In fact there is everything in a name and you are right People can learn through seeing (visually), hearing … Gone are the days (thankfully) when they were labeled “Severe & Profound” and “Behaviorally Disordered” classrooms but what remains are different types of settings for kids with special needs. It may well be that the diagnosis that the parent received for his child was “High Functioning Autism”. Its symptoms range from mild to severe. She may have been told by a therapist that being around peers who are typically-developing is a good thing for her child. And is your child without any challenging behaviors at all? but, it is not important for me to labeling my son. It’s common for parents to initially feel responsible in some way for their child’s autism and hearing this might exacerbate these feelings. So I took over 100 of them recently and asked them to describe their children to me in one word or phrase. She says to the girl’s mom, “I heard that girls with autism are much lower-functioning than boys. When my daughter started school, I realized that many of the words I, and school staff, were using didn’t match up in terms of definition. friends. But having a progressive disease with 25 hospital stays and feeding tubes, central lines, sepsis, an ostomy… that’s no sunny day in the park either. It is discriminatory and against the law to not treat a person with autism as an individual, it can also be seen as abuse. What parent amongst us has not had a shiver run down their spine at “meet and greet” with your child’s new teacher and classmates? Not many parents, however, are willing to ask them to change their terminology – as my colleagues will attest when they read this from me today. Autistic people may ask if you’ve heard about ID-first language, but everyone I know will always defer to someone else’s choice when talking about that person. For example, if your child has a school-to-home communication notebook, you may find that sometimes it comes home with a report using descriptors that you feel dont match those you use for your child. Anxious: overwhelming sense of uneasiness, worry, nervousness often in anticipation of something; behaviors include seeking excessive reassurance (but cannot be consoled), avoidance behaviors (such as refusal, stalling, shrinking back, diminished eye contact), seemingly unconscious motor behaviors (such as fidgeting, pacing, bouncing knee, drumming fingers, chewing on items, fingernails, or skin), engagement in self-soothing behaviors (e.g., thumb sucking, rocking, humming), may feel rapid heart beat, shallow breathing, “butterflies”. Thus, communication regarding progress or side effects can occur without misunderstanding. Rather than focus on an age level of functioning, parents will benefit more from hearing about their child’s unique strengths and challenges as it applies to what really matters to parents – that their child is doing his or her best and that he is getting the support needed to achieve this. My child is significantly affected by autism – my term for how autism affects her day to day. For example, if your child has a school-to-home communication notebook, you may find that sometimes it comes home with a report using descriptors that you feel don’t match those you use for your child. Labels that divide us, or pit us against each other (whether parents or providers), are not helpful. Think of the many terms we and others use to describe our kids and their behavior. The importance of communication even holds true for my husband and me as we “trade off” shifts with our daughter. And for the life of me, I can’t completely take one off for the other. It could be that this information is meant to inform next steps or begin a discussion of the child’s trajectory. Let’s look at the five scenarios and process each in terms of communication and also sensitivity. They are not perfect nor or they for everyone. Perhaps the parent in the first scenario wanted others to know his child has strengths and is capable. I know that “low functioning” doesn’t capture how she functions nor does it capture who she is. The social model and person centered approach are both strengthened … Autism, also called autism spectrum disorder (ASD), is a complicated condition that includes problems with communication and behavior. . She may still be coming to terms with autism and is feeling protective of her child. Don’t we find it offensive when a person’s race is used in a description of them? What the provider might have been trying to convey: The provider is likely trying to give the diagnosis in as factual a manner as possible. Financial assistance for medically necessary services is based on family income and hospital resources and is provided to children under age 21 whose primary residence is in Washington, Alaska, Montana or Idaho. i have been asked from many people whom i told about my son’s diagnosis – ‘really? For a dozen years now I have wanted to address the topic of . Even parents who may suspect autism prior to the evaluation will experience some emotion when hearing the “official” diagnosis. Caley and I encourage autistic people to be open about their diagnosis because in our experience there's a degree of protection from bullying that comes with the label, not to mention that openness can help educate others about autism. But that doesn’t capture it. Here are some examples of commonly used terms to describe behavior associated with autism: Activated: often used to describe a side-effect of medication; examples include being increasingly alert, agitated, restless, may appear to be “driven by a motor,” may be increasingly verbal, Affect: demonstration by nonverbal behavior/expression of one’s internal state of emotion through external means (e.g., facial expressions, tone of voice, body language), such as “heightened affect” or “flat affect”, Aggressive: physical expression of emotional upset directed at others; examples include hitting, biting, kicking, pushing, throwing items. Autistic people see, hear and feel the world differently to other people. We say that we ARE woman and we ARE American… but that doesn’t make us any less HUMAN, first, does it? I am honored to know a lot of parents of children with autism. Even if you could, it wouldn’t still be a cake–not the flour, not the rest of it. One parent begins with this, “I have a high-functioning child; he isn’t retarded”, and goes on to describe the very challenging behaviors that are impeding his son’s activities of daily living at home and school. This is why … Then a parent. You can’t take the autism out and have the same person. If you are autistic, you are autistic for life; autism … Let’s hope this statement was preceded by lots of praise for the child’s and parents’ strengths. Autism is a spectrum disorder that affects how a person perceives the world and interacts with others and their surroundings. Be nice. • Parents in a support group are introducing themselves and sharing a bit about their child with autism. If you are not the parent of a child with autism, none of these scenarios may ring a bell and you may not have any feelings about them one way or another. • A couple is sitting in the feedback session following the diagnostic evaluation of their three year old child. Many people affected by ASD develop little in the way of language skills, relying instead on non-verbal communication techniques. Physically directing someone’s hand to an object they want While this can cause communication difficulties, parents and caregivers often become quite adept at reading these non-linguistic communications throug… What the mom might have been trying to convey: She may be thinking that she has worked so hard on remediating her child’s challenges and worries that this will unravel in a classroom with kids with identified special needs vs. a general education classroom. It can involve a wide range of symptoms and … now, i still want to understand more about my son. Like me, you may wince and feel a quick stab in your heart . this is a great blog – much waited and right on. I agree with a lot of what you’ve written here, and I’m not as hard-lined about word choices as some, though the r-word and functioning labels do cross a line for me in almost any situation (unless someone doesn’t know, then it is always forgivable). Nor kids with Asperger Syndrome. • On a listserv for parents of children with autism, one parent new to the diagnosis writes of her concern that her child will be placed in her school’s contained learning center (CLC) where “nonverbal kids with bad behavior” will negatively influence her child. Thanks! It’s pervasive, and pre-DSM-5 it was even categorized as a pervasive developmental disorder. 'Learning styles' is a concept which attempts to describe the methods by which people gain information about their environment. If you have a child with autism, it may not be that simple. For example, what they called “manic”, I called “restless.” Or what they called “aggressive” (which was of great concern to me) was really more “agitated” than anything (no aggressive or physical behavior at all). Autism is a neurodevelopmental disorder that’s characterized by difficulties with social interaction and communication. By any other name would smell as sweet.” Would we/do we refer to a child with cancer as a “cancer child”? In summary, as parents, we often are the voice for our kids. It may take a few more words than lumping him into a category but others will probably get a better idea of just who your child is and will appreciate your sensitivity. my response to those people have been – ‘i have not been told about things like that from the professionals, so i am not 100% sure where my son is at in the spectum. Prosody is shown in the rate, pitch, stress, inflection, and intonation used in our speech. The cake would be something else entirely. i can 100% relate to the author, as a mother of a son with autism spectrum. Time is needed to let it sink in and to process what this means for a family. We wish there were enough supports to allow them to be amongst peers all day. This is also a time when parents need to hear from you that there is hope. This is very practical info that clinicians/physicians can employ to describe what we observe during office visits. What I also found as an overarching theme was that, while my child’s good mood or happy states were easier for professionals to describe, her upset or emotional behaviors (such as “agitated” or “restless”) were much more challenging to explain accurately. I have come to accept that I will never be able to not see and feel things with the eyes and heart of a parent and that this dual perspective can be valuable. What the therapist might have been trying to convey: The therapist reporting on the child’s testing likely sees this choice of words as merely conveying what she feels to be important information. That said, CLCs get a bad rap. Individuals with autism spectrum disorder often lack perspective-taking skills. Perhaps the parents have had trouble understanding why, despite much staff and parent effort, their child hasn’t made much progress. People use “Autistic” as an insult!!! what do I call this? These include a wide range of behaviors, such as using: 1. Remember that describing your child’s behavior so that someone else understands is more important than labeling it. Handling Real-World Issues Respect the privacy of real people. Autism Speaks silences the group they claim to represent! Explaining Autistic Social Differences Explain that autistic people may act a little differently, … my son is only one in the world. I wanted to take the time to explain, because your article is a great resource and I love your passion. Is there not always a child or two that we wish our own child would not be influenced by? How about we take the time to describe our kids – their strengths and challenges – not with ambiguous terms but with sensitivity and respect to all on that broad spectrum called autism? Comparing and contrasting our kids to others isn’t helpful to anyone. We use “have” for things that are temporary (“I have a cold”… but next week I won’t) or otherwise removable without changing our identities (“I have mitochondrial disease”… but I’d be the same me without it, and a very happy me!). for a long time, i wanted to know where my son is at in the spectrum. . By now you know I wear two hats: provider and parent of a child with autism. it is important not limmited by the labels. We use words to share information, be understood, communicate our wants and needs. – Allison, That was a FANTASTIC post- thank you for your beautiful sensitive writing He and I need to be on the same page regarding what types of behaviors have been present so that we can plan and make accommodations for her accordingly. It seems it is also a matter of sensitivity and putting oneself in the shoes of those on the receiving end of these terms. Crying and other emotive sounds 4. Many in fact will describe trying to look someone in the eye as literally being painful. My family is incredible and has done and still does so much for me… I don’t think I could thank them enough over a hundred lifetimes, so I try to support and encourage other families to perhaps pay it forward. She may have just been curious about differences she observed or perceived. That said, these benefits come with a steep price because as soon as someone says they're on the autism … Nor kids with blue eyes. The rhythm and melody of spoken language. In addition to the importance of using the right words with school providers, I came to learn how crucial it is to use the correct terms when speaking to my child’s medication prescribers, medical providers, and behavior specialists. I might have a meltdown now and then But overall, it’s much more of choice I make than a lack of getting the hard stuff. Agitated: emotional upset that typically follows (or precedes) a pattern of escalation; examples include pacing, loud vocalizations, crying, reacting to otherwise benign stimuli. Hi Lynn, this is a great article with a lot of good points! • At a social gathering for parents of kids on the spectrum, one parent of a boy is observing a girl with autism. But many parents are quite happy with their child’s CLC arrangement and would prefer it to a general education classroom where there are no supports in place for their child. There is also an implication that “high-functioning” = good while “low-functioning” = bad. One parent... • … Autism is a lifelong developmental disability that affects how people perceive the world and interact with others. If you are caring for someone with an autism spectrum disorder (ASD), whether a new diagnosis or an existing condition, there are support groups and information available to help you. ever). If you ask ten people what is meant by the term “high functioning” as it relates to a child with autism, you’ll likely get many different answers. Words matter .. words mean things i am glad to see this blog. Learn about the brain anatomy of individuals with autism spectrum disorder including how brain volume differs in children with ASD and various brain structures that are … These are simply terms used to describe kids with autism, right? autistic adult/people/child; person/child on the autism spectrum (note: this is informed by research, which indicates that there is a growing preference for positive identity first language, … Do any of these scenarios sound familiar to you? Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication, and behavioral challenges. Even for children who are verbal, it’s important for parents to communicate effectively with the numerous people who interact with our kids on a daily basis. I’d just like to encourage common courtesy and sensitivity to the receiver of your terms. When watching a movie or looking at pictures of people, practice these skills by asking … Honing your “autism vocabulary” will help facilitate better communication with the many people who are a necessary part of our lives. it does not help me to help my son better. This is a particularly difficult time for parents who are relatively new to the diagnosis and are trying to figure out their child’s trajectory. Extreme bullying against people with autism … I would think differently, experience the world differently, relate differently, I’d have different strengths and weaknesses (huuuuuge scatter in skills), I’d communicate and socialize differently, I’d wear different clothes (sensory issues make me very picky). : nobody is perfect, we all need help, it’s a two-way street) is often a first step in learning positive behavior. Thanks for this amazing post It takes great sensitivity to inform parents that their child’s level of functioning is far behind that of peers, particularly as our kids get older and the gap between them and their peers gets broader. Words Used to Describe Behavior: Autism’s Own Language. If you changed my gender, I’d be somebody different. She is first and foremost my child. If you live with autism, you know that it almost has its own culture, its own language. Does the testing assess all areas of the child’s functioning and are the results an across–the-board indication of the child’s current and future functioning? Example – A child falls down and hurts himself. It’s unlikely she intended to hurt anyone’s feelings but she was unaware of how raw the other parent was at the time when she was desperately trying to figure out where on that broad spectrum her child was. We all claim to value the truth, but almost all of us tell little … The disorder can make it difficult to participate in … Providers often use words that parents would prefer they not use. I’m an autistic adult and very active with advocacy. […], Lynn – One of the BEST reads on this issue. People on the autism … That which we call a rose thank you though.’ they may be trying to be nice to my son and me, the mother. If you are interviewing people … But now you know why someone might say autistic purposely… and that it’s not because I am autism on legs. It is very frustrating, though, because we are quite often told we’re wrong about ourselves! • Parents in a support group are introducing themselves and sharing a bit about their child with autism. Compulsive: persistent impulse, behavior/actions that one engages in as if compelled or driven to do so, rather than wanting to do so; examples include waving a piece of string, lining up items, wringing hands, counting items (e.g., floor tiles as they walk), engaging in routines in specific order. By pointing out what his child is/is not, he points out what he thinks others are/are not. Impact of autism on social interaction. Disoriented: unable to indicate one’s name (person), where one is (place), or what day/month/year it is (time), Disruptive Behavior: behavior that causes disturbance to others and/or to self; examples include throwing items, threatening to hurt self or others, blurting out, making loud noises, turning over desks/tables, hitting walls/desks, Distracted : unable to maintain attention/focus – shifting from one area of focus or topic to another; examples include being drawn to unimportant/irrelevant stimuli (e.g., noises in the hall), difficulty finishing a task, losing train of thought, Dysregulated: refers to mood upset when one is unable to regulate emotion and/or overcome with emotion; behaviors may include difficulty thinking clearly, physical or impulsive actions (e.g., hitting or pushing or limbs flailing), crying, loud voice, saying things not usually said (e.g., “I hate you!”), Echolalic: parrot-like repeating or echoing of words or phrases heard previously, such as repeating lines from a movie or commercial , which can be immediate or later (delayed echolalia) Parent:  “Do you want some juice?” Child: “You want some juice!” or Parent: “Go get your shoes.” Child: “Go get your shoes.”, Hyper/Hyperactive:  unusually or abnormally active; examples include talking excessively, fidgeting with hands/feet, squirming in seat, having trouble staying seated, running or climbing excessively, difficulty engaging in quiet leisure activities, “on the go”, appearing to be “driven by a motor”, Impulsive: prone to sudden, spontaneous action, observed to “act without thinking”, appears impatient; observable behaviors include blurting out answers, interrupting, intruding on personal space, touching things, grabbing objects, not responsive to consequences, Irritable: easily annoyed and provoked to anger or frustration; may be observed to “make a mountain out of a molehill”; seeming to be “uncomfortable in one’s own skin”, Manic: demonstrating a highly elevated mood, disorganized behavior such as pressured speech/hyper-talkative, grandiose thinking/ideas, racing thoughts, distractible (attention drawn to irrelevant ideas), body fidgets/moves about, excessively seeks pleasurable activities, highly goal-directed, Mood: a pattern of one’s internal emotional state at any given time; examples include happy, depressed, angry, Non-compliant: uncooperative, unwilling or unable to comply when asked to do a task or participate in activities, non-responsive to demands placed upon the child; examples include refusing, stalling, or engaging in the opposite behavior when asked to complete a task, Perseverative: characterized by repetitive movement or speech or sticking to one idea or task that has a compulsive quality to it; for example, a child becomes focused on obtaining a specific object and, despite attempts to engage the child in another activity, the child continues to seek out the object (often to the point of extreme frustration), Scripting: Using/overusing words or phrases heard elsewhere (rather than from original thoughts) in communication, such as quotes from books, movies, or a previous emotional event; can include pronoun errors (referring to self in second person); can include using the same intonation each time a phrase is spoken. 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