thought Asperger's was a milder form and that that would be the proper terminology.

The information was second or third hand...so that could be part of it.

Aspergers had slightly different diagnostic criteria, though I don't remember the details. When the most recent edition of the DSMV (diagnostic manual) was being put together the decision was made to eliminate Aspergers as a separate diagnosis, so people who would have received that diagnosis in the past may now be diagnosed with high functioning autism (if they meet the criteria for that) or with some other diagnosis.

 

I've been known to describe a couple of my kids as "spectrum-ish" for lack of a better term; they have some autism spectrum characteristics (enough to be noticeable by both lay people and professionals) but the evaluations we have done so far at least have not resulted in an autism spectrum diagnosis. I tend to think of them as being towards the autism side of things but maybe not quite far enough to meet diagnostic criteria--all human characteristics actually existing along graduated axes (is that the correct plural for axis?)

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I usually just say GW is severely autistic if I have to explain to someone why he's doing whatever he's doing or can't answer their question. That's always worked for me, especially when he's standing there giving my interlocutor a visual prompt.

 

On the other side of the spectrum, I've heard Geezle tell someone that he's autistic. It wasn't a big deal to either of them.

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Aspergers had slightly different diagnostic criteria, though I don't remember the details. When the most recent edition of the DSMV (diagnostic manual) was being put together the decision was made to eliminate Aspergers as a separate diagnosis, so people who would have received that diagnosis in the past may now be diagnosed with high functioning autism (if they meet the criteria for that) or with some other diagnosis.

 

I've been known to describe a couple of my kids as "spectrum-ish" for lack of a better term; they have some autism spectrum characteristics (enough to be noticeable by both lay people and professionals) but the evaluations we have done so far at least have not resulted in an autism spectrum diagnosis. I tend to think of them as being towards the autism side of things but maybe not quite far enough to meet diagnostic criteria--all human characteristics actually existing along graduated axes (is that the correct plural for axis?)

Aspergers was not supposed to have any cognitive delays.  For the most part, people with Aspergers would be expected to go on to live what seems like a "normal" life (as if anything is normal, there is no one "normal").

 

My son, whose original DX was Aspergers, if you met him you would likely not be able to tell he has ASD.

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Also, children with Asperger's did not usually have a speech delay as toddlers (speech delay is common with autism) but were, instead, very verbal. "Little professor" was a common descriptor  for little ones with Asperger's who could talk at length about their narrow topic of interest.

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I use the term severely disabled for my dd (mostly here on the forum I think) when I just want a short descriptive without going into the whole long story. I mean by that term that she requires a lot more care than a typical child and has very limited capabilities. Of course there are people who are more disabled--I don't try to parse out how disabled you have to be to warrant the term "severe". I am not bothered in the least if people choose to use that term for their children who can do a lot more than my dd, or if someone wants to use it for an autistic individual. I know a lot of kids with autism and see a large range of abilities. If anyone just described their relative as "autistic", that would be sufficient for me to have some idea of what limitations they may have. In your place I would probably just say, "he is autistic" as my short answer. 

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What's the difference between autism and Asperger's? 

 

I thought Asperger's was a milder form and that that would be the proper terminology. 

The information was second or third hand...so that could be part of it.

 

Under the previous version of the American Psychological Association's diagnostic criteria, the difference between High-Functioning Autism and Asperger's Syndrome is whether or not the individual experienced speech & language delay. My daughter's diagnosis is HFA rather than Asperger's because of the speech & language delay. The developmental pediatrician said that once she overcomes the delay, she will face similar challenges as someone with Asperger's.

 

Under the current diagnostic criteria, there is no longer a distinction between HFA and Asperger's. It's all Autism Spectrum Disorder, Level 1. A lot of people disagree with the decision to get rid of Asperger's and Pervasive Developmental Disorder (PDD) as separate diagnoses and the addition of "Social Communication Disorder".

 

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Okay, I think it will depend on context.

 

For a short aside, anything will do. It will be vague and appropriate for times that vague is what is called for.

 

For other times, I think go ahead and describe him.

 

But don't expect anybody to know technical terms, and keep in mind how broad and vague they are.

 

Also if you want to tell a quick aside that has come up, the context of you coming across like "I am excited" gives so much context, a lot can be left out. If you are excited and happy about a birthday message -- that provides a ton of context. You may not need to go into too many details -- maybe your context has gotten across easily.

 

Maybe just experiment with saying things and see if you feel like you should say less or if you find something that works for you.

 

Frex -- my 8-year-old is trying to ride a bike and I am overjoyed. It is obvious enough that he is older for that and that I am happy. That in itself says a lot. I don't need to give too much other detail for someone at church who is more of an acquaintance or not knowledgeable about autism ---- it is enough to know I am happy, I think.

 

And that is my news of the week for anyone I bump into. If I saw someone who hadn't met my kids, I might not go into detail, or maybe I would.

 

But I think go ahead and talk about him, and you will get a feel and become more comfortable.

 

But I have not found any term to be very descriptive in a way I would want it to be in seeking connection with another person by discussing my life and my family members.

Edited by Lecka
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I hate, hate, HATE the term "autistic". You wouldn't use the terms "Multiple Sclerotic" or "Cerebral Palsic" to describe someone with those neurological disorders so it is offensive to me to use the term "autistic" to describe my child's neurological disorder.

 

I would use those terms if they asked me to, because I recognize that they are the ones who gets to decide what is and isn't offensive - not me, and not their parents.

 

You know what else I wouldn't do? I wouldn't describe a gay person as "having homosexuality", or a black person as "having African-Americanism" or a Christian person as "having Christianity".

 

In every instance other than disability, we use identity-first language. Person first language is stigmatizing and bizarre. And it's not just autistics who think so. The National Federation for the Blind has condemned it. Deaf people, as a rule, strongly dislike it. PFL has been imposed on disabled people from the outside.

Edited by Tanaqui
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I hate, hate, HATE the term "autistic". You wouldn't use the terms "Multiple Sclerotic" or "Cerebral Palsic" to describe someone with those neurological disorders so it is offensive to me to use the term "autistic" to describe my child's neurological disorder.

 

I am completely with you! When someone says "my child IS adhd" I just cannot..cannot..respond to anything they say because it ticks me off so much. 

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I hate, hate, HATE the term "autistic". You wouldn't use the terms "Multiple Sclerotic" or "Cerebral Palsic" to describe someone with those neurological disorders so it is offensive to me to use the term "autistic" to describe my child's neurological disorder.

 

 

But it's not offensive to say "I am Deaf".   Or "I am dyslexic".

 

I always follow the individual's preference (or parents preference, for young kids).

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I hate, hate, HATE the term "autistic". You wouldn't use the terms "Multiple Sclerotic" or "Cerebral Palsic" to describe someone with those neurological disorders so it is offensive to me to use the term "autistic" to describe my child's neurological disorder.

 

I'm with you.  Like calling my parent schizophrenic.  As if they aren't a person with something...but they are that disorder/disease.

 

That said, I don't think people have bad intentions (usually) when they speak like that.

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But it's not offensive to say "I am Deaf".   Or "I am dyslexic".

 

I always follow the individual's preference (or parents preference, for young kids).

 

Oh I think some people are offended and I DO understand that.  People don't want to be defined by their disorder. 

 

Again, I don't think the intention is always bad, but I get feeling annoyed by this. 

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What's the difference between autism and Asperger's? 

 

I thought Asperger's was a milder form and that that would be the proper terminology. 

The information was second or third hand...so that could be part of it.

 

As others have said, Asperger's is no longer an official diagnosis. The available terms now are ASD-1, ASD-2 and ASD-3, with 1 being the most mildly affected and 3 the most severely affected. ASD-1 is what previously would have been Asperger's and perhaps high functioning autism.

 

As far as person first language or not -- I have hypothyroidism and very frequently say "I'm hypothyroid." Many people say "I'm diabetic." How is that different than someone saying "I'm autistic"? I will continue to use the phrase "is autistic" or "has autism" because that's what DS prefers. If I were speaking with or about someone who I knew preferred PFL then I'd respect that. But it is absolutely incorrect to assert that one is categorically preferred over the other within the autism community.

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As others have said, Asperger's is no longer an official diagnosis. The available terms now are ASD-1, ASD-2 and ASD-3, with 1 being the most mildly affected and 3 the most severely affected. ASD-1 is what previously would have been Asperger's and perhaps high functioning autism.

 

As far as person first language or not -- I have hypothyroidism and very frequently say "I'm hypothyroid." Many people say "I'm diabetic." How is that different than someone saying "I'm autistic"? I will continue to use the phrase "is autistic" or "has autism" because that's what DS prefers. If I were speaking with or about someone who I knew preferred PFL then I'd respect that. But it is absolutely incorrect to assert that one is categorically preferred over the other within the autism community.

 

Oh I don't deny anyone says it about themselves.  I just do get the objection to being referred to as a disease.  I used to kind of be on a mission with mental illnesses, but now..I let it roll off.  I've concluded that generally people aren't really thinking that hard about what they are saying so they probably don't mean it in a rude way.  And also, I don't need to be so pedantic.  I do get having a heightened sense of this though when it's your loved one dealing with a particular disorder. 

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Sounds a bit like my 25-yr-old with autism.  If I need a quick intro for folks I let them know Joe has autism , chooses not to talk anymore (much) although he understands everything, and academically is like a six-foot-tall second grader.  He has "Joe syndrome" and is uniquely himself.

 

When out and about, for example at McD and Joe wants fries and a soda. we try to make him order.  He will ask for fries, but so softly no one can hear him (and he won't repeat himself, ever).  So I stand next to him and prompt him loud enough for the cashier to hear ME, "Joe, are you going to order your two large fries and small soda".  Cashiers (etc.) quickly pick up on the fact that this is a special needs person and are very polite to Joe. 

 

I flat out remind Joe, at doctor offices for example, that I only am speaking for him since he won't speak up himself, and Doctor only has a few minutes per patient. I look at Joe and ask him "Do you want to talk to the doctor? Do you want me to leave the room?" but if he gives me no response, I stay (averting my eyes if needed).  That also help clue the doctor (or nurse) in that Joe is a special needs person.

 

I think if you are in a situation in which you need to let someone know your brother has severe autism, then just use the words "severe autism". 

Edited by JFSinIL
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Oh I think some people are offended and I DO understand that. People don't want to be defined by their disorder.

 

Please do not use blanket statements. Not every disabled person - especially the Deaf! - primarily considers those conditions to be "disorders" - and a great many of us do, in fact, want a huge part of our lives to be part of our "definition". You cannot separate me from my disability. Autism is who I am. It's in every facet of my brain functioning. It is a much larger aspect of my personality than my gender, and yet our language actually requires you to gender me just to use the right pronoun!

 

Things I don't want to be "defined by", but don't seem to get a say in: My gender, my race, my hair color, my nationality. But people will definitely look at you funny if you say "Please don't tell people I'm an American, I'm a person from the USA" or "Okay, if you want somebody to find me in a crowd, don't tell them I'm the woman with brown hair, tell them to yell my name, because I'm A Person First, not a gender or hair color".

 

Things that are actually mad important: Autism and atheism.

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Please do not use blanket statements. Not every disabled person - especially the Deaf! - primarily considers those conditions to be "disorders" - and a great many of us do, in fact, want a huge part of our lives to be part of our "definition". You cannot separate me from my disability. Autism is who I am. It's in every facet of my brain functioning. It is a much larger aspect of my personality than my gender, and yet our language actually requires you to gender me just to use the right pronoun!

 

Things I don't want to be "defined by", but don't seem to get a say in: My gender, my race, my hair color, my nationality. But people will definitely look at you funny if you say "Please don't tell people I'm an American, I'm a person from the USA" or "Okay, if you want somebody to find me in a crowd, don't tell them I'm the woman with brown hair, tell them to yell my name, because I'm A Person First, not a gender or hair color".

 

Things that are actually mad important: Autism and atheism.

 

I didn't use a blanket statement.  I said SOME PEOPLE.

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 In every instance other than disability, we use identity-first language. Person first language is stigmatizing and bizarre. And it's not just autistics who think so. The National Federation for the Blind has condemned it. Deaf people, as a rule, strongly dislike it. PFL has been imposed on disabled people from the outside.

 

My daughter's medical conditions are NOT her identity. They are things she HAS, not things she IS. She used to have typical hearing and now she has hearing loss. The deterioration of her auditory system did not change who she is on a fundamental level any more than someone who develops another chronic medical condition suddenly loses their identity as a result of that. If I developed MS, I wouldn't go around saying, "Hi, I'm Crimson and I'm Multiple Sclerotic". I would say that I have MS.

 

Disability is not a lifestyle choice like religion or homosexual behavior.

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A friend of mine says, "my son, who has severe autism..." She does NOT LIKE the descriptor "autistic son." Another person I know says, "my son has severe autism and schizophrenia."

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I vary how I call myself.  Sometimes I say I have ADHD and sometimes I say I am ADHD.  Don't really care.  I mean ADHD in my opinion isn't really an all negative condition.  All the ADHDers I have meant have been above average intelligence and have quick thinking.  That is beneficial in certain situations.  Of course, quickly thinking of rejoinders and not controlling what one says can be troublesome.  But there are advantages to the condition as well as disadvantages.

 

I suppose that deaf people feel that way too and my son knows a person whose wife got her hearing implants taken out because they just bothered her too much.  I guess her brain had adapted in a different way and hearing was not normal for her and wasn't processed right by her brain.  We all know that blind people hone their other senses more and I would guess deaf people do too.

 

With autism, there is such a wide variation between who communicate well  and live normally and people who really can't live on their own and need lots of support and probably won't ever be employed or live alone.

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My daughter's medical conditions are NOT her identity. They are things she HAS, not things she IS. She used to have typical hearing and now she has hearing loss. The deterioration of her auditory system did not change who she is on a fundamental level any more than someone who develops another chronic medical condition suddenly loses their identity as a result of that. If I developed MS, I wouldn't go around saying, "Hi, I'm Crimson and I'm Multiple Sclerotic". I would say that I have MS.

 

Disability is not a lifestyle choice like religion or homosexual behavior.

While I would try to respect the known wishes of a person I was interacting with in regard to labels, I do not think that the adjectival use of such a label implies a definition.

 

He is short.

He is sick.

He is blind.

He is blond.

He is smart.

He is tan.

He is deaf.

He is thin.

He is autistic.

He is easygoing.

He is sensitive.

 

All of these express a characteristic or condition of a person; use of an adjective is not some kind of automatic depersonification.

Edited by maize
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I teach teenagers with intellectual and developmental disabilities, some of whom are probably very similar to your brother, except obviously younger.  My first thought, is that you should ask your brother and follow his wishes.  

 

Beyond that, I will say that my students universally dislike descriptions of them that include ages or grade levels.  They are very clear that they see themselves as "teenagers" or "young adults", and that being described as "on a 7 year old level" would bother them immensely.  It's also, in most cases, not true.  Most of my students have abilities that vary greatly.  They may have articulation that is similar to that of a 3 year old, decoding more like a fourth grader, but struggle with inferential questions that a first grader could answer.  Their spelling and written grammar might be similar to a 5 year old, but they use reading and writing very differently from the way a young child would, because their purposes for writing are age appropriate (instagram comments, texts asking mom to stay out later, shopping lists and recipes). 

 

Most of my students feel very strongly that they hate the R word, but beyond that their opinions vary.  Some prefer the term special needs, while others identify with a larger disability community and prefer the term disabled, and some only identify with people with their same disability and prefer terms like autistic or with Down syndrome.

 

My students, who again are younger, express an preference for the term "young adult with . . . " because they are acutely aware that society does not see them as young adults in the same way it sees their NT classmates.  Beyond that, they don't express opinions on identity first vs. person first language.  To put that another way, if you asked them to choose between the 3 terms "young adult with . . ., person with . . ., or . . . . person, they'd choose young adult every time, but if you took that out of the options, they wouldn't care.  However, when talking with adults, I have found that the majority of adults who self identify primarily as autistic or Deaf prefer identity first language (e.g. "autistic woman" or "Deaf teacher", while the majority of adults who identify primarily in terms of a specific medical diagnosis, or ID prefer person first language (e.g. "a teacher with CP, a woman with Apert syndrome, and man with an intellectual disability).  If I don't know what an individual prefers, I tend to default to those structures myself.

 

As far as this particular young man, if I had to describe him,  I'd probably describe him as an "autistic adult with a cognitive/intellectual disability" depending on whether he actually had an ID diagnosis.  Most of the time, I think it's worth taking the time to describe people the way you did in the first paragraph, in terms of their individualized strengths, and the supports they benefit from, except that I'd leave out the age equivalencies.

 

I wouldn't use the word severe, because to me, as someone in the field, severe means something specific and it does not sound like he meets that criteria.  If I wanted a term that indicated that he was well outside the norm, I would probably use the word "significant" which is less clearly defined, but generally includes a wider range of individuals.

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I teach teenagers with intellectual and developmental disabilities, some of whom are probably very similar to your brother, except obviously younger.  My first thought, is that you should ask your brother and follow his wishes.  

 

Beyond that, I will say that my students universally dislike descriptions of them that include ages or grade levels.  They are very clear that they see themselves as "teenagers" or "young adults", and that being described as "on a 7 year old level" would bother them immensely.  It's also, in most cases, not true.  Most of my students have abilities that vary greatly.  They may have articulation that is similar to that of a 3 year old, decoding more like a fourth grader, but struggle with inferential questions that a first grader could answer.  Their spelling and written grammar might be similar to a 5 year old, but they use reading and writing very differently from the way a young child would, because their purposes for writing are age appropriate (instagram comments, texts asking mom to stay out later, shopping lists and recipes). 

 

Most of my students feel very strongly that they hate the R word, but beyond that their opinions vary.  Some prefer the term special needs, while others identify with a larger disability community and prefer the term disabled, and some only identify with people with their same disability and prefer terms like autistic or with Down syndrome.

 

My students, who again are younger, express an preference for the term "young adult with . . . " because they are acutely aware that society does not see them as young adults in the same way it sees their NT classmates.  Beyond that, they don't express opinions on identity first vs. person first language.  To put that another way, if you asked them to choose between the 3 terms "young adult with . . ., person with . . ., or . . . . person, they'd choose young adult every time, but if you took that out of the options, they wouldn't care.  However, when talking with adults, I have found that the majority of adults who self identify primarily as autistic or Deaf prefer identity first language (e.g. "autistic woman" or "Deaf teacher", while the majority of adults who identify primarily in terms of a specific medical diagnosis, or ID prefer person first language (e.g. "a teacher with CP, a woman with Apert syndrome, and man with an intellectual disability).  If I don't know what an individual prefers, I tend to default to those structures myself.

 

As far as this particular young man, if I had to describe him,  I'd probably describe him as an "autistic adult with a cognitive/intellectual disability" depending on whether he actually had an ID diagnosis.  Most of the time, I think it's worth taking the time to describe people the way you did in the first paragraph, in terms of their individualized strengths, and the supports they benefit from, except that I'd leave out the age equivalencies.

 

I wouldn't use the word severe, because to me, as someone in the field, severe means something specific and it does not sound like he meets that criteria.  If I wanted a term that indicated that he was well outside the norm, I would probably use the word "significant" which is less clearly defined, but generally includes a wider range of individuals.

 

I hear what you're saying about the age equivalent issue. My brother doesn't have any sense that he is disabled or autistic. He certainly doesn't have a preference in how he is described. He talks about getting married and buying a ranch and a Porsche. It is really interesting to me how he can read, maintain a FB account, upload youtube videos and yet has no sense of how much things cost or that the weather would be different where I live. There are some ways in which his mental capacity is like a 3 year old and other ways in which it is like a 11yo. There are probably some ways in which he is like an adult. An age description doesn't even work for him. I think that I'll drop that way of describing him.

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I say my dad is severely dyslexic (when it matters in context), but obviously that does not define him, any more than "diabetic" or "interoverted" defines people.  It's clear that it's one aspect of the person.

 

That said, when we're talking about a person with severe autism, the autism is going to affect all important aspects of his life.  If it matters in context, I would say "severely autistic" before I'd say "has autism and also these [autism-related] physical traits and these language issues and these hygiene issues and these social issues and these educational issues and ...."  - unless the context called for that level of specificity.

 

Of course I would honor the parent's preference if I knew it.  I know parents who call their kids autistic.  My cousin has always been referred to by family as autistic.  So it seems the term "autistic" is not off limits across the board.

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What's the difference between autism and Asperger's?

 

I thought Asperger's was a milder form and that that would be the proper terminology.

The information was second or third hand...so that could be part of it.

Asperger's is no longer a dx in the US per the most recently updated DSM. It's all Autism Spectrum Disorder. Asperger's was sometimes (and somewhat inaccurately) called high functioning autism.

 

Some kids who were previously dx with Asperger's would now be dx with ASD and some would be dx with Social Communication Disorder. There are some dx differences. Those who were dx with Asperger's could be high functioning or not so much. There are differences in language development between those with ASD and those who were previously dx with Asperger's.

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Of course I would honor the parent's preference if I knew it.  I know parents who call their kids autistic.  My cousin has always been referred to by family as autistic.  So it seems the term "autistic" is not off limits across the board.

 

That's an acceptable rule when the person in question cannot express a preference, but if they can, then their preference is what counts - not their parents'. I know we all think we know that, but sometimes it's easy to forget.

 

Disability is not a lifestyle choice like religion or homosexual behavior.

 

 

Crimson Wife, there is a Deaf culture. Your daughter may not be part of that, and may not want to be part of that, but you don't get to tell them that it doesn't exist and they can't self define. That is so incredibly offensive, I don't even know where to start. Your daughter is allowed to say she has a hearing impairment. However, it is still true that most Deaf people (big-D indicates member of Deaf culture) do not primarily see this as a disability but as an identity.

 

(Also, I notice you didn't mention race. That's not in any way a choice either, and yet, we don't talk about Obama as "having African ancestors".)

 

My autism, like every other aspect of my neurology, IS my identity. If you were to tinker around in my brain and make it function differently, I'd be like Phineas Gage - a totally new person. You cannot take away the way I think and still get the same person. It's just not possible. Various surveys have shown that the majority of adult autistics prefer identity-first language. It is really arrogant of you to say "It's offensive!" when you are disagreeing with what the majority of autistics want. Nobody asked you to decide this.

Edited by Tanaqui
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 In our family we identify as "autists."  We got that from Temple Grandin and are pleasantly surprised when we are misunderstood to be "artists."  

 

For a while, my middle son self-described as "asp-tastic."

 

I know these are not the terms you were seeking, but this thread is starting to hurt a bit.

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