An education about talking about people with aspergers and autism. - Mothering Forums

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#1 of 21 Old 02-03-2014, 08:00 PM - Thread Starter
 
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I am not especially clear on how to discuss the label of aspergers, autism, and other related labels. I'd love of members could share what they know and how they feel about this. 

 

 

 

 

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#2 of 21 Old 02-03-2014, 09:11 PM - Thread Starter
 
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Also, I wanted to add that I'd appreciate opinions that are of a personal nature but I'd also like to hear if anyone knows sort of the most current, progressive language. 

 

Something like, "people first" "neuroatypical not disability" "aspie is an accepted and embraced term that can be used by people with aspergers but not by people who don't have a connection with the label"...or whatever. 


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#3 of 21 Old 02-03-2014, 09:23 PM - Thread Starter
 
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I found this article, which makes a lot of sense to me: http://www.autism-help.org/autism-politics-culture-community.htm


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#4 of 21 Old 02-05-2014, 03:59 PM - Thread Starter
 
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Anybody...?  


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#5 of 21 Old 02-06-2014, 07:38 AM
 
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Are you talking about a specific child or autism in general? I personally don't find using labels very helpful unless I am talking to somebody who understands them already. With lay people, I usually just describe the characteristics that are specific to the situation...e.g. He has sensory difficulties. He has speech delays. She is able to read at grade level. She does not enjoy loud places. He has a high activity level. She does not like to be touched. Etc.
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Something like, "people first"

I don't have anything specific to add about autism but if you don't mind me interjecting, this applies to all diagnoses/needs. I am certain people don't intend to be offensive but there is a phrase, which I haven't even heard until recently though I am told it was frequently used in the past, but rather than saying this child has "x" diagnoses they are calling the child the "x-baby". So I brought this up in a group I am in and most of them concured - use people-first language. A couple of people did point out that some adults with autism prefer to be called autistic, which in that case I think we need to respect that persons preference as well.

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#7 of 21 Old 02-06-2014, 11:13 AM
 
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I don't know. My ASD child is only 4 so he doesn't prefer anything. My older child with severe dyslexia hates it when someone refers to her as dyslexic. She says she happens to have dyslexia but does not like called dyslexic because she says dyslexia does not define her. I have only gone to two meetings of the only ASD support group we have in my area. It is run by an adult who has ASD. I got jumped all over for saying "my child with autism", apparently his preference is autistic. I use both terms really. shrug.gif


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#8 of 21 Old 02-06-2014, 01:56 PM
 
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My 8yo just told me he feels annoyed and sometimes lonely if i refer to his 'auditory processing issues'. I just want him to understand issues that can interfere with his learning in a neutral way,  and want him to be able to advocate for himself, by for eg, saying-"can you repeat that please? I find it difficult to follow  conversation in a loud room because of my auditory processing difficulties'.

 

My other son, who is gluten sensitive and turns into an adhd monster if he ingests it, is proud of having this food issue, and discusses it freely with people.  I think he impresses people with his knowledge of food and specific diets. He's 5.

 

I want both my kids to be proud of who they are, to be able to articulate it is clearly and matter of a factly to others when differences might become relevant.

 

Its work in progress with ds1. who feels lonely when i use this terminology :-(

 

...something to think about....

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#9 of 21 Old 02-06-2014, 02:13 PM - Thread Starter
 
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Are you talking about a specific child or autism in general? I personally don't find using labels very helpful unless I am talking to somebody who understands them already.

Autism in general and occasionally if I have a cause to speak about a specific child. I may want to ask if a child has autism but I'm not sure if it's better to ask if the child is autistic. Or I may have cause to talk about educational issues experienced by children with autism/autistic children. And, I don't know what is the best phrasing. I will say that the reason I'm asking this question now is because I rarely have cause to talk about someone's label but it does come up and I realized that I don't know how to phrase things. The article above does a good job of illustrating to me why this may be. It's likely that I'm hearing a lot of different language from people I trust and think are educated on the subject and that variety has created a subconscious confusion.

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I don't have anything specific to add about autism but if you don't mind me interjecting, this applies to all diagnoses/needs. I am certain people don't intend to be offensive but there is a phrase, which I haven't even heard until recently though I am told it was frequently used in the past, but rather than saying this child has "x" diagnoses they are calling the child the "x-baby". So I brought this up in a group I am in and most of them concured - use people-first language. A couple of people did point out that some adults with autism prefer to be called autistic, which in that case I think we need to respect that persons preference as well.

I was told that not all groups prefer people first language. The Deaf community, for instance, does not (as far as I know) prefer people first language. Probably for a similar reason that some autistic people reject that phrasing. I have also heard the phrase "aspie" which I am not sure about. It seems like maybe a term that I should not use but that is obviously ok for members of that community to use if they wish.

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I have only gone to two meetings of the only ASD support group we have in my area. It is run by an adult who has ASD. I got jumped all over for saying "my child with autism", apparently his preference is autistic. I use both terms really. shrug.gif

Interesting! Was there a good discussion in sensitivity training following this and/or some discussion from people in the group?

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#10 of 21 Old 02-10-2014, 08:55 PM
 
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Autism in general and occasionally if I have a cause to speak about a specific child. I may want to ask if a child has autism but I'm not sure if it's better to ask if the child is autistic. Or I may have cause to talk about educational issues experienced by children with autism/autistic children.

 

I cannot imagine a social context where I would ask a child's diagnosis, or suggest a specific diagnosis such as autism. To me, that would be very rude and inappropriate. (Inappropriate because it is an attempt to label a child without either the expertise or necessary evaluations).  Some of the kids I know who present similar to autism have labels like non-verbal learning disability, cognitive impairment combined with sensory issue, and a rare chromosome disorder. And for many kids and families, this is a private matter that they don't want to discuss with anyone who doesn't have a need to know.

 

In spite of living with a child on the spectrum and working with special needs kids (several of whom have diagnosis on the spectrum) I seldom refer to labels.  When I do, I usually refer to someone being on the autism spectrum, or to the specific diagnosis they have, such as PDD-NOS. So in your example, I suggest referring to common education issues experienced by "students on the autism spectrum."

 

Rather than using such heavy labels, I would stick to observable behaviors as much as possible-- "Sally seems most content when working on a project alone, and she doesn't like loud noises". "David enjoys talking about dinosaurs, but seems to have trouble listening to what others say". I think that focusing on where a child is and accepting them for who they are is far more likely to build positive relationships than trying to stick them into little categories (which is about all the labels are good for). 

 

I also think that taking social cues from people on the spectrum is thin ice -- just because *one* person prefers to be called autistic, it doesn't mean most people do. This is an older term, and many younger people (including parents) find it offensive. If someone you know prefers that term, then obviously use it with them, but don't it take it further than that. I think the guy was socially inappropriate in telling YOU how to refer to YOUR child. It's really not appropriate to jump all over someone for using people first language. He wants to define himself by his difference, and he can do that, but he doesn't have the right to dictate you do the same to your child.

 

But people on the spectrum are not known for their social graces. bag.gif

 

 

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#11 of 21 Old 02-10-2014, 09:42 PM - Thread Starter
 
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I cannot imagine a social context where I would ask a child's diagnosis, or suggest a specific diagnosis such as autism.

 

I can help you with that. We had some friends from my DC's very small school and I knew their son because he was an older classmate of my DC. Time went on and I kinda gathered that he has autism/is autistic. At some point talking to his parents it started to feel silly to me that I didn't just assume to know that.  But I didn't want to assume. So, I had cause to ask.  

 

But, you're right, I do rarely have a reason to ask something or be privy to something private like this. But, also, I do find the topic of autism to come up often and I'd like to know the most current term. For you, Linda, you feel autistic is dated?  I couldn't tell from my reading if this was actually a new movement to embrace that term. 


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#12 of 21 Old 02-11-2014, 07:53 PM
 
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I can help you with that. We had some friends from my DC's very small school and I knew their son because he was an older classmate of my DC. Time went on and I kinda gathered that he has autism/is autistic. At some point talking to his parents it started to feel silly to me that I didn't just assume to know that.  But I didn't want to assume. So, I had cause to ask.  

 

 

 

 

I think that the fact that you spent a significant amount of time with the parents and did not know their preference for how to refer to autism is a sign that they did not want to discuss it with you for whatever reason.

 

Personally, I'm a very private person, and I also feel that it is up to my DD whom to discuss her diagnosis with. I would find the question very rude, no matter how it was phrased.

 

I'm curious if you went ahead and asked, and how that worked out.

 

I have never, ever had cause to ask this question, and I've been in the special needs community for many years. There have been times when a parent was expressing concern about their child and I asked if their child has had an evaluation, and if so if they felt they got good information from it. That was to help figure out what they have done so far so may be I could make a suggestion about what might be a next step.

 

But I've never asked what another child's diagnosis is, or asked if they have autism. I just wouldn't. That would be just so I would know, and there's no point in that. There is no value for the other parent or their child.

 

I know how I felt for about the first 100 times that I told someone my kid is on the spectrum, and then had to deal with their response. I wouldn't put another parent in that situation. It sucks. Rather than trying to sort out the most politically correct way to ask, I recommend you step back from thinking its "silly" for you to not know. If someone wants you to know their child's diagnosis, they will tell you.


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#13 of 21 Old 02-12-2014, 04:35 AM - Thread Starter
 
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It worked out fine but I will consider your opinion, Linda. Thanks. 


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#14 of 21 Old 02-13-2014, 08:05 AM
 
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I have Asperger's and that's how I would phrase it.  My son is "on the spectrum."  I do agree with the other posters that it might not be... polite, exactly, to address it unless the parent is approaching you about it, though.  I'm not shy about discussing either my or my son's issues - if they're relevant to the situation.  "Relevant" being the key word.

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#15 of 21 Old 02-13-2014, 08:24 AM
 
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I'm wide open with DS1's dxs. Really all my kids actually, we have a lot of different diagnoses in this house! It has hurt us because sometimes that info has been used against my children or I. I'm not going to stop being open about it because I do want people to realize that a diagnosis is not a death sentence or  one size fits all. 

 

 

DD1 may have mental health issues but she is also a top nationally ranked athlete. DS1 may be ASD with a still unknown other significant condition but he is also a engaging little cuddle bug with an amazing smile. Everyone loves him and are always floored to hear about his ASD. 

 

 

I don't always know which kids aren't NT, sometimes it is easy to spot, other times, not so much. I will often strike up a conversation with parents of children that appear to me not to be NT. Mostly because sometimes you find support in unexpected places but also I live in a small town. The best way to find out info about a school, program, random therapist is from word of mouth. I don't come out and ask. I will share DS1's diagnosis and troubles and see how they respond. Most of the time they do share about their children. 


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#16 of 21 Old 02-13-2014, 08:31 AM - Thread Starter
 
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Yes, I do agree and didn't mean this thread to be specifically about asking an individual family if their child has a diagnosis of being on the spectrum. Perhaps my example shifted the focus a bit. And perhaps asking the question makes it seem as if I want to talk about this issue a lot. Not true -- but IME the subject of autism does come up from time to time in a variety of settings. I like to know the right words to use. 

 

Zenaviva, can you share how you feel about the word "aspie"?  It's something I've seen used and, although I don't ever plan to use it, I'm curious about how you feel about it. 


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#17 of 21 Old 02-13-2014, 11:04 AM
 
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It's not something I'd personally use but I wouldn't necessarily be offended by it.  The impression it gives to me is that it's a cutesy way of owning the identity label.  I find other labels much more telling of who I am as a person.  Like "mother of three", "avid reader", "writer", "student", "wife", "spiritual person" ... whatever.  I don't put that much emphasis on the Aspergers parts.  I view it as a condition I have, but it doesn't make me who I am.  I know some people do view their spectrum placement as totally essential to their identities, and it's often a positive thing.  To each their own.  :)

 

Similar to this is that I've been diagnosed with Hashimoto's recently.  (It's a thyroid issue, in case you're not aware - I wasn't familiar with the term before I got the diagnosis.)  Some people talk ad infinitum about their "Hashi's" and how it affects every aspect of their lives.  I *get* why they talk like that - it can be a pretty bad thing to have, and I have a comparatively mild case of it with fewer symptoms than a lot of folks.  But for me, I'm not intimate with it enough to give it a nickname.  ;)  I just kind of bring it up with the doctor when needed.

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#18 of 21 Old 02-13-2014, 06:32 PM - Thread Starter
 
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Super helpful and interesting, zenaviva, thanks!


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#19 of 21 Old 02-14-2014, 09:47 AM
 
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Thanks for the link to the article discussing this issue, ICM. When I read your original question, I was wondering how to say that, and it was expressed beautifully.

 

I am SO tired of politically correct language. Tone of voice and intent matters much more to me. I accept that some people feel strongly about certain labels, and I will happily accommodate preferences when I can. But there is really no keeping up with the tide.

 

My birth family is white, and my adopted sister is black (her preference of terms). My Mom, at 95, still uses the out-dated term Afro-American. But it is said with love and respect for my sister's heritage. Some people would prefer the term African American, or Person of Color, or whatever, but I can't see what difference it makes. My sister can say the N-word with humor and love, or a racist person can say the "correct" term with hate and disrespect - it isn't the terminology that is the problem.

 

My YoungSon, 17, somewhere on the Asperger's end of the spectrum, says he is autistic, and a nerd. Slowly, he is learning to live with his idiosyncrasies, not cure them. My Dad was never diagnosed, but today would be pure Asperger's (think of the stereotypical eccentric inventor). He was highly successful in life, but absolutely weird. I inherited enough of these traits that I totally "get" how YoungSon's brain works. In our family, autism is a matter of pride and humor - lovingly mocking our social faux pas, accommodating our needs. It is nice to have a label to define our quirks, to help us understand. When he was younger, some of my boy's symptoms were pretty limiting. I am not minimizing anyone's experience. But what words they use do not necessarily indicate a person's attitude.


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#20 of 21 Old 02-21-2014, 03:30 PM
 
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I'm very interested in this discussion because I struggle with how to introduce my own children when I need to explain their situation.

 

For example, last month we started attending a drop-in gymnastics class at our local gym club. I needed the supervising coach to understand that my son might need my assistance and therefore would I be allowed to go out on the floor if I saw he needed help? and also, to let them know that they can wave me over at any time if needed. So I started to say "My son is autistic...." but really, what does this tell the other person? Most people think "Rain Man" or something severe and really don't understand what a high-functioning kid looks like or needs.

 

I've tried leaving out any reference to it and just saying something like "Is it okay if I go out on the floor if I see my son needs assistance?" But this is usually met either with strange looks (he's 9, most kids that age don't need "help") or they misunderstand and think I'm referring to help on the equipment, which of course the coaches are there to do. It's difficult to explain it from the perspective of needs and behaviours because there are so many "he may have trouble waiting his turn, he may get too rough, he may not notice what other people are doing" etc....

 

I am having a hard time deciding how to phrase this. I don't like saying "My son is autistic" because it seems to suggest that this represents the sum of who he is. Instead, I prefer to say "a person with autism" but that sounds kinda strange "My son is a person with autism". Or there is "My child has autism" which makes it sound like a disease. 

 

My daughter is a bit easier because she doesn't require such supervision and her challenges are much more invisible. She is, however, quite proud to call herself an Aspie and has no problem with me referring to her as such to people. Honestly, she thinks it's pretty cool. I don't offer the information for no reason, but when I am around other parents whose children either act like they might be spectrum-y or who I know have autism (e.g. they are part of a local support group) then I am quite open with my kids' diagnoses so that the parents can see that I am also a special needs parent and they are also more likely to understand what those terms mean. And it hopefully makes them feel comfortable sharing their child's diagnosis in an atmosphere that won't be judged or misunderstood. 

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#21 of 21 Old 02-22-2014, 06:36 AM
 
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<<It's difficult to explain it from the perspective of needs and behaviours because there are so many "he may have trouble waiting his turn, he may get too rough, he may not notice what other people are doing" etc....>>

 

What about-"My son has some sensory issues...." vague enough, but gets the point across. Its also more accurate, because the term 'autism' is misunderstood by most people, whereas 'sensory issues' is easier to grasp, because it pinpoints the  relevant issue in the context of gymnastics.

 

My understanding of these labels, like autism, aspergers, adhd, sensory processing disorder, is that they are all 'on the spectrum'. they are a collection of symptoms from mild to severe. But the on the ground reality is, that symptoms differ from person to person, and that sensory issues take different forms, and become significant is different contexts.

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